History

Tuesday, January 29, 2013 6:26 PM CST

Since the last update Jon has been sick several times. First with bronchitis which nessitated the used of steriods for the first time since 1999. Then he had a stomach virus. Seems like it's been a rough winter for viruses for many.

He is still having major issues with getting depression meds in a good combo and dose. After much discussion with his psy doc we(us & doc) that Jon is NOT bipolar. He does have PTSD with significant depression issues. So adjusting meds to find a good combo and being seen more frequently is the plan as well as monthly therapy to learn better coping mechanisms.

Transplant health - Although Jon's cyclosporine levels have not been theraputic for over 10 yrs his team now wants his level to be at least at a low theraputic level. They have found that with many young adults transplanted as kids/babies that they sometimes go into serious rejection if levels are left low to long. Due to Jon's unique situation they definitely don't want him experiencing a rejection episode.

In other words, because we know he has at least advanced fibrosis, and maybe cirrhosis, a possible rejection episode could put to much stress on his liver and cause major issues. His transplant team still feels he will, at some point, require another transplant.

His labs from yesterday were great. Ast 29, alt 29, total bili 0.7, ggt 32, platelets 191, cr 0.9, INR 1.2. Since his cyclo dose was increased labs will be repeated in 2 wks. Aside from that he will remain on monthly labs and will return to transplant clinic in March.

Our prayers for Jon are:
1) Grow in his walk with the Lord.
2)Liver function remains stable.
3)Cyclo level get to theraputic range
4)Emotional health continues to improve
5)Finds employment

Friday, November 30, 2012 9:32 PM CST

Jon's recent labs were great. Ast, alt & ggt were all in the teens. T bili was 0.5 & creatinine 1.1. Blood counts were all normal too. So far it seems the med added in September has not adversely affected his liver.

His checkup this week with his psy doc included several med changes. One med was discontinued, one had dose change & still another med was added.So many changes at once makes me nervous for Jon. If there is a negative response how will we know which med caused it? So far after 4 days the only side effect is a slight decrease in appetitie.

He will continue with labs every month indefinitely. And actually since we don't know exactly how much scarring he has in his liver getting labs more often gives some peace of mind. At least we'll know quicker if his liver starts to show a decline in synthetic function. We will also be watching his albumin, clotting times, blood counts, & bilirubin.

Jon celebrated his 22nd birthday on Monday. Recently he got a puppy. He's always wanted a dog. He named him Buddy & he is a dachshund & Jack Russell mix. We all just love him. The 3 cats not so much. LoL.

Our prayers for Jon are:
1) liver function remains stable
2) emotional health continues to improve
3) grow in his walk with the Lord

Wednesday, October 17, 2012 12:25 AM CDT

Getting PTSD & bipolar diagnosis is taking an on going effort to get a good combination of medications to help Jon emotionally. He is now on one medication that has the potential to affect his liver. As a result he will be on a monthly lab schedule indefinitely.

Jon is still searching for employment. We really feel that having a job would help him. He needs a regular schedule. He hates being bored too.

His most recent labs were: bili 0.5, ast 20, alt 15, bun 14, cr 1.1. A ggt was not run

Our prayers for Jon are:
1) good medication combo & levels
2) employment
3)grow in his walk with the Lord

Thursday, October 4, 2012 12:48 AM CDT

Updating on both kids.

Jon- Recent liver labs were great. Bili 0.4, ast 17, alt 16, & ggt 23. He remains on cyclosporine as his only immunosuppressant. Omeprazole & zantac for his reflux as well as an antidepressant medication. Jon was very recently diagnosed as bipolar. We are hoping that with this diagnosis and another additional medication his emotional health needs will be met. I believe he also still suffers from PTSD relating back to everything he has been thorough due to physical health issues since birth.

Jen - please see www.caringbridge.org/visit/journeywithjen

Short recapture on Jen is that she has 2 strictures, one in the left lobe & the other one where the bile ducts connect to the bowel. She also has a stone in the bile ducts. The plan is to upsize the biliary tube in her liver/bile ducts to a #18 then wait 6 more months & pull the tube. The hope is that her bile ducts will stay open.

Please join us in prayer for both kids & for our family as we face these additional health issues with Jen & Jon. We are so thankful for all the love, prayers, & support we've received from our church family at Spring Place Baptist Church. 2012 has been a tough year but with God's help we will persevere thorough these " storms."

Tuesday, July 31, 2012 2:08 PM CDT

Since May Jennifer's liver numbers have been elevated especially her ggt. On June 22nd a liver biopsy was done which showed no rejection. On July 13th a PTC(dye test of the bile ducts) showed no strictures. Then on July 26th an MRI was done that showed normal blood flow to & from her liver. Still her ggt is over 800. After the MRI a medication was added to help promote bile flow. We are hoping & praying that with the addition of this medication her numbers will start dropping.

If her liver numbers stay elevated the transplant team will do another liver biopsy.

Please keep Jen in your prayers that her liver numbers return to normal soon.

Wednesday, April 11, 2012 11:23 AM CDT

I apologize for the lack of an update after Jon’s most recent EGD but I am finally ready to post. I had to take some time to digest everything before posting here. Thank you all for being patient

Recently I was able to understand that previous statements by 2 of Jon’s new doctors(adult team) about him most likely needing a second transplant in the future were very generalized statements. Statements made due to general statistics and NOT specific to Jon’s situation. I felt some relief.

However, after his recent EGD, I think I see where they are coming from. We didn’t get the news we were hoping for. His previous EGD was 2 ½ years ago and it only showed one small varix. The recent EGD showed one medium varix in one area of his esophagus and a “few” small to medium varices in another area. The doctor does not think the varices have ever bled or that they will any time soon. On the adult side they don’t generally do “routine” scopes unless there is a bleed. Jon was scoped because of his reflux & because his former pediatric hepatologist recommended scooping so that the adult GI doctors had a baseline on the condition of Jon’s esophagus. It was also discovered that Jon has had an increase in damage to his esophagus due to reflux issues. He may be developing Barrett’s Esophagus. There is an increased risk of esophageal cancer with Barret’s Esophagus. Jon will continue his current treatment of two different kinds of medication to help control his reflux. One of those meds was recently increased and we are hopeful that will help.

It is my belief that the EGD findings of varices fall right in line with the doctor’s thinking that Jon still has advance fibrosis in his liver or possibly even cirrhosis. If indeed he does have cirrhosis, it is very much compensated, as his liver function is completely normal at this time.

As a mom who’s been through “pre-transplant” three times I find myself not wanting to acknowledge all this but it seems like the evidence just keeps coming. With Jen, for years between transplants, the only symptom something was amiss was her enlarged spleen and slowly decreasing platelet count. Jon’s spleen is NOT enlarged but his platelet count generally stays just above normal & has for the last 4 –5 years. Prior to that he was always over 200.

After living through about 2 years of multiple major post transplant complications with Jen after her first transplant I went in to what I call “denial” land. I lived there for almost 7 years. This is how I can best explain “denial” land. It’s like there was a little man who lived with our family. I called him Mr Denial. He had a place setting at our dinner table every night. Every month when Jen would have labs and the results were “normal” it reinforced his place setting. Then every few years she would have a liver biopsy & it would show the scarring within her liver was very slowly but surely progressing. When those biopsy results would come back & the real condition of her liver was “in my face” it was like it kicked Mr Denial to the curb. But then the next month’s labs would come back “ok” and Mr Denial would creep back up on the lawn. Then the month after that he would be on the porch and usually by the 3 month of “ok” labs he was back in his usual place at our dinner table. I lived like this for almost 7 years. It was the only way I could live and stay sane. With this most recent news on Jon I’m trying to find “denial” land again

I think Jon is handling all this news well although he has not said much. He is trying to keep busy doing odd jobs here and there. He’s still looking for a permanent job whether full or part time. He is eligible to stay on Mark’s insurance until November 2016 so he has time to find employment with benefits. I truly believe a permanent full time job would help Jon in so many ways especially with keeping his mind off what could happen in the future with his health.

Our prayers for Jon are:
1) Spends more time in God’s word
2) His varices do not progress
3) His glucose issues do not get worse
4) Finds permanent employment
5) Stays healthy and happy

Monday, March 12, 2012 4:49 PM CDT

19 years ago today Jon received his liver transplant, his Gift of Life! We are so grateful to his donor family for making the decision to help others during their time of grief.

Although we don't know what the future might bring health wise for Jon, we do know that without his Gift of Life he would not be here today with us.

Please join us in celebrating this blessed day. Happy 19 Transplant Anniversary Jon.

Saturday, February 11, 2012 9:12 AM CST

First let me say that Jon’s labs were great. Praise the Lord! Now for the news we were hoping we would not get…. Jon saw the hepatologist that Jen sees and is the most experienced one on the transplant team. – This doc also said it is very likely that Jon will need a second transplant at some point. I did not go back with Jon to the exam room. He wanted to go by himself so I didn’t get to ask any questions. I can only guess that it is because of advanced scarring in his liver seen on biopsy. I guess it is believed that the very last biopsy results that showed improvement could have been a sampling error. The two prior did show advanced fibrosis (bridging) and on going inflammation. Previous pediatric liver doc couldn’t say why he had ongoing inflammation. I can only wonder if he now has cirrhosis or that’s what they are thinking??? It’s been almost 2 and a half years since his last biopsy.

Jon will be scoped next month to check on his esophagus to make sure he has not had more damage occur since last scoping. Also to check and see if he still has that one varix. I’m hoping and praying that there will not be more varcies or that one is not worst. I also think that because he has a varix that it is a contributing factor in why the docs think he will need a second transplant. He has NOT been diagnosed with portal hypertension as yet. A positive sign is that his liver and spleen are not enlarged. Jon does have very frequent issues with low glucose levels. Our local doc said several years ago that it was his opinion that it was due to the scarring in the liver. At the time of the scope I plan to ask specific questions on why they think he will need a second transplant in the future. I feel very comfortable with the hepatologist, trust his opinion and all, but I need more details. I need to be told specifically why. I hope to get those details on March 14th.

In the meantime I am trying to focus on the fact that his liver is clotting his blood normally, making all the proteins it should, and is keeping his ammonia levels normal etc. In other words his synthetic liver function is good. His liver is able to compensate for the scarring it has and is functioning normally.

Please keep Jon in your prayers that his health continues to remains stable. Also Jon had a job interview on Friday and will know on Monday if he got the job. Please keep him covered in prayers that he did.

Wednesday, December 21, 2011 2:50 PM CST

Merry Christmas Everyone!

Due to budget restrictions this year we’re not sending out Christmas cards, instead we are choosing to send a family newsletter by email. I hope this does not offend anyone. We are just doing our best to stay within our budget this Christmas season.

2011 started with Jen’s liver numbers rising. After spending almost a whole day in the Radiology department at Emory and 3 attempts to place a stent in her bile ducts the doctors called it quits. Their recommendation was to make another attempt with Jen under a general anesthetic. However her liver numbers started dropping so her liver doctors decided to watch her numbers rather than have her risk possible issues with a general anesthetic.

Since then Jen’s medications have been greatly reduced, especially the medications that suppress her immune system. Since June she has been off steroids! After the fiasco in 2006 when steroids were discontinued we didn’t think she’d ever get to even try coming off much less be successful. Her cellcept dose is also down to a lower dose and her prograf levels are being maintained at lower levels too. This is so exciting because Jen (since 2nd liver transplant) was considered an aggressive rejecter.

In May as part of the Georgia Transplant Foundation's “Jump Start” program Jen started a 16-week apprenticeship Certified Nursing Assistant position. After finishing the apprenticeship she decided that was what she wanted to do for a career. With a friend’s help with fund raising for tuition and fees in September she started her training at Covenant School. She graduated November 20th at the top of her class! As Jon yelled during the presentation of her award “Way to go Sissy!” Currently she is waiting for a testing date for state certification. After receiving state certification she will be ready to look for employment.

Her liver numbers did take an upward spike in October but we think it was due to a viral illness since they came right back down in November. Her magnesium and potassium levels are running lower than usual and are being monitored so far the usual doses of oral replacements are keeping levels within an acceptable range; low, but acceptable.

Jon got sick in March from drinking river water while kayaking. After an ER visit and checkup with primary doctor he was admitted to a local hospital for fluids and IV antibiotics. This was Jon’s first admission for an illness in 13 years. He scared the heck out of us the first night inpatient when his blood pressure dropped so low. I shudder to think what the outcome would have been if he had not already been inpatient and receiving lots of fluids and IV medications. I don’t think he’ll be drinking river water again. In March Jon also celebrated 18 years since receiving his Gift of Life.

In April we had some really bad weather but didn’t have any damage to our house. Only 25 or so miles north of us people were not so lucky. Tornados torn thru the Ringgold Georgia area and demolished many houses and businesses. As part of the Georgia Baptist Association Jon went with our Pastor Paul to help with the clean up.

In June Jon’s transplant care was officially switched over to the Adult transplant team at Emory. We did get an unexpected opinion from the new doctor as to the amount of scarring in Jon’s liver. The doctor stated that he thought Jon’s chances of needing another transplant at some point in his life were “pretty good.” After getting over the shock of that statement we’ve to seek a second opinion from another doctor on the team, one with more experience. This will take place in February 2012. In the meantime no medication changes were made so Jon remains on an extremely small dose of cyclosporine.

Jon continues to work on getting his high school diploma certificate as well as look for full time employment. He does work on a part time occasional basis with a gentleman from our church.

Mark continues to work at Beaulieu of America. Even though he(all employees)were given a 10 percent pay cut in August, we are grateful that he still has a job. The unemployment rate in our area is higher than the Georgia rate, which is even higher than national. Mark enjoys singing in our Church choir and is doing well health wise. This summer he went on a mission trip with 2 others from our Church to Costa Rica. They went to assist with some renovations to make a Girl’s home a safer place. He said it was a joy and a blessing to be able to help out.

As for me, I still work in our Church nursery on Sunday and Wednesday nights and help with Wednesday evening dinner. I was diagnosed with ulnar nerve entrapment(think carpal tunnel of the elbow), arthritis in my hands and need both knees replaced. I think I just plain am getting old. Ha Ha.

We hope that you all have a very Merry Christmas and a Happy New Year.

With love,

Mark, Karen, Jen & Jon Lincoln

Saturday, November 26, 2011 8:48 PM CST

Today Jon is @1 years old! I can't believe my baby is legally an adult.

HAPPY HAPPY BIRTHDAY JON!

Tuesday, November 22, 2011 11:53 AM CST

Jen graduated from CNA school yesterday. It was a very moving ceremony and we are so so proud of Jen. She graduated at the top of her class academically. As Jon yelled during the presentation of her award "Way to Go Sissy."

Next step is to get her state certification test scheduled and taken. After that she can start looking for employment and begin her career.

We thank you all who've been thinking of and praying for her during her schooling. We are so very grateful to all who donate $ or items to fund raise for her schooling expenses. She would not have been able to attend school without your help. A special thanks to "Aunt Liz" for your very hard work. Love you Liz.

Tuesday, October 25, 2011 8:03 AM CDT

Jon, Mark and I recently spent the afternoon hiking on Ft Mountain. The photo above was taken up near lookout point. It was a beautiful day. Fall has finally come. The trees were fantastic. The 3 of us had a great time spending time together.

Jon has been working on a occasional part time basis for a friend of ours from church. This week he asked Jon if he wanted to work on a regular basis. Jon was elated and accepted. No benefits since it is a small farming type business but this will give Jon work experience and a work reference for later on down the road when he needs to find a job that does offer benefits. In the meantime Jon can stay on Mark's insurance until his 26th birthday. That gives him 5 more years to gain experience, finish his high school studies and get his diploma and possibly some college courses at night if he decides to pursue college. This is such a huge boost in confidence for Jon. We thank you all who've been praying for him. Praise the Lord!

Jon passed his learner's permit test and is doing well with driving. He is now working on gaining more experience in heavier traffic and night driving.

Our prayers for Jon are:

· Grows closer in his walk with the Lord
· No further liver scarring
· PT returns to normal
· Varix stays the same or completely goes away
· Finishes school work to earn high school diploma
· Does well with his job and learns some new skills
· Gets his permanent driver’s license

Thanks for stopping by!

Sunday, October 16, 2011 2:37 PM CDT

Jon had labs this week. We have a praise report(thank you for your prayers)surprisingly his platelet count was just over 200. He has not run this high in years. Definitely happy dancing over this! His PT, which is one of the labs that shows how fast his blood clots, was a little on the high side(takes longer) but his INR was still normal. His liver numbers are great and his kidneys are happy too. Cyclosporine was below a therapeutic level but he has been run at that level for 8 or 9 years. He is considered immuno tolerate. Basically it just means his body and his transplanted liver are getting along well together. Jon will stay on his current lab schedule of 3 months apart.

Our biggest concern for Jon is finishing his high school work and finding a job. Unemployment in our area is still over 12 percent. One of the major employers in our area recently announced that they are shutting down another one of their plants and will layoff 270 people. So as hard as jobs are to come by here now it is even harder.

Jon took and passed his learners drivers test. He is doing well with his driving. He should feel confident enough in the next month or so to take the test for his permanent license.

We thank each of you for stopping by to check on Jon. It would really encourage him if he received messages in the guest book. The job situation is very discouraging for him and school is tough going. Our prayers for Jon are:

· Grows closer in his walk with the Lord
· No further liver scarring
· PT returns to normal
· Varix stays the same or completely goes away
· Finishes school work to earn high school diploma
· Finds permanent full time job with benefits
· Gets his permanent driver’s license

Thank you for stopping by to check on Jon.

Sunday, September 11, 2011 3:30 PM CDT

At some point this month Jon will get labs done locally. We really don’t expect any surprises there. He already has his annual appointment with the transplant team and dermatologist already set up for June 2012. At that appointment we will discuss whether or not Jon needs to be scoped for his reflux. His current meds for reflux seem to be controlling it very well. Jon will remain on his current lab schedule of 3 months apart.

After getting over the shock of the new transplant hepatologist’s(June) talk of Jon possibly needing another liver transplant at some point if he lives a normal life span we’ve decided that may or may not come to be. I also think that given that this doc had never seen Jon and only had medical records that were not very detailed or some even up to date that his statement was a very generalized one. Some how not a lot of Jon’s records from his previous pediatric transplant team got sent over to the new adult team so that put the new doc at a disadvantage too. In additional I know the doc was only thinking of a previous biopsy report rather than the very latest one Jon had done. I did give him a copy but it didn’t seem to change his thinking about Jon’s long-term health.

BUT Jon has completely normal synthetic liver function. That means his liver makes all the clotting factors, proteins, and filters his blood, as it should. His platelet count is down some, tittering on the low edge of normal but still normal. And a big plus is that his liver AND spleen are normal in size and shape and both are soft as they should be. So unless his physical exam and/or labs start to change we are NOT going to worry about the possibility of a second transplant at this time.

Our biggest concern for Jon now is finishing his high school work and finding a job. Unemployment in our area is over 12 percent. So jobs are hard to come by, especially with no previous experience. He recently learned how to drive a forklift so hopefully that will help him in his job hunt. Jon is also planning to take his driver’s permit test this coming week with the hopes of getting his permanent license by the end of the year if not sooner.

We thank each of you for stopping by to check on Jon. If you are so inclined please leave a message for him in the guest book. The past 5 years have been especially difficult for Jon emotionally. He could really use the encouragement. Our prayers for Jon are:

· Grows closer in his walk with the Lord
· No further liver scarring
· Liver function stays normal
· Platelet count stays in normal range
· Varix stays the same or completely goes away
· Finishes school work to earn high school diploma
· Finds permanent full time job with benefits
· Gets his driver’s license

Saturday, June 18, 2011 7:25 AM CDT

Jon’s first checkup on the adult side went pretty well. Labs are great. Jon will stay on a 3-month lab check and doesn’t have to return to clinic for a year! We are happy dancing over that for sure.

Changes are that Jon will need a yearly head to toe check of his skin by a dermatologist. Labs are somewhat different with the adult team. They check magnesium and cholesterol with each set of labs.

So what took us by surprise was the talk of sampling errors with liver biopsies. Jon’s last biopsy was Oct 2009 and after a varix was found during an EGD I was very concerned that the liver biopsy results would show cirrhosis. Several days later when the results came back it showed no significant fibrosis. The previous two biopsies had shown advanced fibrosis so this seemed to be an improvement. We were relieved but in the back of my mind I knew of the possibility of sampling error. The piece of liver that is taken during a biopsy is very small compare to the whole liver so it could be a section that is less scarred, or more scarred for that matter. The doc said Jon’s chances of needing another transplant if he lived 40 or 50 more years were “pretty good.” He said they just don’t know how long transplanted livers can last.

Statistics can be so misleading sometimes so we are not dwelling on this. Jon has beaten two liver diseases and now has normal liver function. He is on such a small dose of cyclo that his previous transplant team(pediatric) did not consider him immunosuppressed. We did notice that not all of Jon’s most recent records were sent over to the adult team. I shared a copy of the last scope & biopsy I had on hand that showed the improvement. So it is a possibility that as the new doc gets to know how Jon’s body is so tolerate of his liver that the talk of another possible transplant will stop.

Overall the visit went very well. Jon really liked the doc and was very comfortable with him. I think that with Jon being a new patient that the doc is being more cautious with his recommendations and instructions for Jon. But that’s a good thing at least we know Jon will be followed well by his new team.

So our prayers for Jon are:
-no further liver scarring
-liver function stays normal
-platelet count stays in normal range
-varix stays the same or completely goes away
-finishes school work to earn high school diploma
-finds permanent full time job with benefits
-grows closer in his walk with the Lord

Thursday, May 19, 2011 6:09 PM CDT

Jon saw the cardiologist yesterday, had a chest x-ray and was given orders for labs and a stress test. Labs were drawn this morning after he fasted but won’t be back for several days. Among the tests were liver, lipids(cholesterol), blood counts, d-dimer and some others I can’t remember. The stress test will be next week and is for 45 minutes on a treadmill. Jon got very winded trying to play tennis the other night so I’m not sure he’ll be able to do the required 45 minutes.

His exam with the cardiologist was unremarkable meaning the doc didn’t hear anything alarming with Jon’s heart. Given that Jon has chest pain and his history of transplant and all the meds he’s been on over the years the doc felt it necessary to do further testing. Jon will follow up with the doc in 3 weeks. All the lab results, chest x-ray and stress test results should be back by then.

We thank you all for asking about Jon and for praying for him too.

Tuesday, May 17, 2011 4:37 PM CDT

Jon’s checkup with his local primary doctor was supposed to be just a follow-up on his GI illness back in March. Thankfully all those issues have resolved so no further follow-up is necessary in that respect. Jon has an area of infection on one of his earlobes that the doctor lanced. To help heal & prevent a reoccurrence an antibiotic was added to his medication list, thankfully, only for 3 weeks.

Dr P did say that Jon needs to follow up with his transplant team about his reflux and swallowing issues. We do expect an upper endoscopy to be scheduled soon after his first checkup with the adult transplant team next month.

What we did not expect was the EKG done in the office and a referral to a cardiologist. EKG showed possible right branch bundle block. Dr P said sometimes this is a common thing and might not need anything to be done. However since Jon has been having some chest & left arm pain and has a history of being on steroids since transplant he felt it best to have a cardiologist rule out heart issues. While we are concerned we are remembering that about 5 years ago Jon had a cardiology workup due to fainting episodes. An EKG, echocardiogram and 24-hour holter monitoring was done and the final diagnosis was vasovagal syncope. But he did not have any sort of chest pain at that time so we are just not sure what is currently going on. We do wonder if it could be related to his severe reflux and if he has had strictures form in his esophagus. He is scheduled for tomorrow afternoon with a cardiologist so hopefully he will get some answers or at least rule out heart complications.

Our prayers for Jon are:

- no underlying heart problems
- earlobe infection clears quickly
- continuation of education
- find permanent employment with benefits

Thanks!

Monday, April 25, 2011 2:02 PM CDT

Monday, April 25, 2011 12:55 AM CDT

Due to privacy issues we will soon be password protecting the kids page. If you wish to continue to follow Jen & Jon, and we hope you do. please email me for the password.

threelivers@windstream.net

Thursday, April 14, 2011 11:01 PM CDT

Jon had his last CHOA transplant clinic visit this week. In June he will transfer over to the adult transplant clinic at Emory and join his sister who transferred over several years ago. He had mixed emotions about the change. He was ready to be treated more like an adult but not ready to leave behind his favorite doctor. Jon has known Dr R for almost 9 years. He loved his way of cutting up and joking around. It really put Jon at ease from the first meeting. I don’t think Jon has ever trusted a doctor more. As Jon said yesterday “ I trusted him with my life. I will miss him.”

He saw Jon thru some difficult times several years ago when Jon went thru treatment to overcome a second liver disease. We could always count on him to follow thru with labs, meds or anything else. Once, several days before Christmas, he kept trying to find lab results that we all thought were lost and more blood would need to be drawn and tests run again after Christmas. Dr R spent time that day tracking down those results and was able to give us the best possible news. The news that the medications were working to help save Jon’s liver from further scarring and possible failure. That news was the best Christmas present we could have ever gotten that year.

On our way out of CHOA yesterday we got Jon some gummy bear candy. Getting these gummies on our way out of the hospital was a tradition. It will be another thing Jon will miss about Children’s. For me as a mom this marked 25 years since Mark and I have had our kids care at CHOA. It all started when Jen was evaluated in April of 1986. Leaving CHOA was somewhat sad but to also think it was because they grew up and were going over to adult care. Grew up…. Thanks to their organ donors they did.. grow up. Good bye Children’s Healthcare of Atlanta. Thank you for 25 years (on and off) of caring for Jen & Jon so they could grow up.

Friday, April 8, 2011 12:28 AM CDT

Jon is doing much better but is still having some abdominal pain. We are not sure if this is something that will get better on it’s own or he will need some type of intervention. He is rescheduled for pediatric transplant clinic at CHOA this coming Wednesday. This will be his last clinic there. He will then transfer over to Emory for transplant related care. We will see what the docs at Emory say as far as what type of further testing needs to be done.

We did not hear back from our local doctor’s office on whether Jon’s tested positive for any type of parasite he might have ingested from drinking river water. With no word back we are left to assume the testing was negative and his recent illness was a viral thing. Whatever it was it sure got him good and sick.

We still have plenty of cookbooks if anyone is interested. They are now just $10 each plus $2 shipping if we need to mail to you. Very quickly the bills from Jon’s recent admission will start rolling in and if we could sell cookbooks that would really help us meet these bills. Please let us know if you’d like one. Our email is threelivers@windstream.net.

Jen is doing well. Her numbers were down on the last lab check. She sees her usual transplant doc on the 21st and will have labs again too. Still waiting on final approval for an apprenticeship at a local hospital. Please keep her in prayer that this will work out and hopefully also led to a permanent job.

Thanks for stopping by and checking on Jen & Jon. If you’d like you can leave a note to them in the guest book to let them know who stopped by.

Sunday, March 27, 2011 2:52 PM CDT

As many of you know from facebook & the last update Jon was recently inpatient. He started with vomitting and diarrhea on Monday with fever. Normally with him we try to ride this kind of stuff out if his fever is not too high(over 102)and he can keep meds and fluids down. We were out of our comfort zone when his temp hit 103.9 axillary. To the ER we went. Fluids & zofran were given. And I do mean fluids were pushed. I’d never seen an IV pump run at it’s max of 999cc/ml an hour. Strep, mono, & flu were negative. Blood cultures were done but were not back before discharge. After we’d been there about 6 hrs his temp came completely down to normal so he was discharged with diagnosis of gastritis/stomach flu. As luck would have it he started feeling really bad on the way home. We only live 25 minutes from the hospital but his temp was back up to 102. Puking, diarrhea, just the whole bit. We rode it out until 1pm then took him into our local doctor’s office. We saw a partner who had not long ago finisedh his internal med fellowship so this was definitely out of his comfort range. He called transplant & spoke with them. That’s when we learned that Jon’s cyclosporine dose and levels are so low(have been for several yrs)that they don’t really consider him immunosuppressed and they were comfortable with Jon being treated locally.

So Jon was admitted at local hospital and fluids started. Antibotics vacomycin and zosyn were alternated. His temp was only 100.8 on admission. It had been 103 just 30 minutes earlier in doc’s office. Jon was still having frequent bouts of diarrhea but no more vomitting. That night at midnight when his vital signs were checked I got the heck scared out of me. His bp was 80 over 40. Tech told nurse who turned up the fluid rate and shortly thereafter his bp was on it’s way up. Needless to say I spent the rest of the night using my cellphone watching him breath and checking his pulse. I shutter to think what might have happened had he not been inpatient and already on IV fluids and big time antibiotics.

Early the next morning I was checking facebook and saw where our Pastor remarked on my page that maybe Jon shouldn’t have drank water from the river. I did not know about that. So doc was notified and IV flagyl was added to the two meds already being given and stool sample sent to lab. A CT of his abdomen was done and showed quite a bit of inflammation in his intestines.

Jon was discharged on Thursday with instruction to take it easy and drink lots of fluids and no high fiber foods. He is to follow up with local doctor in 2 weeks. He is also follow up with GI on transplant team for possible EGD and colonoscopy due to the amount of inflammation seen on the CT scan. Primary doctor is concerned about chronic issues with his GI system, not just this current illness.

Jon had been scheduled for his last transplant clinic visit at CHOA this past Wednesday so now we have to reschedule that. We are hoping to reschedule in the next few weeks so he can get on over to the adult team at Emory soon after to follow up with their GI. We are pretty sure the pedi team will want him to have any further procedures on the adult side.

Tomorrow will be a week since all this started and he is still having abdominal pain and soreness. No more fever but he is still feeling weak and tires easily. We hope to hear on Monday whether or not stool cultures show giardia or cryptosporidium. Reguardless, his doctor is concerned about the amount of inflammation shown on the CT scan. So we will follow up to make sure there are no long term side effects or something chronic that may need further treatment.

This was the first time in 13 yrs that Jon had to be admitted for a physical illness. He’s had liver biopies with overnight stays but those were planned. We hope to go for a long long time again without another illness this serious. We are praising the Lord for keeping Jon safe during this illness and for giving the local doctor the foresight to admit Jon rather than just send him home to “let it run it’s course.” We thank all of you who were praying for Jon and we asked that you continue to pray for complete healing and restored health.

Thursday, March 24, 2011 8:23 AM CDT

We are waiting on discharge orders for Jon as I type this. He has greatly improved since admission on Tuesday so he is going home on oral antibiotics and to rest.

Still don't have definitive diagnosis. Some tests are still pending. CT scan showed inflammation of intestines. Could be (1)something viral, (2)bug he picked up in river water, (3)possible GI issues. Jon is to follow up with GI on with transplant team to see if they want to pursue further testing for GI issues. If he just continues to get better and does not "relapse" my thought is that GI/team won't due further testing. If the cultures come back and show something then we'll know cause and won't need further intervention. Cultures just take time to come back. Jon's primary doctor just wants to make sure nothing is missed since Jon has a complicated history.

We were just thinking the other night when he was admitted that it had been 13 years since he was admitted for a physical illness. He has have several overnight admission for liver biopsies but those were planned. Jon has been so blessed in so many respects. We are praising the Lord!

Thursday, March 24, 2011 8:23 AM CDT

Tuesday, March 22, 2011 4:59 PM CDT

Jon has been sick since yesterday with vomitting, diarrhea, body aches, and high fever. We spent about 7 hours in the ER temp went down so he was discharged. Almost as soon as we got home temp came back along with all the other symptoms. Visited his local doctor who admitted him for IV fluids and broad spectrum antibiotics.

We are hoping he is better and discharged soon. He has had liver biopsies and stay overnight for those but other than that he has not been sick enough to require an admission since 1998.

Tuesday, March 22, 2011 4:48 PM CDT

Tuesday, March 8, 2011 6:57 PM CST

Sorry to take so long to update again. Jon continues to do well. He only gets labs every three months and is due next week for labs. He will see his transplant at CHOA on the 23rd of this month for the last time. Just before seeing them he will tour the adult transplant clinic at Emory and get his first appointment all set up. We don't anticipate any changes to his lab schedule with the change in transplant teams and think that he will only see the adult team once a year since he is so stable.

He is still attending classes weekly to earn his high school diploma. Please keep him in prayer that he continues to move forward in his life.

Jen still needs prayers too. She had an MRI in January that showed a bile duct sticture. There was an attempt to place a stent in her bile ducts but it didn't go well. It was painful and unsuccessful. A second attempt with Jen being under general anesthetic was scheduled but her numbers went down some so the docs wanted to wait and see how she did. There are risks anytime anyone goes under a general anesthetic and the stent placement has it's own risks too.

However, last week her numbers took a bump up again. It was a enough of a bump that her coordinator wants labs repeated next week instead of waiting until the end of the month when she is already scheduled for labs and to see the doc. If next weeks labs are about the same or better then they will be repeated again on the 28th when she sees the doctor. If her numbers on the 16th are worse then she’ll see the doctor sooner and he will decide from there when to schedule a liver biopsy and bile stent placement.

So at this time it does not look like that the recently addition of a new medication, urso, is helping reduce her ggt. It does appear that the addition of benadryl is helping somewhat with itching though. This puts her up to 12 daily meds.

We are hoping and praying her numbers will settle back down to normal and no further treatment will be necessary. She is applying to Georgia Transplant Foundation's Jump Start program to try and find an internship to get training for a unit clerk position. This program is for 16 weeks and we are hoping that that will give her enough training to be successful in locating a job locally.

We so appreciate your prayers for both Jen and Jon. Thank you for stopping by.

Sunday, January 23, 2011 11:59 AM CST

It had been quite a while since I've updated. Lots of new things going on in our family's life.

In December we moved into our house shortly before Christmas. It snowed on Christmas Day! We had a beautiful white Christmas in our new house. We live in Georgia and have for most of the kids lives except for about 9 years in Texas. So this was our very first white Christmas. It was also the most snow we'd ever seen. Well... that is until about 2 weeks ago. It snowed AGAIN! We got 8 inches of snow. We were snowed in for several days. It's now 14 days later and we still have a bit of snow on the ground around the driveway. It's been exceptionally cold for our area. And they are forecasting a chance for more this coming week. Wow, what a winter we are having.

Liverwise Jon has continued to do well. Liver numbers are all normal and he is only on one medication to prevent rejection. In March he will have his last checkup at his pediatric transplant center. Jon is 20 yrs old now and it time for him to switch over to the adult center where Jen is also followed. Mostly likely he will continue getting labs every 3 months and be seen by the adult team once a year.

My baby is 20. Sounds so strange to say. We are so thankful to his donor family for giving him the Gift of Life so he could grow up. Jon has started classes to finish his high education. He is excited and that is wonderful to see. He is deciding what he wants to do after he gets his diploma. Currently he is thinking of attending Dalton State College but is not sure exactly what he wants to study. He is also looking for steady part time work.

It's been a tough last few years for Jon but now we can see the light at the end of the tunnel. We learned that long term chronic illness can have some emotional side effects. I think this is an issue that more transplant teams should be on the look out for and have the staffing in place to identify and deal with. Jon's pediatric team last year started a teen clinic which I think will be a great and much needed addition to help teens who've received a transplant.

Jen now has her own caringbridge page. www.caringbridge.org/visit/journeywithjen.

I will give a brief update on Jen since so many of you guys still have this site as your go to site for both Jen & Jon. In the future I may start a separate site for Jon too. I will let you guys know when I do that.

Jen is now 8 years post second transplant. She is on 10 meds and usually has monthly labs and sees her transplant team every 4 months. However she is currently experiencing some health issues. Her liver numbers are elevated. Her Ggt, for a while now, has been going up and down with no rhyme or reason. Jan 17th it was extremely elevated at 410 and also her ast & alt were up some too. She had labs repeated at Emory and saw one of the hepatololgist on the 20th. Her number were better but ggt was still over 200. An MRI of her liver, blood vessels and bile ducts specifically was done yesterday(1/22). We don't have results yet. If the results are normal and Jen's numbers are still up then a liver biopsy will be done.

She is still experiencing long term side effect from several meds. Back in November her doctor added several new meds to help with the side effects. We are seeing a slight improvement with the fluid retention. She was on a schedule to to try wean off steriods but that schedule is at a stand still with the current liver numbers. But at least she did get a slight dose reduction.

Please keep Jen in your prayers that her health improves and Jon that he continues to move forward with his studies and stays healthy.

Thank you for stopping by and checking on the kids.

Friday, October 15, 2010 6:35 AM CDT

Wow, I didn’t realize it had been so long since I updated. So Jen’s issues back in Aug/Sept took some time to figure out. She was out of work for two weeks while everything was being ortsed out. But it seems to be reflux, most likely due to steroids and other medications. Side effects from meds of course what else. Guess what the solution was? Yep, another medication was added. She is up to 9 meds per day now. Latest labs for Jen were good except glucose which is remaining elevated. But at least she is back at work.

Jon is still having some difficulties. I won’t go into details but he needs prayers. He recently had his routine & yearly labs. Most were normal, some were just out side of normal range and of course the lab didn’t run all tests ordered. But all in all he is stable and his liver seems to be happy. We are praising the Lord.

Jon also recently took the first step in getting his high school education completed. Big step for him and we are so pleased & proud of him for taking this step.

Thank you all for taking the time to stop by and check on Jen & Jon

Sunday, August 29, 2010 8:26 PM CDT

Just an update on what's going on with Jen. She's had 9 sticks, 2 IV's, 6 EKG's, 1 stress test(chemical), 2 ER visits, multiple labs, 3 chest x-rays, an overnight stay for observation. All that and we still don't have any real answers as to what the real problem is. So far all we know is that her heart is fine. She's been referred back to her transplant team for further evaluation.

Her health is our biggest concern but she's also worried about her job too. Please pray that her docs can quickly discern what's going on & fix it so she feels better and doesn't lose her job. She's doing well with her job and loves it.

Thanks for stopping by.

Friday, August 6, 2010 4:08 PM CDT

Jen seems to be tolerating the lower dose of cellcept. At her recent clinic & lab check all her liver #'s except one were great. So she continues with no med changes for now. Her biggest issues is her glucose. Her fasting levels have on the last two labs been elevated. Her doc wants her to try hard on the dietary changes and to lose weight and see if her levels come down. If not then she'll be back to insulin again. We are hoping and praying with these changes she can avoid the pain, trouble and major expense of insulin.

I've been forgetting about the updates on medical expenses as they occur during 2010. I'm in the process of getting updating but it looks like we've paid out over $6600 so far this year for medical and medical related $.

Thanks for stopping by.

Thursday, July 1, 2010 8:24 PM CDT

Well, the neurologist thinks the seizure was probably from Jon coming off the wellbutrin without weaning. Although Jon was only on it for 23 or 24 days, he thinks the fact that Jon was on a higher dose(300mg) stopping cold turkey may have caused the seizure. It was stopped this way due to the side effects of heart racing, chest pain & shortness of breath so the psy doc felt it was necessary to discontinue the med cold turkey to prevent further escalation of those symptoms & possible cardiac arrest.

Jon will be having a EEG in the next few days and the neuro doc wants to see him again in 4 weeks. If he has not had another seizure and his tremor(hands) is gone then he will release him. He did say that since Jon has had one seizure he is now at a higher risk of developing a seizure disorder. Some disorders present during adolesences. He talked to Jon about ADHD, learning disorders and how patients feel they hit a road block in their learning but to keep trying. He said if you keep trying the brain makes new pathway around blocks. He also said young men's brain are not fully developed until they are about 25 years old so it's crucial that Jon continue to look for "new paths".

I loved this doctor. He was great in how he explained things and was not condesending at all. Jon listened and made more eye contact than I've ever seen him do with a new doctor.

Now we wait for the EEG and hope it's normal and the tremor stops so Jon can be released. He also said that if things look good in 4 weeks that he'll note for medical and legal reasons that the seizure was due to adverse reaction to medication. So Jon will be able to get his driver's license after that. Praying and hoping for this to be the way it turns out. I'm hopeful!

Monday, June 28, 2010 7:57 PM CDT

Jon had a follow up visit with his primary care doctor today concerning his seizure. Dr. P agrees with Jon's other doctor that it is odd that he would have had a seizure caused by wellbutrin after being off it for several days. It's not totally impossible but they think unlikely. So we search on for answers. Meanwhile we hope and pray he will not have another seizure. The doctor today also said that many people who have a seizure never have a second one. That gives us hope.

Two of Jon's friends told him yesterday that he seems to be having trouble explaining things & almost stutters at times. At home we have not noticed stuttering but he does seem easily confused. This was also mentioned to Dr P.

Dr.P did refer Jon to a neurologist. Jon's hands have been tremoring since the seizure and he is having headaches on and off too. Some days the tremors is more apparent than others but it does seems to be constant and that is concerning. July is looking to be a very busy month with medical appointments for Jon. July 14th will be the neurologist, July 20th neuropsychologist, and July 28 liver transplant clinic.

Jon will not be allow to get his driver's license until 6 months past his seizure. Until he is cleared by the neurologist he is not to do anything that would be dangerous should he have another seizure. No swimming alone or at all in lake, ocean or other unclear water, no bike riding, hiking, etc. I wish we could find a nintendo DS on a really good sale. He needs something to keep him busy and inside where it's cool. This is going to be a hard time for Jon. He is usually very phyically active. Please keep him covered in prayer that the doctors can find solutions that will help Jon.

Sunday, June 20, 2010 11:47 AM CDT

This is a very tough update to write. First let me say we are Praising the Lord for his timing and mercy. Something very scary happened on Friday. Jen, Jon and I were on our way to South Carolina to visit my sister and brother. We stopped in Braselton to fuel up and I was just fixing to crank the car up and get back out on the highway when I felt Jon, who was in the front passenger seat, lean over on me. I look to see what he was doing and was horrified by what I saw. Jon was having a seizure! I yelled at Jen to get someone to call 911. It was so scary. It went on for what seemed like forever. It was probably about 1 to 2 minutes but it seemed like forever. He was breathing funny and making horrible noises then his lips started turning blue. His whole body was skaking and all his muscle were tensed up. His lips were purple when he finally started to stop seizing. But his breathing still sounded awful and then it got so shallow that I had trouble telling if he was still breathing. I felt so helpless during this whole time and the only thing I could think of to do what to hold him upright in the seat and keep his head up so his airway would not be compromised. Finally his lips starting pinking up. Jen checked his pulse at some point & said it was good. Several people came over during the seizure to see if they could help. Someone said the paramedics should be here soon, that the fire department was right around the corner. Someone suggested that I turn the car on to run the a/c to keep him cool. Here’s another Praise for the Lord. We had just gotten our tax refund & decided to rent a car for the trip because our van’s a/c is out. So I could turn the a/c on to keep him cool. Someone else went & got a cold bottle of water for Jon and after he seemed to be trying to come around Jen put the bottle on his cheek quickly and he turned to her. He responded to the cool bottle but you could tell he was not “right” yet. He looked at me when I called his name but was not talking or nodding his head or anything. Then the paramedics arrived. They asked Jon if he could walk to the gurney but Jon just kinda stared at them. They helped him stand up but he was very confused & disoriented and could understand that they wanted him to sit down but finally he did. Then he asked where they were taking him. Then he said something that made me feel so much better. He asked them how expensive this was going to be. Praise the Lord! Jen & I followed the ambulance to the hospital which took about 30 minutes. They got an IV line in him & oxygen on took in the ambulance. His oxygen levels were low. The whole time we were following the ambulance I kept praying for him to be ok and kept trying to see inside to see what was going on. I was so afraid I’d see them doing CPR or something. But he remained stable the whole trip. At the hospital he had labs drawn & they were all normal. As a precaution a CT of his brain was done. The CT had 2 very small spots that the ER doc and radiologist couldn’t figure out what they were. The ER doc said it could be artifacts on the film or small cyst or…. He said they all agreed Jon needed an MRA(magnetic resonance angiogram). Finally those results came back showing everything was fine.

Four days prior to this Jon had discontinued taking wellbutrin due to other side effects he was experiencing. His doctor in Chattanooga had told him to discontinue it for 1 week & if his symptoms went away then we would know it was the wellbutrin. It was in the ER that we found out that wellbutrin is know to cause seizures. The ER doc said it was a common side effect. Jon had only on wellbutrin 23 days when he stopped it. We are just Praising the Lord that he stopped it when he did. We don’t know how exactly how long it will take for the wellbutrin to completely get out of his system and the ER doc could not guarantee that Jon would not have another seizure. So needless to say we will be watching him very closely for a while. Jon is very very sore. He says all his muscle are very sore and tender, especially his thigh muscles. He is having trouble walking any distance because of his muscles. He is also extremely tired in general and he is having a lot of headaches too.

We are just so grateful to the Lord that Jon is ok and that we were in a place where help was close by and that we were not driving when it happened.

Please keep Jon in your prayers that he will not have another seizure during the time it takes for the wellbutrin to come completely out of his system.

Tuesday, June 1, 2010 10:02 AM CDT

We finally got Jen’s meds in the new dose in. Mail order pharmacy is sometimes very slow. On June 12th she’ll get labs and hopefully they will show that she is tolerating the lower dose of cellcept. Then we are hoping that at her August transplant clinic appointment that her doctor will allow a small dose change in her steriods.

She still loves her job. She’s working at least 30 hours a week. It has been an adjustment from being a couch potato to working on her feet for that many hours a week but it’s going well.

Jon will also have labs on June 12th. These will be his regular 3 months labs. We hope that his will also be good. We have no real reason to think they will be otherwise but as we know from before you just never know when labs will be out of whack. He got dehydrated this past week and it took several days of him drinking lots of fluids and mostly staying inside & staying cool to get back to his normal. Hopefully it was just normal dehydration and doesn’t mean his kidneys were struggling. He has not had any issues with his kidneys in the past. However the fact that he has been on cyclosporine for 17 years puts him at increased risk of long term kidney issues.

Jon is scheduled in July for his usual transplant clinic checkup. The week before that he is scheduled at Emory for an extensive testing and evaluation session. It will be from 8:15am to 4:30pm. It will be a long day & he’ll be getting finished right at rush hour traffic. I think we’ll go eat a nice leisurely early dinner at Lettuce souprise you. Then look around the nearby dollar store to kill time for traffic to clear.

We don’t know when results of the testing will be back but we do hope they will give us more answers to why Jon is having so much trouble with learning, attention, daily activities, and other things. Prayers for answers and solutions that will help Jon would be much appreciated.

We still have many cookbooks left. With Jon’s transplant clinic visit and testing coming up in July we really need help to raise $ for their transplant account for these trips and all the copays too. They are $14 including shipping. Please let us know if you’d like to purchase one(or more) to help with their medical costs.

Thanks for stopping by to check on Jen & Jon.

Tuesday, May 18, 2010 1:17 PM CDT

Jen's clinic visit went very well today. Her labs were great! Even her ggt was completely normal. Due to increasing frequency and newer unpleasant side effect from cellcept her doc is allowing a small reduction in dose. She'll repeat labs in two weeks and we are hoping her liver stays happy and the lowered dose helps with the side effects.

She is enjoying her job in retail sales. Since working & her last clinic visit she's lost some weight and she is so happy. In six months she'll be eligible for major medical insurance thru her employer but until then she can still remain on cobra.

Life is good! God is good!!! Praise the Lord!

Tuesday, May 4, 2010 7:03 AM CDT

Jen got a job!!! PRAISE THE LORD! She starts tomorrow. After looking for over 16 months she is so glad for the job search to be over. She is even receiving assistance for the required clothing & shoes too. Whoo Hooo! Due to just starting this job she may need to reschedule her transplant clinic and eye checkup to beyond May 18th. Mostly like postpone it for a month. She'll still get labs on time and since the only real issue healthwise is seasonal allergies delaying the appointments is not a big deal at all.

I would like to ask for prayer for Jon. Mark is scheduled to take him to talk with someone about a possible job, maybe temporary but at least it could give him some experience. Also please keep him in prayer for positive direction in his choice of friends and that he will start coming back to church again. Jon is not scheduled for labs until June and clinic until July.

So for both kids in reguards to their health seasonal allergies are their biggest issues right now. Something simple and normal, just like most everyone right now. We like simple and normal.

COOKBOOKS - We still have over 100 to sell. Just let us know if you'd like to order one. Our email is threelivers@windstream.net.

Thanks for stopping by to check on Jen & Jon.

Friday, April 23, 2010 9:07 AM CDT

The cookbooks are here! They arrived 2 weeks earlier than we thought they would. Morris Press is great! We have plently of extras. They are still $14 which includes shipping. If you live near us then $12 without shipping. This is our biggest fund raiser and for now our only fund raiser for Jen & Jon's transplant fund. If you would like one please send check or money order to Lincoln Liver Transplant Fund, P.O. Box 1948, Chatsworth, GA 30705. Make checks/MO out to NTAF(National Transplant Assistance Fund). And before anyone asks no we did not get a P.O. Box just for this. It's our regular mailing address so it's a normal expense. Plus the return mailing labels were free thanks to a friend's link to a coupon.

Jen's recent labs were great. Those that the lab ran that is. They didn't run a ggt so we don't know where it is but since the other liver numbers were good she's waiting until clinic in May to do labs again. She's still having headaches a lot. We'll just continue to watch this and report frequency to the transplant doc in clinic. Could be from one of her many medications. She's had several calls from her DOL rep about potential jobs but no more call backs for interviews. We are encouraged tho because there seems to be more and more jobs coming available in our area. Please continue to keep her in prayer about finding a job.

Jon is still stable. Not due for labs until June and clinic in July. His feet are fine now. Didn't take long after starting the meds prescribed to clear up. Please also keep him in prayer that he finds a job too. He's been working some with friends doing odd jobs but doesn't really hardly make any money after paying for gas. And the odd jobs are very hard to come by too.

Thanks for stopping by to check on Jen & Jon.

Monday, April 12, 2010 1:55 PM CDT

Jen is still coughing somewhat even on the recently prescribed meds. She will finish out the meds but it all could be lingering longer because of possible seasonal allergies. The pollen is so bad here that Ft Mountain looks like it has a yellowish haze to it. She had labs drawn today and will get results Wednesday. Hopefully all her liver & kidney numbers will be good.

Jen is still job hunting with no luck yet. Please keep her in prayer that she finds something before she runs out of cobra premium funding.

Jon saw the doctor today. He has some sort of foot infection. It is totally GROSS! Even the doctor grimmaced at Jon's feet. A med was prescribe & we hope he will be healed up within two weeks. The biggest problem is that the doc said to keep his feet clean, dry and up. UP! Right, how the heck do you keep a 19 year old young man off his feet???? Anyone have any ideas for entertaining him? I'm open to any suggestions.

Jon is also still looking for a job. Please keep him in pray that he finds something too.

The cookbooks should be shipped from the cookbook company on May 4th. We are excited to finally see the finished product. We are trying to get envelopes and mailing labels ready so when the cookbooks arrive all we have to do is slip in the books and seal then ship out. Again, we want to thank everyone sent recipes and/or ordered books.

Below is our usual update on what we've paid out so far in 2010 in medical expenses for Jen & Jon.

Thanks for stopping by.

Updated 4/12/10

Doctor's $364.14
Hospital $397.44
Labs $48.58
Meds $278.51
Cobra $2067.96
Travel $155.18
Parking $10.00
Food $122.82
Total $3444.63

Wednesday, April 7, 2010 10:31 PM CDT

Update on Jen – She went to her local doctor’ office today. 4 new meds were prescribed, one of which was an antibiotic. We are just not sure about all these new meds in relation to all her other meds. We are also concerned that she’s had cold, sinus type symptoms for over 2 weeks now and horrible headaches that started yesterday. Headaches somewhat similar to migraines but Jen says that her scalp feels like its burning. Jen’s decided to wait til tomorrow morning and call her transplant coordinator. Jen wants to verify that none of these new meds will interfere with her regular meds. Also to make sure the transplant team agrees with riding out these symptoms longer. Depending on what they say and how her symptoms either get better or worse we may elect to drive down to Emory on Friday or Monday and get labs done there. Please keep her in prayer that she’s feeling better soon. We would also like to request prayer for several of our liver friends who are sick now too. Aiden, Ayanna, Sawyer, Jaiden, Daniel, Tank, Olivia, Marisa, Zach, and Ezekiel. And for Jen’s uncle Jimmy whose wife lost her mother Saturday.

Medical Expenses for 2010 - Updated 4/7/10

Doctor's $344.14
Hospital $397.44
Labs $48.58
Meds $258.51
Cobra $2067.96
Travel $147.49
Parking $10.00
Food $113.76
Total $3387.88

Monday, March 22, 2010 3:48 PM CDT

Brief Friday March 26th update:
Jon's clinic visit went fine. Labs again in 3 months and clinic in 4 months. Here's the latest financial update.

Medical Expenses for 2010 - Updated 3/30/10

Doctor's $294.14
Hospital $367.44
Labs $48.58
Meds $175.18
Cobra $1183.62
Travel $136.91
Parking $10.00
Food $113.76
Total $2359.63

As I stated in the last update Jon is now 17 years post liver transplant. His recent labs results are in. All his numbers, liver & kidney, and all else came back great! We are so grateful to the Lord for all the blessings He has given Jon.

Jon’s been through so much health wise. He was born with an undefined liver disease and a cleft lip. He’s had two surgeries to correct his lip and many surgeries and procedures for the original liver disease he was born with. Then a second unrelated liver disease that cause advanced scarring in his liver at age 16. That second liver disease caused several rough years for Jon and he is still working through some of the emotional trauma cause by the treatment that was necessary to save his liver. But now to have a normal liver exam, both physically and on biopsy, is nothing short of a miracle from God. We praise Him; to Him we give all the glory. Jon still has some esophageal issues but currently they are only requiring monitoring and some diet changes. He is 19 years old and looking for a job. At this time he does not wish to attend college. He could use some prayers relating to his job hunting.

Jen had a recent short lived viral illness that may have cause her ggt number to rise. She’s feeling better now and got approval from her transplant team to stay on her normal monthly lab schedule. She hopes that with the next set of labs her ggt will be lower. She is also still looking for a job and could also use some prayers in that respect.

Jon is scheduled for transplant clinic this Wednesday. It’s a routine visit. CHOA has started a teen transplant clinic for liver recipients. It’s to make transition time to an adult team easier. Lots of things for a teen to become accustomed to doing for themselves. Insurance issues, financial responsibility for medical costs, ordering meds, scheduling appointments, seeing doctors on their own, keeping up with records, etc. All the stuff Mark and have done for him since he was born. Jon won’t go over to the adult team until his 21st birthday but this new “teen” clinic will help make that transition easier for him when that time comes.

The cookbook is at the publishers. I checked with them today and we have an expected completion date of May 4th. It will take several days more for shipping but we hope to be shipping orders out by mid May. We will have many extra copies for anyone who still wants one but hasn’t yet ordered. The cookbooks are our main (currently the one scheduled) fundraiser for Jen & Jon’s transplant fund. As you can see in the update below we have significant medical expenses on an ongoing basis.

Thanks for stopping by. Please sign the guestbook. We love to knowing who has stopped by.

Karen, Mark, Jen & Jon

***Just to clarify*** These totals are our out-of-pockets expenses for Jen & Jon. Below is an update on medical expenses for Jen and Jon since January 1st.

Updated 3/18/10

Doctor's $294.14
Hospital $367.44
Labs $48.58
Meds $165.00
Cobra $1183.62
Travel $106.91
Parking $10.00
Food $85.28
Total $2260.31

Monday, March 15, 2010 1:42 PM CDT

On March 12th Jon celebrated his 17th liver transplant anniversary. Wow, 17 years have passed. His post transplant journey has had many uneventful healthy years and some very tough years with tough health issues. We are so grateful to his donor family for everyone of those years. Their percious Gift gave life to Jon and still continues to give him life.

Jen had labs last week. Only two numbers were outside normal range. The one causing concern is her ggt. It's up to 147. We are not sure why. It's trending up so Jen put in a call/email to her coordinator to see if any action needs to be taken. Her other liver numbers were great! Her glucose was even within normal limits too. Carbon dioxide is still low but no more so than what seems to be normal for her.

Jon had labs drawn today but results won't be back until Wednesday or Thursday. He has transplant clinic next week also.

We want to thank everyone who sent in recipes and cookbook orders and donation too. The cookbook has been received by the publisher and we are awaiting their processing and a copy of the proof. After we proof and approve the cookbook they will print it. We have ordered many extra so don't worry if you didn't get an order in yet.

Thanks for stopping by. Sign the guestbook if you will so we'll know you've stopped in.

Below is an update on medical expenses for Jen and Jon since January 1st.
Medical Expenses for 2010 - Updated 3/15/10 ***Just to clarify-These totals are our out-of-pocket expenses.

Doctor's $294.14
Hospital $118.25
Labs $48.58
Meds $165.00
Cobra $1183.62(total includes $394.54-March premium paid by GTF)
Travel $106.91
Parking $10.00
Food $85.28
Total $2011.78

Sunday, February 28, 2010 11:16 PM CST

We have a big praise report. Jen was able to get funding assistance for her cobra premium for several months. This is a huge burden lifted from our shoulders for a few months. It is our hope and prayer that both Jen & Jon will be able to find employment during these few months and then be able to pay their premiums themselves.

February 25th was the 17th anniversary of Jen’s first liver transplant. So much happened during the 126 days she was hospitalized. She almost didn’t make it out of surgery. A surgery that last 18 hours. There were complications. She bled very badly and had her entire body’s blood volume was completely replaced many times over. The Lord was most certainly there in that OR with Jen and her surgeons. We know the Lord was guiding the doctor’s hands as they worked so very hard to save her. Jen was only out of surgery for 12 hours before she had to taken back to redo one of the major connections to her liver. During the next week she suffered through acute renal failure that required continuous dialysis for several days, a massive bleed that required her to be scoped and have varcies banded and severe preservation injury to her new liver. She was back and forth from ICU to the 5th floor twice and intubated and extubated 3 times. It was a rough and scary time for Mark and I. Jen had many many other complications during the rest of that admission. Back to ICU twice. She had CMV hepatitis, CMV pneumonia, had to have a tracheotomy, a bout of renal insufficiency, needed a feeding tube placed in her stomach, multiple line infections, an abscess near her new liver, too many other things to mention. So many times she came close to dying but it was the Lord’s will that she survive. It was tough but with God’s love and His strength she and we got through it.

It is at this time every year I think of her donor family. All we know is that she was 26 years old, from the Galveston area of Texas and died from head injuries sustained in an automobile accident. We are so grateful to her and her family for making the decision to give Jen the Gift of Life. Her donor must have been a very strong person. We know that her Gift of Life to Jen was just as strong as she was. It kept giving Jen life through so many complications. It just kept giving and giving; for 9 years, 10 months and 5 days it gave Jen life. We send our love and prayers to Jen’s precious donor’s family.

Currently Jen has a slight cough, sore throat, sinus pain & earache. So far no fever so we are hoping this is as sick as she will get. She is scheduled for labs next week so we are praying she gets better quickly and her numbers will be normal. Jen did have a job interview this past week but didn’t get a call back for a job. She is continuing to look for employment but it tough here as jobs are few and far in between as they are nationwide it seems.

This Wednesday, March 3rd, will be the last day we can accept recipes for Jen & Jon’s cookbook. We will still accept orders for books. We will be ordering 200 books so we’ll still have plenty left to sell once they arrived from the printers. If you are interested they are $14 each including shipping. Orders can be mail to Lincoln Transplant Fund, PO BOX 1948, Chatsworth, GA 30705. Please make check or money order out to NTAF. Thanks. Below is an update on medical expenses for Jen and Jon since January 1st.

Medical Expenses for 2010 - Updated 3/11/10

Doctor's $287.30
Hospital $118.25
Labs $54.28
Meds $165.00
Cobra $789.08
Travel $92.71
Parking $10.00
Food $61.26
Total $1577.88

Friday, February 19, 2010 4:35 PM CST

Can anyone guess what tomorrow is? Jen’s 24th birthday! I can’t believe my daughter will be 24 years old. In many ways it’s been a long 24 years but in many other ways it’s been a short 24 years.

HAPPY BIRTHDAY JEN! WE LOVE YOU!

She is seeing a difference in how she feels since she’s doing what her doc said about her diet. Lean & green. Fresh & frozen. Really it’s low in carbs but at least she’s able to tell that when she eats too much carbs she can tell her glucose is up without even checking with a glucose meter. Sometime they learn the hard way that Mom & Dad do know what they are talking about.

We did not hear back from the team after they got the lab results they were missing. So we are waiting with our questions until Jen’s return to transplant clinic in May. She will get labs again around the first of March and April too. So if a trend is continuing we(and the team) will see & decide if anything further needs to be done.

We have a Praise report. We had a friend come forward and offered to pay for Jen’s February cobra payment. Praise the Lord!!! What a huge burden that was lifted. The cobra premium is a monthly thing. So Jen has another premium due March 8th. She did talked with someone yesterday about 3 months of assistance and we hope to hear sometime Monday on whether or not that organization will be able to help.

Jen is continuing to look for employment so she can pay the premium herself. So far no luck. Her vocational rehabilitation counselor has called her with several leads in the last 2 days so maybe; just maybe, Jen will get called for an interview. For those of you who are not aware, Jen has a hearing impairment that qualifies her for vocational rehabilitation assistance with the Georgia Department of Labor.

We are still taking orders for Jen & Jon’s cookbooks. They are $14 a copy and includes shipping. If you are interested please mail a check or money order to Lincoln Transplant Fund, PO Box 1948, Chatsworth, GA 30705. Please make check/money order out to NTAF(National Transplant Assistance Fund). We anticipate arrival of the cookbooks in April. We do have to prepay so we need about 20 additional orders before we can request Morris Press to print the books. Please help if you can. This all goes towards helping Jen & Jon continue to receive the necessary post transplant care.

To be very open & honest about their situation and this is hard for us to do… Jen currently needs to be seen by 3 different specialists but right now we have to delay these appointments because we can’t afford co-pays and co-insurance amounts. Two of the three could possibly require minor outpatient surgery, which means more than the usual $30 specialist doctor co-pays.

As always we appreciate all who stop by to check on Jen & Jon.

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Medical Expenses for 2010 - Updated 2/18/10 – Below is an update of what we’ve paid out for medical expenses for Jen & Jon so far in 2010.

Doctor's $232.58
Hospital $76.25
Labs $15.39
Meds $15.00
Cobra $394.54
Travel $92.71
Parking $10.00
Food $61.26
Total $897.73

Tuesday, February 9, 2010 7:31 AM CST

Jen’s checkup generally went well. Most of her liver numbers were good. Her ggt was elevated but with the other numbers being so good we will watch for a continuing trend. She’s had this up & down with this particular number for a while now. As long as it doesn’t keep trending up then nothing needs to be done. If it continues to trend up then more testing may be ordered to make sure there are no problems with the bile ducts to her liver. There were many things discussed & lots of information given to us. It was kinda of overwhelming but overall things are stable.

We discussed communication issues & it was confirmed that the team did lose a coordinator, which makes it hard for the remaining coordinators to pick up more, & new patients but they are working on hiring a replacement. In the meantime one of the remaining coordinators called Jen on the way home yesterday & got to know Jen’s situation better. We also discovered that the team has not gotten all of Jen’s labs since the end of December or beginning of January. We have copies here at home and will be faxing those to the team this morning. It’s hard for the team to follow numbers that are fluctuating if they can’t see them. From now on we will always get copies from local labs ourselves & fax to the team. That way we know they get everything.

There are some concerns about certain numbers but the docs will determine after receiving copies if anything needs to be done anytime soon or if we just need to keep an eye on things. Watch for further changes, that type of thing. Renal tubular acidosis(I think was the term)was brought up but she’s not diagnosed with it but it’s something that will be watched out for. Her bp was slightly elevated but not enough to need anything to be done. Just one more thing to keep a watchful eye on.

Her A1c was ok so he wants to try more dietary changes instead of oral meds or insulin. He really feels if she can get a better handle on eating habits she can control her glucose & if she loses weight that will also help with glucose issues too. It is not advisable at this time to attempt a steroid dose reduction. Steroids are playing a big part in her ability to lose weight but they also play a big part in keeping her body from trying to reject her liver. Catch 20-type thing. : (

The issues Jen’s been having with finger pain & coloration are possibly due to carpal tunnel and/or Raynauld’s syndrome. With Raynauld’s she just needs to make sure to keep her hands/fingers warm. This exceptionally cold winter is not helping. Where’s Spring??? If the pain persists an x-ray may be ordered. She is also having other joint pain too. Some of which could be weight related and/or steroid related. She did have a dexa-scan about 2 years ago which was normal. As some of you may know with long-term steroids deterioration of bone can occur. We already know Jen’s body is very sensitive to steroids as she has cataracts from just being on a low dose & also has other physical characteristics of long-term steroid use.

Her prograf level was 11.2 so the change over to generic has not cause a problem and neither has the change over to generic cellcept. She experiences with same side effects on the generic of both meds as she did on the brand name. With the last 3 lab draws her prograf level has ranged from 6.9 to 11.2. This is a good range for Jen even if it is a bit higher than most patient 7 years out from transplant. This range keeps her from trying to reject her precious Gift of Life.

Unless the team sees something on the missing labs that we will fax today that needs addressing, Jen will go to a monthly lab schedule and be seen in clinic again in 3 months. We discussed SO much that we were on information over load and didn't asked all our questions. But since she is going back in 3 months and the doc didn't have all the labs we are waiting with the other questions until May or sooner depending if he makes changes or something when he sees the labs.

We are still prayerfully seeking a way to meet her February cobra payment of $394.54. She has a grace period of 30 days. The last thing she needs to complication her health is no insurance coverage, which would mean no way to pay for healthcare or medications.

Thank you all for stopping by to check on Jen & Jon.

COOKBOOK INFO -- Cookbooks are $14.00 which includes shipping. Checks/money orders can be mailed to
Lincoln Transplant Fund
PO Box 1948
Chatsworth, GA 30705
*Please make payable to NTAF-National Transplant Assistance Fund*

Medical Expenses for 2010 - Updated 2/8/10 – Below is an update of what we’ve paid out for medical expenses for Jen & Jon so far in 2010.

Doctor's $232.58
Hospital $64.25
Labs $15.39
Meds $90.00
Cobra $394.54
Travel $92.71
Parking $10.00
Food $61.26
Total $960.73

Friday, February 5, 2010 10:32 AM CST

Jen is scheduled for transplant clinic on Monday. Please be in prayer for her that the doctor can discern & come up with answers to better her health. Her glucose levels are staying elevated lately. She is tired, sometimes nauseous, moody and is sleeping a lot. She went through this last year at this same time but she had just had a rejection episode that was requiring higher doses of prednisone. Currently she is not on a higher dose of prednisone so we are not exactly sure why her glucose levels are high. It could be the fact that she is on prograf(anti-rejection medication which is known to cause diabetes) and/or is overweight. We are hoping that if the doctor decides to put her back on meds to control her glucose levels that he will allow her to try oral meds rather than go back to insulin like was done last year.

She does have some labs, mainly CO2 levels that are now consistently low and we are not sure if that really means something is not right or it’s just a result that is ok to be slightly out of normal range. We have just noticed that that result is consistently flagged as abnormal for her.

We are still collecting recipes for the cookbook that we are doing as a fundraiser for Jen & Jon’s transplant fund. We will take recipes until February 15th. We are also still taking orders for cookbooks too. We need to have 53 prepaid orders before we can order the books. Since we are a family, not an organization doing the cookbook we are required to pay for the entire order of books before the cookbook company will print and ship. Currently we are at 26 prepaid orders. We are so thankful for members of Spring Place Baptist Church for all the recipes and orders they have submitted. We are also thankful to those outside our church who have submitted recipes and orders too.

We are prayerfully seeking a way to meet Jen’s February Cobra payment. It is due February 8th but there is a 30-day grace period. This is Jen’s only source of medical insurance. Cobra premiums are the biggest reason we are needing to fund raise at this time. Thanks to the Georgia Transplant Foundation Jon has his Cobra premiums covered for a few months. This is a resource not available to Jen for this year as they helped her last year in meeting her premiums. As you can see below our medical expenses add up quite quickly. The totals below are since January 1, 2010.

Doctor's $202.58
Hospital $64.25
Labs $15.39
Meds $15.00
Cobra $394.54
Travel $65.62
Parking $1.00
Food $34.74
Total $793.12

We appreciate each and everyone who stops by to check on Jen & Jon. May God bless you all.

Thursday, January 28, 2010 11:49 AM CST

Jon transplant clinic appointment yesterday was very busy. They now have teen transplant clinic once a month. We think this is great. They are addressing topics that directly impact or will impact teenagers in the near future. School, jobs, insurance, etc. We saw a nutritionist, hepatologist, psychologist, social worker, and meet one of the new coordinators. The team now has two coordinators which we think is wonderful as the team follows so many many patients.

Updates as follows:
Hepatologist - liver labs were great. We met Dr V, whom we had never met before. Jon seemed very comfortable talking with her espcially given that he usually has a hard time with new doctors. She did talk with Dr R whom Jon normally sees so I came away feeling very good about Jon's care with all the new changes in the transplant team staff. His blood pressure and weight were good although Jon would like to bulk up in muscle strength. Since Jon's liver numbers are good, his liver & spleen are both soft and not enlarged and his recent biopsy showed no significant fibrosis it is felt that there is no big worry about the esophageal varices becoming a bleeding concern. His biggest problem currently is his reflux. From the recent scoping & upper GI it is a concern that he may have motility issues in his esophagus. His is to try some new dietary changes, no tomato products, no soda, no eating an hour before bedtime or take reflux meds at least 10 minutes prior to eating. He'll try that for a month if it helps then he'll just keep doing that. If it doesn't help then he'll be referred to a GI doctor who specializes in motility issues.

Nutritionist - Jon's weight and height are good. She did give him some ideas about what to eat if he starts weight training to increase muscle mass. And as always eat healthy.

Social Worker - Discuss school options, talked about need for insurance, jobs, and much to my surprise the issue of "intimate relations" was brought up. She was encouraging Jon to further his education so he can get employment in the future so he can always support himself & his medical needs.

Psychologist - Discussed general mood type stuff. Jon is still recovering from PSTD but is making progress. It was suggested that he talk with a psychiatrist about going on ADHD meds for his assestment testing for school to give him the best chance of doing well.

Jon is returning to clinic February 24th to monitor his reflux situation. All in all it was a good clinic visit and we are pleased with the changes in the transplant team and feel very comfortable with Jon's care remaining there until he turns 21 at which time he will switch over to the adult team at Emory.

COOKBOOK UPDATE: We are still taking recipes and orders. In order to order the books we must presell and prepay for at least 70 in order to order 300 books but it looks like we'll need to revise down to 53 books so we can order 200 books. We now have received orders and payments for 14 books and have received about one third of amount of new recipes we wanted to double the recipe count from the first edition.

Medical Expenses 2010 - Updated 1/27/10 So far in 2010:

Doctor's $155.74
Hospital $54.25
Labs $15.39
Meds $15.00
Cobra $394.54
Travel $65.62
Parking $1.00
Food $34.74
Total $736.28

Friday, January 22, 2010 2:21 PM CST

Jon finally got labs drawn this morning. Hopefully we'll have results by Tuesday if not then we'll find out Wednesday at transplant clinic.

Medical Expenses 2010 - Updated 1/22/10 So far in 2010:

Doctor's $125.74
Hospital $40.00
Labs $15.39
Meds $15.00
Cobra $394.54
Travel $37.73
Parking $ 0
Food $15.93
Total $644.33

Wednesday, January 20, 2010 1:27 PM CST

Jon will get labs tomorrow and results probably back by Monday. He has transplant clinic next Wednesday. We have many questions for the doctors. Mainly dealing with his reflux & varices. We don't know if the reflux can cause his varices to bleed or not. That's the big question. It's a small varices but we've never had to deal with both varices and reflux at the same time. We will also find out what schedule Jon needs to be on to keep an eye on the damage in his esophagus from the reflux. We are hoping not more often than once a year since the copays are about $1,000 each time between the doctor and hospital charges.

Jen's last labs were stable enough for her to wait until February 8th when she goes to transplant clinic. She thought she had a part time temp job but it didn't work out. It sure would have help with her cobra premiums. She has one due February 8th and we have no idea where the $400 is coming from. Usually it's Mark & I that stress over how to financially to meet medical expenses but now that Jen is older she is stressing too. It is starting to take a toll on her health too. Stress is probably playing a big part in her diabetes becoming such an issue again.

We are still working on the cookbook to raise funds for their medical expenses but so far it is not going too well. We've only sold about 10 books. We need to sell 70 to cover the cost of printing. We have to pay in advance for the books. So if anyone wants one please let us know. We are still taking recipes too.

Thanks everyone for stopping by to check on Jen & Jon. Please drop a note in the guestbook to let them know you've stopped by.

MEDICAL EXPENSES 2010 - Updated 1/13/10

Doctor's $33.16
Hospital $10.00
Labs $12.54
Meds $15.00
Cobra $394.54
Travel $31.39
Parking $ 0
Food $10.34
Total $506.97

Wednesday, January 13, 2010 12:45 AM CST

Jen's labs are pretty good with the except of her carbon dioxide level which is still low. Her prograf was 6.9 & we're hoping that will be as low as it gets. She goes to Emory to see her hepatologist on February 8th and will get labs repeated then for sure. Jen is hoping that today's labs are good enough that she won't need more until clinic in February. Her poor veins sure do need a break.

Jon will get labs locally next week and has transplant clinic in Atlanta the week after. We are expecting his labs will be in the normal range. We are praying his clinic checkup won't reveal any unexpected or bad news. We do have questions about how or if his varices could be effected by his reflux. We will also find out exactly what schedule his doctor wants him on for routine upper endoscopy checks. Most likely not more than once a year.

We have not had many orders for cookbook but have had some and also have had some recipes sent. We are excepting recipes until January 31st. We thank everyone for their support whether it's cookbooks, recipes, donations, prayers, thoughts, or stopping by to check on Jen & Jon.

Medical Expenses 2010 - Updated 1/13/10 So far in 2010:
There are some corrections as we didn't have all the expenses separated out in the correct categories.

Doctor's $33.16
Hospital $10.00
Labs $12.54
Meds $15.00
Cobra $394.54
Travel $31.39
Parking $ 0
Food $10.34
Total $506.97

Sunday, January 10, 2010 2:10 PM CST

Praise Report time today!

1)We think we figured out what's going on with Jen's new health issues. We believe her glucose levels are elevating again. Enough so that she probably needs to be on either oral diabetic meds or insulin. We are hoping that with closer diet monitoring that her levels can be controlled with oral meds. At least the new symptoms don't seem to be something worse which was our concern.

2)She got job! It's temporary, thru tax season so about 3 months. That will certainly help with her cobra premiums for at least that time frame.
Praise the Lord!

We are still taking recipes and orders for the kids cookbook. You can email us at threelivers@windstream.net or leave me a message in the guestbook with contact info & I'll get back to you with the information. Thank You.

Medical Expenses 2010 - Updated 1/11/10
We decided to post a running total of medically related expenses here. We are doing this because many think that once someone has a liver(or other organ)transplant their health issues are over and so are the major financial expenses.

So far in 2010:
Doctor's $20.00
Labs $19.38
Meds $15.00
Food $10.34
Travel $24.95
Cobra $394.54
Total $484.21

Wednesday, January 6, 2010 2:50 PM CST

Thursday update: Jen is experiencing more symptoms that are concerning. Shortness of breath, itching, low energy, nauseous and just generally not good. She is waiting to hear from her coordinator. Please pray for a simple easy explaination and an easy fix. Back to yesterday's update.

Wow, what a drop from 29.9 to 9.6! Fasting glucose is up, ggt is still up and her carbon dioxide is still down. Down as low as it was when the ER doctor was concerned. Chloride is normal this week and so is calcium too so that's all good. Whatever those numbers mean anyway. I know liver numbers well and some kidney but not so much on all these other ones.

Her toe infection seems to be better. Less red but still very sore and she's putting off the nail removal until after infection is cleared up.

Repeat labs Monday and hopefully all be fine and she can go out to 2 week labs.

Medical Expenses 2010 - Updated 1/6/10
We decided to post a running total of medically related expenses here. We are doing this because many think that once someone has a liver(or other organ)transplant their health issues are over and so are the major financial expenses.

So far in 2010:
Doctor's $20.00(correction from 1/5 update)
Labs $ 9.69(correction from 1/5 update)
Meds $15.00
Travel $18.48
Total $63.17

Tuesday, January 5, 2010 6:32 AM CST

2010 - A New Year - Well it's starting off much the same as last year. 4 days into the new year and Jen's had labs once, seen local doctor once, had one antibiotic prescribed and been referred to a specialist. Most likely the specialist will recommend permantely removing one of her big toenails. It's gotten repeatedly infected and already been been partially removed several times and totally removed once in hopes that when it grew back it would not get infected again. It might not be very pretty in open toed shoes if permantely removed but at least it won't be getting infected again. Jen is on so much immunosuppressant meds to prevent rejection that any infection is a serious risk.

For the time being she is still on weekly labs. Labs were done on Monday and we hope to have results tomorrow. Hopefully with the reduction in prograf dose her level will be down to tolerable levels. We are concerned for her kidneys with such a high level.

We've decided to post a running total of medically related expenses here on Jen & Jon's page. This was decided because we keep hearing that many people think that once someone has a liver(or other organ)transplant their health issues are over and so are the major financial expenses.

So far in 2010:
Doctor's $26.84
Labs $ 2.85
Meds $15.00
Travel $12.22
Total $56.91

Thursday, December 31, 2009 9:19 PM CST

Jen is dancing again. The prograf dance that is. Her level was 29.9! Way to high. She was told to hold her pm dose tonight and reduce dose starting tomorrow and repeat labs Monday. Some of her other numbers are off too. She was not scheduled to go to clinic until May but may need to go in sooner if her numbers don't settle down quickly. High prograf levels are not good for her kidneys at all. Ggt, another liver number was elevated. Not sure why usually when the prograf is high her liver numbers are usually good. Her liver likes high prograf her kidney do not. I guess we'll see where things stand after next weeks labs. Thanks for checking on Jen & Jon.

Fund Raising Info - We've been trying to prepare for the start of the kids cookbook fund raiser. We would love to include recipes from you. We are accepting recipes until January 31, 2010. We are also taking pre-paid cookbook orders too. Please email us for more details. Our email address is threelivers@windstream.net

Wednesday, December 23, 2009 8:41 AM CST

After being seen by a local doctor who send her on to Atlanta Jen spent over 6 hours in the Emory ER yesterday but she's home now. It looks like a viral process not rejection. Her liver and kidney numbers were very good. Thanks to some IV fluids and zofran she's feeling much better. She's to repeat labs Monday & take it easy.

Wow,that was our first experience in a big city ER. Patients were everywhere, in the hallways on gurneys, just everywhere. I will say that even tho the ER was so packed Jen's care was great. And praise the Lord, we heard that someone was getting their Gift of Life.

Fund Raising Info - We've been trying to prepare for the start of the kids cookbook fund raiser. We would love to include recipes from you. We are accepting recipes until January 31, 2010. We are also taking pre-paid cookbook orders too. Please email us for more details. Our email address is threelivers@windstream.net

Monday, December 21, 2009 10:09 PM CST

Hey all

Sorry about the delay in updates. We've been trying to prepare for the start of the kids cookbook fund raiser. We would love to include recipes from you. We are accepting recipes until January 31, 2010. We are also taking pre-paid cookbook orders too. Please email us for more details. Our email address is threelivers@windstream.net

We also need prayers for Jen. She began to feel itchy and had headaches on Sunday. More symptoms have developed as today went on. GI issues and low grade fever. These can all be signs of rejection or a virus. She had labs drawn this morning(Monday) & we hope to get preliminary results tomorrow afternoon. Most likely we will get her into see her local doctor tomorrow & also call her transplant team for advice. A trip to Emory is likely tomorrow afternoon or on Wednesday. We are hoping to spend Christmas at home with the whole family and not in the hospital.

I will update as I know more. Thank you all for stopping by. Your prayers and guestbook notes mean so much to us.

Wednesday, November 18, 2009 11:37 AM CST

Dear Family & Friends,

Once again we are up against a challenge that we cannot meet alone and need your help. As many of you may know, Jennifer, who is 23 years old, and Jon, who is 18 years old, have had liver transplants. Jon was transplanted at 2 years old and Jennifer had her first transplant at 7 years old, and her second at 16 years old. They were born with an undefined liver disease that destroyed their native livers and required a liver transplant to save their lives.

After several medically tough years that included fighting a second unrelated liver disease Jon is now doing good liver wise but will always have on going medical expenses to ensure that his liver continues to function normally. Jon’s recent (October 2009)EGD revealed that he has esophageal varices and damage to his esophagus from reflux that will not only require medications to control, but also yearly upper endoscopy’s to monitor. Jen has had many complications, some of which led to her second liver transplant. She was last hospitalized in December 2008 for rejection of her liver and will always need close monitoring of not only her liver but also her kidneys. Jennifer has the additional burden of keeping medication levels high enough to prevent liver rejection, but not so high that her kidney function is compromised.

With both of them in need of medical care, this is an ongoing burden for our family. This year has been especially difficult as in July Mark was laid off. He has since found employment, but because Jon is no longer in school he can not be added to new Mark’s insurance. As of November 1st, Jon is on COBRA which has a monthly premium of $395. In January (2009) Jennifer went on COBRA and her premiums are an additional monthly $395. Jen has been looking for employment since January but she has not been able to find a job. Jon is now also in the same situation.

Combined, their uninsured medical expenses are over $12,000 per year. It is our goal to raise $24,000 which would cover 2 years expenses. Hopefully this will give both Jen & Jon time to find a job with benefits. An account in Jennifer and Jon's honor has been established with the National Transplant Assistance Fund (NTAF), a nonprofit organization that has provided assistance to transplant patients and their families for the past 20 years. For more information about Jennifer and Jon, please visit their website at www.caringbridge.org/ga/jenandjon.

Please know that your contribution counts. We thank you for your kind consideration.

Checks can be made payable to: NTAF Southeast Liver Transplant Fund
Please remember to note in Memo section: In honor of Jennifer and Jon Lincoln

Please mail to:
NTAF
150 North Radnor Chester Road
Suite F-120
Radnor, PA 19087

For credit card contributions, please call 800-642-8399 or visit www.transplantfund.org

Wednesday, November 4, 2009 9:47 AM CST

Jen update - Wednesday - November 11th
Jen's labs were great & checkup went well. If she tolerates the change over to generic cellcept & prograf & remains stable her doctor may let her try to wean down on the steriods and possibly off. This would be great news because of the serious side effects the steriods cause. ie cataracts.

Jon's news was so great I just had to leave it up. Still can't believe it!

PRAISE THE LORD!!!

We finally got Jon's biopsy results back. Stomach & small intestine are normal. Liver biopsy... more good news than I ever imagine possible.

Jon has no evidence of rejection, infection or significant fibrosis! No significant fibrosis! On the last 2 biopsy's he's had advanced fibrosis. I knew that with treatment the fibrosis/scarring could improve but since his biopsy in 2008 still showed advanced fibrosis I didn't think he would have improvement with this recent one. We were just praying for no worsening of the scarring. But to have improved this much?

Sometimes God gives more than you ask for. This time He really did. Praise God!

Saturday, October 24, 2009 10:54 AM CDT

Jon has a small grade one varices. I absolutely did NOT expect this. He also has some definite reflux damage too. He'll need to stay on reflux meds, possibly two to help prevent continuing damage. He'll also need more scopes in the future to monitor. No biopsy samples were taken of his esophagus because of the varices but there were some taken from stomach & small intestine. And of course the liver biopsy was done too.

No answers until next week. Now we wait. I am expecting cirrhosis but the doc said the biopsy may not show cirrhosis. This varices could be from the advanced scarring in his liver he's had since 2006 & previous scarring in esophagus from varices before transplant. That we know of he only had one pre-transplant & it never bled.

Jon does still want to come off gengraf. We are waiting for biopsy results to make sure it does not show any signs of rejection. Reguardless of the results the official recommendation from the team, (and Mark & I), is to NOT come of gengraf. But if no rejection and Jon decides to attempt it anyway he'll have to go back to monthly labs for at least 6 months then MAYBE he can go to 2 months apart. The doc said if it were him he would remain on monthly labs for the rest of his life.

This all scares the heck out of me. I mean cirrhosis is one thing, a huge thing, but even if he doesn't reject but still has cirrhosis & then loses his liver later because of the exsisting damage(which is from the previous infection)will a transplant team be willing to transplant him? He'd have to convince them that he would be compliant with meds after a 2nd transplant. If so he would then be on prograf, cellcept & steriods and the likelyhood of ever coming off those would be nil.

This will all be discussed at clinic in 2 to 4 weeks. Hopefully the surgeon new to the team will be able to be there so we can get his opinion of how an adult team would look at this particular situation especially given that Jon will be 19 next month. CHOA keeps kids until 21 but I hope & pray that IF he loses this liver that it wouldn't be in the next 2 years. For those of you who don't know, the new primary surgeon at CHOA is also on the adult team at Emory too.

This is all so unfair. He was born with one liver disease that required a transplant, developed a second unrelated liver disease post transplant & had to go through heck to beat it. Jon has PTSD from treatment & is having a hard time as it is and now this. I absolutely feel very overwhelmed at what Jon could be facing.

Tuesday, October 20, 2009 8:44 AM CDT

Testing coming up this week for Jon. Thursday he will have an upper gi in radiology and then get pre-op labs & see anesthesology. Early Friday am he is scheduled for an upper endoscopy and a liver biopsy in the OR. The plan is that he will be discharged Friday afternoon. I am taking high calorie, high sugar snacks/drinks to feed him as soon as he can eat to avoid his glucose dropping. Low glucose is what we think caused him to have to stay overnight with last years' biopsy so I'm not waiting on a food tray to come up.

The upper gi & EGD is to see what is going on in his esophagus since he is still having swallowing issues. Possible strictures, I guess is what the doc is looking for. I didn't ask. I got stuck on the fact that he wanted to do another biopsy. I didn't see that one coming.

The biopsy is to access the scarring in his liver. To see if it is still only advanced fibrosis and not worse. Also to check for possible rejection too, although all of his lft's are normal. Jon does not always remember his meds on a consistent basis. He does want to come off the gengraf even tho the docs all say it's not a good idea. The doc said he doesn't have much "wiggle room" when it comes to further scarring in his liver.

It's been a tough year for Jon. He doesn't want to go to college, at least not yet. I do feel he needs a year off before making that decision. He still needs to work thru some of the PTSD that happened as a result of treatment. A lot rides on the biopsy results. I'm not sure how Jon will react if it shows cirrhosis. I know how I'll react. I just hope I can hold it together long enough to get off the phone with the doc before I break down in tears.

So if ya'll would remember Jon on Thursday & Friday. This is one of those times I wish Mark could be there too but he can't because he just started his new job which is going well. I'm am praying for the best for Jon and also no matter what the results are that we have the grace to accept it. While I feel something not so good is coming I also have a sense of peace, I guess more along the lines of knowing that God has a plan and a path for us & no matter what He will "be there for you" as our angel friend Haley would say.
__________________

Saturday, October 10, 2009 8:25 AM CDT

Jon's recent checkup in liver clinic was eventful. In less than 2 weeks he is scheduled for an upper GI, upper endoscopy and a liver biopsy. He also had unplanned labs drawn and will need labs again several days prior to these procedures.

He has had swallowing difficulties for a while now and the Uppper GI and endoscopy are to see why. Jon's had reflux issues since birth but is on nexium to help with it. Hopefully this is nothing serious or is something a med change will fix.

The biopsy is to assess the condition of his liver. His last biopsy in July 2008 still showed advanced fibrosis and some active inflammation. The doctor said Jon does not have much "wiggle" room when it comes to any more scarring for any reason. We are hoping and praying very hard that the upcoming biopsy does not show cirrhosis. We know from previous experiences that by the time there are definite signs of end stage liver disease that cirrhosis is already present & has been for a while.

With there being active inflammation on the last biopsy and not knowing why we are very concerned at what this next biopsy will reveal.

Please keep Jon in prayer that his liver scarring has not advanced. I will update as I know more. Thanks for stopping by.

Saturday, September 26, 2009 5:23 PM CDT

Well Jen's doing the prograf dance again. Her level on Tuesday was 24.9 and Friday only down to 18. Still way too high. For those of you who are not "liver" parents a level that high is dangerous for her kidneys and it also means her immune system is so suppressed that she is susceptable to anything she's exposed to.

So far her kidney are looking good. We feel like the Lord put a protective hedge around her kidneys 3 years and and it's still there. So anyhow 3 prograf doses were held, one Thursday night and am & pm on Friday. Plus her dose was reduced too. She's to repeat labs again in Atlanta this coming Friday. We're hoping this will be a short prograf dance this time.

It looks like Jon may have a temporary job helping with flood relief. He will find out on Monday if it works out for him. Please keep him in prayer, he really needs something positive to happen for him. He is still really struggling.

Mark is loving his new job. He's already been provided with new safety boots, got safety glasses ordered and his first paycheck. God is Good. All the time, All the time.

I've had 2 of 5 IV iron infusions so far. I thought I was feeling like I had a little more energy but today am very tired again. Maybe I over did it too soon.

We are in the area getting a lot of rain lately. Some local streets are flooded, yards and field really flooded. Creeks are turning into rivers and a local grocery store parking lot looks like a beach especially when people try to drive thru it. The resulting waves reminds me of the waves at the beach until I see the car stuck in the middle of the water. Some people will try to drive thru no matter what.

Well, thanks for stopping by and checking on us. I will update on Jen's labs & Jon's job situation as I know more.

Karen

Monday, September 7, 2009 8:15 PM CDT

I have fantastic news! Mark was offered a job! We are so happy and relieved. He has orientation on the 14th. Woo Hoo and most of all PRAISE THE LORD!

Tuesday, August 25, 2009 10:57 AM CDT

Saturday update: Jen's labs were great too. So she's now down to 8 meds. Soon she will be switching one of her immunosupressants meds to a generic version. We are not happy about this but our co-pay is $1191 for brand name vs $75 for generic. She will need labs on a more frequent basis for a while to make sure she tolerates the switch. We are keeping our fingers crossed and praying hard that she can make the switch without any problems.

Jon's labs from last week were very good, in fact great! We could not ask for them to be any better. The big one, in infection he fought so hard to beat..... it is still GONE!!! With the infection beat we have more hope that he will never need another transplant because it is thought that the infection is what cause the scarring in his liver to become advanced fibrosis. We don't know what the future will bring but this news gives us much hope for his liver to remain healthy enough to sustain him for many many years to come.

He is still deciding what he wants to do as far as school goes. College or technical school or what??? He just doesn't know yet. Please pray for him to find the path that is best for him and that it is in the Lord's will.

Mark has now been unemployed for over 7 weeks. He's turned in numerous job applications, had 2 interviews, traveled out of town twice but so far so luck in securing employment. Someone told us that they were many jobs in North Dakota & we half-heartedly looked online for jobs but the cost of moving there is not something we could afford. All we can do at this point is keeping looking and keep praying.

I have recovered from my surgery but am still tired. My next step is to try to get our insurance to approve IV iron treatments. "Topping" off my iron levels should help me get my energy level back up to normal. That would be great especially after over 2 years of always feeling tired.

Speaking of insurance we have coverage for Mark, myself & Jon until October 6th. Jen is already on Cobra and she has premiums paid until December. So soon we will need to look for assistance for the 3 of us to go on Cobra too. We know our premiums will be the almost $1500 per month. As we understand it tho due to a federal program we would have to pay 35 percent. I think we can find assistance for Jon since he is a transplant recipient that would be a such a huge relief.

As bad as the financial stuff is we are still so blessed that Jon's liver function is completely normal. Jen had labs yesterday & we are hopeful that even with a med change that her results will also be good. I'll update more as we get those results.

Thanks for stopping by,

Tuesday, July 14, 2009 2:31 PM CDT

Sorry for the long time between updates. I had surgery & have been recovering so not much time on the computer lately.

Jen is doing well. She had labs yesterday & our prayers are that her numbers are good. She is still job hunting. It's just so hard to find a job around our area.

Speaking of job hunting, Mark was laid off last week. We were hoping that this would not happen but it did. At least he is getting some serverence pay. Plus the company is paying for 90 days of insurance too. HUGE blessing for us with all the medical expenses we have in our family.

I have big favor to ask. Mark has a job interview tomorrow, please keep him in your thoughts and prayers that it goes well.

Jon is doing well also. This week he is away at Camp Independence. It's a week long summmer camp for kids who've had some type of organ transplant. He is not due for labs until sometime in August.

Thanks for all you guys who continue to check on Jen and Jon. I will update on Jen's labs in the next few days.

Monday, June 15, 2009 8:00 AM CDT

Since our last update we had a scare with Jen's labs. She had routinely scheduled labs that came back showing very elevated liver numbers. Several days later she had labs repeated at Emory and was also seen in clinic. Praise the Lord, her numbers were much much better. We don't know what the cause was, maybe a mild viral illness? She's had labs repeated since at home and all but one liver number was back within normal range. It's the ggt that's still up but it is trending down nicely. It's always the last number to come all the way down to normal and it does like to take it's time doing so.

She has continued to search for a job but has not had any luck yet. She is very disheartened about ever finding employment. Her Cobra premium assistance ended with the June payment. Her July premium is due to Cobra by July 7th. She has applied to another program for assistance & we hope to hear very soon on whether or not she is approved. Her premiums have increased to $399 per month. If she does not get approved we don't know what she will do. Please pray that she does get approval.

Mark's lay off is in the 5th week of a 6 week lay off schedule. He is off for 2 wks, then works 1 wk, then off 1 wk and then on for 2 wks. It's a 6 wk cycle that will continue until business picks up again. We are very grateful that his employer is doing the lay offs this way because it means that no one loses their health insurance. With some buying of food in bulk, cutting back or out on somethings & using what little we had in savings we will survive this first lay off cycle. JUST BARELY!!! We have not figured out how we will get by if the lay offs go into another cycle & it does look like it will.

Plus Jon's docs want him to have an upper endoscopy to check out his esophagus. This would be a day surgery procedure. Our costs would be from $500 to $1000! At this time we are delaying scheduling the procedure until we figure out how to pay for it.

In our family it sometimes feels like "when it rains it pours." I also need surgery. My iron counts have been low for 2 years and now my blood counts are dropping and not rebounding back into the normal range. My counts are not normal but are finally up enough to have the surgery which is scheduled for July 1st. I also have something else going on that could potentially develop into a bad situation if we delay the surgery. But this will be another $500 to $1000. Maybe a little more since it would require an overnight admission afterwards.

I am contemplating postponing the surgery until after Mark's job situation is more stable. The problem with doing that is IF things go really bad & Mark is permanately laid off we would lose insurance coverage.

We can borrow against Mark's retirement but we can only take out $ one time. I really want to wait & see if the layoffs go into a second cycle & if so use the $ for living expenses. So it's one loan we can do... for living expenses? Jon's procedure? My surgery? And no we can't take out enough for all 3. There isn't that much available plus we will have to pay it back in deductions from Mark's paychecks afterwards. Should Mark get permanately laid off we wouldn't have to pay it back, per se, but would have to pay early withdrawal penalites & taxes when we file our 2009 income taxes.

What a stressful place we are in now. Jen's Cobra premiums - Mark's lay off - Jon's procedure - Mom's surgery - Jen employment(or lack there of). Even with all the negative stressful things going on in our lives we do have so wonderful praise reports! Thru bulk buying we managed to get $250 in food money to last for 4 weeks instead of the usual 2 weeks. We've also been given unused food items after helping at church events which really help stretch our food $ even more. Mark, unexpectedly, received $39 from an insurance classaction settlement that we didn't realize we were a part of. My pay from working church nursery for May was more than usual.

We have many trials and tribulations in our lives but we also have many blessing too. Blessings that in a very tangible way show us(& others too I hope)that God is always with us. He is the rock that we float on during these storming times.

Tuesday, May 19, 2009 10:18 PM CDT

Clinic went very well. Jon's labs were great. Exam was good. Labs still at 3 months apart and clinic 6 months apart. Jon had a very good talk with the surgeon about his gengraf. The only downside was that the new hepatologist wants to talk with the doc Jon usually sees, about the issue he is having with swallowing. He drinks a lot while eating because he feels as if the food is getting stuck. She brought up the possibility of an upper endoscopy to make sure his esophagus is ok. Jon was not thrilled with the idea, me either. But we''ll see what they say when it is discussed.

I have to say I was very happy with the way the surgeon handled things with Jon. Mark & I had talked to Jon until we were blue in the face & couldn't make him see how dangerous it was to come off it. A 15 minute conversation with a doctor Jon has not seen in 3 years and he sees the light. Yep, he's a teenager. Parents don't know anything!

All in all a good visit. Labs 4 times a year, team twice a year, & only 3 meds. Now if we could only find a solution to the teenage rebelliousness!

Monday, May 11, 2009 11:41 AM CDT

Jen – As per instructions from her transplant team Jen had labs again on the 7th. Prograf level is down to 13.5. She’s waiting to hear from the team on whether they want her lower than that. Our concern is that she’ll go too low. It’s always a fine line between too much and too little with Jen.

We found out that there was a recall on a certain brand of vanilla ice cream. The very brand and type Jen had eaten the night before her last vomiting episode. This episode was different in that it was in the middle of the night. We are still watching for potential food intolerances and reflux issues but at least we think this last time was due to the bad ice cream.

She finished the Oasis orientation. It included a questionnaire on interests and job skills. She goes back today to see the results and to work on a resume. The Dept of Labor is conducting the program and they said they hope to place everyone participating in jobs by the end of the 6 weeks. We are praying that that will be so.

Jon – He had labs again on the 7th also. His numbers were all good. He did have some cyclosporine in his blood this time. Less than 50 which is the lowest the lab goes to. Usually he is undetectable but occasionally there is some cyclo detected. I guess this was one of those times.

He has transplant clinic this Wednesday. He has some very serious issues to discuss with his doctors. Please be in prayer for him that everything is worked out for a positive future outcome.

Thanks everyone for stopping by. I’ll update more after clinic.

Saturday, May 2, 2009 3:21 PM CDT

Jen’s labs results are back. Her liver numbers are GREAT! But her prograf level is 19.1, way to high. She had expected a call back on Friday to reduce the dose but didn’t get one. She’ll call again on Monday. Too high a prograf level can damage her kidneys. So far they are doing well. It’s like that protective hedge God put around her kidneys 3 years ago when her prograf level was being run high on purpose is still there. So she is, once again, doing the prograf dance.

She's also begun experiencing some vomiting with milk products. Ice cream, cereal with milk, that type of thing. Vomiting is not good when on meds that need to stay at a steady level. We'll keep an eye on this & if it persists then Jen will let the doc know when she returns to transplant clinic in June.

She’s still job searching. On the 5th she’ll go to the orientation for the Oasis project. Hopefully this will help in her finding employment.

Jon’s recent labs were also great. He is contemplating a change in his immunosupressant medication. He’ll go to transplant clinic later this month to discuss this with his team. He has successfully weaned on the gabapentin but has had to go back on the zoloft. It is still unclear on whether or not he is tolerating the once a day dosing of nexium or not. We’ll keep watching how often his heartburn occurs and along with the doctors decide if he should go back to twice daily dosing.

He’ll get labs again before transplant clinic and the decision will be made then on a further lab schedule. Emotionally things are pretty rough now but we are praying it gets better soon. I think the lingering emotional side effects from treatment are playing a part in his rebelliousness. If you have any extra prayers you can spare Jon could certainly use some.

Monday, April 20, 2009 5:16 PM CDT

Here's a brief update on both Jen & Jon.

Jen is doing well liverwise. We couldn't ask for better numbers. She was recently diagnosed with migraine headaches & we are hopeful that meds will help lessen the frequency & pain. Her kidneys, that we worry so much about, are doing great too. Her steriods are being slowly reduced, probably back to her baseline of 5mg daily but Jen plans to ask if her dose can go to 2.5mg daily. She sees the team hepatologist every 3 months and has labs every 2 weeks because of doing the prograf dance.

She finished college in December and is currently looking for employment in the area of healthcare assisting or medical receptionist. Her current meds are: prograf, cellcept, prednisone, actigall, tenormin, paxil, desogen, omeprazole, calcium plus D, magnesium, and imitrex.

Oh yeah, she's off insulin and her diabetes is controlled by diet alone!

Jon is also doing well liverwise. A recent ammonia level was normal, so for now, we know he has completely normal liver function. We have decided that we are giving over to God the worry about any future progression of liver scarring. Only He knows what His will is for Jon but we have faith that no matter what the future brings God will bring us through it.

Jon is on gengraf(cyclo), nexium, gabapentin, & zoloft. He is presently weaning down on the gabapentin & zoloft with the hope to eventually discontinue both. He has labs every 3 months and sees the transplant team every year. He is still having a rough time with emotional side effects lingering from treatment so he could still use your prayers. He is also going through somewhat of a rebellious phase so Mark and I could use some prayers for patience and guidance. And we thought the medical stuff was the hardest thing about parenting.

Thanks for stopping by to check on Jen & Jon. If you are so inclined to sign guestbooks please leave Jen & Jon a note and let them know you stopped by.

love,

Karen

Wednesday, April 15, 2009 4:07 PM CDT

Jen is having some headaches lately. She's also seeing brightly colored spots in her vision and this morning had a major bad headache. She may be having migraine headaches. We don't think it has anything to do with her cataracts. She will get checked out tomorrow by a local doc just to make sure.

Tuesday, April 7, 2009 11:56 AM CDT

April is National Organ Donation Awareness. Our special liver friend Aiden's mom shared this and we are sharing it here with all who visit to check on Jen & Jon.

It can be hard to think about what's going to happen to your body after you die, let alone donating your organs and tissue. But being an organ donor is a generous and worthwhile decision that can be a lifesaver. Understanding organ donation can make you feel better about your choice. If you've delayed your decision to be a donor because of possibly inaccurate information, here are answers to some common organ donation myths and concerns.

Myth No. 1. "If I agree to donate my organs, my doctor or the emergency room staff won't work as hard to save my life.They'll remove my organs as soon as possible to save somebody else."

Reality: When you go to the hospital for treatment, doctors focus on saving your life, not somebody else's. You'll be seen by a doctor whose specialty most closely matches your particular emergency. The doctor in charge of your care has nothing to do with transplantation.

Myth No. 2." Maybe I won't really be dead when they sign my death certificate. It'll be too late for me if they've taken my organs for transplantation. I might have otherwise recovered. "

Reality. Although it's a popular topic in the tabloids, in reality, people don't start to wiggle a toe after they're declared dead. In fact, people who have agreed to organ donation are given more tests to determine that they are truly dead than are those who haven't agreed to organ donation.

Myth No. 3. "Organ donation is against my religion".

Reality. Organ donation is consistent with the beliefs of most religions. This includes Catholicism, Protestantism, Islam and most branches of Judaism. If you're unsure of or uncomfortable with your faith's position on donation, ask a member of your clergy. Another option is to check the federal Web site OrganDonor.gov, which provides religious views on organ donation and transplantation by denomination.

Myth No. 4. "I'm under age 18. I'm too young to make this decision."

Reality. That's true, in a legal sense. But your parents can authorize this decision. You can express to your parents your wish to donate, and your parents can give their consent knowing that it's what you wanted. Children, too, are in need of organ transplants, and they usually need organs smaller than those an adult can provide.

Myth No. 5." I want my loved one to have an open-casket funeral. That can't happen if his or her organs or tissues have been donated. "

Reality. Organ and tissue donation doesn't interfere with having an open-casket funeral. The donor's body is clothed for burial, so there are no visible signs of organ or tissue donation. For eye donation, an artificial eye is inserted, the lids are closed, and no one can tell any difference. For bone donation, a rod is inserted where bone is removed. With skin donation, a very thin layer of skin similar to a sunburn peel is taken from the donor's back. Because the donor is clothed and lying on his or her back in the casket, no one can see any difference.

Myth No. 6." I'm too old to donate. Nobody would want my organs. "

Reality. There's no defined cutoff age for donating organs. Organs have been successfully transplanted from donors in their 70s and 80s. The decision to use your organs is based on strict medical criteria, not age. Don't disqualify yourself prematurely. Let the doctors decide at your time of death whether your organs and tissues are suitable for transplantation.

Myth No. 7. "I'm not in the greatest health, and my eyesight is poor. Nobody would want my organs or tissues. "

Reality. Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs and tissues may be fine. Don't disqualify yourself prematurely. Only medical professionals at the time of your death can determine whether your organs are suitable for transplantation.

Myth No. 8." I would like to donate one of my kidneys now, rather than wait until my death. But I hear you can't do that unless you're a close family member of someone in need. "

Reality. While that used to be the case, it isn't any longer. Whether it's a distant family member, friend or complete stranger you want to help, you can donate a kidney through certain transplant centers.

If you decide to become a living donor, you will undergo extensive questioning to ensure that you are aware of the risks and make sure you're giving away your kidney out of pure goodwill and not in return for financial gain. You will also undergo testing to determine that your kidneys are in good shape and that you can live a healthy life with just one kidney.

You can also donate blood or bone marrow during your lifetime. Contact your local chapter of the American Red Cross for details on where you can donate or sign up.

Myth No. 9. "Rich, famous and powerful people always seem to move to the front of the line when they need a donor organ. There's no way to ensure that my organs will go to those who've waited the longest or are the neediest."

Reality. The rich and famous aren't given priority when it comes to allocating organs. It may seem that way because of the amount of publicity generated when celebrities receive a transplant, but they are treated no differently from anyone else. In fact, the United Network for Organ Sharing (UNOS), the organization responsible for maintaining the national organ transplant network, subjects all celebrity transplants to an internal audit to make sure the organ allocation was appropriate.

Myth No. 10." My family will be charged if I donate my organs. "

Reality. The organ donor's family is never charged for donating. The family is charged for the cost of all final efforts to save your life, and those costs are sometimes misinterpreted as costs related to organ donation. Costs for organ removal go to the transplant recipient.

How to donate
Contrary to popular belief, signing a donor card or your driver's license does not guarantee that your organs will be donated. The best way to ensure that your wishes are carried out is to inform your family of your desire to donate. Doing this in writing ensures that your wishes will be considered. Hospitals seek consent of the next of kin before removing organs. If your family members know you wanted to be a donor, it makes it easier for them to give their consent.

If you have no next of kin or you doubt your family will agree to donate your organs, you can assign durable power of attorney to someone who you know will abide by your wishes. A lawyer can help you prepare this document.

Please consider giving the Gift of Life. Thanks to 3 families Jen and Jon are alive today. Thank you donor families!
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Monday, March 30, 2009 7:50 PM CDT

We are praising the Lord for all the good news received today! We got most of Jonï¿½s lab results back. His cyclosporine level is ï¿½none detected.ï¿½ Nothing needs to be done about this as his body is tolerating the low levels without trying to reject his liver & actually has been for several years. Everything, liver, kidney, blood counts, just everything is within normal limits. Ast & alt in the teens! Teens! God is SO awesome!

Before I even get to what transpired today with Jen I have to share some fantastic news. She is now completely off BOTH types of insulin! Sheï¿½s been off the nighttime type for 2 weeks and mealtime for 1 week. She did ï¿½cheatï¿½ with her biscuit this morning & had a regular soda not diet and as a result her glucose was a little elevated. But now we know her glucose can be control by diet. WOO HOO!!!

So today she had clinic and labs at Emory. Since she had been sick since last week we were so worried that she was rejecting again. Praise the Lord! Again! She is NOT rejecting. Her liver numbers, in the words of her doctor ï¿½you canï¿½t get any better than this.ï¿½ Sam is happy and so are K & P. (for those of you who are not familiar ï¿½ Sam is Jenï¿½s liver and K & P are her kidneys). She has a cold, a common cold. Sheï¿½s coughing but the doc said she sounded clear in her lungs. Due to the vomiting sheï¿½s had lately the doctor wants her to start taking a med for what seems to be acid reflux. This is common with the cellcept she is already on. Her magnesium was low and we will keep an eye on that as it can be contributing to her tiredness. Weï¿½ll watch it to make sure it doesnï¿½t go lower. If it should decrease further then there will be another med to add at that time. Whatï¿½s one more med right? We were so happy she wasnï¿½t rejecting or getting admitted that we were almost giddy. Plus she got the ok to reduce her steriods! Thatï¿½s another big Praise the Lord! Itï¿½s a small reduction but the smaller & slower the better chance that her body will tolerate it well. She gets labs in 2 weeks since she had a med dose change but doesnï¿½t have to return to clinic for 3 months.

We feel so blessed to have both kids have such great lab results, especially the wonderful liver labs. I love this Bible verse & I try to remember it daily. ï¿½Let him have all your worries and cares, for he is always thinking about and watching everything that concerns you.ï¿½ I Peter 5:7

Thanks for stopping by to check on Jen & Jon.

Friday, March 27, 2009 8:52 PM CDT

I wasn't going to post anything but Jen & I both are concerned and would like to ask for prayers for her. Jen's been feeling under the weather for 2 days now. Headaches that today have progressed to being sensitive to light, some fatigue and a little itching. She says the itching is only on one area of one arm tho. No more yellowness to her eyes than what is usual. It's starting to sound too familiar, too similiar to Dec when she rejected. Her labs on March 6th were good but her prograf was 6.4 which was low for her.

We didn't think anything about not hearing to change her dose since her numbers were excellent. However on Wed(19 days after labs)she got a call to increase her prograf dose & get labs in a week. Odd that it was so long after labs. Possibly her coordinator went out on maternity leave & things got caotic on their end??? I just hope her #'s are still good on Monday. Her regularly schedule clinic appointment is then along with labs. We do plan on asking the lower limit for Jen for prograf. We know it's 14 for upper limit & if we don't hear within 24 to 48 hours if 14 or more to call and ask for instructions. We just don't have the lower limit specific for her. It's looking like anything under 8 which stinks for her kidneys long term.

If ya'll would keep her in your prayers we'd really appreciate it. I'll update Monday after clinic and labs.

Wednesday, March 18, 2009 4:19 PM CDT

Just a short update. Jen's recent labs were great. Her blood sugar control is very good. So much that she has stopped taking the night time insulin and has reduced the meal time insulin. This recent change gives us hope that she may be able to come off insulin if her oral steriod dose is reduced in the future. She is due for a transplant clinic checkup at the end of the month.

She is still looking for employment. Please keep her in prayer that she will find something.

Thursday, March 12, 2009 4:38 PM CDT

Friday, March 6, 2009 5:16 PM CST

While I was with Jen at a doctor's appointment and getting labs Jon called. He had just gotten hit by a car while riding his bike. Scared the heck out of me. The car didn't stop at all. Jon was at a friend's house and he sounded ok & said he didn't have any marks or scratches that he could see but his head hurt slightly. His friend said he looked ok so I thought we'll be done soon & I'll get home and check him out. Mark called & decided to get off work and check on Jon. Mark said Jon was complaining more about his head, his pupils looked funny & his back hurt and Jon's knees were purple & he was taking him to the ER now.

Long story short he is ok. His headache is now very minimal. His back is hurting but chest, neck & spine x-rays were normal. Well except that the doc said Jon doesn't have good posture & it looked like he was developing arthritis in his spine(what?). Jon's legs & knees are ok. His knees are pretty red & bruised and will probably look worse tomorrow and he will mostly likely be very sore too.

The police officer & the doctor said Jon was extremely lucky that he didn't get hurt worse. With the condition of his bike it is only by the grace of God that Jon was not killed or badly injured. Jon only remembered that it was a "white flash." The police figure the car's side mirror is what hit Jon. Jon was not on the road he was on the shoulder. The officer did find white paint on Jon's bike so they are looking for a white car with mirror damage.

Ok, that was more excitement than we needed. I am just praising God for keeping Jon safe.
__________________

Saturday, February 21, 2009 3:59 PM CST

Yesterday was Jen’s 23rd birthday. At this time 23 years ago Mark & I were amazed by our beautiful baby girl who had SO much hair. My pregnancy went well.

The birth wasn’t too bad especially considering the epidural only worked on one half of my body. Everywhere we went people would comment on how much hair she had. At 5 months old we started to use barrettes to keep it out of her eyes.

The first year was tough. She was in and out of hospitals 4 times. One of those times she was septic and we almost lost her. Despite all that she grew and developmentally was on time or early. She even walked at 9 months old. WAY before we were ready for her to be mobile.

She was evaluated at Walter Reed Army Hospital in 1989 and it was decided that we needed to be closer to a major medical center that could handle her situation if it became critical. In 1990 we moved to Texas but only stayed 5 months because Mark deployed to Saudi Arabia during Desert Shield/Storm. Jen & I came back to Georgia for about 5 months. It was during January of 1991 that Jen’s health took a downward turn after several years of being very stable. She had pneumonia & started taking diuretics. Her liver had started to lose it’s ability to do all the things a liver should do.

In April 1991 after we have moved back to Texas she began to have hyper splenic episodes where when she had an infection her blood counts would drop. This was all related to her declining liver function. In April 1992 our worse fear occurred. Jen had her first major massive internal bleed. She had many times of sclerotheraphy from April to July to try and control the varices she was bleeding from. During the last attempt in July the doctor decided the treatment was no longer working and it was time to refer Jen for a liver transplant.

She was evaluated at Hermann Hospital in Houston, Texas. It was taking a while for the financial negotiations between the hospital and CHAMPUS(our insurance). Too long for Jen’s doctors’ comfort and in November Jen was sent to Children’s Medical Center in Dallas for evaluation. While waiting on the final paperwork between CHAMPUS & Children’s Hospital Jen had another major massive bleed. During the first week of December 1992 Jen was activated on the UNOS list. The doctors were very concerned Jen would bleed out before she could get a liver & recommended a TIPS. That is a shunt procedure done to “buy” more time while Jen accumulated time on the UNOS list. The shunt would divert blood flow in hopes that she would not bleed again. Unfortunately our insurance would not approve a civilian hospital to do this procedure because there was a military hospital that could do it. Much to our dismay the procedure did not go well. The shunt did not lodge were it was intended to lodge. The transplant surgeon in Dallas was called & he knew right away it could cause a major complication during Jen’s liver transplant surgery.

On February 25, 1993 Jen was called for transplant. The surgeon’s fears were right; Jen had massive bleeding during her surgery because of the shunt. She also had many other complications during her 126 day admission. Acute renal failure requiring dialysis, return trip to the OR to repair an anastomosis, massive bleed from varices requiring banding, preservation injury to the liver, CMV hepatitis, CMV pneumonia, an abscess by the cut side of her liver, line infections, tracheotomy, and many others. Mark & I spent many hours by her bedside not knowing if she would survive. But that fighting spirit she displayed as an infant was still there and she fought hard and survived.

Jen had 4 re-admissions during the first year post transplant. After that her health settled down. She didn’t grow well but her liver, her Gift of Life, worked hard at the basis functions to keep her stable. That precious Gift gave Jen life for almost 10 years before it could do no more. For those years we are so thankful to Jen’s donor family. All we know is that her donor was about 26 years old, was female and from the Galveston area of Texas. Just saying thank you will never be enough for giving our daughter those many years.

In 2002 Jen was listed for her 2nd transplant. She received her 2nd Gift of Life in December 2002. She had acute renal failure again which required dialysis. She also had a period of time when she did not respond neurologically. This frightened Mark & I greatly. It was thought to have been prograf toxicity, possibly related to her renal failure I believe. All we know about her second donor was that he was 16 years old and from Arkansas. Again saying thank you to her donor family will never be enough. How can you ever thank anyone enough for giving your child the Gift of Life?

In the 6 years since her 2nd transplant Jen has had 7 admissions, multiple rejection episodes and has developed diabetes. However she has also finished high school and gone to college to receive training to be a Healthcare Assistant, or Certified Nursing Assistant or Medical Receptionist. As of her 23rd birthday she is seeking employment in one of the 3 areas she trained in. She is ready to earn her own way in the world, find the right man to marry and live just like any other young woman.

Happy Birthday my precious boo!

Thursday, February 12, 2009 5:19 PM CST

Someone recently posted a thread at LF about how not to “live liver.” I’ve thought and thought about that. I’ve come to the conclusion that we “live liver” and will always “live liver.” I guess with two kids post transplant and one of those post transplant twice and not knowing for sure that the other one won’t be facing a second transplant in the future makes it hard for us to not “live liver.” That is not even including the fear that Jen could face kidney failure in the future. I guess then we will be “living liver and kidney.”

I feel like I am always scheduling or going to an appointment, waiting on a call back, getting labs done, ordering meds, picking up meds or waiting on USPS or Fed Express to deliver meds or trying to remembering to get the 2 meds that are OTC somewhere locally. I split up meds and order different ones on a 3 months rotation schedule so that our monthly med co pay is $300 whereas if all were ordered at same time it would be $900. Paying one medical bill or another or two or three or deciding which bill doesn’t get paid because we ran out of money before we ran out of month. Making payment arrangements is a frequent part of our lives. I thank God for billing personnel that are nice & understanding and so dislike dealing with the ones who are so aggressive about getting their money now. Getting mistakes on claims corrected takes hours and hours each month. Now we are in the process of getting Cobra for Jen. Fun stuff with no “active” coverage temporarily. At least we got word today that Georgia Transplant Foundation will help with premiums for 3 months with the possibility of another 3 month extension if needed.

From January 1st 2008 until January 31st 2009 this is what transpired or at least what I can remember. This all includes both Jen & Jon.

Doctors visits
1 Gyn
1 ENT
1 Ophthalmologist
2 Surgical consults
4 Psychiatrist
7 Radiology consults
9 Psychologist
13 Transplant team
14 Primary Care

2 In-patient admissions
3 ER visits

1 nasal swab
1 bone density scan
2 chest x-rays
2 EKGs
2 ultrasounds
2 Cat scans
2 liver biopsies
2 quick strep checks
4 times daily glucose checks
38 sets of labs

1 MMR immunization
2 flu shots

2 pharmacies
2 Meds discontinued
4 solumedrol boluses
4 times daily insulin injections
4 new medical supplies(diabetic)
7 rounds of antibiotics
8 new medications
11 medication dose changes
16 daily medications

1 diabetes education class
2 different transplant teams

16 years dealing with post transplant issues(will be on the 25th)
23 years of dealing with liver disease/issues

I think I am not dealing with stress well lately. I hope I am not upsetting anyone, especially families new to LF. My family’s situation is not the usual; please do remember that I have two kids involved. And Jon has not only had to fight through the liver disease he was born with but also another liver disease contracted after his liver transplant. Wheww… I guess I had a lot on my mind.

Sometime I get a little envious of families whose kids get transplanted and go on to have little to no problems. I am glad many, most kid’s recoveries are that way; it does give hope to everyone including me. It helps me to remember “wow, we have an awesome powerful God who is always with us.” Having said all that I do have to also say we have times where we “live liver” but do the usual things of life too. Jen and Jon have been involved in boy/girl scouts, soccer, dance, camping, participated in church youth group activities, paintball, water skiing, rafting, ropes climbing, rode horses, been to 5 amusement parks, rode trains, planes and buses. I guess you can say we “live liver” but we also “live life.”

Thursday, February 5, 2009 4:22 PM CST

2009 is starting with a whole lot of medical expenses. Since January 5th Jen's been to the doctor's office 7 times, had labs 5 times, was newly diagnosed with diabetes, attended diabetes education class, had a chest x-ray, had a Cat scan of her sinuses, been on 2 antibiotics, 1 antiviral, 1 nasal spray, six different med dose changes, and had a $253 jump in medication/supplies. Her total for 90 days of meds & supplies are now a whopping $614. And that total does not include the $66.84 for "short term" meds(7-10 day meds). There's also been $100 in copays for the doctors.

Jen's hepatologist in Atlanta calls Jen a "challenging" patient. Mark & I call her our "high maintance" kid. But you know what despite all she has been through & is going through she still has a smile on her face & has a very positive attitude.

She reminds me that God is always with us. God is good all the time.

Saturday, January 31, 2009 5:02 PM CST

Jon is still coughing. It's better almost gone but not quite and his cough is still productive. I'll give it another week and if it's not completely gone then it's back to the doctor for another check. I need to ask for prayers for Jon. He is having some major issues that I can't go into, nothing healthwise but is in need of a lot of prayers for his future.

Jen saw her local doctor on Wednesday & he said her lungs sounds pretty good and the chest x-ray was clear. She is to finish the antibotics. The diabetes education class was Wednesday afternoon. It was very informative and Jen received more handouts & a cookbook to help with meal planning.

On Thursday she was seen by the hepatologist at Emory and had labs run. Her liver & kidney numbers were great. Her ggt is down to 57! The doc said her lungs sounded pretty good to him too but that she did have some bronco-spasms on exhaling. Again she was told to finish the antibiotic and if the cough did not go away soon, especially if after the antibiotic is finished to have a CT of her sinuses. They have found that sometimes the sinuses in post transplant patients can habor nasty germs that are hard to get rid of with usual antibiotics. So we'll see how it goes. This may also be something we want to watch with Jon too since he is also post transplant although his immunosuppression is very very low quite the opposite from Jen.

Jen is learning about how to eat, take insulin, check glucose levels etc. Yesterday for the first time we ordered both types of insulin, syringes, & meter strips from Medco. Wow, $180 is what the order total. Adding the $31 for lancets and alcohol swabs which we get locally puts the total of diabetic supplies at $211 for 90 days. Actually it's more because Medco does the insulin & strips for 28 days each month not 30. It has something to do with how the strips are packaged(100 per box) & you know they are NOT going to send more than you'll need. No they would rather "cheat" you. Insulin is only good for 28 days once you open the bottle. Well this just means ordering for those meds and supplies will be every 84 days not 90. One good thing is that when we order her syringes at the same time as insulin we don't have a copay for the syringes.

We are still learning about diabetes. I think I've said it before and I'll say it again, this stuff is way harder than transplant meds, supplies and etc. It does seems that with the increased insulin doses Jen's glucose levels are under better control. That is except when she is sick and doesn't feel like eating. Those days her glucose is out of whack somewhat. That is an area we need to learn how to deal with.

Any ideas or suggestions anyone? We are very open to any help.

Monday, January 26, 2009 12:19 AM CST

Jon is still coughing at night but not as much so it does look like the antibiotic is helping. Now Jen is sick with, most likely the same thing. She is going to see her local doctor this afternoon as she began running a low grade fever this morning. She is not feeling well at all. She doesn't want to eat because she feels so bad. We are not sure what to do or if we should do anything with her insulin when she does not feel like eating. This is one of the questions we hope will be answered at the diabetic education classes on Wednesday afternoon.

Please keep both kids in prayer. We need to get this viral stuff out of our house. Thanks for stopping by to check on the kids.

Friday, January 23, 2009 2:16 PM CST

It has been a struggle to get Jen's glucose to stay in the normal range. Up, down, up, down, round and round we go. It would have been so much more helpful to have had the diabetes education classes before or very soon after starting insulin. Her class is still not until next Wednesday. This is in many ways harder than going thru the initial post transplant recovery.

Jon is now sick. He saw the doc this morning and was diagnosed with bronchitis. He feels pretty bad. He is just lying around, still eating but it is not like Jon to just lying around doing nothing.

The stress level here is pretty high. Hopefully Jon will be better soon & Jen's glucose levels will stablize quickly.

Friday, January 16, 2009 3:12 PM CST

Well it's official, Jen is diabetic. She is to start taking insulin before supper tonight. She'll take it 4 times a day. she has to check her glucose levels 4 times a day, go to diabetic classes on the 28th & back to the doctor on Feb 3rd. We are now trying to cut back on carbs and sugars for the whole family. It's easier for all of us to eat the same way and besides we all have the same family disposition to diabetes. Jen just has that and prograf and steriods that can cause it too.

She could use some extra prayers as she gets used to all the testing, differences in eating and giving herself an injection 4 times a day.

Tuesday, January 13, 2009 2:52 PM CST

Good news was that Jen's elevated liver numbers were due to rebound rejection from her prograf level being too low. Easily fixed by the increased prograf dose that was started Friday night. Today's labs show only the ggt still elevated but it's down from 561 to 200. That's quite a significant drop.

Bad news is that it was rebound rejection. So Jen's prograf level will be run a little higher than usual for someone 6 years post transplant. Her steriod dose will not be reduced at this time. We are still waiting for today's prograf level but unless it's over 20 the dose probably won't be reduced. She is to return to clinic in 2 weeks and get labs that day also.

This is very typical for how Jen's body reacts after rejection. I think now that the doctors know this, when and if(we hope if)there is another rejection episode her immunosuppressant levels will be kept higher for a longer period of time. Her immune system has gotten very smart and it takes a longer period of time to get back to status quo.

Another bit of good news is that her glucose was down to 169. Still too high but not over 200, we'll take it. If it can be scheduled Jen will see a nutritionist at the next clinic visit. We are keeping a closer eye on her glucose levels both at home and at clinic.

Thanks for stopping by to check on the kids.

Monday, January 12, 2009 2:21 PM CST

We are trying to ride things out until Jen's checkup & labs tomorrow at Emory. Yesterday she had a bad headache so bad that she spent very little time on her computer. And believe me she has to feel really crummy to not play warcraft, chat with friends or check email. Today the headache is better but she's now running a low grade fever. Here's my opinion of liver diseases.

Wednesday, January 7, 2009 2:56 PM CST

Heard from the team. Since only her ggt is up(of the liver numbers)they feel it is safe to wait until Tuesday to get labs at Emory. Jen already has an appointment to see a doc that day too. She is not feeling too well today(Saturday)so I'm hoping this is not the start of something new. Jen really needs a break about now.

Back to Wednesday's update:
Jen's labs are elevated again. Her ggt is up to 561 and glucose was 255 and that was fasting. She is waiting for a call from her team as to when to repeat labs and/or change meds or see the team too.

We are not happy campers right now.

Saturday, January 3, 2009 0:49 AM CST

Jen started itching really badly today. She tried using lotion, taking a shower, more lotion, tried to ignore it, benedryl, everything. She just went down to 10mg of prednisone with Thursday dose so it can't be that??? In clinic she scratched one time the week after her discharge and the doctor immediately asked about how itchy she was. Of course that was the day her numbers were up & she got solumedrol in the outpatient infusion room.

Her rejection episode in December was different in that we couldn't see yellow in her eyes until her bili was over 3 almost 4 and then only in the bottom of the whites of her eyes. No headaches, appetite's fine, so we've decided to wait on getting labs until Monday rather than Tuesday(scheduled) since locally it will take until Wednesday afternoon to get the results. If any other symptoms develop she'll be off to the ER for labs.

Why does this stuff happen on the weekend and/or after office hours??? Just keep her in your prayers that this is just dry skin.
__________________

Tuesday, December 30, 2008 12:37 AM CST

Today is Jen's 6th anniversary of her second transplant. She saw the doctor and had labs today. Her liver numbers continue to improve. Her lft's improved enough so that she will be allowed to reduce her prednisone dose on New Year's day from 15mg to 10mg. She'll get labs locally the week after that then be seen in clinic the week after and see the doctor too. Hopefully at that point everything will be within normal limits and she can go back out to once a month labs and checkups every 3 months.

Her glucose was 110 in clinic and 127 on our monitor from home. We took it to clinic to check immediately after blood was drawn to check the accuracy of our home monitor. So the 200 to 400 reading she got yesterday at home were accurate. She is to see a local nutritionist about diet options and we are still hoping that the reduction of prednisone will also help in this issue too.

Please join us in celebrating 6 years with this most precious Gift of Life. Also join us in remembering Jen's donor family. We also have a friend in the UK got the call for transplant this morning please also remember her in prayer too.

We hope each of you have a very Happy New Year!

Wednesday, December 24, 2008 11:23 AM CST

Indeed it is the season for Christmas miracles. Jen's liver numbers are much improved and some are already within normal range. Prograf was high so her dose was decreased back to where it was before the rejection episode.

Jon's labs are great too. His liver numbers show that his liver even with stage 3 scarring is very happy. And best of all at 15 months post treatment he is STILL infection free.

I hope you all have a very Merry Christmas at your house.
We sure will with all this good news. Praise the Lord for all the blessing He bestowed on us.

Thursday, December 18, 2008 9:17 PM CST

Friday afternoon update:
Jen's prograf level was 13.8. So close to the cut off of 14 for a dose change that the team wants her to get labs on Tuesday.

Jen's liver numbers were better today and so were her kidney numbers too. Prograf was pretty elevated on Monday & today's results were not back before we left clinic so we don't know if it's still up. We are to call if we have not heard from the team by 4pm tomorrow to check on the prograf. If it's still above 14(was 20 on Monday) we'll go down on the dose.

In the meantime Jen's steriod dose was reduced from 20 mg to 15mg. Yes!!! Because she is still so suppressed and is CMV negative she will remain on the antiviral meds for a while.

And best of all her numbers were good enough to go to 2 week labs instead of twice a week labs.

Needless to say we are happy dancing here! We are praising the Lord for His blessings with Jen's health.

Monday, December 15, 2008 3:59 PM CST

Jen's numbers are much better today. Ggt is down in the 400's from the 700's. Other liver numbers are also better. Her kidneys are somewhat agitated although not too bad. She'll get labs again on Thursday and see the doctor too. Also all her viral stuff was negative.

Friday, December 12, 2008 7:01 PM CST

Well as Jen's doctor said her labs today were disappointing. Her ggt is over 700! She is still in rejection it looks like & so she received 500mg of solumedrol again today. To put that in perspective she takes by mouth usually 5mg daily. Her oral dose is now at 20mg & has been since last Saturday. She has to return for labs again on Monday. I'll leave is Jen's account of her first liver biopsy experience without sedation below. You should read it, it's funny.

Oh, the perils of moving from a pediatric hospital to an adult one. During the course of my stay, I was informed I'd be having a liver biopsy, to confirm or deny that my elevated liver enzymes were due to rejection, not some virus. No big deal, I'd had several of these before, nothing new.

Or so I thought.

For those of you who don't know, a liver biopsy involves taking a sizable needle (in length only, it's not very big around), passing it between the bottom two ribs on the right side, through the muscle around the ribs, through the protective lining around the liver, and into the organ itself, to remove a small piece for laboratory testing. There are risks of course, made much rarer by medical advances.

I was never very unnerved by this procedure, since I'd had it so many times it was as mundane as having an IV line started. You see, I've had them since I was around seven years old, possibly earlier, my memory is largly unreliable before seven. I've had five since my second transplant in 2002, and an unknown amount while I had my first transplanted organ. I was always well sedated, not always enough to totally knock me out, but always a sufficient amount to send me straight to 'I don't give a hoot what you guys are doing to me, it's all cool' land. There've been a few times when I didn't really get as mellowed out, and was actually aware of what was happening, but still too drugged to really care. So, there was never any reason to get worked up about this, cuz I remembered so little of the procedures, except for the annoyance of not being allowed to eat for around 8-12 hours before hand, and 2-4 hours after, all to prevent barfing when sedated, which besides being humilating, could be a potential choking hazard. Yay.

Friday, I learned that in the adult hospital, there is no sedation, no lovely trip to 'forget it all' land. You get a couple shots of lidocaine to numb the area up, and that's it. Needless to say, I spent all of friday getting myself more and more riled up, anxious, and sick feeling. When my lunch arrived, I practically vacuumed it up, and immediately regretting doing so, because I knew they couldn't sedate me on a full stomach, no matter how hysterical I became.

When the doctor came by to begin the procedure, I made a strategic retreat to the bathroom to buy a few minutes to attempt a desperate window escape. Being on the seventh floor meant such plans were doomed to failure, and I emerged from the bathroom with all the enthusiasm of a girl going to see her ob/gyn doctor for the yearly exam.

That it was being done in the room was a further insult, as I've always considered the patient room to be a kind of sanctuary, where the worst thing they can do to you involves IV needles and the terror of the catheter sliding out as the nurse searches for the tagaderm and tape. I've always been used to going to the OR, or at the very least to the procedure room, the one room in the hospital I'm actually scared of being in.

Lying on the the bed in my pajama pants and the quintessential hospital gown, I had a moment of mild amusement as the doctor struggled to examine my side without having to touch my breast to move it out of the way. The distraction was short lived, as he had me hold the offending part out of the way, and eventually found a site further down. Let me tell you, I'm tender around those lower ribs, just poking lightly down there is enough to make me cry uncle, and he was really poking and prodding. It was only my faith in the medical field that kept me on that bed.

Swabbing the area he'd chosen merely ramped my anxiety up a few levels, and when he put the sterile drape on it to protect the site from contamination, I was already distressed enough to start breathing erracticaly. As much as I revel in the thrill of battle on Warcraft and other games, I'd never be able to survive in such environments. My pain threshold is remarkably low.

The first shot of lidocaine wasn't so bad, just a shot to numb the skin. I'm not sure if you guys know, but lidocaine burns like heck before it numbs you up, as if it's searing the nerves, killing them and therefore depriving you of virtually all sensation aside from pressure. The burn of that one shot had me extremely uncomfortable. The second shot was hell. I could feel the needle piercing things, and while I've gotten this sensation in my hand while being stuck for labs, having it in my side was a totally different thing. And then the burn kicked in, and I came very close to saying things that would have gotten me in big trouble. And, denying myself the relief of swearing, I just started crying and hyperventilating.

And then the doctor, bless his soul, set the needle down and took my hand and comforted me. Apparently, the worst was over, it would only take a few seconds for the lidocaine to kick in, and I wouldn't feel a thing. As we waited, he coached me on how he wanted me to breathe when he got the sample, and with mom's encouragement, I actually calmed down.

Then, he picked up the "exacto knife", and I just froze, unable to move or think. And I never saw or even felt what he did with it, and was immensely relieved. This sense of euphoria did not last long, as I was able to feel the biopsy needle, and though it was only the pressure of it piercing various tissues, I spent every second expecting to be suddenly assaulted by excruciating pain. I was told to breathe, heard the pop of needle as the sample was extracted, and then it was over.

I watched the doctor put the things back on the tray, removed the drape, and put a bandaid (I kid you not) on the site. A wad of gauze was held in place against it as I was rolled onto my side and told to stay there for about 45 minutes and let things start knitting together.

It was at that point that I opened my big mouth and asked if I could see the sample.

The doctor just laughed and obliged, dropping it into the sterile solution to protect it during its short trip to the lab, and held up the jar. It looked like a long piece of fish poop. Only bright blood red, not the dark red associated with liver. It was gross, truly, and made me silently reaffirm my decision to never eat liver, ever.

And as the doctor departed, mom came over and sat on the end of the bed, and for the first time in a long time, I felt embarrassed about losing my cool in the hospital. For someone used to the hospital before she even got out of first grade, everything was old news to me, and I was totally accustomed to knowing the drill as well as some of the nurses. I liked knowing how things were done and when, exactly how much discomfort to expect, and being able to converse with the doctors and nurses in their own terminology about my problems. For someone like me, being caught off guard like that was horribly unnerving, and making a fuss like I had was really embarrassing. It wasn't the soul-scarring torture I had convinced myself it was. Sure, the lidocaine burns like hell, and the sensation of the needle inside is one of the most unnerving experiences ever, but not waiting four hours for moderate sedation to wear off, and being able to eat normally beforehand was a good trade off.

Because before I was even allowed to sit up and do as I pleased, all the remaining discomfort had faded, and aside from the feeling of the bandaid pulling at the skin, there was nothing to remind me of the procedure I'd just gone through. As much as I sleep, I can't stand laying in bed for four hours, just waiting for the sedation to fully wear off. No lingering nausaea from the drugs, no hours spent in a groggy daze, no waiting around and having to smell the food when breakfast trays are brought around...

As crazy as it may seem, I much prefer this method.

Monday, December 8, 2008 9:11 AM CST

Tuesday pm update: The word is that Jen's biopsy showed mild rejection. We will a full report on Friday at clinic. This makes 6 rejection episodes in just under 6 years.

Here is Jen's account of her first liver biopsy experience without sedation.

Oh, the perils of moving from a pediatric hospital to an adult one. During the course of my stay, I was informed I'd be having a liver biopsy, to confirm or deny that my elevated liver enzymes were due to rejection, not some virus. No big deal, I'd had several of these before, nothing new.

Or so I thought.

For those of you who don't know, a liver biopsy involves taking a sizable needle (in length only, it's not very big around), passing it between the bottom two ribs on the right side, through the muscle around the ribs, through the protective lining around the liver, and into the organ itself, to remove a small piece for laboratory testing. There are risks of course, made much rarer by medical advances.

I was never very unnerved by this procedure, since I'd had it so many times it was as mundane as having an IV line started. You see, I've had them since I was around seven years old, possibly earlier, my memory is largly unreliable before seven. I've had five since my second transplant in 2002, and an unknown amount while I had my first transplanted organ. I was always well sedated, not always enough to totally knock me out, but always a sufficient amount to send me straight to 'I don't give a hoot what you guys are doing to me, it's all cool' land. There've been a few times when I didn't really get as mellowed out, and was actually aware of what was happening, but still too drugged to really care. So, there was never any reason to get worked up about this, cuz I remembered so little of the procedures, except for the annoyance of not being allowed to eat for around 8-12 hours before hand, and 2-4 hours after, all to prevent barfing when sedated, which besides being humilating, could be a potential choking hazard. Yay.

Friday, I learned that in the adult hospital, there is no sedation, no lovely trip to 'forget it all' land. You get a couple shots of lidocaine to numb the area up, and that's it. Needless to say, I spent all of friday getting myself more and more riled up, anxious, and sick feeling. When my lunch arrived, I practically vacuumed it up, and immediately regretting doing so, because I knew they couldn't sedate me on a full stomach, no matter how hysterical I became.

When the doctor came by to begin the procedure, I made a strategic retreat to the bathroom to buy a few minutes to attempt a desperate window escape. Being on the seventh floor meant such plans were doomed to failure, and I emerged from the bathroom with all the enthusiasm of a girl going to see her ob/gyn doctor for the yearly exam.

That it was being done in the room was a further insult, as I've always considered the patient room to be a kind of sanctuary, where the worst thing they can do to you involves IV needles and the terror of the catheter sliding out as the nurse searches for the tagaderm and tape. I've always been used to going to the OR, or at the very least to the procedure room, the one room in the hospital I'm actually scared of being in.

Lying on the the bed in my pajama pants and the quintessential hospital gown, I had a moment of mild amusement as the doctor struggled to examine my side without having to touch my breast to move it out of the way. The distraction was short lived, as he had me hold the offending part out of the way, and eventually found a site further down. Let me tell you, I'm tender around those lower ribs, just poking lightly down there is enough to make me cry uncle, and he was really poking and prodding. It was only my faith in the medical field that kept me on that bed.

Swabbing the area he'd chosen merely ramped my anxiety up a few levels, and when he put the sterile drape on it to protect the site from contamination, I was already distressed enough to start breathing erracticaly. As much as I revel in the thrill of battle on Warcraft and other games, I'd never be able to survive in such environments. My pain threshold is remarkably low.

The first shot of lidocaine wasn't so bad, just a shot to numb the skin. I'm not sure if you guys know, but lidocaine burns like heck before it numbs you up, as if it's searing the nerves, killing them and therefore depriving you of virtually all sensation aside from pressure. The burn of that one shot had me extremely uncomfortable. The second shot was hell. I could feel the needle piercing things, and while I've gotten this sensation in my hand while being stuck for labs, having it in my side was a totally different thing. And then the burn kicked in, and I came very close to saying things that would have gotten me in big trouble. And, denying myself the relief of swearing, I just started crying and hyperventilating.

And then the doctor, bless his soul, set the needle down and took my hand and comforted me. Apparently, the worst was over, it would only take a few seconds for the lidocaine to kick in, and I wouldn't feel a thing. As we waited, he coached me on how he wanted me to breathe when he got the sample, and with mom's encouragement, I actually calmed down.

Then, he picked up the "exacto knife", and I just froze, unable to move or think. And I never saw or even felt what he did with it, and was immensely relieved. This sense of euphoria did not last long, as I was able to feel the biopsy needle, and though it was only the pressure of it piercing various tissues, I spent every second expecting to be suddenly assaulted by excruciating pain. I was told to breathe, heard the pop of needle as the sample was extracted, and then it was over.

I watched the doctor put the things back on the tray, removed the drape, and put a bandaid (I kid you not) on the site. A wad of gauze was held in place against it as I was rolled onto my side and told to stay there for about 45 minutes and let things start knitting together.

It was at that point that I opened my big mouth and asked if I could see the sample.

The doctor just laughed and obliged, dropping it into the sterile solution to protect it during its short trip to the lab, and held up the jar. It looked like a long piece of fish poop. Only bright blood red, not the dark red associated with liver. It was gross, truly, and made me silently reaffirm my decision to never eat liver, ever.

And as the doctor departed, mom came over and sat on the end of the bed, and for the first time in a long time, I felt embarrassed about losing my cool in the hospital. For someone used to the hospital before she even got out of first grade, everything was old news to me, and I was totally accustomed to knowing the drill as well as some of the nurses. I liked knowing how things were done and when, exactly how much discomfort to expect, and being able to converse with the doctors and nurses in their own terminology about my problems. For someone like me, being caught off guard like that was horribly unnerving, and making a fuss like I had was really embarrassing. It wasn't the soul-scarring torture I had convinced myself it was. Sure, the lidocaine burns
like hell, and the sensation of the needle inside is one of the most unnerving experiences ever, but not waiting four hours for moderate sedation to wear off, and being able to eat normally beforehand was a good trade off.

Because before I was even allowed to sit up and do as I pleased, all the remaining discomfort had faded, and aside from the feeling of the bandaid pulling at the skin, there was nothing to remind me of the procedure I'd just gone through. As much as I sleep, I can't stand laying in bed for four hours, just waiting for the sedation to fully wear off. No lingering nausaea from the drugs, no hours spent in a groggy daze, no waiting around and having to smell the food when breakfast trays are brought around...

As crazy as it may seem, I much prefer this method.

Sunday, December 7, 2008 0:27 AM CST

Jen was admitted to Emory on Thursday and discharged this afternoon(Saturday). I apologize for the lack of updates. We had no computer access at Emory. Wireless all over the hospital but we have no laptop. Gotta get one as soon as we can.

Friday was a busy day. The team looked at the ultrasound that was done late Thursday afternoon. It showed what was thought to be a stent. We were asked & said we didn't know of any stent that she would still have. The thought became that she had cholangitis because of the stent & that it needed to come out. We were asked about how many of Jen's rejection episodes post 2nd transplant were biopsy proven. One of the docs(new to the team)wondered if all of her rejection episodes were actually rejection and not possibly cholangitis instead. However, 4 of 5 rejection episodes were biopsy proven. A CT was ordered and revealed that it was not a stent but what looked like an area of calcification. Ok, that made more sense.

So the question became was this current issue rejection or maybe CMV or something similiar? She was given solumedrol Thursday night as a precaution for rejection. A liver biopsy was done Friday about 6pm. And she got more solumedrol Friday night and another dose just before leaving today. Her numbers on Friday morning responded as if it was rejection that's why she got more even tho biopsy results are not back yet. Won't be until Monday.

In the meantime acyclovir has been add to her med list in case it is CMV. And her cellcept dose was increased back up to 1000mg bid and prednisone to 20mg daily. By the way, cultures were drawn on admission but those results are not back yet. We are hoping for biopsy and/or culture results on Monday or Tuesday. If it is CMV the acyclovir will be d/c'ed and gancyclovir will be used instead.

Her numbers were still elevated this morning but were better especially her bili. Her high was 4.3 and today was 1.something? So it looks like the solumedrol is helping which would indicate rejection but if it is it happened very quickly after her cellcept dose was changed & hepatologist said that wasn't usual. I told him Jen always does things the difficult way. He said she wasn't difficult, she was challenging.

So now????? Do I hope for CMV or rejection? She had a rather difficult time with CMV after her 1st transplant so that scares me. If rejection then holy cow is her immune system quick or what!

As it stands right now Jen will get labs & be seen in clinic on Friday. Biopsy results on Monday may or may not change that. I am off to bed now as I have not had much sleep since Tuesday night. Oh, tomorrow I will post about her biopsy experience, her first without sedation, in her own words.

Thursday, December 4, 2008 6:53 AM CST

We are off to Emory today. Jen's labs on Monday were elevated. After spending 5 hours in the ER last night we found that her numbers are up even more. So we are off to Emory to see the hepatologist and have labs run again. Hopefully this is just a viral thing and not rejection. Will update as soon as I can.

Tuesday, December 2, 2008 9:38 AM CST

Jen has some sort of illness going on. Strange how I hope for a virus. Better that than rejection! She had labs yesterday but results won't be in until tomorrow afternoon. Yesterday she was running a low grade fever, vomitting, and very tired. She was able to eat supper and kept meds down last night. Hopefully her labs won't be too bad. She already has an appointment at Emory on the 18th. We'd rather not have to go in sooner. I will update as soon as we get lab results.

Wednesday, November 26, 2008 8:59 AM CST

HAPPY 18TH BIRTHDAY JON!

Tuesday, November 11, 2008 4:22 PM CST

We are not sure actually what is going on with Jen. She is bruising more than usual which is understandable with a low platelet count. Why her platelet count is below normal we don’t know. She has had knee pain on and off for several years. She was evaluated by an orthopedist several years ago and he suggested physical therapy which she did. At PT sessions they found one leg shorter than the other but Jen does have a 26-29 degree curvature of her spine due to scoliosis(which is not progressing). She was better after completing several weeks of therapy.

Recently her knee has been bothering her and not “locking” as she put it. Yesterday she thought she heard a “pop.” Her knee was not swollen and is better today so???? Who knows maybe she will “feel” the cold weather in her joints as many elderly people do.
She had a normal bone density scan earlier this year so we know that is ok.

Her GI issues from the cellcept have progressively gotten worse. She has been back on cellcept continuously since April 2006. This is the longest time she’s ever been on it. The GI issues in the past are what prompted the doctors to take her off & that one time when she was septic from a UTI.

Cellcept is known to cause low white blood count and/or low platelets. I think it’s time to lower her cellcept dose and see if she tolerates it without rejecting with the eventual goal of getting her completely off of it.

And to top it all off we are having insurance issues. Back in September we submitted the necessary paperwork to show that Jen is still enrolled in college. This keeps her on Mark’s insurance until she turns 25 as long as she’s in school fulltime. Well somewhere along the lines it was not processed properly so she currently has no coverage. Problem is she needs to go in to have her knee checked and needs to see the hepatologist to see why her platelets are low. Hopefully this all will be straighten out in the next few days.

As for Jon he is eating us out of house and home. I don’t know where he is putting it all. I do know that we are spending more $ on food though.

Thanks for stopping by

Karen.

Wednesday, November 5, 2008 4:13 PM CST

Jen’s labs are back. Her potassium is low at 3.3, glucose is high at 172 and platelets low at 139 but everything else is within normal limits. Her prograf is 7.5, ast 16, alt 12, ggt 13. Sam is happy. Woo Hoo! Bun is 14 and creatinine 0.8. K & P are happy too. Double Woo Hoo! We are so doing the happy dance here!

Thursday update - Jen spoke with her coordinator and she is now awaiting word to go down on the cellcept since her liver numbers are so good.

Wednesday, November 5, 2008 4:13 PM CST

Wednesday, November 5, 2008 9:59 AM CST

Hopefully Jen's lab results will be back today. I will update after we get home from school this afternoon.

Today is our liver friend Angel Haley's birthday. She would have been 15 today. HAPPY BIRTHDAY HALEY! Cheryl and Bruce we love & are thinking of you today.

Monday, October 20, 2008 9:35 AM CDT

Jen's news

Thank God her ggt is down to 31! Yeah, yippie we are doing the happy dance for her ggt.

We maybe doing the prograf dance tho. Her prograf level was 16.5. That's way too high for her. K & P(her kidneys) are not happy with it either. Of course Sam(her liver) is loving the high level.

We are waiting to see whether or not her transplant team wants to make any dose changes. If not we'll repeat labs next Monday. Hopefully it will be down but with the new med addition it may not be.

Jen finally had her ingrown toenail taken care of. The doc decided to take the whole toenail off. Yuck! It's healing well tho.

Thanks for stopping by to check on Jen & Jon.

Wednesday, October 15, 2008 10:32 AM CDT

Update with primary doctor – Recently Jon had had a reaction to a mocha drink that scared me & him. I gave him benedrl and he was fine. But then he told me it had happened to a lesser extend when he drank cappuccino previously. Dr P decided that since Jon does not have a reaction when drinking regular coffee, eating chocolate or any milk products that we could skip allergy testing for now and for Jon is avoid drinking mocha or cappuccinos.

Dr P does think Jon has some glucose issues that may or may not be related to the scarring in his liver. We are to keep a check on his glucose levels at home & record them and come back if we noticed his levels are low or high for that matter. Jon is to eat 6 smaller meals a day. More protein(meat, not supplements) and some fat to help slow down the stomach so his glucose doesn’t drop so fast. Jon was also instructed to eat late at night so that his glucose won’t drop so low before breakfast.

Ok, I’m finally ready to update about Jon’s transplant clinic visit. Much was discussed at transplant clinic & at one point I heard something that jogged a memory of Jen’s labs between transplants and I don’t think I processed much else that was said. So I had to go home & think then I had to ask more questions and get other things clarified before updating.

My observations in clinic:
• Before we started talking the doctor examined Jon. He palpated Jon’s abdomen longer, I thought, than he usually does but didn’t say anything was out of the ordinary. In true denial mode I didn’t ask if he noted anything.
• Jon has been on yearly transplant clinic visit since changing care over to this team in 2002. Now they want to see him every 6 months. Why I thought? Again in true denial mode I didn’t ask.

Past of the conversation went like this:

Me: Why does Jon have inflammation on biopsy with the infection gone?
Doctor: We don’t know

Me: Will it continue?
Doctor: We don’t know

Me: How will we know if the fibrosis is progressing since he went from 2003 with no significant fibrosis on biopsy to 2006 biopsy with bridging fibrosis and his lft’s didn’t move?
Doctor: low platelet count and ?????????

I heard low platelet count and stopped processing anything else that was said for a few minutes. I had just noticed several days prior to clinic that Jon’s platelet count had not been over 200 since February. Not below normal but lower than usual for him. But when I heard low platelet count all I could think of was that is exactly what happened with Jen between transplants, a slow progressive downward trend in platelets without lft’s moving. Her situation was very different but still.

Me: how low is low?
Doctor: under 100

I thought ok so we are ok for now. Thank you God. I sure would feel a lot better if he was over 200 on his next set of labs.

Me: his creatinine is at the high end of normal but this is the highest he’s ever run. When does it become a concern?
Doctor: 1.7 he may run a little higher than normal because he has a lot of muscle mass. I would not advise protein shakes, herbal supplements or smoking. That would put extra stress on the kidneys.

We talked about the fact that Jon is still infection free at 1 years post treatment & that at least that would not be a concern if he needs another liver. If the infection were still active it would attack a newly transplanted liver very quickly & the liver would not be expected to last long. Whereas with the infection gone if he needed a liver we would expect it to last a long time.

That was a lot to absorb. The fact that we even talked about the possibility of another transplant scared the heck out of me. We came home & I tried to process all that and had more questions so I emailed.

Me: why return to clinic in 6 months, he’d been on yearly returns
Doctor: I thought you’d want to be seen in 6 months. You usually have questions & if you save them for a year there could be a lot of them. (He knows me well)

Me: What was the other thing you said when discussing sign of fibrosis progression.
Doctor: bigger spleen, low wbc, dropping albumin, increased PT. He added that Jon would be at less risk with the infection being negative.

Me: Was his spleen enlarged or ever been?
Doctor: no and no

Me: Liver size? soft? firm?
Doctor: normal and soft

Me: I guess what I’m really asking is how much of a chance is there that Jon will need another transplant
Doctor: I cannot answer that question with any certainty. It does not seem likely at this point.

So only time will really tell if Jon will need another transplant. What we are focusing on is that at this time is that he does not and that is what we are praising the Lord for. We need to learn to not worry unless his labs show that it’s time for concern. We do know that whatever the future brings that if we remember to lean on the Lord we will be able to handle it.

Sunday, October 12, 2008 9:35 PM CDT

JON - I am trying to process what was discussed about Jon in transplant clinic. My huge list of questions was answered but a lot was discussed and some of it was overwhelming. I want to clarify some info and get more questions answered before I do an update on Jon. He will see his local doctor tomorrow for possible glucose issues and to see if we can find out what happened when he had cappuccino recently. He will also get his upper respiratory infection checked again. He is still coughing & it’s now going on 11 days.

JEN - She has heard from her hepatologist. The word is no cellcept dose change for now. She will get labs in the morning & we are hoping her ggt is down. The additional of a new med has the potential to increase the prograf level and decrease the clearance of steriods from the body. The prograf level can be easily monitored by labs. There is not really a way to check the level of steriods in the body. Jen’s cataracts may grow faster if the level of steriods is higher so she will need to get her eyes checked right away if she notices any visual differences.

I will update on Jon as soon as possible. In the meantime please keep him in your prayers. Thanks for continuing to stop by and check on Jen & Jon.

Tuesday, October 7, 2008 7:31 PM CDT

Jon & I are off to transplant clinic tomorrow. I'll have my huge list of questions to ask. Hopefully we will get some answers & I hope to update sometime tomorrow evening. Jon is still sick with his cold or whatever it is. This is the longest he's had a cold that I can remember. Sounds like it's in his chest now. He should be fine in a few more days I hope. We'll
see what the docs say tomorrow about it.
We are still waiting on call backs from Emory on Jen's med changes, med interactions, lab schedule, ggt etc. She, by the way, fighting another infection now and another medication added, an antibiotic for 10 days. That's nine meds now. Feeling like we are still going backwards when it comes to the amount of meds the kids are on.

Tuesday, October 7, 2008 7:31 PM CDT

Jon & I are off to transplant clinic tomorrow. I'll have my huge list of questions to ask. Hopefully we will get some answers & I hope to update sometime tomorrow evening.

We are still waiting on call backs from Emory on Jen's med changes, med interactions, lab schedule, ggt etc. She, by the way, fighting another infection now and another medication added, an antibiotic for 10 days. That's nine meds now. Feeling like we are still going backwards when it comes to the amount of meds the kids are on.

Wednesday, October 1, 2008 10:25 PM CDT

Thursday am update: Jon's running a fever this morning. We'll ride it out for 24 hours & see where his temp goes or is tomorrow am to decide on whether or not to see the doctor. Yep, it's getting to be that time of year when strep & stuff happens.

Jon’s labs are back. At the one year post treatment mark Jon is still Undetectable! PRAISE THE LORD!

There were several numbers that were flagged as out of normal range such as calcium, total globulin, neutrophils, & lymphs. There were numbers that were border line high & others that were border line low. His creatinine is border line high according to this lab reference range. In looking back on my spreadsheet he has not ever been this high. His platelet count is something we are watching too. Except when he was on treatment and his blood counts dropped across the board due to the treatment meds he has always been 250 or higher. His platelet count for the last 8 months has not gone above 200 at all. Low normal range is 130 and he has not gone that low off treatment so that is good. However it does remind me of Jen’s slow slow downward drop in platelets in the years between her transplants.

I have many questions to ask next week in clinic. Why current inflammation? Will it continue? Can we stop it? Will it eventually progress to cirrhosis? Why are some of his numbers not normal(flagged). Some of these labs I have watched over the last year or so go out of whack on and off. Are his kidneys showing signs of damage? Why are his platelets dropping? Why is he continuing to have times of weakness, dizziness, & lately confusion? What the heck happened when he drank cappuccino last week? The last two we will direct to our primary care doctor on the 13th but will mention to the transplant team at clinic just so they are aware of everything going on with Jon.

With the knowledge that he is still undetectable for his infection I feel like I can breathe again. These other labs have me concerned & very anxious but at least I can breathe. I hope that the patient load for clinic next week is light because I do plan on going in there literally with my list of questions.

Tuesday, September 30, 2008 9:34 PM CDT

We are still waiting on Jon’s lab results. On Monday we had to schedule yet another appointment. We are hoping that this new appointment on October 13th will NOT bring referrals out to more specialists. Hopefully our primary can handle the 2 newer issues himself. On the other hand we are very grateful that it looks like Jon’s ruptured eardrum is healing itself and that his hearing is getting better everyday. At least he won’t have to go back to the ENT for possible surgery or have to get a hearing test done.

Jen had repeat labs yesterday. So please be in prayer that Jen’s labs are good as well as Jon’s and that all of Jon’s issues can be resolved quickly and without much intervention or more referrals. We hope to have all lab results back on both kids sometime this week.

Waiting – I really dislike waiting. It makes me wonder if Jon’s labs are not good. If his doctor is waiting until he talks with other doctors on the team before calling us with the results. I am also worried about Jon’s final biopsy results. I wonder if his doctor is waiting until we get to clinic to discuss more rather than go into anything on the phone especially since he knows Jon is coming to clinic next week. I hate waiting to see if the inflammation that was showing on the recent biopsy will continue and cause more scarring – cirrhosis. Why was the inflammation even showing at all with the infection gone?

I hate waiting on his labs because I’m afraid his lft’s will be elevated which would mean inflammation. Inflammation means….. well you get the picture. I hate that he even has bridging fibrosis in the first place. Many of you have asked what is bridging fibrosis. I found the explanation below in my search several years ago.

Fibrosis is scar tissue that forms as a result of persistent inflammation in the liver. If you cut your skin, you form scar tissue which is good. However, if you inflame the liver, you can develop scar tissue or fibrosis which can be bad. If the fibrosis advances, it can start to destroy the liver. Typically fibrosis starts around the portal tract and the mildest form of fibrosis is “periportal”. As the fibrosis extends, it typically extends kind of like spokes from the center of a wheel. The spokes are called fibrous septae. When the fibrous spokes from one wheel meet with the fibrous spokes form another wheel, they form a bridge and we call that bridging fibrosis. This is often called stage 3 by the Knodell classification of grading liver biopsies. If the fibrosis advances beyond this, we call it cirrhosis or stage 4. Cirrhosis is the most advanced form of fibrosis and indicates there is substantial damage to the liver.

One of my biggest fears is that one day our email address will need to change from threelivers to fourlivers. I guess my biggest fear really is that it will need to change to fourlivers but due to the shortage of donated organs Jon will die waiting & we will always be threelivers. Tonight I sit here thinking of another liver family. A family whose child did die waiting for a transplant. Tomorrow will be three years ago that Haley died. If you have not already considered being organ donor I asked that in memory of Haley that you please please consider doing so. You can make a difference. You can save lives, lives life like Haley’s. We love you Haley and will never forget you.

Friday, September 26, 2008 5:12 PM CDT

One year ago today…..
Jon celebrating ending treatment at Outback with a huge steak.

It’s hard to believe where we were with Jon this time last year. This was the day we decided the risks of treatment outweighed the benefits & stopped 3 ½ weeks short of the 48 week goal. The side effects continued for several more months as the medications slowly left his body and even got worse requiring an admission to keep Jon safe in December. We didn’t know if Jon would ever be the same again or if we would as a family. Treatment was so harsh not only on Jon’s body but even more so on his emotional health and even on the entire family’s emotional health. It was the hardest time we’ve even been thorough as a family even harder than both kids going thorough transplants within 15 days of each other.

This time last year I knew it was no longer safe to continue. It seemed like we had to stop to win the “battle” but would ultimately lose the “war.” 2 days ago Jon had “the” labs that will show if he is still free of the infection at the one year post treatment mark. Someone had asked if he would always be at risk for the infection to come back. I believe the statistics show that 99 percent who are free at the one year mark remain free always. He will always have the antibody but not the active infection. There is a big difference between showing the antibody and active infection. The antibody cannot cause further damage to the liver.

So we wait for the results. We also wait for his upcoming clinic appointment to see if answers were/can be found for why he has current inflammation in his liver. Wait… Wait… Wait… it’s what most liver parents hate most the what if’s & why’s and the waiting.

In the meantime we praise the Lord for the healing that has taken place in Jon’s body and emotional health & his renewed spiritual growth. We also thank our Liver Family Friends from all over the world. Please checkout the slideshow below and see how our friends helped make Jon's time on treatment a little easier.

Tuesday, September 23, 2008 9:13 PM CDT

Thursday mini update - Jen's prograf was 10.3. Still in a good range for her, thankfully.

Jen update – After 3 doctor’s appointments & one set of complete labs & then an H & H check Jen now has 1 medication dose change and 5 new additional medications. That’s 11 meds; I think we are going backwards. It’s usually the further out from transplant the fewer meds.

Good news on the labs was her ast & alt were 16 & 17(excellent numbers) but her ggt was 73, still elevated. It was only a different of 3 from last month so it’s “stuck” there. We were concerned. I mentioned that she has not run over the 30’s since her last rejection episode 2 years ago but the hepatologist said since her ast, alt & bili were very good that he was not worried. He did not think she needed a cholangiogram, thank God. I was not even thinking of that possibility. Or at least I didn’t want too because that would mean thinking about bile duct issues and we don’t want to go there. Now if her bili were elevated or becomes elevated that’s a different story. Her t bili was 0.6, excellent.

Jen asked about a reduction on the steriods because of weight gain & cataracts. The doctor didn’t want to try that due to her history of multiple aggressive rejection episodes. He was willing to reduce her cellcept dosage from 1000mg bid to 750mg bid. We have to wait on our mail order pharmacy to deliver it before making the change since she does not have the correct tablets to make the change. In the meantime Jen wants to repeat labs on Monday to check on her ggt. Then she will do labs 2 weeks after cellcept dose change, another 2 weeks then if all is well go to once a month and then back out to 8 weeks. The lab schedule really depends a lot on how her ggt does.

Jen also brought up the area on her back that has gotten infected several times in the past 2 years and that got her a new script for a topical cream to try for a week. Of course just after leaving the transplant clinic Jen began to not feel well. And I do mean RIGHT after, like getting out of the elevator on the first floor to go to the parking deck. Bathroom stop time but we thought it’s just the cellcept doing its thing again. She still was not feeling well after taking a nap on the way home but did eat supper ok. She was up many times during the night and threw up this morning & again this afternoon. She had to redose her prograf this morning because of throwing it up.

She had one doctor’s appointment this morning and still was not feeling well. Got well acquainted with their bathroom facilities though. Her exam went well & she received another new script.

After only eating some soup for lunch she napped between morning and afternoon appointments. The afternoon appointment was with her primary doctor where she received 3 additional new meds scripts. He thinks her gi distress is something viral and to let it run it course, no pun intended, he said. She does have an infected ear lobe for which she received a script for topical antibiotic and a script for an oral antibiotic. Her primary doc likes to be aggressive with any type of infection in Jen for which we are so thankful. We’ve seen infection get out of control rapidly in the past & got the heck scared out of us when she became septic. The third script was for something to help with her anxiety. No flu shot for her today since she was already sick.

So she is to get labs repeated Monday but if she has something viral her lft’s will probably be elevated just from the viral stuff. Because of that possibility we will wait on the making the cellcept change for the time being or at least until her lft’s are normal with the exception of the ggt. Unless it goes higher than it will be back to Emory again.

Now Jen is done with medical appointments for this week and tomorrow begins Jon’s turn. He has 2 doctor’s appointments and will get labs also. Regular labs and “the labs” that we wait on holding our breath.

As I close this update I thank you all for stopping by and for those of you who keep our family in your thoughts & prayers. I have another prayer request for a little baby boy who is a liver friend of ours. He was waiting on the Gift of Life, a liver transplant. He earned his angel wings. We are holding little Gavin’s family in our hearts and in our prayers and extend our deepest sympathies.

Monday, September 15, 2008 9:58 AM CDT

Sunday evening update - Jen has an appointment and labs tomorrow at Emory. On Tuesday she has 2 more appointments. Lots going on. I will update more after all these appointments. Back to last update:

After being born with liver disease and suffering through life threatening bleeds, elevated ammonia levels that affected brain function, ascites, spontaneous bacterial peritonitis, constant itching, fatigue and a very prolong, complicated recovery from her first liver transplant Jen had already been through so much by the time she was 7 years old.

Her recovery time from her first transplant was about 18 months. That is, it took that long for her to stabilize enough to where she only had to get labs & see a doctor once a month. Her first Gift(transplanted liver) never really recovered from preservation injury and then a massive CMV infection. It was a wonderful & very tenacious Gift though. It gave Jen a chance to grow up & functioned for her for almost 10 years. It was a miracle Gift & we thank her donor's family for saving Jen's life.

As her Gift finally began to fail she went thru the elevated ammonia levels again which affected brain function even more the second time around. She had awful itching, fatigue & elevated bleeding times. Once listed for a second transplant her wait was not long, only 4 months. Her recovery from the second transplant was long but not as nearly as long as from the first transplant. Her kidneys did shut down again and she required dialysis for a short time. There was also a period of time where she was not responding neurologically and the Neurology team was consulted. Testing ensued and it was a very scary time but her brain was fine and the final thought was that she had had prograf toxicity probably in part due to the acute kidney failure.

In the 5 years since retransplant Jen has had 6 admissions, 5 rejection episodes(3 mild & last 2 moderate), 4 liver biopsies, 1 life flight to Atlanta due to urosepsis, cellulitis, 2 outpatient GI procedures, regrowth of her cataracts, weight gain from steriods, over 90 medication/dose changes, almost 200 sets of labs, 2 bone scans, chest CT, etc… the list goes on and on….

It has been a lot for someone to go through in 22 years. Jen is going through a very difficult time right now. She thought she knew what she wanted to study in college but after spending 6 weeks in the Rad Tech program she realized she could not continue. We think she is suffering from Post Traumatic Stress Disorder again. Yes again, she went through this just after her first transplant then again about 2 or 3 years later. She started shutting down, withdrawing into her own world. It is now 5 years post second transplant and we think her being in a medical setting(clinical training)triggered some difficult memories. Maybe direct hands on patient care is not what she needs or should be involved in.

With Jon's difficulties last year we realized that emotional health is just as important as physical health. We have to let Jen take time to figure things out. She is thinking of taking 3 classes for fall quarter(starts Sept 30). With these 3 classes she will have the requirements for a certificate for Medical Receptionist. Not a very high paying job but usually does come with benefits. It should be enough for her to pay for her medical expenses, get her own car(independence), personal expenses etc. She may not make enough to move out on her own at first but that’s ok. The big trick will be finding an open position in our area which has been hit hard with unemployment. The local umemployment rates are over 7 percent.

The possibility of her being without insurance after fall quarter ends in December is very real. We have come to accept this. We don’t have a choice. We know that there are programs for medication assistance for those who don’t have insurance. And possible help with labs and physician’s fees for a limited period of time maybe 6 months. Beyond that we just don’t know and we have to remember to give all our concerns over to God. He can carry them and us through them. What is that saying? If God brings you to it he will bring you through it.

Jen will be getting labs & seeing her hepatologist next week. We are praying that her ggt is down to normal and that all her labs are within normal range. She desperately needs for her physical health to be stable so she can concentrate on doing what it necessary for her emotional health.

We know that God will provided the means and the direction He wants her life to go in and we ask for prayer that she/we can discern His will for her.

Proverbs 3:5
Trust in the Lord with all your heart and lean not on your own understanding; In all your ways acknowledge Him, and He will make your paths straight.

Monday, September 8, 2008 6:48 PM CDT

Jon’s final biopsy results are back. There is not really any difference in the 2006 biopsy and July’s(2008) biopsy. This is a good thing and we now know that a major contributor to future dysfunction is gone now that he is infection free.

Jon’s doctor still does not recommend him coming off cyclosporine & Mark and I agree. Jon still has the same amount of scarring that he had 2 years ago, bridging fibrosis. I think that since the next step in progression of scarring is cirrhosis that we should do everything we can to prevent further scarring. Since rejection can cause scarring we can avoid this by Jon staying on the cyclosporine.

He is on an 8 week lab schedule but on the 29th of September he will be one year post treatment so we will wait to get labs then. Prior to treatment Jon was on a 12 week lab schedule. I can’t believe it’s almost been a year since he stopped treatment. It’s been one heck of a year tho, one of the worse years ever. But it’s good now that we can look back and see that he is physically better and emotionally recovering AND infection free.

We are Praising the Lord for the blessings of no further progression of scarring, no more infection, physical recovery from treatment and continuing emotional recovery from treatment.

Sunday, August 31, 2008 7:15 PM CDT

We are still asking for prayer for Jen to find a direction for college and future career. She is going through a tough time right now and could really use some prayers sent her way.

Thursday, August 28, 2008 12:19 AM CDT

Jen’s labs are much better. The only thing out of normal range is her ggt, but it is down from 120 to 76. Still a ways to go to get to her normal range of teens to twenties but as many of you know it is usually the last number to come down to normal. Even all her electrolytes are normal.

Her prograf was down to 3.9 which is on the low side for her but Sam must be liking it with her ast & alt in the teens and ggt coming down. K & P are happy too with a creatinine of 0.8 and BUN of 14.

Ok, so the body is getting back to normal. But she is still struggling with stress due to school. We now feel her pleurisy was entirely due to stress. She is wondering if she bit off more than she can chew. I think she is shocked at the volume of stuff she has to read and absorb. She is the type that can usually read something once and get it. With the amount of new stuff that just is not possible. I am trying to help her study & hope that helps. And to make matters worse she got a tech at the clinical site that was not helpful, was short and curt and told Jen to comp for 2 x-rays where the tech set up the room and did other stuff that Jen was supposed to do. Jen did the right thing as her instructor said and “bobble head” & took the x-ray. But told her instructors at school and did as they said and threw out those comps. This tech absolutely came across Jen’s path at absolutely the wrong time. It totally undermined her confidence. I am telling her to not let one person get to her, to remember all the others who are so friendly & helpful to her.

We did get her to the docs for meds to help with the stress. They wanted to prescribe paxil but the team said to avoid it. They suggested buspar so we got that yesterday and I sure hope it works quickly and well.

We have to find a way that works to help her through this. She will lose insurance coverage if she doesn’t stay in school. Lose of insurance coverage is a huge fear of mine.

By the way for those who are new, Sam is her liver & it’s short for Stay Alive Mister. K & P are her kidneys short for Keep Peeing. That protective hedge we feel God put around her kidneys two years ago is still there. Her kidney function has been great & in normal range for about 2 years now.

thanks for checking in on the kids.

Friday, August 22, 2008 4:35 AM CDT

We are now thinking Jen's pleurisy is stress related. Unfortunately during clinical training students are all over the hospital so they can be exposed to all different types of situations. Jen has seen some things that have upset her. This is making her second guess her career choice. I think she is just overwhelmed with trying to do all the class/home work and clinicals and now the make up work for the time she missed. Please be in prayer that she can get thorough this time and stay in the program. She must be in school to stay in order to keep health insurance. It is very hard to get a job in our area right now with the economy being what it is. A Rad tech stands a great chance of finding something. Medically related fields have better job opportunities than any other field here. Just please join us in lifting her up in prayer for confidence with clinicals and understanding in class.

Monday, August 18, 2008 9:13 PM CDT

Jen had labs & then briefly saw the PA we talked to on Friday night. She was feeling much much better today. The PA thinks it is just pleurisy & wants her on aleve. It is an anti inflammatory & he believes it will help and this should all resolve itself soon.

Her labs were interesting. Ast & alt were down from 43 to 25 and 75 to 45 respectively. Now what got my attention was her ggt. BUT since we don't know if it rose along with the ast & alt because our local ER didn't run it..... I know anytime in the future to ask them to run it. But it was today 120! She's usually in the twenties & teens and has not run above the 30's since rejection 2 years ago. But again we don't know if it rose when the ast & alt did. So the instructions are to repeat labs in 1 week at home.

She will also see the hepatologist in 4 weeks during her break between quarters. We'll be discussing her steriods & other meds in general among others issues that have come up.

I do feel much more at ease since she feels much better. Still some pressure/pain but not as much or as bad. She did not get as winded walking around today. I just wish I knew her ggt was going down for sure. That bothers me, I'll be checking her eyes for any signs of yellowness for sure. But as Jen said this was her "sick" time and for the rest of school there'll not be another illness. I sure hope so.

Please be in prayer for Jen that she's does get better & her labs all continue downwards to normal. Also remember our liver friend Aiden. He is experiencing more health issues and needs our prayers.

Friday, August 15, 2008 11:14 PM CDT

Jen was back in the ER today. Chest pain/pressure came back yesterday and more difficulty breathing. She was winded just crossing campus today. Chest x-ray & EKG were normal. A CT was done, her lungs look normal. There were some possible odd findings on her liver but that could be due to all the surgeries she's had. That's what the radiologist said.

What is worrisome is that some of her liver numbers are elevated. We've called the transplant team and Jen is to be seen Monday morning for labs and to get things "sorted out."

Please keep her in your prayers that this is resolved soon and she doesn't keep missing school and clinical days. Monday is a class day & better to miss class than another clinical day. She is still trying to make up 2 1/2 clinical days as it is now. Also please keep our special liver friend Aiden in your prayers too. He's having a difficult time.

Thanks for stopping by.

Tuesday, August 12, 2008 9:06 PM CDT

Jen has felt much better yesterday and today. Not much pain from the pleurisy at all. Now she just has to reschedule the 2 1/2 clinical days she missed and make up a test too. She only has 5 more weeks of this quarter left, mid-term already. That leaves 84 weeks til graduation.

Jon is progressing along with his studies. We are not really happy with his Bible cirrculum and are looking for something else. Anyone have any suggestions? Also the vocabulary we are not happy with either. Any suggestions there?

Friday, August 8, 2008 5:47 PM CDT

SATURDAY UPDATE: Jen is still having some pain and is tired, but her lungs are still clear as a bell, as the doc said this afternoon. YEAH and PRAISE THE LORD! I would like to ask for continue prayer for our special liver friend Aiden.

On Wednesday Jen's college had survivor day. It's a school spirit type thing with a survivor theme. Each program had at least one team and they competed against each other. There was also a talent competition too. There were 22 teams and Jen's placed 12th. No to bad for a junior team. She had much fun even though she was having some chest pressure/pain. Here's Jen on the drive home from school. See the excitement on her face. She so loves school.

Fast forward about 24 hours and her chest pressure/pain was worse. Wednesday about 10pm we were off to the ER. We spent 5 hours in the ER. After lab tests, chest x-ray, and 4 sticks(1 for labs & 3 for IV placement) the diagnosis was pleurisy, an inflammation of the lining of the lungs. She had no fever and was not coughing so she was given pain meds and sent home. She & I both slept most of Thurday after getting home from the ER at 4am.

Her poor hands and arms. It was hard to get veins. She's been stuck so many times over the years and it only gets harder each time to find a vein suitable for an IV. Her left hand looks even worse in person. You can't see in this picture how swollen it is.

This is her right arm. It hurt me to watch the nurses try to place an IV. It took 3 nurses to get a good vein. But as they say the third time was the charm.

Jen is on pain meds and is to rest as much as possible. Today(Friday)Jen called her transplant coordinator to update her on what's going on. Since Jen is coughing up stuff today she wanted her seen. But it was too late to get to Atlanta before clinic closed so Jen got a reprive until the morning. She'll be seen locally & hopefully her lungs will still be clear. If she starts running a fever or gets worse in anyway she has strict instructions to go the ER. The coordinator said it's Jen's choice on whether she wants to go to the local ER or drive down to the Emory ER. I think we'll go to Emory if necessary. We'd rather Jen be close to the transplant team if further care is needed.

Hopefully she will be better by the morning and just continue to get over this quickly. Prayers would be appreciated. Also please keep our liver friend Aiden in your prayers too. He is experiencing some complicated health issues.

Monday, August 4, 2008 8:08 PM CDT

Today was Jon’s first day of his senior year of high school. My baby is no longer my little boy. It’s hard to believe that in 10 months he will be graduating high school. We still have to get senior pictures done. I’m still trying to put together a scrapbook of his school years so far with some extra pages at the end for this year.

One great thing about homeschooling is that we can do it anywhere. Jen is not driving yet so we have to drive to school everyday and are stuck in Rome until she’s finished. Gas prices being what they are prohibit us from making 2 round trips a day. So today we did 3 of Jon’s subjects at a local park in Rome.

2 more subjects were done at a local library and one on the way home. The park, library, van, anywhere.

Squirrels are so plentiful at this park. They are so used to people they come almost right up to you especially if you have food. Jon got some really up-close pictures.

Tuesday, July 29, 2008 9:24 PM CDT

We have some of the test results that we were waiting on back. I was concerned that the new inflammation in Jon's liver meant that his infection was back.

PRAISE THE LORD!!! Jon is still infection free! I am feeling a lot more comfortable now. Still waiting on the final biopsy results but at least we know it's NOT the infection rearing it's ugly head and causing the inflammation.

Saturday, July 26, 2008 2:35 PM CDT

Confusing biopsy results???

We got preliminary results from Jon’s biopsy. Great news is that there was no cirrhosis. The doctor said that the fibrosis actually seemed to be a little improved. We had heard that with treatment this was a possibility.

Confusing news is that there are some inflammatory cells in some of the lobules or some inflammatory process and the doctor could not say what it is from but did say it did not look like rejection. I immediately thought of a recent email where I asked the doctor the grade & stage of scarring on the 2006 biopsy. It was grade 0(no active inflammation) and stage 3(bridging fibrosis). I think my brain kind of fixated on the word inflammatory & I wondered why would there now be inflammation. He said that because of this he definitely would not recommend that Jon try coming off cyclosporine.

Jon went to recovery then to the floor for observation & was supposed to go home that afternoon as long as there were no complications. Of course wouldn’t you know about 4pm Jon started feeling dizzy, saw spots in his vision, had a pain in his right side & became very anxious. With the exception of the pain it was very much like the episodes Jon has where we think his glucose is low and some what like the vaso vagul(sp)episodes he used to have. His bp was not low(in fact a little elevated) & his H & H which was drawn about 45 minutes before was fine. The pain went away quickly but the dizziness did not go away until he drank about half of a milkshake. All this lead to Jon being kept overnight for further observation

Yesterday before Jon was discharged I asked if the inflammation could be from the zoloft since Jon’s lft’s did rise for several months when he first started on zoloft and rose again when there was a dose change. Dr R hesitantly said it maybe possible but I don’t think he really thought that was the case since Jon’s lft’s are normal now & he is still on zoloft. Plus these are preliminary results and Jon still has pending labs from Monday to see whether or not he is still infection free. The final results of Jon’s 2006 biopsy were different from the preliminary so remembering that has me worried. We won’t know the final results for at least 2 weeks because the pending labs take a week to come back and the doctor will be out on vacation too.

So I’m thinking it could be:
1) the infection is back. 98 percent of those with his type who are infection free at 6 months post treatment are considered as being permanently infection free. Jon was still infection free at 7 months post treatment. Monday’s labs at almost 10 months post treatment are still pending. OK that leaves the other 2 percent. Is Jon in that 2percent?BR>
OR

2) the zoloft is agitating his liver.

We will follow up with Jon’s primary doctor about his possible glucose issues as per the hepatologist suggestion. We definitely have a positive family history of diabetes on both my side and Marks too.

Jon is extremely anxious now. He said he is scared because we don’t know why there is now inflammation and before transplant & treatment we did. Immediately after Dr R told Jon that there was inflammation he said then I won’t stop the gengraf. It came out of his mouth so quickly it floored me. So now we wait for pending labs & final biopsy results. I so dislike waiting.

Wednesday, July 23, 2008 3:49 PM CDT

Tomorrow will start early for us. Jon has to be in Day Surgery at 6am and is scheduled for the OR at 7:30am. We got his lab results, most of them are back. His ast & alt are in the twenties and teens which is very good. The labs to check to see if he is still infection free are still pending but they usually take longer to come back.

We are still hoping for some preliminary results by tomorrow afternoon. We are praying for no further scarring and still praying for option Number 1!

Tuesday, July 22, 2008 6:05 PM CDT

Well Jen's eyes look not quite normal white today but somewhat close to it. Today was her first clinical day. Something new happened to her today. Her hands puffed up especially her right hand. She had a hard time touching her thumb to her pinky finger. It's back to her normal puffiness(steriods) this afternoon. Weird little symptom that we are going to watch. She is NOT getting sick is what I keep repeating to myself.

Here's Jen on her way to first her first day of clinicals

Tomorrow afternoonJon will pre-op for his liver biopsy which is scheduled for 7:30 on Thursday. We are hoping to get into the Ronald McDonald house tomorrow night. We are hoping and praying that his biopsy results will be unchanged from last time. NO further scarring is our prayer. I will update as soon I know any results.

Thanks for stopping by. If you would please leave a message so we'll know you stopped by. Jon could use some encouragement. It's been a tough few weeks.

Karen

Saturday, July 19, 2008 4:07 PM CDT

**Monday update**
After much procrastination we've decided to wait on getting Jen's labs. Her eyes still look off but are not yellow. Her energy level is off but the heat is terrible here. Today's high was 97 with a heat index of 107. The a/c in the van is out so we travel an hour home in the afternoon in the heat. Maybe Jen just needs to take in more fluids to compensate.

**Sunday afternoon update**
Jen's eyes continue to have that off color look, not yellow but not white either. She is feeling a bit puny & tired too. She wants labs tomorrow & I agree, better safe than sorry. I have to wake her at 1am to take meds so that her prograf level will be a true trough level when labs are drawn at 1pm tomorrow afternoon. Please pray that is it something minor like a viral illness and not the dreaded "R" word -- rejection.

The color in Jen's eyes in the picture below is what we do NOT want to see. This was Jen about 3 1/2 months after her first transplant when she was still having major issues with her first transplanted liver.

Back to Saturday's update now
Yesterday Jen had a slight yellowish cast to the corner of her eyes. It would be very difficult for her in school if she had any health issues right now. She has completed only 2 of the final 90 weeks of school & this coming Tuesday she has her first clinical day. Today, thank God, her eyes have an off color look but not yellow.

Please join us in prayer that Jen remains healthy & stable for the next 88 weeks of school. I keep telling her that she can only get sick during the 2 week break between quarters!

Saturday, July 19, 2008 11:17 AM CDT

Saturday, July 12, 2008 2:35 PM CDT

Well Satan was shot down in flames(no pun intended)and the Lord won! PRAISE THE LORD!!! All the obstacles that kept cropping up with Jen getting into the Radiologic Technology program were overcome. She has completed her first week and only has 89 more weeks to go before graduating. She has one more week of classes only, then she’ll have classes 3 days a week and clinicals 2 days a week. She is so excited! I am so excited for her too. She really wants this so much.

Health wise she is doing well. Her biggest issue is the side effects caused by the medications she takes to prevent rejection. Prograf causes high blood pressure. Cellcept causes GI issues. The steriods cause weight gain & cataract growth. Actigall contributes to the GI issues. Then there are side effects of the medications that help with the side effects of the rejection meds. Blood pressure medication causes fluid retention. The over the counter med to help with the GI issues sometimes cause the opposite reaction. The only med not causing a problem is the Caltrate D, however it has the potential to cause kidney stones. It’s like going round and round in a circle, but for the most part Jen has learned to just live with side effects of all these medications.

She is still on an 8 week lab schedule since her last results all came back in the normal range. She does not even have a doctor’s appointment scheduled until December. Wow, when I think about that I realize just how stable she is now. PRAISE THE LORD!!!

Friday, June 27, 2008 12:36 AM CDT

Jon had liver clinic this week. Next month he will have another liver biopsy. Sounds like a rerun of July 2006.

I think I’m beginning to not like the month of July. The last time Jon had a liver biopsy it was July two years ago. That biopsy showed advanced scarring & thus the need for intervention to prevent further progression of the scarring. The scarring was due to the second liver disease Jon contracted after his liver transplant. Intervention came in the form of a treatment medication plan, or as Jon called it “hell in a box.” His meds were mailed to our house in a cooler box, thus the nick name. As of April this year it appears that the treatment was successful. Thank God, since the side effects left Jon & our whole family pretty traumatized.

Today in liver clinic Jon asked again about coming off gengraf. Gengraf is his ONLY immunosuppressant medication. The ONLY medication that he’s on to prevent rejection. Yes, his gengraf level has been undetectable for several years BUT… Does the phrase “if it ain’t broke, don’t fix it” fit here? I think it does. There is no way to tell if his level is just under the cut off for the lab equipment to measure. Suppose that little bit is just what his body needs to keep him from rejecting.

Soooo the hepatologist is opposed to Jon coming off the gengraf & has told Jon that he will have to come to transplant clinic to talk to the whole team about it. He recommends a liver biopsy to see what the condition of Jon’s liver is & wants that information available when the team meeting takes place. The hepatologist is sure that the transplant surgeon will also be opposed to Jon coming off gengraf. And just for the record YES, Mark & I are very much opposed to Jon coming off gengraf.

THe doctor said WITHOUT regularly scheduled labs that once you are yellow it can sometimes be too late to turn around rejection & you’d be talking retransplant. So if Jon ultimately decided to trial off gengraf he would have to have very frequent labs & if it looked like rejection was starting that Jon would have to go back on immunosuppression. Possibly straight to prograf, cellcept & prednisone and not back just on gengraf. Then hopefully triple immunosuppression would stop the rejection & prevent the loss of his liver. If it didn’t then Jon would need another liver transplant.

Biopsy, team meeting—this is all starting to sound a little too familiar; in fact, a lot like 2 years ago.

I overheard Jon & Jen talking Tuesday afte we got home. Jon was telling Jen that if the liver biopsy showed any abnormalities that he would “just suck it up and stay on the gengraf.” I wonder what he meant by abnormalities. His last biopsy 2 years ago already showed advanced scarring/bridging fibrosis and for me that is enough of an abnormality.

I think so much hinges on what the biopsy shows the condition Jon’s liver is in. I am interested in seeing how his liver is doing. Lab results can only show so much. All Mark & I can do at this point is pray that Jon will seek the Lord’s will in his life. I just don’t think God is done with Jon’s life here on earth. Jon has such a testimony of the Lord’s mercy & love that he could share with others.

Jon will turn 18 in 5 months & legally will be able to make his own decisions for his healthcare. It’s so hard to give over this control to Jon after being in control of his healthcare for his whole life. But I am very grateful that Jon was able to sit & talk very calmly & with maturity to the doctor about all of this and that I could remain in the room without screaming at the top of my lungs “NO WAY!”

Most likely Jon's biopsy will be scheduled for the 3rd week of July. We are waiting on confirmation of the dates. This Sunday Jon goes off for 7 days to Camp Independence, a camp for transplant kids. Hopefully he'll use sunscreen this time. His ears still are peeling from church youth camp and they feel like leather. Gross!

With love & prayer for all

Karen

Monday, June 23, 2008 2:44 PM CDT

The picture above is one of our church youth group during their camp time at Global Youth Ministries at Ft Mountain. We have a great, loving, caring bunch of kids & leaders in our youth group. Not only did Jon have a great time at camp but he was also saved. Mark, Jen & I were praying so hard that this time at camp would be helpful to Jon. We prayed he would receive the Lord in his heart. What a sense of peace that has come over our home. This was like getting birthday gifts, Christmas gifts, the Gift of Life (organ donation). No this was better; much much better, this was the Gift of Eternal Life. Thank you God for allowing your Son to die for us so that we might all live.

Another picture from camp. Jon climbing the tower.

Saturday, June 21, 2008 10:56 AM CDT

We got good & bad news at Jen's eye checkup. The bad news is that her cataracts have grown but the good news is that she does not yet need to have them removed. We are happy happy happy. The doctor is comfortable waiting for a year for a recheck. Although he told her to come back sooner if she notices any vision problems. I kinda got the feeling that he feels she will need to have the cataract(s) removed then. I hope it's not sooner. I know she definitely has the cushnoid look...puffy cheeks, weight gain, stretch marks & increased appetite all of these are side effects of the steriods. She in hopefully that with the increased activity level that will come with being in school from 8am to 4pm five days a week and hours of being on her feet with clinical rotations will help her lose some of the weight. It will be hard since the weight gain is caused from steriods tho.

She has labs scheduled for next week which will be 7 weeks since her last set. We are doing them a week early so she won't have to worry about getting them drawn during her first week of school. Only 16 more days until classes start!

Jon is back from church youth camp. He had a lot of fun and came home with the best news of all. News that we were praying for --- he was saved. He accepted Jesus Christ as his personal Savior! We thought he did this several years ago but maybe he really wasn't ready then. I have just three words PRAISE THE LORD!

He also came home with a really bad case of sunburn on his head and ears too. I guess he thought he was too cool for sunscreen. Below are pictures. The white areas are peeling skin and his poor ears... they feel like leather.

Here's the front of his head. He really burned around the hair line in the front. See how red it looks. Ouch!

Hopefully he learned his lesson and will use sunscreen at transplant camp next week. He sees the hepatologist on Tuesday and I hope he reads Jon the riot act about using sunscreen. With Jon being on immunosuppressants he is at a higher risk of skin cancer.

We are praising the Lord for our lives and our salvation.

Karen

Monday, June 9, 2008 9:55 AM CDT

For this update the spotlight is on Jon

School’s out for the summer. Jon has been riding his bike everywhere. Miles and miles a day. I think he should think about participating in the transplant games next year. I am just so glad to see his stamina is returning & is close to his normal hyper level. Although he does still rest and/or take short naps almost daily.

He is still on a once a month lab schedule and is seeing the hepatologist every 3 months. He is on 5 meds & has had no med changes since December. We did speak with one of his doctors about his sleeping difficulties and we are to watch him for signs of sleep apnea. If we see signs then a sleep study will be ordered to make sure he is not dropping his oxygen levels too low in his sleep.

He has a temporary part time job doing lawn care for a nearby housing complex. It’s only for a week or so but at least it will give him some spending money for youth camp. Jon does not mind manual labor, in fact, he loves doing things with his hands and especially if it’s outside.

He & I will need to go shopping sometime this week for summer clothes & camp supplies. Somewhere in between vacation bible school at church every night, Jen’s picking up letters, forms, turning in forms, getting uniforms/shoes we will fit in shopping. I don’t dare shop without Jon. Only the Lord knows what he will like or not like when it comes to clothing.

Jon will be attending camp twice this summer. On the 16th he’ll be going with our youth from church to www.globalretreatcenter.org. He is excited to check out all the activities and to have a good time with friends from church and maybe meet some new friends. He won’t be far from home as we live in Chatsworth which is at the foot of Ft Mountain. But I will NOT being going up to check on him. This is his time away from us and to just have fun and hopefully forget the medical drama & trauma that has transpired over the past almost two years. July 18th will make 2 years since the fateful liver biopsy that showed advanced scarring.

He’ll come home on the 20th & leave again on the 29th for Camp Independence. www.camptwinlakes.org. Camp Independence is the summer camp for kids who’ve had organ transplants. This will be Jon’s 6th year attending this camp. Jon had a lot of fun last summer with the new activities that were planned for the older kids/teenagers. He really loved photography and golf. Real golf as he said not miniature golf. He’ll be home on the 5th of July for the rest of the summer. With his arrival back home he’ll have only 4 ½ weeks until school starts back. I think this summer is and will continue to fly by.

August 4th will begin Jon’s senior year of high school. My baby boy is growing up—too fast. And to think 15 years ago we didn’t even know if he would survive another year. Thanks to his donor not only is he surviving but he is thriving! Thank you donor family.

Tuesday, June 3, 2008 3:49 PM CDT

Jen got good news today. Her bone density scan was within normal range. This is good especially since she is still on steriods. Hopefully the recent addition of a calcium supplement will keep her bone density within normal range long term.

She’s scheduled for an eye exam later this month. We are somewhat concerned about what this exam could reveal. The last eye check showed that her cataracts(another side effect of steriods)were larger than the previous check. It’s been 2 ½ years. And for the last 2 years she’s been on a larger dose. We’ve been procrastinating getting her eyes checked because she is terrified of eye surgery. We are hoping and praying that the cataracts have stabilized.

Jen’s uniform scrubs are on order and will be completely covered by Vo Rehab. We will have to cover the cost of her shoes. Getting her ready for college is expensive we’ve already paid out $105. Plus the cost of 500 miles of gas for trips to Rome for orientations and observations. Darn these gas prices, they are killing us, and everyone else too!

She’s finished all her observation/shadowing hours. Just waiting a letter from one of her doctors and then she can turn in her health packet for school.

We are thanking God for the tax stimulus check that is coming soon. It will pay for her shoes, new glasses, other supplies and we are saving some for other school expenses too. It will also go towards getting Jon some summer clothes and for camp necessities as well as his curriculum for the next school year.

This tax stimulus is another example of how God provides for our needs. God is good! All the time! All the time!

Thursday, May 29, 2008 10:32 PM CDT

Jen had to get new titers drawn again as part of her physical for school. Last year she did not show immunity to chicken pox or rubella. The adult team she was with last year allowed her to get the MMR much to our surprise. She did not have a reaction except that she is now showing immunity to rubella. Rubella was the only of of the 3(MMR) she did not show immunity to last year. I guess the immunization worked.

The chicken pox titers was odd. Last year it show no immunity and she was not allowed to get the shot and did not get it. Now this years tests show she's immune. Go figure that one out.

I think it's just God removing obstacles in Jen's way so she can get into the Rad tech program and graduate. The obstacles removed were:
1) cost of tuition and books - removed - Vo Rehab is covering
2) cost of uniforms and shoes - removed - Vo Rehab is covering
3) cost of transportation - partially removed - Vo Rehab will help until funds run out
4) No chicken pox immunity/no clinical sites would take her - removed - she's immune

The transportation issue is still a concern but we'll gratefully accept the Lord's help even if it is for a short time. Gas prices are exhausting Vo Rehab's transportation funds quickly. But it will give us some time to figure it out. I will start putting any $ budgeted for food that are not spent on food on gas cards or any extra $ from overtime or whatever.

Events in my family's life this year has really shown me how God continues to work in our lives. He does answer prayers, sometimes it's yes, sometimes it's no and sometimes it's wait. As badly as we/Jen wanted to start the Rad tech program last year the answer was wait. Now she is so motivated and excited to get started. She has re-done her observations/shadowing and has seen procedures that grossed her out but yet at the same time she could not not watch but it was so interesting.

All I can say is Praise the Lord!

Thursday, May 8, 2008 9:08 PM CDT

The Lord always answers prayers. He may not always answer them in the way we would like but He does in His own way. With that being said:

PRAISE THE LORD!!!

Our good news continues. Not only is Jon infection free but Jen's now HAS funding for tuition and books for the next 7 quarters-till she graduates! We only have to worry about transportation costs. What a huge relief! The stress load just got a lot lighter. Now only if gas costs would stop rising.

Jen had a checkup this week with her transplant team & her labs were good. She is now on a 6 month schedule with checkups unless there is a problem then they'll see her sooner. We are hoping that Jen is able to stay healthy until she graduates in March 2010. The team did say she could go to 8 week labs. She's been 4 weeks or less since about 1991. That's 17 years so that is a big change for her. She said she thinks she's comfortable with that change. She will need labs to check titers for the usual stuff for school and we'll do regular labs then too. If all is good then maybe we will go to 6 weeks labs then 7 weeks then 8 if she stays stable. I think I'm having more of a hard time with spacing out her labs than she is. It's the mommy worry wart in me. We were given standing orders so if we feel something is going on we can always go get labs without having to wait on orders. Currently she is waiting on a date for a dexascan. Hopefully it can be scheduled sometime this month. She was started on a calcium supplement last month. If the dexascan shows bone depletion then she'll probably go on a prescription medication to help build bone or at least prevent more loss.

God is good, all the time, all the time!

Monday, April 21, 2008 4:30 PM CDT

We got the best news! The awful side effects Jon endured to try and get rid of his infection WORKED. He is free of infection. This is absolutely the best news!

PRAISE THE LORD

After receiving this wonderful news we went out to eat. Jen suggested this mexican place where she'd gone on a date. We were all laughing & joking around. We started having trouble with the memory chip in our camera. Mark was working on the camera while we waited on our food. He had been eating salsa & chips. He got distracted when the waiter brought our food & put the memory chip in his mouth. Hmmm.... salsa chips... memory chip... We all had a big chuckle at that.

Jon's hair really came back in rapidly after he got off those awful meds back in September. He decided to let it grow out. Here's what it looks like now.

Photobucket

This is definitely a PRAISE report.
As our liver friend Haley would say: "He's everywhere". Yes Haley, the Lord surely does have our backs. God is good all the time.

Monday, April 14, 2008 3:45 PM CDT

The following paragraph will be left at the top of all updates for a while. Updates will follow after it. I'm leaving the following message as a reminder -- I am addressing this message to those who are here for reasons other than to give support to Jen & Jon and our family. First of all, you should be ashamed of yourself and secondly, I am not judging you but God certainly will.

UPDATE
Jon has his checkup tomorrow with the all important lab work to be done. We had hoped to go down and stay in the Ronald McDonald house tomorrow evening but we needed a new referral since it's been more than 2 years since we've stayed there. Unfortunately for us, The CHOA social work department never returned my call that I placed at 9:30 this morning. I had to call them again at 4:30 only to be told our referral would not go over until tomorrow. So the chances of getting a room without being placed on the waiting list today for tomorrow are not good. I am not a happy mom. It's always iffy about getting a room but not getting a timely referral makes it nearly impossible.

Jen has an appointment in Atlanta on Thursday. It will be a busy week for us. And Jen got the letter from her college we've been waiting for. The Intent to Enroll letter for the Radiology Technology program. Yeah, it's now official she will be accepting a spot in the program. As I've said before we are still figuring out how to pay for her to continue in college. Just 7 more quarters and we've got the first one covered. I know the Lord will show us how to cover the rest. We are keeping in prayer in this situation. The Lord always provides a way if it's in His will. God is good, All the time.

Karen

Wednesday, April 2, 2008 10:42 AM CDT

I'm leaving the following message as a reminder -- I am addressing this message to those who are here for reasons other than to give support to Jen & Jon and our family. First of all, you should be ashamed of yourself and secondly, I am not judging you but God certainly will.

Health
Jen is still stable. She does have a doctor's appointment next week and will get labs sometime during the week too.

Jon is also stable healthwise and he also has a doctor's appointment next week. He will get labs after the appointment. Please be in prayer that those lab results are favorable for Jon's longterm health.

School
Jen - We've got the next quarter of college covered but are still trying to find funding for her last 6 quarters of school. We would appreciated ANY suggestions.

Jon - His most recent grades were all B's except for one C. His ADHD plays a big factor is his ability to stay focused and therefore his grades.

I have started a blog, at least for a while. If you'd like the web address please email me at threelivers@alltel.net. Due to the above reference privacy issues I am not posting the address here. So please email if you'd like the blog address.

May God bless you all,

Karen

Wednesday, March 26, 2008 3:01 PM CDT

Thursday, March 20, 2008 3:39 PM CDT

I did not realize that with Jon’s last set of labs (March 4th) his doctor ran a test to check & see if his infection is still gone. Praise the Lord it is still gone! In April he will be 6 months post treatment & the test will be run again. He is continuing to recover emotionally from treatment. We also praise the Lord for that too.

If it’s not one thing around here it’s another. It looks like Jen will be able to get into the Radiologic Technology program in July. She tried this last July but ran into problems with the clinical sites not wanting to take her because she was not and still can not be immunized against chicken pox. Transplant team says no, it’s a live virus which is dangerous for post transplant patients.

So… that issue was worked out. Now we have another major issue. We call it TBT. Tuition, Books & Transportation. She has already used all of the allowable hours for the Georgia Hope grant. Her school does not participate in any Federal student loan programs. She goes to a small community technical college. The student aid report says our income is too high for pell grant. So the only option we know of is private student loans. She can’t qualify on her own because she doesn’t work so she would need a co-signer. Unfortunately Mark & I can’t co-sign. We have had too much medical debt, past & present. Currently we pay out over $700 every month for medical expenses so there is no room in our budget for anything else. So now we are scrambling trying to find another source of help.

Her tuition & books are $800 per quarter (apx books could be slightly less or slightly more) and transportation will be $800-$900 per quarter. It would be 100 miles round trip five days a week for ten weeks. This high gas prices really stink! We do plan on using the tax incentive refund we’ll receive for her college expenses. It won’t come in time to help with the 1st or 2nd quarter though

We are desperately trying to help her reach her goal, her dream of being a Radiologic Technologist. The program only lasts for 7 quarters. If any of you all know of a source for college funding PLEASE let us know & even if you don’t know of any please PRAY that we find the means to help Jen attend the program.

Monday, March 10, 2008 6:40 AM CDT

Wednesday is Jon's 15th Liver Transplant Anniversary!

I was so shocked 15 years ago when I was told that the transplant team in Dallas had a liver for Jon & asked if we wanted it. I was so stunned that I said I need to talk to my husband. The program manager said ok, he's at the Ronald McDonald house right? Just call him over & we'll sit down & talk about it. Ah, um...no, he & Jon are at home. WHAT! The team didn't realize that Mark & Jon were not back in Dallas. They were almost 4 hours away.

Needless to say it was a VERY stressful afternoon waiting on Mark, Jon & my niece Stephanie to arrive in Dallas. I was so afraid they wouldn't get there in time and Jon would miss his chance at being transplanted and he would die. When they finally did arrive Jon was in the hospital less than an hour before he went into the OR. The rest of the story can be seen in the montague below.

Please let Jon know you've stopped by & help us wish him a Happy 15th transplant anniversary. Also remember his donor family in prayer for without them Jon would not be here to celebrate 15 years of living with his precious Gift of Life.

Make a slideshow - it's easy!

Thursday, February 28, 2008 5:00 PM CST

I think this sickness that was going through our family is finally letting go. After 4 trips to the doctor, 4 oral antibiotics and 1 dose of IM antibiotics it’s about time for it to be gone.

Jen’s labs from Feb 14th were pretty good. The only thing out of normal range was her alt which was at 52. She had been sick and I was surprised that only one of the lft’s was elevated. She was a bit dehydrated as a result the lab tech had to stick Jen twice. The second & successful draw was just above elbow. OUCH! Odd thing was that her kidney numbers were normal. We’ll take normal--it was just surprising with her dehydrated. She is still on a monthly lab draw schedule. Due to things beyond our control we are still in the process of determining how to proceed with her long term care. Her next appointment on April 17th will help with that decision.

Jon has not had labs since Jan 21st. He will have labs drawn on Monday. Then the next draw on April 15th will be those periodic labs we worry so much about. Emotionally Jon is doing much better. Most days are good days now. But no matter how his labs are or how many bad days there are we know the Lord will carry us through whatever the future brings. We Praise the Lord so much for his hand in our lives. For without Him our family would not function.

Mark’s PT for his hand has gone well. Today was his last PT session. He will be having surgery to remove a foreign object that is embedded in his knee on March 6th. It just seems so odd for Mark to have medical appointments. He is usually the one in our family with no medical issues.

We can always use prayers for strength in our daily life with our family. I’ll close with this verse:

Trust in Him at all times, O people; pour out your hearts to him, for God is our refuge. Psalms 62:8

Monday, February 25, 2008 2:55 PM CST

Today makes 15 years since Jen's first liver transplant. We are so thankful to her donor family for Jen would not have lived more than 3 months beyond that date. Jen went into that surgery with a TIPS(shunt) that had not lodged correctly. This complicated her surgery and recovery greatly. Even with all the complications she and her Gift endured her Gift of Life kept giving and giving. I don't think any of the medical staff or Mark and I expected that Gift to be able to keep functioning long at all. But her donor must have been so special, so tenacious, so strong and so tough that it not only kept Jen alive it also gave her the chance to grow and to live for another 9 years and 10 months and 5 days before it was necessary for another Gift of Life. We will NEVER forget her first donor's family generousity in giving Jen the Gift of Life. They will always remain in our thoughts, hearts, and prayers.

Wednesday, February 20, 2008 9:05 AM CST

Today is Jen's 22nd birthday. We celebrated on Monday with Kabobs for supper. Jen received the movie she wanted and a big huge stuffed lizard she's been drooling over. Even at 22 she still loves and collects stuffed animals.

Please join us in wishing Jen a Happy Birthday by leaving a note in the guestbook.

Tuesday, February 12, 2008 1:46 PM CST

Jon has recovered from his upper respiratory infection. I’m not coughing nearly as much but my ears want to bother me today. I am still taking the prescribed antibiotics so hopefully I will not have an ear infection brewing. Jen is still coughing. She is due for labs. In fact this Thursday will be 6 weeks since her last set. Yikes! She has not gone this long since before her first transplant. She’s on a monthly schedule. We’ve waiting because her liver numbers are usually out of whack when she’s fighting something viral or bacterial. But I think we will have to go ahead & get labs tomorrow anyway. With tonight’s dose she will be finished with the antibiotic prescribed for her upper respiratory infection. Keep your fingers crossed, prayers going and think “good liver numbers, good liver numbers.”

We could also use prayers for an upcoming decisions concerning Jen’s transplant care. I won’t go into details at this time just know that we are in the process of making decisions for long term care. We are praying that the Lord will show us the way in which we should go in terms of what’s in her best interest.

Mark actually had to go to the doctor yesterday & he is the one in our family who almost never goes to a doctor. He hurt his hand about 6 ½ weeks ago playing tennis with Jon. It was x-rayed then but no broken bones were seen. Our primary doc thinks it maybe a tendon injury but did do an x-ray to rule out a break. He also referred Mark to an Orthopedist to rule out anything that would need further care other than physical therapy for a tendon injury. Mark’s also has had headaches for over a week. Another med was prescribed for tension headache with instructions that if not better in 2 weeks then return for possible CT or MRI.

So our prayer list is that
(1) Jen’s upper respiratory infection to clear up
(2) Her labs to be normal
(3) Discernment in decisions for her long term care
(4) Mark’s headaches to cease
(5) His hand to heal
(6) Jon to continued recovery from emotional side effects of treatment.
(7) Jon’s treatment to be successful long-term

Thanks for stopping by to check on our family. We love to see who stops by. Please sign the guestbook so we can tell who is checking on the kids.

Karen

Wednesday, February 6, 2008 11:22 AM CST

Jon is getting better with the upper respiratory stuff he had going on. I took him to the doctor's on the 28th and he was put on antibiotics. At least he is not running a fever anymore & his throat feels better. His coughing is getting better.

Well, Jon is not a selfish person he shared his illness with Jen & I. We've been sick since Sunday. Coughing so much it feels like we are coughing up our lungs. I have run a low grade fever on & off since Sunday. Jen on the other hand has not had any fever. We were trying to ride all this out but Jen & I are going to the doctor ourselves this afternoon. I'm worried that with Jen and all her immunosuppression that she may get very sick very quickly.

Isn't it nice when your children share?

PM UPDATE

Jen & I are both on antibiotics for an upper respiratory infection. I hope we are feeling better soon and this darned cough goes AWAY.

Tuesday, January 29, 2008 9:00 PM CST

Below is a link to our family's transplant journey. Some of the pictures are old, blurry and scratched but they still help tell our story.
Make a slideshow - it's easy!

Tuesday, January 29, 2008 9:00 PM CST

Below is a link to our family's transplant journey. Some of the pictures are old, blurry and scratched but they still help tell our story.
Make a slideshow - it's easy!

Friday, January 25, 2008 4:40 PM CST

Jon update – God is good – all the time

First I want to tell you all is about the bad day that turned into a lesson on faith. Wednesday Jon had a rough day; it was very discouraging for all of us. Without going into detail we became very concerned for Jon. That night in Church in the youth meeting the lesson really hit home. It was about how we fall when we take our eyes off Jesus. The lesson was given by the youth pastor who had no idea what had happened earlier. Afterwards the church pastor came to Jon with information that absolutely turned what had happened earlier that day around to give Jon help and hope. It was very clear that Jesus was still there helping Jon through the pastor. It maybe hard for ya’ll to understand without details but for us it was crystal clear how we can fall and still be forgiven and how the Lord carries us through tough times. God is SO good.

Now for the medical good news. Jon’s labs from Tuesday are back. In the last update I had talked about getting the news that Jon would not be getting the test for infection done. Well, I think after I mentioned to the Doctor that I was fine with that because I would not have to stress out while waiting for the results he ordered one of the tests anyway. There are 2, one that tells if there is still any infection and the other tells how much infection. He ordered the one that tells if there is any infection present --- it was still negative!!! I am SO doing the Happy Dance now!!! Thank you Dr R. This is just even more encouraging that Jon will remain permanently clear.

AND Jon’s ast is just a little above normal at 37 but good for Jon. Alt has been up but is now normal at 21. His ggt, the one that’s been elevated since he started on the zoloft last summer is normal at 30. God is SO good.

We have several liver friends whose babies are waiting for their Gifts of Life. Please keep baby Addison and baby Tyler in your prayers.

Tuesday, January 22, 2008 4:48 PM CST

We are home from Jon's checkup with his hepatology doctor. Jon's physical exam was good. The doctor was pleased with Jon's weight gain & the muscle tone regained. His weight was up by 17 pounds! The doc definitely agreed that the remeron and zoloft do increase the appetite. Jon also grew another inch. The nurses in clinic all remarked how he looked like a man now & was now taller than me or any of the nurses.

Good news is that I don't have to sit and wait several days for the dreaded lab results. We decided that since Jon had labs on Dec 19 because his lft's had been elevated that those labs would count as Jon's 3 month end of treatment labs. He was 11 weeks and 6 days post treatment on Dec 19. That sure works for me!!!! Yeah doing the happy dance. Doctor said that if Jon is still clear at 6 months post treatment(March) he has a 99hance of remaining permanently clear.

Jon asked about the possibility of coming off his gengraf(cyclo). What! Jon really wants to come off the gengraf. I was so grateful that the doctor told Jon that right now it would not even be considered. We have to make sure he remains clear. He then told him that he knew that the team consensus would be to not mess with what was working. My thoughts too! Or "if it ain't broke don't fix it. Also they would like his ggt and alt to be in the normal range too. He doesn't want the possibility of rejection occurring before we know he has permantetely cleared his infection. If he rejected then he would go on prograf, cellcept & prednisone as well as possibly needing solumedrol boluses. If this were to happen and he did not clear then treating rejection could cause the infection to run rampant and destroy his liver fairly quickly. Retransplantation in the face of uncleared infection means(virtually 100hat it will come back in the newly transplanted liver. My thought is but how many times will a team retransplant the same patient if they can't clear what's destroying their livers? I do feel that Jon's team, God forbid the worst happened, would retransplant him probably once. Also the idea of a biopsy was tossed around but not likely unless Jon's ggt goes over 100 again. It's been mainly fluctuating between 60's and 80's with a one time high over 100 at 109.

Even tho some serious issues were discussed I came away feeling relieved. Jon passed the 3 month mark & we didn't realize it. Woohoo! God is Good. I feel like this has been a race without an end in sight. Now I feel like we can see the finish line. In March Jon will cross the finish line. Almost there!
__________________

Tuesday, January 8, 2008 5:00 PM CST

We are doing the Happy Dance here. Jen's liver, Sam as she calls him, is very happy with an ast of 18 and alt of 15 and ggt of 21! Jen's kidneys, K & P, are also happy with a BUN of 18 and creatinine of 0.9! Her prograf level is 5.4 which is low for her but Sam is happy and a low level keeps K & P happy so we'll take a lower level!

No labs for Jen for another month. YES!!! Is our God an awesome God!

Thursday, January 3, 2008 10:53 PM CST

Overall Jon’s lab results are better. His ast is almost normal. His alt is still high but down. His ggt is down some but it’s still twice what it should be running. But with the ggt and alt we know two of his current meds can cause these elevations. He will see the hepatologist on Jan 22nd & will get labs that day; if his numbers are not higher then Jon will go to monthly labs. On the 22nd the extra labs that tell if his infection is still gone will also be run. This will be the 3 months post treatment mark.

Here is where he started and how the checkpoints have gone so far and the schedule of future checkpoints. (my nice table would not post correctly, sorry it ran together.

Time Frame Date Infection Level
Liver Transplant 3/12/1993 None
Liver Biopsy 4/2000 Moderate-no fibrosis
Liver Biopsy 5/2003 Moderate-no real fibrosis
Liver Biopsy 7/18/06 High w/Bridging fibrosis
Start Treatment 9/29/06 High infection level
5 wks of treatment 11/3/06 Low infection level
12 wks of treatment 12/22/06 Undetectable level
Treatment on Hold 5/9/06 Side effects-suspend treat
4 1/2 wks on hold 6/12/06 Undetectable level
Restarted treatment 7/6/07 On Hold-8 wks & 2 days
32 wks of treatment 7/17/07 Undetectable level
Treatment Stopped 9/27/07 Side effects-did 42 weeks
4 wk post treatment 10/30/07 Undetectable level
10 wk post treatment12/6/07 Undetectable level

16 wks post treatment1/22/08 ( )checkpoint
6 mos post treatment 3/28/08 ( )checkpoint
1 yr post treatment 9/27/08 ( )checkpoint

If Jon makes it to the 6 month mark undetectable he has a good chance of remaining undetectable. If he makes it to the one year mark he will be considered as permanently clear of this awful infection.

Even though 2007 was one of the toughest years we’ve ever had, I would even say the toughest year, we have received many blessings too. Each time Jon comes back undetectable it’s a huge huge blessing. Each time means his liver is not being further damaged. While we are very hopeful that he will remain permanently clear we know that no matter what the future brings we have the Lord to lean on and He will carry us through whatever the final outcome may be.

I have a praise report. We have had 6 of our liver friends receive their Gifts of Life during December. We are praying that Valerie, Josiah, Nathan, Sofia, Savannah and Alan do well in their post transplant lives. Praise the Lord for these miracles and for the donor families who gave the Gift of Life for these precious 6 children. Our God is Awesome!

Tuesday, December 25, 2007 7:31 PM CST

December 30th will be the anniversary of Jen's 2nd liver transplant. We are so grateful for her 1st and 2nd donor families. Without both families Jen would not be here today. Below is a collection of photos from Jen's first 10 weeks post 2nd transplant.

Thursday, December 20, 2007 4:07 AM CST

Jon had labs yesterday afternoon around 3pm. The hepatologist faxed the order in to be run Stat. Of course we get there and the lab had “lost” the orders. After a quick phone call another copy was faxed. By 5:30pm we had results. Thank you Dr R. I think I like Stat orders, although I don’t think our insurance company would agree. We have just had the worse time getting labs in a timely manner since we moved to Georgia in 1999.

Jon labs were “fairly stable” as the doctor termed it. His ast, alt & ggt were up about 10 points each from last week. Our instructions were to repeat labs in 2 weeks. A close eye is being kept on his liver numbers since they are elevated and now seem to be steadily elevated. The 2 antidepressants are thought to be causing the elevations. Due to the emotional trauma of treatment Jon definitely needs to be on these meds but I don’t know how long his liver will tolerate them. We are hoping his liver will learn to tolerate these meds without allowing more damage to occur.

OH, OH yeah! I forgot to post, actually just found out yesterday, that Jon’s labs from 2 weeks ago the ones that take longer to come back, the ones that tell if his infection is back, was NEGATIVE. What a huge blessing. That’s means 11 weeks after stopping treatment he is still undetectable. That’s almost 3 months. The 3 month, 6 month & one year labs are the ones that will tell if he will stay clear permanently.

Last year we felt like we got a Christmas miracle when at Jon’s first checkpoint the results were that with treatment meds he had cleared. Now this year with him still being clear even after taking an 8 week break and stopping 22 days early and still clear at 11 weeks post treatment we feel as if we got another Christmas miracle this year.

2007 was, hands down, the toughest year our family has ever been through but yet at the same time we kept getting encouraging results. We definitely feel AND know that the Lord has AND will be carrying us through whatever the future brings. Our God is an awesome God.

While we feel we are ending 2007 feeling very blessed we have liver family friends whose children are waiting to receive the Gift of Life. Please keep Savannah, Sophia, Alan, and Tyler in prayer that someone even in their darkest hour of losing a loved one will make the decision to help others with organ donation, others like Savannah, Sophia, Alan, Tyler, and the many many more that are waiting.

Karen

Saturday, December 15, 2007 5:24 PM CST

Jon is home. We are all so glad to have him home with us. Please keep us in prayer that our family can heal from this past year's trauma, especially Jon.

We still need help with fund raising. In the kids NTAF account there is only $11.87 left. Any ideas???

Thanks for stopping by

Karen

Tuesday, December 11, 2007 12:08 AM CST

This is not the time to update more but am asking for more prayers for Jon.

Wednesday afternoon - We are still asking for lots of prayers for Jon. He is getting the care he needs. We had someone ask about fund raising, yes we need help. We really need for someone who can step in and take charge. Right now Mark, Jen & I need to focus on helping Jon. We are absolutely drowning in medical bills not counting what's going on now. All donations can be made/sent directly to NTAF(National Transplant Assistance Fund), just put Jen & Jon Lincoln accout on the memo line of the check. We would appreciate any help anyone can do.

Thank you all for keeping up with Jon & Jen. Please leave a note of encouragement for Jon in the guestbook if you would.

Karen

Thursday, December 6, 2007 5:48 AM CST

Friday update: Jon's liver numbers are still elevated but are down from last week. What a huge blessing, no liver biopsy! He is to repeat labs in 2 weeks. The labs that show if his infection is back won't be back until late next week. With the numbers down it's hoped that this bump was viral. His psy doc did add another med to help Jon sleep and guess what-- it can elevate one of the liver numbers, can't win for losing it seems. We are planning for Jon to start the intensive day program on Monday. We are using our grocery & gas money and going on blind faith that the Lord will provide a way to cover food and gas for the next two weeks. This is something we must do to ensure Jon is safe. We hate liver disease and especially all the emotional turmoil that comes with it. Christmas will be very slim here but if this treatment helps Jon that will be the best present we could receive.

THURSDAY UPDATE

We need more prayers for Jon. Without going into detail( Jon's privacy) we are desperately trying to find a way to come up with $417.50 for treatment. Due to the emotional side effects of treatment his doctors want him to do intensive day therapy treatment. The first 5 days is $417.50. After that it's $43.50 per day & the usual is 10 to 12 days of treatment. Because we already have the usual monthly costs associated with 2 kids who've had liver transplants we have not been able to have any savings. We live literaly from paycheck to paycheck and pray for no admissions. With admissions we usually have to make payment arrangements with the hospitals to pay over time & we are currently still paying on past admissions. For this day treatment they want the first 5 days up front, the $417.50. Additional days we can may payment arrangements.

There is less than $10 in Jen & Jon's transplant fund with National Transplant Assistance Fund(NTAF) so that resource is tapped out. We do not have credit cards because of the usual amount of medical debt so we can't charge it either. We can't borrow because we would have no way to pay it back.

We are just asking for prayer to help us find a way to help Jon get the help he needs. Jon will get labs today & we are praying his liver numbers are down or otherwise he will need a liver biopsy--even more expense & worry over what could be causing the liver numbers to rise. Please just PRAY that the Lord shows us a way to get Jon the help he needs.

Tuesday, December 4, 2007 11:59 PM CST

Just a little update on Jon. I can't go into details because I need to respect Jon's privacy. There is some serious issues going on. Mark & I are very concerned & need prayer for the Lord to lead, direct, guide us in making decision for Jon's long term health.

Jon's labs have not been repeated yet, we are waiting on lab orders. As soon as the labs are run and results are in I will update. We are hoping and praying that his liver numbers will be lower. If the same or higher a biopsy may need to be done. Wouldn't that be a wonderful Christmas present? NOT! NOT! NOT!

karen

Thursday, November 29, 2007 7:43 AM CST

Jon had labs Tuesday. The results are not what we expected. :( Jon's ast is up to 57(was29), alt 102(was 22), ggt 90(was 62-we know ggt is affected by zoloft) and most oddly his hemoglobin is high at 15.6 and hematocrit 45.1. The email note from his hepatologist said the overall rise in lft's could be from his meds(zoloft), cold(he's not sick but Jen is?), rejection or his infection is back. We will repeat the usual labs next week and recheck to see if his infection is back. That is the part that scares the heck out of me. If it's back then what? There is not another treatment available. With this rise so fast I'd think it was back with vengence and here we go with ongoing deterioration of liver function, liver failure and we all know what that means. etc. If the rise presists or is higher they may need to biopsy him.

Just not a good report at all. Jon doesn't know yet, he's still sleeping and I don't think he will react well to this news. His recovery from treatment is going slowly and he is upset that it is taking so long for him to get back to his normal.

I am just hoping and praying that his numbers are more normal next week and for strength to get through whatever is necessary if the news if not good. I am just tired of this roller coaster ride.

Please join us in praying for better labs for Jon next week.

Karen

Monday, November 26, 2007 8:28 AM CST

HAPPY BIRTHDAY JON!

Jon is 17 years old today. Below is a collection of pictures of his life.

Monday, November 19, 2007 4:25 PM CST

We are Thankful for:

(T)ransplant teams – all 3(Dallas-Atlanta-UAB)

(H)opeful results that may mean Jon’s liver has been saved

(All)3 donor families

(N)o overnight admissions for either Jen or Jon this year

(K)idney’s of Jen that continue to function normally

(S)alvation for our family

(G)reat liver friends we’ve met on our transplant journey

(I)nteresting life – it’s never dull around here for long

(V)eterans who fight for our freedom

(I)ncredible church family – Spring Place Baptist Church

(G)od’s many blessings in our lives

We hope each and everyone of you has a very blessed Thanksgiving Day.

Karen, Mark, Jen & Jon

Tuesday, November 13, 2007 4:15 PM CST

Jon was granted a second wish by The Marty Lyons Foundation. During the summer of 2006 a liver biopsy showed very significant scarring within his liver. A treatment plan was started to try and save his liver. The treatment came with many harsh side effects. Jon had a very hard time, both physically and emotionally, with these side effects and eventually it became unsafe to continue the treatment. Only time will tell if his liver has been saved. During treatment Jon became interested in music, specifically guitars. The Marty Lyons Foundation granted Jon’s wish for an electric guitar. It has only been 3 days since his received his wish but I can tell you it has made a tremendous difference in his emotional health. The picture at the top is from his second wish. During treatment a smile was rarely seen on Jon’s face. Just look at the smile on his face as he was shopping. Here’s another smile, grin, just look at the joy on his face.

He found the exact guitar he wanted. The Marty Lyons Foundation also granted Jon an amp, strap, cables, picks, tuner, stand, and the case he had drooled over while researching guitars. Here’s Jon trying to look cool while Phil (in the background) took care of the business side of Jon’s wish. Jon could not wait to get back to the hotel and play his guitar.

Our family was also treated to 2 nights at a great hotel in Atlanta near the guitar shops. Jon thought the whale arrangement hanging from the roof was great. There were hundreds of different marine life hanging on individual strings. When you stood back you could see that it was in the shape of a whale.

It was a weekend to relax, to forget the medical stuff, well… except for meds twice a day. Jon also thoroughly enjoyed the fitness center at the hotel too. He is regaining his strength and is trying to get physically fit.
Here's Jon running in the fitness center.

Here we are with Wayon back at the hotel. Again look at his smile.

We thank Phil, Wayon and The Marty Lyons Foundation for granting Jon’s wish. This was a day that Jon will never forget. Thank you for giving our family the lift we needed to carry on in our ongoing transplant journey.

Monday, November 12, 2007 11:58 PM CST

In the next update I will give more details and share more pictures of Jon’s recent wish granted by The Marty Lyons Foundation. For this update I want to talk about wishes.

I wonder if many realize how much a wish can mean to a kid who’s endured years, their whole life, of frequent doctor’s visits, lab draws, IV placements, hospital admissions, biopsies, surgeries, medications with hundreds of dose changes, organ transplants or other serious illnesses.

I know what it means. I’ve seen how a wish can lift a kid’s spirit. I’ve seen how a wish can help brighten the life of a kid who’s experienced a life threatening illness and continues to battle everyday to live an everyday life. I’ve witnessed 4 wishes.

Jen was granted her first wish at 6 years old in 1992 by the Starlight Foundation. We had just been told the treatments to try & stop life threatening internal bleeding were no longer working. She needed to be listed for transplant and that she would be referred to a transplant center upon returning from her wish trip. We were told by her doctor to go “have fun, take pictures, and make some memories.” We did just that. The Starlight Foundation granted Jen’s wish to go to Disney World. We flew in an airplane, stayed in a fancy hotel, went to Disney World, & even Sea World. Jen enjoyed her visit to Disney World & even got to meet the Teenage Mutant Ninja Turtles. Meeting the TMNT’s was the highlight of her wish trip. For Mark & me it was a chance to do just want the doctor ordered “have fun, take pictures, and make some memories” but we wondered if this would be the last family trip as a family of four.

Jen was granted her second wish at 16 years old in 2003 by The Marty Lyons Foundation. Jen had her second liver transplant 5 months before this second wish. The Marty Lyons Foundation is the only wish granting organization that grants second wishes. Jen is one example of why the Foundation grants second wishes. She had a wish as a child of 6 years old whose doctors did not know if she would survive to transplant. She did survive but her recovery was long & difficult. For 9 years and 10 months Jen & her new liver fought to live but her liver did eventually fail. So at 16 years old Jen had a second transplant with another difficult recovery. Her second wish gave her a fun, exciting time in Disney World. We stayed at the Animal Kingdom lodge and had an exciting time watching wild life from the balcony of our room. It gave our family a welcome break from medical treatment and a chance to regain our strength, especially our emotional strength.

Jon was granted his first wish at 12 years old in 2003 by Make a Wish. His wish was a shopping trip to Toys R Us for a bike & accessories. He had a blast shopping and loved the limo ride. But because Jon had generally done well over all after his transplant he was usually over shadowed by his sister’s continued illnesses.
This wish gave Jon the recognition that he, too had been through a tough time with his health and deserved a wish.

Recently at 2 weeks before his 17th birthday a second wish for Jon was granted by The Marty Lyons Foundation. During the summer of 2006 a liver biopsy showed very significant scarring within his liver. A treatment plan was started to try and save his liver. The treatment came with many harsh side effects. Jon had a very hard time, both physically and emotionally, with these side effects and eventually it became unsafe to continue the treatment. Only time will tell if his liver has been saved. During treatment Jon became interested in music, specifically guitars. The Marty Lyons Foundation granted Jon’s wish for an electric guitar. It has only been 3 days since his received his second wish but I can tell you it has made a tremendous difference in his emotional health. The picture at the top is from his second wish. During treatment a smile was rarely seen on Jon’s face. Just look at the smile on his face as he was shopping. He found the exact guitar he wanted. The Marty Lyons Foundation also granted Jon an amp, strap, cables, picks, tuner, stand, and the case he had drooled over while researching guitars. Our family was also treated to 2 nights at a great hotel in Atlanta near two guitar shops. It was a weekend to relax, to forget the medical stuff, well… except for meds twice a day. Jon also thoroughly enjoyed the fitness center at the hotel too. He is regaining his strength and is trying to get physically fit.

Wishes can give kids what they want most. And give families a break, a break that can help them continue on in the business of battling through health issues. To continue on with a renewed spirit.

We would like to thank these organizations for granting Jen & Jon’s wishes which has helped our family in our struggle through liver disease and liver transplant.

The Starlight Foundation

The Marty Lyons Foundation

Make A Wish Foundation

The Marty Lyons Foundation

Friday, November 9, 2007 6:45 AM CST

GUITAR TIME!

Through the generosity of the Marty Lyons Foundation Jon is getting a wish granted. He wants an electric guitar and an amp. I want some earplugs. Ha Ha

Jon will be able to put the guitar magnet he received from Little Marisa's family on the fridge and play a real guitar.

Please keep our liver friend Aiden in your prayers. He is having some serious health issues and can use prayers. We are praying for wisdom for the doctor's caring for him as well Aiden and his parents.

I'll update more when we get back home. I'm sure there will be lots pictures to share.

Karen

Friday, November 2, 2007 10:29 PM CDT

Jon’s hepatologist was kind enough to call us with lab results. We were not even expecting any news until next week. I’m always afraid when I see a CHOA number show up on caller ID. I’m always expecting bad news by phone and not by email.

Jon’s ast was 22, alt 29 and ggt 62. Ggt is still elevated from the Zoloft but down some since the treatment meds were discontinued so we are watching but ok with this. The best news was…… drum roll… Jon is still undetectable. This is the best news we can get at this point. Labs are usually done right at the end of treatment but with Jon stopping early due to such intolerable side effects it was decided to just wait until his scheduled Oct 30 appointment. So this means not only was Jon undetectable at the end of treatment but his is still undetectable at 4 ½ weeks post treatment. We are very hopeful that Jon will stay undetectable. With an 8 week break earlier this year and no break through levels and now 4 weeks post and still no detectable levels it is very hopeful.

Now the schedule is to repeat labs at the end of January, April and September of 2008. If he stays clear through all these checkpoints he will be considered permanently cleared.

That would be so wonderful! His gengraf(anti-rejection med) level comes up undetectable most of the time. Even when there is a level showing it is very very low. His levels have been running like this for almost 4 years with no rejection. In the past his hepatologist has said that Jon seems to be immuno-tolerate. For those of you who are not liver parents, this means his body is not trying to reject his transplanted liver.

My fervent hope is that with all this behind him Jon can go back to being our “healthy” kid. Jon recovered very rapidly from his transplant 14 years ago and had very few complications until last year. He was like the poster child for successful liver transplantation. Jon was(and still is)on very minimal immunosuppressant medication and was on a 3 month lab schedule with only yearly checkups with the transplant team. He will always need monitoring by lab work and checkups but not so often, not nearly as often as Jen will always need.

So what all this means is that although we still have almost a year to wait and see if Jon remains permanently undetectable, we have just gotten the best possible news. I can think of 3 words that express how I feel PRAISE THE LORD!

Tuesday, October 30, 2007 3:06 PM CDT

Well the medication comfirmation came from the transplant surgeon's office. Very different? We don't know what happened where, who, what??? Bottom line is they feel her bili and ast being up some is just a blimp(viral). Her GI issues are better, not normal but more to her normal. Maybe it could have been a viral thing that just took longer for her to clear? Especially since her ggt and alt were ok and she was nauseous, had hot flashes(no fever at all). Jen usually doesn't get the "usual" viral stuff so we are not really sure what symptoms she would have. Not since her second transplant-it's been a whole new game with prograf & cellcept. We are used to Jon being the one catching every virus that comes within a 50 mile radius. But he is over it in 24 to 48 hours without medical treatment of any sort?

Anyway, no med changes except for her prograf dose was reduced to 2mg both am and pm dose & redraw labs next week. Her prograf level was up to 16. The team does not want her higher than 10. But sometimes with GI upset the prograf goes higher. At this point we are comfortable with waiting until next week to get labs done.

Thanks for keeping Jen in your thoughts and prayers. I will update on Jon next week when his labs are back. Please keep him in prayer that his labs are what we all have been praying for, no more infection and good liver function.

May God be with you all

Karen

Friday, October 26, 2007 4:17 PM CDT

So much has happened in the last week. My surgery did go well but I had a complication that had me in the ER Friday night and back into the doctor’s office on Monday. But all is ok and I am recovering. I am still sore and bruised but I am so glad I won’t have any more gall bladder type pain in the future.

Jen had her colonoscopy yesterday at UAB. Nothing was found. It looks as if her medications were the problem after all, but better safe than sorry especially when it comes to Jen and her health. We are waiting on confirmation of two med changes before Jen changes her meds. Her bili yesterday was up to 1.4 and her ast 32. The ast is not bad, it’s in a normal range but it is up for her range. And the bili is up period. Other numbers were ok. We were surprised her kidney numbers did not show her as dehydrated after the colonoscopy prep. But that’s why we are concerned with her bili. If she were dehydrated then we would not be concerned with her bili. Nevertheless she will get labs in 2 weeks unless we hear from UAB that they want labs sooner. We both feel that we are not comfortable waiting a whole month. Not with Jen’s history.

Jon is continuing to recover from treatment. He will have labs next week and see his hepaptologist in Atlanta also. We are praying for more normal numbers and for him to still be undetectable for the liver infection the treatment was to help with.

Prayer requests: For Jon’s liver infection to still be undetectable and for My brother & his wife, they lost their daughter 2 years ago this month and it’s been a very hard time for them.

We thank you all for stopping by to check on us. The kids would love for everyone to leave a note in the guestbook. We all like to read & see who’s stopped by.

Friday, October 19, 2007 3:43 PM CDT

I am home from my gall bladder surgery. It went very well. I can't believe how very little pain there is. I think we make Jen's appointment next week in Birmingham without a problem.

Jen, by the way, is not feeling well today. Don't know what going on with her. Now it's multiple issues. Please keep her in prayer that it's nothing serious.

With love & prayer for all,

Karen

Wednesday, October 17, 2007 12:45 AM CDT

Jon’s lab results are in. His Hemoglobin and hematocrit are both back in normal ranges. Other numbers in his cbc are outside the normal range but I think that is due to the medications. It may take a while for everything to clear his system and all the labs to return to normal levels. His ggt is still slightly elevated at 56 but it’s coming down. His wbc and some of the other numbers that are related to how well Jon’s body would fight off infection/virus are still down. But anc is still over 1200 so we don’t need to do anything about it. His sodium level was elevated which is new for him, not sure exactly why. This is a test that I don’t normally keep up with but I know the doctor saw the labs today so unless I hear differently I’m not going to worry about it.

Mood wise Jon is slowly getting better. He is very tired lately and has taken to sleeping in in the mornings. So far his hair has not started growing back yet. I think he is trying his best some days to eat us out of house and home. He is gaining some weight back but is still about 10 pounds lower than he was last year when he started treatment. I believe his body is trying to adjust to being off those horrible awful meds. I know several people who have taken months to get back to normal. Jon has only been off treatment for 20 days so he still has a ways to go.

Jon will see his hepatologist on Oct 30th and he will get more labs drawn too. The labs will include the special ones that will tell us if the meds were successful in helping with his liver. Those same labs will be repeated in January, April and October of next year. It will take a year to know for sure if the treatment was successful.

Jon got some news yesterday that has made him a happy boy. He is getting a wish granted by The Marty Lyons foundation. Jon wants an electric guitar with amp and some accessories. We will go shopping in the Atlanta area with Mr. Lyons and other board members and some teenage boys(maybe teen board? not sure). We have a tentative date of November 3rd. I’m so glad there will be some teenaged boys coming along, I am hoping they know more about guitars than Mark & I do. Jon is so excited. He has been wanting a guitar for a while now. So for now his “first” guitar will have to hold him until November 3rd.

I will finally be having my gallbladder removed Friday. I'm ready 5 painful episodes in less than 3 years and 4 of those in the past 10 months is enough. Please keep me in prayer that it goes laproscopic & not have to revert to open incision. Jon gets nervous when I have anything medically done so keep him in prayer too.

Thanks for stopping by, don’t forget to leave the kids a message in the guestbook.

With much love & prayer for all,

Karen

Friday, October 12, 2007 7:07 AM CDT

It's been a busy time here. Things with Jon have settled down some, although we still have times that remind us that the treatment meds are not completely out of Jon's system. He is evidently gaining in physical strength(hopefully means his hemoglobin is higher)because he has been helping out at church. We are building a new youth building and Jon is enjoying being able to help. It is hard physical labor but the pastor and everyone has been great at letting Jon take breaks when he needs to. I think it's great that he wants to help, not many of our youth are volunteering to help.

He was supposed to have labs this week, oops I forgot. We'll get his labs on Monday. This past weekend was not a good one for me. Due to gallstones I was in the ER twice last weekend. I pre-op today for surgery next Friday the 19th. I will be so glad to get this darned gallbladder out. 5 episodes in less than 3 years & 4 of those in the past 11 months have not been fun. Gallbladder pain, in my opinion, is the worst pain ever. Way worst than even childbirth.

Jen was scheduled for her colonoscopy next week but due to my surgery has been rescheduled for the 25th. That's is if I can drive her to Birmingham. If my surgery is done by laproscopy then I should be able too. I am proud of Jen. She is making all the calls to her team. She had to go "up the chain" to reschedule her appointment and get one for the next week rather than a whole month later. Good for her. She told them she couldn't wait that long. Her GI issues are still ongoing. Last night was the first time in 2 weeks that she ate a normal meal. She still feels sick to her stomach a lot and still makes plently of trips to the bathroom. I still think it's the cellcept doing this but the docs want to make sure that there is nothing else causing the issues.

We thank you all for stopping by and please do sign the guestbook for the kids.

With love & prayer for all,

Karen

Friday, October 5, 2007 3:05 PM CDT

We are back from UAB. Jen had labs drawn and a flexible sigmoidscopy done. Due to computer issues they were unable to give us a printout of her labs but did tell us that her ast & alt were 16 & 17. Those low numbers tell us that SAM is happy. So no rejection is occurring. That was a big relief. We were also told that her H & H was normal.

The flex sig did not show any abnormalities. The hepatologist does want to do a colonoscopy in 2 weeks to make sure they don’t miss anything that could be further up. At this point it does look like it’s the cellcept causing the problem. It has in the past but she was able to come of the cellcept and the GI issues were resolved. However due to her multiple rejection history she can’t come off the cellcept now. The doctor wants to make sure there is not another issue also going on since her GI problems are worse this time. It is felt that they are mostly likely because of long term cellcept use. What can we do about it? I don’t know. If her colonoscopy is normal then we’ll discuss options for her. It may be something as simple as imodium(prn-as needed). I hope so, these GI issues can’t go on forever like this. Jen can’t be far away from a restroom as things stand now. It’s a good thing her classes are all online ones.

Jen had 2 ½ hours between labs and her flex sig so we did a little exploring of Kirkland Clinic. We found that they have a patient library and it has internet access. We also discovered the vending/snack bar and also Sneaky Pete’s which is a little resturant. Since Jen could not eat we elected to just go to the vend/snack bar. We were very bored and started playing with the camera. I did manage to get a picture of her smiling without her tongue sticking out.

Insert smile

Jon is doing better. Still has times that let us know his treatment meds are not completely out of his system. He received a card from one of our liver family friends in England that was a beautiful card with wonderful encouraging words. It talked of a Angel watching over Jon and about white feathers. Now we’ll be looking for those feathers and I think for years to come we’ll remember this card and how much those words of encouragement meant. Thank you Sharon. Sharon’s daughter Hannah was born with biliary Atresia and she will one day need a liver transplant. Here is another example of why organ donation is so important.

Thank you all for stopping by, if you will please sign the guestbook for Jen & Jon.

Karen

Wednesday, October 3, 2007 5:55 PM CDT

Jen and I are heading out to UAB in a few minutes. Jen's been having GI issues that we think is related to her cellcept medication. But she's also nauseous and not feeling welll so the hepatologist on the transplant team wants labs tomorrow and do a test similiar to a colonscopy. I don't expect her to be admitted unless her labs are way out of wack but please keep her in prayer that this is a simple issue that a medication change will fix.

Karen

Tuesday, October 2, 2007 7:56 AM CDT

As the days go by, now that Jon is off treatment, he seems to be recovering. He is still short of breath with exertion and easy to tire out. His hair doesn’t seem to be coming back in yet. But I think emotionally he is recovering faster than he is physically. We got a good bit of school work done today and he is caught up through today’s work.

He received two happy mail packages yesterday. One from little Marisa’s family. Marisa received her Gift of Life almost 3 years ago and is doing very well. From Marisa’s family Jon received his first guitar. Have a look see.

It was a magnet attached to the front of a card. Jon immediately took the magnet off the card and held it up & started playing “air” guitar. Funny, happy moment-Thank you Shannon & Frank. This will be scrapbooked for sure. The page title will be “Jon’s First Guitar.”

Here’s Jon playing whammy??? I think it’s called??? I don’t know all the correct terms associated with a guitar.

With the second happy mail package Jon said it smelled good. He asked if this family had a teenage daughter. I laughed and said yes as a matter of fact a 16 year old that had a liver transplant 15 years ago. Ali is a beautiful young lady has done well since her transplant.

Ali’s family also included some candy, appropriately enough some laffy taffy. I don’t know what it is with Jon peeking into these packages. I’d just open them up right away. Jon feels them, smells them and tries to guess what’s inside.

All the happy mail packages Jon has been receiving in the last few weeks have helped so much to lift Jon’s spirits. We thank little Marisa and Ali’s family for the smiles and happy moments your thoughtfulness brought to our family yesterday. We are also thankful for the donor families that are the reason these two girls are still celebrating life. Please consider being an organ donor if you are not already. We will also like to ask for prayer for our friend Haley’s family. Because there were not enough and still are not enough organs donated for transplant Haley passed away two years ago yesterday. Haley was a very special little girl with such love for her Lord and she shared that love in her life and songs. Our thoughts and prayers are with Haley’s family today & always.

Karen

Tuesday, October 2, 2007 7:56 AM CDT

Saturday, September 29, 2007 7:01 PM CDT

For those who missed the previous update I will briefly recap. Due to severity of the side effects Jon has stopped treatment. The risks were greater than the benefits. We are trying to help Jon recover from a year of “hell” as he calls it. Today made exactly one year since Jon started these awful meds. Jon did not fail, his meds failed him. He did the best he could do and that’s all anyone could ask.

It will take a few weeks for his body to completely rid itself of the meds. Just being off the meds since Thursday has done a world of good for his spirit. It will be slow getting him back to “normal” but we can see him returning. What we were seeing and he was feeling was not our Jon. We are praying hard that the 44 weeks of treatment he was able to do will be enough to stop the scarring in his liver from progressing. We hope that is in God’s will for Jon. If it is not, then we pray for God to give us all the grace to accept his plan for Jon’s life and for continued strength in our faith for whatever the future brings.

In celebration of Jon being finished with treatment we went to Outback to eat. Thanks Lori for the gift certificate! Here are all of us. See the smiles.

Jon could not wait to get his steak. The thing weighed 20 oz. That’s a lot of meat! See his smile.

We were all laughing and goofing off. We took a lot of silly pictures that I won’t bore you all with but they will be in our scrapbook. Here is a picture of Jon laughing AND smiling. We’ve missed his smile. It was a rare site this past year.

Jon, of course, had the biggest steak Outback serves and so did Mark. Jon said their salad was the best salad he’s ever had and he loved the baked potato too. He thought he could eat the whole steak in one sitting but he had to bring about one-fourth of it home. Jen had grilled shrimp and I had fried shrimp. We all had the blooming onion and we all loved it.

Here’s Mark & I. For those of you who’ve met us do you think this past year has really aged us? It sure does feel like it.

To close, again, I ask for prayers for Jon. For him to get his health, physical and emotional, back to normal soon. And for our family to recover from this traumatic year. We thank you all for your cards, letters, happy mail, thoughts, and most of all for your prayers.

Karen, Mark, Jen & Jon

Thursday, September 27, 2007 7:04 PM CDT

Just letting you all know that we have stopped treatment.

We tried our hardest to help Jon get through to the end but feel it’s in his best interest to stop treatment, completely stop, not take a break and restart. Even with therapy and medication the emotional side effects are just too great. I think we all gave it the best shot(no pun intended) possible.

Jon received more Happy Mail today and we thank Kaitlyn's family. Kaitlyn also has received her Gift of Life and is doing well. He received a second package but we don't know who sent it, it had a California return address but no name-Thank you whoever you are(please tell us who you are). These two families are two more reasons to consider organ donation.

Jon would greatly appreciate(as would I)knowing that you've stopped by checking on him. This has been a very emotional day(year)for our family. We need to take some time and regroup and would appreciate your prayers for Jon's health.

Karen

Thursday, September 27, 2007 7:31 AM CDT

Just a short update. We just need prayers.

Today is not going well. I am praying hard and hoping the Lord will show me how best to proceed with Jon's health concerns. Please pray for Jon's health and for the Lord to show Mark & I what to do.

Karen

Monday, September 24, 2007 1:16 PM CDT

Jon is down to 25 more days! We are almost there. Jon’s doctor did prescribe a new medication for those days when Jon is “not himself” as we call it. We had one of those afternoons on Saturday. We gave the new med and it knocked Jon out for several hours. This was not what we wanted, we just wanted him to be able to have some control over his emotions but not be totally out of it. He woke up still groggy but very hungry. The med did disrupt his sleep that night and he was still “spacey” the next morning. If we need the medication again we’ll try ½ dose. Maybe we won’t need another dose, one can hope.

Jon finished the model he received last week from one of our liver friends. Here’s are results. He had so much fun building this model.

Today Jon received more happy mail, one from Florida(Savannah’s family) and one from Alaska(Merek’s family). THANK YOU! He absolutely loved the guitar magazines.

He found a review for the guitar he wants to save up to buy. It was a good review so he was doubly happy to receive the magazines. I thank you because I have the hardest time getting him to read anything. Comparison shopping by using the magazines hmm… sound like a fun way to get him to do some school work with something he loves. Let’s see that’s reading, writing, math, three out of seven subjects. He also likes the Alaska sketch book, me too, more reading! And the photo album will be great to put his pictures of his friends from church.

We thank these families for sending Jon happy mail. Seeing him smile makes my days and it sure does make Jon happy. Could you all please keep these two liver families in your thoughts and prayers. Little Savannah is waiting for a liver transplant and Merek has received his Gift of Life and is doing well. We know so many families whose lives have been impacted by organ donation. I hope that if you have not already thought about donating that you will now. You could help someone like Savannah, Merek, Jen or Jon. As one of Jon’s doctors once said “with organ donation you can help others even when you can no longer help yourself.”

Karen

Monday, September 24, 2007 1:16 PM CDT

28 MORE DAY OF TREATMENT LEFT!

Yesterday was injection day and as usual he didn’t sleep well. Today he doesn’t feel very well at all. He’s had chills, muscle cramps and is now laying down and will probably be asleep soon if the cramping will subside. The day of and 1 to 2 days after the injection(every week) he just feels sick like he has the flu. It sure stinks.

We saw Jon’s psychologist this morning. We had a good long productive talk with the doctor and he was able to get the psychiatrist(writes med scripts)to review Jon’s chart and now we have yet another medication to add to Jon’s list. This med will help when Jon has a really bad day with aniexty or the like. We are hopeful this will help on those days where Jon is just not himself emotionally. This now takes Jon’s meds up to a total of 10 meds. Hopefully we won’t see side effects with the new med. We are praying and keeping our fingers crossed.

Ok had to go get Jon’s new med. He had napped and had a snack and is energized again. He wanted to jumped his bike so I’m letting him do it for 15 minutes. I have to limit him or he’ll over do it and will end up having chest pain because his hemoglobin is so low. I don’t trust him to listen to his body when it tells him it’s had enough. Yesterday he came in barely able to catch his breath and white as a sheet and having chest pain. He wants so bad to do all the things he would normally be doing. But only 28 more days until BETTER days.

Ok – Now yesterday he did something without asking first. Below are the results. Holy cow what was he thinking!

I did not take a close up picture of the bald spot on the top of his head. How fast does hair grow back? Half an inch a month??? Maybe by the time we take pictures for our Christmas card he’ll have some hair again? Life is never dull around here. 28 more days. 28 more days. 28 more days.

Friday, September 21, 2007 3:37 PM CDT

Wednesday, September 19, 2007 12:44 AM CDT

30 More days of treatment left

Oh Happy Days! Jon got a card yesterday from one of our liver family friends. He loves to receive mail. Melissa’s family was so kind to send a card and some $. He plans to use the $ tonight when the youth group goes to Sonics after church. THANK YOU!

Today Jon got 2 packages in the mail. The first one came from the United Kingdom. Jon thought that was so neat. It came from one of our liver family friends, Bethany’s family. THANK YOU! I didn’t quite have the camera ready when he opened the package so I missed getting a picture of his face when he saw the guitars pics. But here’s one of him with the pics.

He can’t wait to go to church tonight and show his friends. We also want to thank Bethany & her sister for making the card for Jon. That was so sweet of this two precious little girls.

His second package came from New Jersey. Another liver family, little Erin’s family. THANK YOU!Here’s Jon trying to peek into the box. He couldn’t wait to get the tape off.

When Jon finally got the box opened the first thing he said was “Hey Jen Harry Potter jelly beans.” He started reading the list of flavors and got to the earthworm and this was his face.

Erin’s mom also sent a car model with paint & glue. Jon wondered how she new he loved Mustangs.

Our liver friends are so awesome. They really understand what it’s like to have a child going through a rough time and how much a card or package can help get a child through a tough day. I would like to ask for prayers for little Bethany and Erin. Bethany will need a liver transplant sometime in the future. Erin has already received her Gift of Life but is currently having some difficulties. Melissa is also in our prayers as she received her Gift earlier this year and is doing well. Please keep these three families in your prayers as we will in ours.
May God bless you all,

Karen

Tuesday, September 18, 2007 4:13 PM CDT

ONLY 31 MORE DAYS OF TREATMENT LEFT!!!

Jen had orientation and registration at her “new” college. She is attending Northwestern in Rock Springs, Georgia for the next 3 quarters. She had to change her major to get financial aid. If she had done this at Coosa Valley where she was attending she would not have been able to stay on the waiting list for the Radiology Technology program. We are still hoping things will be in place for her to get into the Rad Tech program next July. If things don’t work out she’ll probably just finish the Medical Office Receptionist program she’s starting now.

Jon was able to do quite a bit of school work today. We decided we are not going to make up last weeks work. We are doing that work this week and will make up the 5 days by starting Christmas break a week later. It’s just too much right now to stay on our original school schedule; we’ll be adjusting it according to how Jon is feeling. His physical and emotional health has to be first and foremost right now. But today he did yesterday and today’s work and we got a field trip in too. A VERY productive day for Jon. A little trouble at lunch time but it was just moments. We can deal with the bad “moments” it’s when it’s hours or days that it gets hard.

Our field trip was to the Chickamauga National Military Battlefield Site in Chickamauga, Georgia. Wow, there was a terrible battle fought on those very grounds 144 years ago. There were many lives lost. We hope to go again when we have more time. It was interesting that we were just killing time(I know bad choice of words) while waiting on Jen to do her orientation and found the site. Even more awesome is how God led us to this place while we were studying this very time period in Jon’s history studies. Isn’t God great! Here's Jon "shooting" artillery.

We have to go back again when we have more time. We’d love to make it a family day but it will probably wind up being just Jon & I doing it the first week of October when Jen goes back to get her books for class.

Jon thought it would be funny to act like he was being shot by a statue. It sure was not funny how many men died, went missing or were injured all those many years ago though.

There were many monuments for the different units that fought there and they were from many different states too. Here’s Jon at the Florida monument.

Ok, the kids made me do it. Here’s me just after the upper endoscopy last week. The doctor had just tried to talk to me about needing a colonoscopy and finally said to come into the office and we’ll talk when you are not drugged up. The Versed and Demerol worked so great. I don’t remember anything about the actual procedure. Now I just hope it’s the same way for the colonoscopy too.

On September 29th it will be a year since Jon started treatment. Jon last September. Ironically enough he & I ate out at Chili's to celebrate starting treatment. We were really celebrating the fact that there was a treatment available to try to save his liver.

He was supposed to be done in August of this year but because of the severity of the side effects he had to temporarily suspended treatment for 8 weeks earlier this year. So that’s why he still has 31 more days left. Speaking of meds here’s picture of Jon getting his weekly injection.

The orange thing off to the side is the protective cover that goes over the needle after the injection is given, no recapping of the needle necessary. You just click the orange cap on a hard surface and it goes on the needle and then just throw the whole thing into a sharps container. Now we just have to figure out where to dispose of the sharps containers, we have 3 of them.

A while back I took a picture of all the kids’ medications. Then Jen was on 5 and Jon on 7. Now Jen is still on the same 5 but Jon is on a total of 9. 31 more days and it will be 7 again.

Thanks you all for stopping by and checking on the kids. Thank you to those who’ve sent Jon cards, letters or things in the mail. He got a package today and it really brighten his mood which helps all of us. I hope God continues to bless you all.

Karen

Saturday, September 15, 2007 9:16 PM CDT

Tuesday-Sept 18th- 31 more days!

ONLY 33 MORE DAYS OF TREATMENT!

We spent several hours today at a local lake.

Jon had the best day he’s had in a while. We still had a few difficult moments but the key word was “moments” not hours. So we view today as a very good day. Jon was able to ride his bike and get some of his stored up physical energy out.

He had to rest quite a bit due to being short of breath. He tried to push himself but found that if he pushed to hard he had chest pain. It’s all related to his hemoglobin being 10.3 so not unexpected.

We grilled hamburgers and hotdogs, turkey and beef. Jen & Jon are on a turkey burger kick lately. Here’s Jon being funny and “showing” his turkey burger. If you look carefully you can see where his hair is thinning.

Jen & Jon tried swimming but found the water was too cold. Finally the fall weather is here. It felt so good. It was wonderful for us as a family to have a good time together.

Thank you all for your thoughts and prayers. May God bless you too.

Friday, September 14, 2007 7:36 AM CDT

ONLY 35 MORE DAYS OF TREATMENT LEFT!

Yesterday was not a good day at all. It was injection day and those days are always horrible now.

On a good note, we finally got Jon's lab results. Not thanks to lab corp but thanks to our hepatologist's admin assist. Anyway, his hemoglobin is about the same at 10.3, anc down to 1116 but we'll take it, it's over 1000. Ggt dropped from last labs high of 109 to 82, still high but it's still thought to be the zoloft and ast and alt slightly up. So all in all not really normal but all in an acceptable range for Jon's situation given the meds he's on.

I had a surgical consult yesterday and the surgeon wants to wait on the colonoscopy to be done before removing my gallbladder, He said "just on the off chance you have colon cancer, I don't want to have to operate on you twice." WHAT!!! I know it's all a rule out tho, I'm not to worried. The doctors just want to make sure they rule everything possible out as reasons for my continued anemia which actually is better, hemoglobin is up to 12. Still taking that yucky iron supplement.

Thanks you guys for continuing to check in on Jon. It helps me to remember others are keeping us in mind, that we are not alone during this terrible time. Thanks for everything.

Wednesday, September 12, 2007 7:33 AM CDT

ONLY 37 MORE DAYS OF TREATMENT!

Yesterday went well. Mark & I did decide to leave Jon at home with Jen. We told him that did not have to do any school work. He could play video games, computer games, watch TV, eat, whatever he wanted as long as he stayed inside and in the same room as Jen. Jen said he did very well.

I had an upper endoscopy yesterday. It was not nearly as bad as I thought it would be. The stuff that's sprayed into the throat to numb it was the worst part of the whole thing. Thankfully my upper GI tract was completely normal. Unfortunately the doctor wants to do a lower, the dreaded colonoscopy. As you can imagine I'm not thrilled about that. This afternoon I have a surgical consult for to see if the surgeon also agrees that my gallbladder should come out. If he does we won't schedule it until after Jon finishes treatment. Maybe not until November sometime.

We are still waiting on results from Jon's labs on Monday. I would not be surprised if his hemoglobin is 8 or 9 something. He looks pale and is sleeping a little more. I know this will sound terrible but I am thankful that he is sleeping more right now. Less awake hours for emotional outbursts. I know bad mommy. I have to remember 37 more days. I will probably post something everyday until treatment is finished even if it's just "it's a good day." Seeing the number of days on the countdown is encouraging. We have several around the house now.

Thank you all so much for keeping Jon in prayer.

Karen

Monday, September 10, 2007 9:15 PM CDT

The countdown is on - 38 more days. The light is coming.

We got through the rest of the weekend without a major episode. Jon's emotions are still running high and from one extreme to the other. Jon had labs drawn this morning but we don't know the results yet. I expect his hemoglobin to be lower, his lips are paler than they've been and he was short of breath just walking through the parking deck to the lab.

We are taking extra percautions for Jon to make sure he stays ok and safe as a result he will need to accompany Mark & I to my upper endoscopy tomorrow. I am nervous but did find out that versed and demerol are the meds used for conscious sedation. So hopefully I won't remember a thing. And hopefully nothing major is found. I have a surgical consult Wednesday afternoon. We'll see if the surgeon also thinks my gallbladder should come out. If so we won't be scheduling it until AFTER Jon finishes treatment. One thing at a time.

Jen has been feeling off for the last two days. We're hoping it's just a bug or something minor. We decided to wait on her labs until Thursday and see if she feels better. Sometimes these little "bugs" can cause liver numbers to increase and as soon as the bugs are fought off by the body the liver numbers go back to normal.

Thank you all for your thoughts and prayers, we've needed them this past week and will continue to need them especially through the next 38 days.

Thursday, September 6, 2007 1:05 PM CDT

FRIDAY UPDATE: We saw the ugly side effects rears it's ugly head this morning but it didn't last too long. We are hoping for a peaceful rest of the day. Jon has labs on Monday, results on Tuesday. Hopefully the physical side effects(low rbc, H & H, wbc & anc and elevated lft's)will all be in ok levels. We'll take the ggt being high, just hoping it's not higher than last week. We really appreciate the prayers, this week has been so hard.

Back to THURSDAY UPDATE:
And as of today Jon is still on his treatment meds. I don't know if he will be able to finish the last six weeks or not. We are taking things day by day at this point. His psy doc did increase his zoloft and will see him in one month instead of 3 months. Jon has therapy in 2 weeks and we will increase his therapy appointments at that time, most likely to weekly until treatment is finished.

Due to the zoloft being suspected as the reason for Jon's ggt level being elevated Jon will get labs every 2 weeks for the remainder of time on treatment. As long as his ast, alt & bili stay within normal range Jon will not need a liver biopsy. That is good news.

Please continue to keep Jon in your prayers, he(and we)really can use all the prayers possible. I appreciate all of you who have reached out to us, especially Irene. Thank you all.

Back to WEDNESDAY's update:
In order to protect Jon's privacy I'm won't give details but suffice it to say today has been the worse day so far. The emotional side effects from these meds are so bad, almost to the point of being intolerable. Tomorrow will make 6 more weeks, almost to the finish. It would be such a shame to not be able to finish and give Jon the best chance of saving his liver. But we also have to get through life right now before we think about getting through tomorrow. I've said it before and I'll say it again-this is way worse than going through his transplant, heck worse than his and Jen's two transplants put together. Please, Please just pray Jon(and Jen, Mark & I)can tolerate the side effects just a little longer.

Monday, September 3, 2007 2:12 PM CDT

WEDNESDAY update:
In order to protect Jon's privacy I'm won't give details but suffice it to say today has been the worse day so far. The emotional side effects from these meds are so bad, almost to the point of being intolerable. Tomorrow will make 6 more weeks, almost to the finish. It would be such a shame to not be able to finish and give Jon the best chance of saving his liver. But we also have to get through life right now before we think about getting through tomorrow. I've said it before and I'll say it again-this is way worse than going through his transplant, heck worse than his and Jen's two transplants put together. Please, Please just pray Jon(and Jen, Mark & I)can tolerate the side effects just a little longer.

Back to Monday's update-
Some of the hardest side effects Jon has from his meds are the emotional ones. Today started out very rough. He was very emotional, angry and just completely out of sorts. It took about an hour but he finally settled down. He was able to finish today's school work but his best efforts at Math still left him with a low grade. His ability to concentrate is really sufferring. These meds in addition to his ADHD do not make a good combination. But at least we got through the bad start in the am to being finished with school work by noon.

Jon and his Dad enjoyed the church youth campout Friday night. They got to show off the potato gun to the youth. Jon swam in the creek. NOT A GOOD THING AT ALL, not right now. The water is not very clean. I'm so grateful his anc was up to 1700 but am still praying hard that he does not get sick from something that may have been in the water.

Please keep Jon in prayer than his ggt is not higher on the next lab draw. It was 109 last Wednesday and he'll get labs again on Monday(Sept 10). A liver biopsy is a possiblity if the ggt goes over 120, especially if his bili is higher too.

Thank you everyone who's asked about my testing. The recent ultrasound showed gallstones and my doctor has referred me to a surgeon to see if he agrees that I should have my gallbladder removed. I'm also scheduled for an upper endoscopy on Sept 11th. It's seems odd to be the patient. I know the kids health history better than my own.

Please let Jon a note in the guestbook and let him know you've stopped by. He needs the encouragement right now.

Karen

Thursday, August 30, 2007 9:12 PM CDT

Update on Jon – Jon’s labs results from yesterday are back already. Driving up to a labcorp draw site in Chattanooga made a huge difference in turn around time. Next day results instead of 4 days. I think this will work even if it is an 80 mile round trip.

Jon’s anc is up to 1700 which is good. He was able to get the full dose of treatment meds. His h & h is continuing to drop but so far not as low as before treatment was temporarily suspended earlier this year. The area of concern is his ggt, again. It had dropped from a high of 95 to 72 but yesterday it was 109. If it hits 120 his hepatologist had previously mentioned that a liver biopsy maybe considered to rule out rejection, however he did feel it was due to another medication. The antidepressant can cause the ggt to rise somewhat. Hopefully labs in two weeks will show the ggt lower again. This vicious circle of side effects from this med cause another med to be added then that med has side effects and that……..goes on and on.

We are just trying to get through 7 more weeks. Yes, finally we can see the light at the end of this long tunnel that started last September, actually if I think about it, it really goes back to last July(07)when Jon had a liver biopsy. It’s been a LONG time with many complications. In many ways this past year has been harder to deal with than Jon’s transplant was. October 18 will be the last day of these side effect inundated treatment medications.

Today Jon is struggling to get caught up with his school work. He got a little behind with 3 doctor’s appointments and a lab draw that took up almost 3 full days.

Tomorrow night Jon & Mark will go to camp with our church’s youth group. Jon is excited that he & Mark will get to show off the potato gun. They will also get to break in the new tent. It’s a tent that fits on the bed of Mark’s pickup truck. I thought that was the strangest thing but the “boys” thought it would be so neat. Jen & I will be at home chilling out with cheese, fruit & veggie snacks and watching some movies together.

Let us know you’ve stopped in by signing the guestbook and thanks for stopping by.

Love,

Karen

Thursday, August 23, 2007 12:43 AM CDT

FRIDAY UPDATE: While Jon's temp has not gone over 100 he is having more difficulty with swallowing & his throat looks worse(to me)& he's complaining of fullness in his ears. As long as his temp does not go over 100 we will ride out the weekend and see if the antibiotics just need more time to kick in. Just say an extra prayer for Jon that the antibiotics will help with this infection.

BACK TO THURSDAY'S UPDATE:
Jon is sick, just what we’ve been fearing since his ANC has been staying below normal.

Since Jon’s ANC last week was over 750 this weekly medication dose was not decreased. That was a relief because if the dose is decreased the chances of treatment being a long term success are also decreased.

A low ANC brings additional risk of him becoming very sick very quickly if exposed to any illness. Jon started with a sore throat on Monday and started running a low grade fever, just below 100. He was seen yesterday at our local doctor’s office. His fever was 100.5 and his throat was very red with pustules and enlarged tonsils, just totally yucky. A quick strep was, surprisingly negative, but the PA felt it could have been a false negative especially given how bad his throat looked so she did prescribed antibiotics. Since I knew his ANC was only 1015 I called Jon’s hepatologist to see whether or not to give the full dose of weekly treatment medication which was due this morning. The answer was no, give only one half of the usual dose.

Although I felt the doctor would reduce Jon’s dose, I still was disappointed because I was thinking of how it could affect the long term success of Jon’s treatment. After taking a moment to pray I realized I needed to think of short term success in keeping Jon healthy. Long term success can not be realized if a short term complication like an overwhelming infection leads to sepsis and death.

Please keep Jon in prayer that with the help of the antibiotics his body can fight off this illness. If he is better and labs are ok this Wednesday he will go back to the full dose. Also remember Jon in prayer with his school work, overall he is doing well there are some areas he is struggling in.

Before I close this update we have a HUGE praise report.
PRAISE THE LORD! Our God is so awesome. We have been “sweating bullets” over the possibility of Mark being laid off from his job. He found out this morning that he will not be laid off AND he will be going back to day shift too. We are so grateful that his job is secure and that he is going back to day shift. Day shift is so much more conducive to normal family life and church activities too.

Thanks for stopping by and may God bless you all,

Karen

Thursday, August 16, 2007 9:43 PM CDT

Jon’s lab from Monday (August 13) showed that his anc is 1015. Anything above 1000 is safe. As a result of his anc being at a safe level we did not have to reduce the dose of treatment medication. His ast and alt are both back in normal range. His ggt is down another 3 points at 72. This is a VERY slow downward trend. This is probably due to the addition of an antidepressant. His hemoglobin is 11.2 so he seems to be holding at that level. He is short of breath at times but not as bad as it was earlier this year, at least not yet. He is complaining of a great deal of muscle cramping and has run a low grade fever several times this week. Both the cramping and fevers are expected side effects and really make Jon feel cruddy. He has been back on treatment for 6 weeks and has 9 more to go. Jon will get labs again in either 2 or 4 weeks depending on what the doctor says. Jon is just glad to not have to get labs EVERY week.

Speaking of labs, I guess I’m a bit of a wimp when it comes to looking. I can watch the kids get labs anytime but when it comes to me forget it, I can’t watch. Thanks to Jen I’ve learned that a butterfly helps a lot, those mega size needles attached to those vacu-tainers hurt like heck. My friend Lisa asked me if she should use emala cream for her draw, I told her no. I didn’t know she was a fainter, sorry Lisa. I might be a fainter too—if I looked.

I’ve got another hida scan scheduled next week, this time with the medication that challenges the gallbladder. It’s supposed to make the gallbladder spasm. That sounds like such fun, NOT! It could cause nausea & be painful if there are gallstones. Wonderful, just what I want, a medically induced gallbladder attack. I’ve had 4 and 3 of those sent me to the ER for pain relief. The 4th one I stayed at home only because I had pain meds left from the time before. I can only eat plain crackers and non carbonated drinks for days after these attacks. I guess I’ll load up the pantry with crackers and drinks. If this hida scan is normal then I’ll go on to have an upper endoscopy done in September. Now that really sounds like NO FUN. I am totally petrified of a scope going down my throat without benefit of a general anesthetic. Conscious sedation will be used and I’m hoping mega dose of versed also so I don’t remember a thing. If the upper endoscopy is negative then a lower scope, also known as a colonoscopy, will be next. Good thing is that the GI doc said since I’ve been having these episodes for almost 3 years if it was aggressive colon cancer I’d be dead by now. Gotta love his sense of humor. He was very compassionate though. He asked about family history of liver/gi disease. Boy is there a history.

Jen jaundiced

Jon jaundiced

He asked how the kids were both doing & I told him about Jon’s history and current treatment. He commented that the Lord must have something special in mind for Jon. Wow, how much that one sentence told me about that doctor. I just thought it was awesome that I had found not only found a compassionate doctor but also a Christian one. It is amazing to me how when I am grounded in the Lord how I see others that are also.

Jen had an ingrown toenail cut out yesterday. I usually watch any procedure that kids have done to them. I watched as Jen was numbed up but when the PA brought out the scissors and started towards Jen’s toe I had to turn away. Jen did great, no screaming or crying. Infection was a great concern with Jen being triple immunosuppressed so she had been started on antibiotics the day before and today her toe looks good. She is back out to once a month labs. To us once a month labs means everything is stable.

Please keep Jon is prayer that he remains able to complete treatment without any further delays. I have another request too. Recently I mentioned that Mark’s overtime pay was stopped; well now the plant he works at is going through restructuring. There is a possibility he may get laid off. It is not a total layoff so we are hopeful that he will not be among those laid off. We know that no matter what the Lord will see us through this. We just need to remember to listen to what God’s will is for us.

Wednesday, August 8, 2007 8:05 PM CDT

We got mixed reviews on the kid’s labs. Jen’s were very good. The only one outside normal range is her glucose which was 111. Liver’s happy, kidneys are happy and her prograf level is 9.7 which is better for her kidneys. Yea, Jen!

Jon on the other hand I’m really concerned about. His anc(absolute neutrophil count)is 600. That means he has no immunity if he’s exposed to something. This is another side effect due to his treatment meds. It looks like Jon’s body is still trying to find every one of the possible side effects; I don’t think it “likes” the meds. This is close to the point where still another med may need to be added to his med list to help stimulate his white blood count so he can fight off anything he is exposed to. This med has its own side effects and it’s painful too. Just what Jon needs right now. Plus the co-pay on it is $100 and it requires pre-authorization which means it will take at least several days to approve then shipping time. I worry that because of the time involved in getting the med that Jon will need to interrupt his treatment schedule again. I’m hoping his levels will be up with the next lab draw & we won’t have to go “there.”. I don’t know when he is to get labs next. We should be hearing from the doctor tomorrow, if not I’ll take him for labs on Monday. Gotta make sure his anc doesn’t drop any lower.

Jon’s ggt is either 75 or 95; I could not read the fax. Either way it’s still elevated. But 75 would indicate a downward turn. 95 would mean it’s stuck there. With his last two labs the ggt has been 94 each time. Jon has 11 more injections before finishing treatment. Tomorrow is shot day then only 10 more. I am praying hard that he will be able to finish the remaining 11 weeks without having to delay treatment again..

Jon is off to a good start to the school year. We started our homeschooling year on Monday. We are organized and hopefully motivated to make this the best year ever.

Please keep Jon in your prayers that he does not get sick and can finish treatment without anymore delays. Thank you for checking in on Jen & Jon. Please leave a note in the guestbook. It means a lot to Jon to see messages from you guys.

FRIDAY UPDATE - I have got to learn patience. Jon's hepatologist just called. Thank God for his compassionate nature, he knew I was concerned. We have decided after this Monday's labs that we are going to need to drive to Chattanooga for labs from now on. If we have labs drawn at a lab corp site the doctor can get results the next day online. No need to worry about the local dr's office faxing into cyber space or Atlanta loosing them in cyber space or whatever. We drive 25 miles now and Chattanooga is only 15 more miles farther.

Yes, he confirmed that Jon's anc is 600. He still wants to reduce next weeks medication by 1/2 if his anc is below 750 on Monday. But he did say that we could consider giving Jon a boost with neupogen if he goes below 500. He gave me statistics for the patients he has had in the same situation that made me feel better about a possible reduction of medication dose. He also addressed the ggt. He couldn't read his fax for the ggt either. Darn fax machines. But reguardless 75 or 95 it is possible that Jon's antidepressant could be causing the ggt to rise, especially since his bili is normal.

ANOTHER UPDATE - Just found out that Jon's ggt is 75 so it's going down. Praise the Lord!

I just need to remember to rely on the Lord more and not listen to Satan's attempts destroy my faith.

Friday, July 27, 2007 10:13 AM CDT

JEN – Update

Jen’s liver numbers from Monday’s labs were great! SAM’s happy. K & P are happy too. K & P must still be surrounded by God’s protective hedge because her prograf was 15.2. Her transplant team has reduced her dose from 3mg twice day to 3mg in AM and 2mg in PM. She’ll get lab again on August 6th. Her cellcept is causing her to have some GI issues. If the issues continue through next week she is to call her team back and they will decide how to proceed to help eliminate or reduce the GI problems.

JON - Update
The results from Jon’s labs that show whether or not his infection still remains undetectable are in. He is still undetectable. PRAISE THE LORD! This is so encouraging. He completed 32 weeks of treatment, for 8 weeks treatment was on hold, and he had been back on treatment for less than 2 weeks when these labs were drawn. Since being back on treatment Jon has completed 3 weeks more, actually 4 of the meds he takes only once a week. So he has 12 more injections to finish up. That’s 3 more months. He won’t get labs that check for presence of the infection until he completely finishes treatment. His last injection is scheduled for October 18th. He is scheduled for a checkup with his hepatologist on October30th and will also get labs run then to see if he remains infection free. Then it will be again 3 months later, then 3 more months later and then I believe it will be once a year. If he can remain undetectable for 1 year after finishing treatment his chance of permanent clearance are very good. Some patients clear the infection during treatment but then relapse after finishing. We are hoping and praying Jon will be in the 40hat achieve permanent clearance.

Jon’s bili came down, great news, his ggt stayed the same, darn it. He is to have labs again in two weeks to check the ggt as well as the usual stuff. I was worried that his ggt would be higher and he would be facing a liver biopsy and/or rejection. So far his hemoglobin and hematocrit have not dropped too low. Which is good since the low hemoglobin is what causes him to be fatigued & short of breath. White blood count is staying normal. It could all change with the next set of labs but for now, we are(Jon is)enjoying the time to be physically active. He has played tennis & been swimming with the kids from church. And swimming with Jen & Mark on Saturdays.

Jon is doing good emotionally. Meds and therapy are helping in that respect. We drive to Chattanooga for his therapy. We usually get lunch before the appointment and sometimes if we are early we go window shopping at the huge shopping area and eventually will check out Hamilton Place Mall too. It is good to have time that we can spend together that is just relaxing. Therapy does not stress Jon out, he looks forward to it. His psychologist is wonderful & just what Jon needs, someone he is comfortable with & can talk to.

We have had several people reach out to us in ways to help keep Jon’s spirits high. I want to thank you guys so much. I don’t need to name names, you know who you are as does the Lord & we hope He blesses you as you have blessed us. It means so much to know that others are thinking of Jon. In reaching out to Jon and helping to keep his spirits high you are doing the same for Mark, Jen & I. Our whole family is benefiting.
THANK YOU!

Wednesday, July 18, 2007 9:21 PM CDT

I want off this roller coaster ride! Or I guess I should say Lord just let me strap my seatbelt on! I knew when I answered the phone and saw on the caller ID it was a CHOA number it wasn't good news. Expecially not at 6pm, it was Jon's hepatologist. His bili is rising. Not really worried about that since it's only 1.2 and it rose up to 1.6 when he first started treatment last fall. 1.2 is the upper limit of normal at that lab for Jon's age.

It's the dang ggt. That did not rise last fall at all. His normal range is 20-40 always has been. Last month it was up to 59 & I though hhmm.... Now it's 94, ast & alt are in the 40's normal for him. Alk phos is normal. His cyclo was less than 50, ok for him. He sometimes shows a detectable cyclo level and sometimes not, done that for last 3 years. Dr R mentioned it could possibly be rejection or the treatment meds. Jon has not had a rejection episode in 10 years & that one was ugly! Anyway Jon is to have labs again next week. If higher then we'll need to talk about what to do & also we'll wait to see if his infection is still gone before making a decisions.

I was so unprepared for this news that I couldn't think of any questions right then. Now I'm wondering if the labs are higher what then. Short of a biopsy how can it be determined if it's rejection or treatment meds. I don't think with either of my kids I've ever seen a rise in ggt without a rise also in ast & alt no matter if it was a viral illness or rejection.

On top of all that, when it rains at my house it pours. Mark just found out this week his overtime is being stopped by the end of the month. That's big yikes for our budget. Then Jen not getting into her program, she's really bummed out. And now I've got to go for a GI consult in 2 wks to see if they can determined why my hemoglobin is 9 something & has been for 2 months with iron levels low too.

If I've repeated myself from the last update sorry. My hemoglobin is so low that my short term memory & concentration is effected. I do have to thank some of you who have reached out to us recently. You have no idea how much that means & now with this news, even more so. Ok, now I'm going to officially go either scrapbook to distract myself or freak out.

Wednesday, July 18, 2007 9:21 PM CDT

I want off this roller coaster ride! Or I guess I should say Lord just let me strap my seatbelt on! I knew when I answered the phone and saw on the caller ID it was a CHOA number it wasn't good news. Expecially not at 6pm, it was Jon's hepatologist. His bili is rising. Not really worried about that since it's only 1.2 and it rose up to 1.6 when he first started treatment last fall. 1.2 is the upper limit of normal at that lab for Jon's age.

It's the dang ggt. That did not rise last fall at all. His normal range is 20-40 always has been. Last month it was up to 59 & I though hhmm.... Now it's 94, ast & alt are in the 40's normal for him. Alk phos is normal. His cyclo was less than 50, ok for him. He sometimes shows a detectable cyclo level and sometimes not, done that for last 3 years. Dr R mentioned it could possibly be rejection or the treatment meds. Jon has not had a rejection episode in 10 years & that one was ugly! Anyway Jon is to have labs again next week. If higher then we'll need to talk about what to do & also we'll wait to see if his infection is still gone before making a decisions.

I was so unprepared for this news that I couldn't think of any questions right then. Now I'm wondering if the labs are higher what then. Short of a biopsy how can it be determined if it's rejection or treatment meds. I don't think with either of my kids I've ever seen a rise in ggt without a rise also in ast & alt no matter if it was a viral illness or rejection.

On top of all that, when it rains at my house it pours. Mark just found out this week his overtime is being stopped by the end of the month. That's big yikes for our budget. Then Jen not getting into her program, she's really bummed out. And now I've got to go for a GI consult in 2 wks to see if they can determined why my hemoglobin is 9 something & has been for 2 months with iron levels low too.

I do have to thank some of you who have reached out to us recently. You have no idea how much that means & now with this news, even more so. Ok, now I'm going to officially go either scrapbook to distract myself or freak out.

Wednesday, July 18, 2007 9:10 PM CDT

I want off this roller coaster ride! Or I guess I should say, Lord, just let me strap the seatbelt on.

I knew when I answered the phone and saw on the caller ID it was a CHOA number it wasn't good news. Expecially not at 6pm, it was Jon's hepatologist. His bili is rising. Not really worried about that since it's only 1.2 and it rose up to 1.6 when he first started treatment last fall. 1.2 is the upper limit of normal at that lab for Jon's age.

It's the dang ggt. That did not rise last fall at all. His normal range is 20-40 always has been. Last month it was up to 59 & I though hhmm.... Now it's 94, ast & alt are in the 40's normal for him. Alk phos is normal. His cyclo was less than 50, ok for him. He sometimes shows a detectable cyclo level and sometimes not, done that for last 3 years. Dr R mentioned it could possibly be rejection or the treatment meds. Jon has not had a rejection episode in 10 years & that one was ugly! Anyway Jon is to have labs again next week. If higher then we'll need to talk about what to do & also we'll wait to see if his infection is still gone.

I was so unprepared for this news that I couldn't think of any questions right then. Now I'm wondering if the labs are higher what then. Short of a biopsy how can it be determined if it's rejection or treatment meds. I don't think with either of my kids I've ever seen a rise in ggt without a rise also in ast & alt no matter if it was a viral illness or rejection.

On top of all that, when it rains at my house it pours. Mark just found out this week his overtime is being stopped by the end of the month. That's big yikes for our budget. Then Jen not getting into her program, she's really bummed out. And now I've got to go for a GI consult in 2 wks to see if they can determined why my hemoglobin is 9 something & has been for 2 months with iron levels low too.

Ok, now I'm going to officially go either scrapbook to distract myself or freak out.

Tuesday, July 17, 2007 7:04 PM CDT

When it rains it pours....

We are once again waiting to see if Jon remains clear. So much rides on these labs. I hate the waiting. My anxiety level is through the roof right now & we won't know results until Monday. I go to the doctor myself tomorrow. I hope my blood pressure does not reflect my level of anxiety. It has been rising in the last few months. Wonder why??? My hemoglobin has been 9.8(May 1) and 9.4(July 11) I had more labs drawn last week for iron levels and will get those results tomorrow. I probably just need an iron supplement. With a hemglobin that low I am always exhausted, have muscle cramps and am short of breath. Just a small sample of what Jon went through everyday for 32 weeks and is going through & will be for the next 4 months. Boy can I sympathize with him now. I also go for a GI consult August 3rd. Still trying to find out if I have gall stones, chronic gastritis, or whatever is causing the abdominal pain.

If you all could just keep Jon in your thoughts and prayers that he remains clear. He will be devastated if he is not. If he's not, the recommendation maybe to stop or do another 48 weeks. He has said he will not do 48 more, he's barely willing to do the remaining 16. There are different pictures in the photo albums of Jon.

And to top it all off, all of Mark's overtime was stopped. He made more in overtime wages than straight time. We haven't quite figured out how we'll handle this but have faith that the Lord will see us through.

Just asking for prayer/thoughts for
(1) Jon to remain clear
(2) My bp to be normal
(3) simple iron supplement to raise my hemoglobin levels
(4) that we figure out a way to survive financially

Please leave us a note so we know you stopped by. We all need encouragement right about now. Me, Mark, Jen and Jon.

Wednesday, July 4, 2007 11:15 AM CDT

Tuesday July 10th update on Jen. Just a short update. She will not be doing the Rad Tech program this summer, maybe next year. Everything just didn’t work out. She is taking the summer off to decide if this is what she needs to pursue. This is a personal decision for Jen. She has requested that we give her time to make her decision without a lot of people asking questions. This is very personal for her. I just asked that she be kept in prayer, that things work out & her decision will keep her in God’s will.

We got the official word on Jon's treatment. His hepatologist called and asked how Jon felt about treatment. We had talked with Jon last week and he was still adament about not doing 6 more months, but we were able to get him to agree to finishing the 16 weeks if that's what the doctors thought was best. Good thing we did. The recommendation is to finish out the 16 weeks. At least then we'll all know that we tried everything possible. He will see his hepatologist on July 17th and get tested again so please pray that his infection is still gone. Jon & his Dad are visiting with Grandpa this week so he will restart meds on Friday. Jen and I are at home having a girl's only week.

Jon will go back to seeing the hepatologist on a monthly basis until the 16 weeks is over. Since he will have been back on meds for 12 days on the 17th when he sees the doctor we'll see how his rbc, H & H and wbc are. Then decide how often he'll need labs. It may be back to weekly, we'll see. We are trying to keep his spirits boosted as he endures 16 more weeks of "hell" as he calls it. Every 4 weeks we will eat out at one of Jon's favorite places. 1st 4 wks - Order Pizza & Wings(he LOVES wings.) 2nd 4 wk - Pizza Hut with him ordering anything he wants. 3rd 4 wk - Ryan's Buffet. 4th 4wks and the end of treatment - Steak house. He has been wanting to go to a "real" steak house for a while. They are just so expensive but we will have to save & splurge to celebrate finishing the meds. In our area we have Outback & Texas Road House, anyone know if one is better than the other or less expensive? If anyone has any inexpensive ideas for activities(don't require physical activity) we could do each Thursday, that's the day he take his injection and that night he usually feels awful. I'm trying to think of ways to keep him distracted & entertained and therefore keep him emotionally up and ok. He will continue on his antidepressants and stay in therapy too. I thought we had a possible opportunity on a older used laptop for him but the lead didn't pan out. Just any ideas for activities.

Thanks for stopping by and I hope everyone has a safe and happy 4th of July

Thursday, June 28, 2007 8:01 PM CDT

We were off to see the Wizard, the wonderful wizard of ……I think we got hit by an F-5 tornado on our recent trip to Birmingham for Jen’s checkup. We left the day before her appointment but had to go by Rome for more paperwork for college. It took longer than we expected and just as we were ready to hit the interstate Mark called. There was a problem with Jon, an attitude problem. There have been many days lately where I wish attitude transplants were possible. So Jen & I detoured home & picked up “Mr Attitude.” It was 2pm already and it was HOT! The a/c in the van is on the fritz. After we almost melted we arrived at the hotel, cooled down & relaxed a bit. Jen had a gift card from Target so we ventured off to find a local Target. Note to self: Even at 6:30pm rush hour traffic in Birmingham is still bad.

The next morning we went to Kirkland Clinic to get Jen’s labs drawn. WOW, the registration process was amazing fast. Double wow-Lab techs were too fast. Jen had to ask for them to wait and call her back in 45 minutes. She needed an on-time blood draw to get an accurate prograf level. We thought it would take longer to register since it was her first time getting labs done there.

After labs our series of miscommunications and/or misunderstandings began. We drove over to the Eye Foundation early for Jen’s appointment. Again, her first time there so we knew there would be new patient forms. The tornado touched down again. After I had verified acceptance of our insurance when scheduling the appointment last month we got there only to be told only the pediatric ophthalmologist accepts Cigna not the adult ophthalmologists. I was SO MAD. Nothing we could do about it so we leave. As Jen is getting the parking ticket validated I began looking for our printout of nearby restaurants & found the mailed appointment reminder card. Guess what - another touch down by the tornado. As I glanced at the card I saw the date was different. I was verbally told Tuesday, the 26th when the appointment was scheduled. I did not notice the date was different when the card came in the mail. Just peachy keen! I called the hepatology clinic on the off chance the doctor had clinic that day too & could squeeze Jen in. No such luck.

So we drove about 400 miles round trip for labs. Not a total loss though. Jen’s labs the week before had her prograf at 21(too high) & the local lab had forgotten to run a ggt. So at least by having labs run at UAB we knew they would run all the correct labs and her blood was drawn within 10 minutes of it being a 12 trough time. Plus results would be back later the same day. At home it’s a 3 day wait on results. Anyway by 10:30am we were on our way home.

We got Jen’s results after arriving at home. Her prograf was down from 21 to 15. Her ggt was a little higher at 41 but still within normal limits for the lab reference ranges. Jen usual range is in the twenties & teens though. Her bili had been .4 to .7 for last six months but now it’s at 1.0(still normal) But my “mommy worry wart” mind was thinking hhhmmm……ggt increasing(slowly), bili coming close to upper limits of normal-could that mean a potential development of bile duct issues? I tend to think the worse. I think that’s my way of protecting myself from being blindsided by bad news. At least her ast & alt were in her normal range(twenties & teens)this is great news especially considering she had had the MMR vaccine 4 days earlier.

Other than his major teenage male attitude problem Jon seems to be doing well, much better than last month. His appetite is back, he is putting weigh on as well as gaining muscle strength back & his energy level has vastly improved too. Emotionally his new medication & therapy seem to be improving his outlook. He is now adamant about NOT restarting treatment no matter what. 3 months or 6 months-no way either way, he says.
We won’t know what the doctor’s recommendation will be until next week or maybe even the week after since we are going to Grandpa’s for the 4th of July holiday. I have to admit I’ve come full circle on restarting treatment. I have not told Jon this; I am just listening to what he wants to do. But I had thought I would want to push, hard, to get Jon back on treatment as soon as possible and for as long as it is necessary. I’m now thinking the side effects are just too great at this time for Jon to safely, emotionally & physically, to restart those darned meds. I am praying that he will remain infection free and he won’t ever have to think about treatment again.

Thanks for stopping by, please feel free to let the kids know you stopped in by signing the guestbook.

Please keep Jen in your prayers that she does not have any new health issues developing & Jon in your prayers that he stays clear & does not need further treatment Also please remember Haley & Sydney’s families as they continue to miss their daughters. Aiden & Mason continue to need to be lifted in prayer as well.

I’ll end with this paraphrased verse. “Who of you by worrying can add a single hour to his life.” Matthew 6:27 This is something I need to work on taking to heart. I am my mama’s daughter, a worry wart.

Wednesday, June 20, 2007 12:44 AM CDT

UPDATE ON JON

PRAISE THE LORD!!!

We just got the best news. Jon infection is still undetectable. It was checked 3 different ways and all show undetectable. His thyroid and AFP(cancer marker) are all in normal limits. His blood counts are all back in normal range. His energy level is through the roof. He, literally, has been on the roof. The roof of the new youth building at church. He's been working from 8:30am to 6 or 7 pm each night. No way he could have done that while on treatment meds. PRAISE THE LORD!

We still wait to talk to the hepatologist the first week of July to decide how to proceed from here. We are taking this great news and running with it.

PRAISE THE LORD. I can't say that enough. Don't we have an awesome God.

UPDATE ON JEN

I am officially in mommy worry mode now. Jen had the MMR vaccine yesterday. We double checked with her transplant team just before getting it. We asked what we should do if she reacts and what kind of reaction should we look for. Coordinator said usual site reaction that anyone could have & they did not expect her to break out with Rubella but that her lft's could rise. GREAT, I thought. We were instructed if she started becoming yellow, urine got dark, poo light to go to the ER and get labs done STAT & page team. Not exactly what I wanted to hear after last year's months long rejection issues. But so far so good. She does say she feels a little out of sorts BUT her prograf is high also & would explain recent increase in headaches.

Speaking of prograf & labs. . I think I'll scream if the prograf dance is fixing to start again. Her level Monday was 21, labs were not available until Thursday. Coordinator called to ask if Jen had taken her prograf prior to labs. Why do they do that! Jen's been post transplant for over 14 years you would think by now any team would know that we know NOT to take prograf before labs. Anyway, the coordinator was to talk with the docs to see if they wanted to drop her prograf down & she'd call back. Evidently the decision was to wait. Jen does have 2 appointments at the transplant center on Tuesday and we can get labs there in the am and have results by afternoon hepatology clinic.

Her labs were a little mixed, I think. Her ast & alt usually run in the teens & twenties. Her alt was 38, still in normal range but somewhat elevated for her, especially with a prograf of 21. Our local doc office staff did not check off on the lab corp form for a ggt to be run so we don't know what it was. Her last ggt was 31, her usual range in teens & low twenties. Still 31 is in normal range. Because of the mixed labs I am glad they decided not to change her dose. At least that way we will know if her numbers are up more on Tuesday that it's not because her prograf is too low. I think the timing of the MMR could have been better tho. Jen & I didn't get her lab results until after MMR was given, except for prograf level. It does mean the local doc office did fax to transplant center which has been a major issue so that's good news.

Since Jen is new to her team(Tuesday's upcoming appointment will make exactly 3 months that they have followed her)we are thinking they may not have thought much about her alt being 38 since that still in normal range. Jen & I will definitely talk to the hepatologist on Tuesday about where her normal ranges are and ask at what point do they usually change lab schedules/meds etc. I am still very happy with the quick responses we've gotten each time there have been questions. This team has enough staff and available staff & with Jen's quirks this is a great situation. It is a tremendous relief to know that if you need to get to your team quickly you can. I'll update about Jen after her Tuesday appointment unless there are developments before then, I sure hope not. By the way, her opthomology appointment is also Tuesday gotta check on those darn cataracts.

Friday, June 15, 2007 9:47 AM CDT

If you missed it & still want to know that latest news on Jen’s immunization issues, the update is still available in the history link below. Jon’s update is long so I moved Jen’s to the history.

Jon saw his hepatologist on Tuesday & had labs drawn. He had his usual labs, cbc, cmp, ggt, & cyclosporine and also 4 different labs pertaining to his infection, an AFP, and a thyroid panel. I think that’s all. Jon said they drew 11 tubes of blood & he joked that he felt a little dizzy when he stood up. We won’t know the results of most of these labs for 2 weeks. It usually takes one week to 10 days but Jon’s hepatologist is going on vacation. I’m going to go nuts waiting the extra week, but I’m trying to think of it as a time to relax and remember to let go and let God handle it.

We discussed so much about Jon’s infection and his being off treatment meds. He has now been off those meds for 5 weeks. If you have been following Jon, you may remember that he has the best chance of clearing this infection if he stays on the meds continuously. Due to the extreme anemia, exhaustion, & emotional issues those meds were put on hold May 9th and will likely not be resumed until the first week of July at the soonest. That is IF they are resumed. The hepatologist also wanted to wait until Jon’s had been on his anxiety/depression meds for a month & give his blood counts time to improve.

These are our options
(1)If Jon has remained clear of the infection since the last check(April)
(a) resume last 16 weeks of meds
(b) don’t resume treatment of meds (possibility of staying clear, low but…)

2) If Jon’s infection is active again
(a) Resume the last 16 weeks of meds
(b) resume meds for 6 months
(c) resume meds until clear-then go 6 more months
(d) don’t resume meds because of severity of side effects

We are hoping, of course, that Jon is still clear. I think I would prefer that he resume meds and finish the last 16 weeks. I believe that would give him the best chance of permanent clearance. Jon’s hepatologist did say that he had another adolescent patient who stopped at 3 months when she was clear. She stopped because of religious reasons, but she has remained clear for several years now. This is not usual given the specific sub type of infection that she had & Jon has, however, if it is in God’s plan then it will happen.

We are praying for Jon to ultimately clear this infection. We don’t know what time frame God has in mind but we have hope & faith that no matter what God will see us through.

Wednesday, June 13, 2007 9:45 PM CDT

PRAISE THE LORD! PRAISE THE LORD! PRAISE THE LORD!

The meeting went very well. Jen is in! In the present time there are only 2 sites that will allow her to do clinicals at their facility. Both are large hospitals in Rome so she will be able to get a diverse education. Diversity is one of the things the Rad Tech program at her school prides itself in. Their students graduate from the program able to work in any situation & trained in all types of x-ray equipment that most hospitals have.

All 3 of her instructors were there and all 3 were very honest that they felt if they were personally in the same position they would chose another career field. One of the instructors said it's like playing Russian roulette with her life. They talked about getting puked on, coughed on, peed on, pooped on, bleed on, etc doing their job. They also talked about Jen wearing a mask to protect herself. Also talked about how one of the first things a doctor orders when a patient comes into an ER is a chest or abdominal x-ray. So Rad Tech's are potentially exposed to any and everything before the doctors even have an idea of what's going on with the patient. Like I said they were very honest but yet supportive.

Jen did have to sign away any rights to sue the school, instructors, university system of Georgia, and the two clinical sites. The attorneys for the college looked into the situation and wrote up the waiver. Jen full well knows the risks involved, as she said the patients are more of a risk to her than she is to them. This is what she wants to do & is adamant about it. We know that there are many organ transplant recipients out there in the medical field. Her last pediatric liver transplant team and her current team were aware of her career choice and never tried to steer her away, both were very encouraging to her. We think the college/clinical sites just have never been in this situation before and were doing what they felt they needed to do to protect themselves as well as Jen’s health too.

As we left all three of the instructors said they would support Jen just as they would any other student, they just wanted to make sure Jen knew the risks involved. Jen, Mark & I all came away feeling very relieved. Jen has been really stressed out in the last few weeks & didn’t sleep well for the last several days or at all last night. She developed a headache just before the meeting. She’s taken something a while ago for a migraine & is sleeping now. She will be getting the MMR and Hep B series as soon as they are available at the local doctor’s office.

We do appreciate all the thoughts & prayers, they worked!

Saturday, June 9, 2007 9:08 AM CDT

Jen’s titer results are in. She shows immunity to rubeola & mumps. She does not have immunity to rubella nor did she retain immunity with the Hep B vaccine. She shows positive for exposure to varicella (chicken pox) but not enough for immunity. The Hep B is not a problem. She can safely get it again, in fact, our local doctor’s office is ordering it and Jen will begin that series as soon as it comes in.

In the state of Georgia if you have a medical exemption you are allowed in school. Jen has never had a problem in that respect, elementary, high school or even with college. She also had no problem in Texas either. The key thing is that she has a medical exemption.

It's the clinical sites. The hospitals where she would do her clinicals, so far they are saying everyone has to have all required immunizations.
The school is saying if they cannot find a clinical site that will take her for clinicals then she can't be in the program as clinicals are a requirement. So it all up to the clinical sites.

Jen is awaiting word on whether or not her surgeon will give her the go for the MMR. They look at this on a case by case basis only; it is not something they generally approve. However, since she is still triple immunosuppressed, which includes steriods, I would be very surprised if the team says yes to the immunization.

Besides, they definitely said NO to the varicella vaccine. If both are required by clinical sites getting the MMR (if approved) would not help, and in that case not worth the risk.

I still cannot find specific about healthcare workers who have medical exemptions anywhere. Not on the CDC sites or anywhere. If anyone has any idea of where to look please let me know.

Jen has a sit down meeting with her instructors this coming Wednesday. She is to bring her medical documentation at that time. I am very concerned that this meeting will actually be when they tell her that she cannot be in the program since no clinicals sites will take her. They have been looking. I am sending Mark with her. I am way too stressed out about Jon's upcoming appointment, labs, & decision to restart treatment to be calm, cool, and collected at this meeting.

Prayer requests

*That Jen passes her current classes(latest news has really rattled her.)
• That a clinical site will be found
• Jon’s labs are all good
• Jon can restart treatment soon

Tuesday, May 29, 2007 7:41 PM CDT

Discrimination based on immunizations/live viruses!

I hope this can all be resolved. Jen is very upset as am I. Today she went to her 2nd orientation for school. Her Radiology Technology classes start in July 9th.

Today she was told she HAS to have the chicken pox & MMR immunizations or she can not go to her clinical sites. The Director of Instructional Services at her college told her that is it the clinical site rules that the students MUST have the MMR & chicken pox shots, among others. The others are not a problem as they are not live viruses. In the state of Georgia for public school(all ages elementary thru college)you present a copy of your shot records which are generally maintained through local health departments. Jen has a letter of exemption on file for the MMR & chicken pox and has never had a problem before with the exemption being accepted at any school in Georgia, or Texas for that matter.

She did call UAB but her transplant coordinator is out today. Jen explained the situation to the secretary and she assured Jen she would make sure the coordinator got the message first thing in the morning. Then 5 minutes later the secretary called back & told Jen to call back with the name & address of the clinical sites and they would send a letter.

I think I love her new adult center! That was fast feedback. I just hope this can all be settled & soon. Jen has to turn in her paperwork by June 12.

For those of you who are in the medical field, do you have any co workers who are immunosuppressed? Did they have to have these immunizations to get their job or do clinicals during their schooling?

Jen & I will be going to the health department tomorrow to get a new copy of her shot records and will be asking there if they have heard of this sort of problem. This seems to be discriminatory towards organ recipients. I realize medical facilities have a responsibilty towards their patients but Jen is more likely to get something from the patients. She understands that risk and is willing to accept it & sign a release if necessary.

I'm thinking this Director is just being a pain. Jen is devastated right now & has no idea what to do if she can not do Rad Tech. She was so excited.

If anyone has any idea who or what agency to contact please let us know. We would appreciate ANY help in this matter.

Thursday, May 24, 2007 5:55 PM CDT

Hey all

Just a quick update. Jon’s labs from the 14th were mixed. His liver & kidney numbers were all ok. His red blood count, hemoglobin, hematocrit are all still low but in the same range he has been running. His local doctor said that Jon’s count probably would not have time to recover before he restarts treatment. We are still hoping to restart by the end of June. Odd thing on his labs were his white blood count and ANC. At the beginning of therapy those numbers dropped and we had to watch them carefully for a while. Then they went back up into the normal range until last week. The odd thing is that they went back down after being off treatment for 5 days? Who knows why, I sure don’t.

He has gotten into some poison ivy/oak and man did he get into it good. It is all over his hands, some on his arms, leg and a little on his neck. The local doctor prescribed a topical steroid cream that does seem to be helping. He does have this one weird area. It’s like a line of something under his skin. Kinda like ringworm but not in a circle, but even that looks better today. And you know, of course that this area was NOT there on the day he saw the local doc, no not until the very next day.

Jon is feeling somewhat better emotionally. Enough so that he is now on restriction to the house. I actually felt bad punishing him with all he has been through lately but don’t want him to turn into a brat who gets away with everything just because he’s been sick.

Thanks for stopping by,

Karen

Monday, May 14, 2007 7:04 PM CDT

Although we are still waiting on Jon’s doctor/therapy appointment (May 30th) he does seems a bit relieved to be off the meds. His emotional state is somewhat better. He did see our local doctor today for a regular checkup. He’s lost weight since his last time there, but all his vital signs were normal & nothing of concern on exam. Jon’s labs should be back by Wednesday or Thursday, we don’t expect any surprises there. Dr. P. said that it could take 6 weeks or longer for Jon’s hemoglobin to recover to normal levels. We are hoping he will be able to restart treatment by the end of June. So his hemoglobin may not get a chance to rebound before the meds start suppressing it again.

The good thing is that Jon will only have 16 more weeks of treatment left. I think that looking at 16 weeks to go instead of 48 in total will give him a more positive train of thought. We are praying hard that the 7 weeks off the meds won’t negate the 32 weeks he was able to finish. He will get labs on June 12th when he sees the hepatologist in Atlanta so we’ll see if the news is still good at that point. I’m not sure if the news is not good what the doctor will say. Would it be worth 16 more weeks of pure hell if it looks like the chances of being successful are very poor? At this point I think we will go with whatever the hepatologist recommends. During my conversation last week with Dr. R he said that this will not kill Jon, right now, if he can’t continue/restart treatment. As a mom the words that stood out at me were “right now.” At first my heart sank, and then I realized that “right now” represented time. I am clinging to that, Jon has time. Dr R said that there are medications currently in trials that may be on the market in time to help Jon. He feels Jon’s has several years before his liver starts to decompensate.

I did realize this weekend that God will heal Jon in His own time, within His own will. As a mom, I hope & pray that it is during Jon’s time here on earth with me, but I do have a certain peace in my heart in knowing that if Jon is not to be healed here that he will have a healthy and perfect body when I do see him when we are reunited in heaven. Because of mine & Jon’s salvation I have that sense of peace. It’s not that I won’t worry but I know that no matter what, Jon will be ok. I hope that makes sense to you, it does to me.

If he is able and does restart treatment I’m trying to think of a way we can have a mini celebration each week on the day he gets his injection. Anyone have any ideas? Something small & simple we can do at home each week? He usually feels like crud that afternoon & evening.

Now as for Ms Jennifer…. I think we butt heads so much because we are alike in that we both want to be in control. She has 4 more weeks left in this quarter & 2 of her classes are online and the 3rd one is hybrid(classroom/online tests). She drives me crazy waiting until the last day to do her work. Her labs last week were normal, Praise the Lord.

Jen returns to UAB to see her hepatologist on June 27th and she will also see an ophthalmologist to check on her cataracts. Hopefully they will not have grown larger. She says her vision is bothering her but I think it’s probably due to just plain nearsightedness getting worse. We are hoping that she’ll just need a new script for glasses. More $ to pay out, she does tend to like the more expensive frames. Wonder if she will when she’s on her own & pays for them herself???

Speaking of expenses, Mark & I were stressing out on how we would pay her tuition, books, fees, supplies, gas, lunch, etc. She ran out of allotted hours with the Hope program so we had to cover her last two quarters & were able to by the skin of our teeth & the help of our tax refund. She does not qualify for any state or federal financial aid, Mark makes too much. Makes too much? Ah….um…ok, if we weren’t paying out over $10,000 per year in medical expenses maybe I could see it. It’s a good thing she is attending locally at a technical college where tuition is much lower & has no room & board expenses.

Here’s a praise report, Thank You Lord. Jen did recently get good news about getting some help with college expenses. She is currently followed by Vocational Rehabilitation because of her hearing loss. Vo Rehab will cover her tuition, books & certain other expenses while she is in the Rad Tech program. YES! Praise the Lord. Now she may be hitchhiking to school with the cost of gas being what it is, just kidding. Locally today gas is running $2.90 per gallon. If we figure $3 per gallon it will be over $200 per month just in gas to get her to school. I just hope it doesn’t go much over $3 per gallon or she just may have to hitchhike! Not to mention needing lunch money everyday. She’ll be at school/clinicals from 8am to 4pm, Monday thru Friday from July 9th, 2007 and continuing for 21 months. I look forward to seeing her march across that stage at Graduation. I’ll be the, crying her eyes out, mom in the front row.

College expenses…. wait that’s normal thing that every family goes through right? Teaching your children to drive (no, she is not driving on her own YET-Jon is biting at the bit to start). Yelling at them to keep their rooms clean. Eat your veggies. Hey, we are a normal family. A normal family with many, many reasons to Praise God everyday.

Thank you for checking in on our family, if you will, sign the guestbook so we know you stopped by. I’ll close with this verse. Psalm 30:11-12

You turned my wailing into dancing;
You removed my sackcloth & clothed me with joy,
That my heart may sing to you & not be silent,
O Lord my God, I will give you thanks forever.

Wednesday, May 9, 2007 1:37 PM CDT

I spoke with Jon's hepatologist this morning. It is with a heavy heart that I give the news that Jon is stopping treatment. The side effects far out weighed the potential benefits at this time.

The emotional aspects of treatment were awful in addition to the many many physical effects. Jon will be starting therapy and medications to help him recover from the emotional trauma. It is a possiblity that after 4 to 6 wks being in therapy and/or on medications that Jon will restart treatment. Jon will make the decision on whether he restarts or not. I agree with that as it is his quality of life we are talking about. 10 to 20% of patients who start treatment do not finish due to the side effects.
We will support Jon in whatever decision he makes

I asked that Jon be kept in prayers as we go through the next few weeks.

Karen

Tuesday, May 8, 2007 12:55 AM CDT

PRAYERS ARE NEEDED

Today is a really bad, awful day for Jon. I can't explain just now, I hope you all understand. I just ask for special prayers for Jon at this time.

Monday, April 30, 2007 9:29 PM CDT

Sunday Update - May 6, 2007
Jon's difficulties with treatment are worsening. He even asked today to stop treatment. The physical aspects(fatigue, shortness of breath, pain, etc) are really impacting him emotionally. He is just tired of it all. He has 16 more weeks to go. All we can do at this point is continue to encourage him to preservere on. I am praying that God will help Mark & I know what to say and do to help Jon through this. It's harder than we ever anticipated. We know adults who've been through this and could not finish because of the side effects. Your prayers for Jon would be greatly appreciated.

I've left up the last update on Jon below. We just ask for your prayers for Jon.

For 13 years I took Jon’s good health after his liver transplant for granted. He did so well. He was off the ventilator on post op day one, out of ICU on post op day two and discharged from the hospital on post op day 13. He had several admissions in those 13 years but he recovered rapidly each time. In the first 13 years post transplant he grew, played soccer, enjoyed cub/boy scouts, camping, trick bike riding, just about anything he wanted to do.

A liver biopsy last summer totally changed everything. The results turned our world upside down. In the three years since his previous biopsy, scarring had occurred within his liver. The scarring is called bridging fibrosis and is one stage short of cirrhosis. With cirrhosis end stage liver disease comes and eventually total liver failure and that means another transplant. So Jon was started on two medications that sometimes can help stop the scarring from progressing. The side effects are many and can be very harsh. The medications have to be taken for 48 weeks and then it’s another year before it will be known if the meds are successful.

Jon has reached the 3rd of 8 checkpoints with his new medications.

At his 1st checkpoint the labs revealed the meds were working, while the news was encouraging it was not the best news possible. (4 weeks)

At his 2nd checkpoint the labs reveal that the meds were working and the results were the very best possible. (12 weeks)

At his 3rd checkpoint the labs revealed that the meds were still working and the results were again the best possible. (24 weeks)

He is now at 30 weeks with 18 more weeks to go. After the end of the medications he will still have 3 more checkpoints before we will know if the treatment has been successful. (August 2008)

As the treatment continues Jon is experiencing more & more side effects. He has lost 10 pounds, but more about that later. The shortness of breath continues. Sometimes he has to stop and sit down so that he does not pass out. After his last visit to the hepatologist Jon had the bright idea to run up the stairs in the parking deck instead of waiting on the elevator. Five floors! He was coming out of the stairwell as I was getting off the elevator. He came to me struggling to catch his breath, looked pale and I had to hold onto him. I really thought he was going to pass out right there. I was thinking I can’t hold him up if he passes out so I held onto his arm thinking I could grab his arms & shoulders and at least keep his head from hitting the concrete floor. After several long minutes he recovered & we walked on to the van. He was totally wiped out and just sat in the back resting. His hemoglobin and hematocrit continue to run 9-10 and 29-31 respectively. If his hemoglobin gets to 8.5 he will then need another medication to boost the bone marrow to produce more red blood cells & thereby increasing the hemoglobin. These medications can have serious side effects. In fact, currently, there is some controversy about one of the medications (Epogen.) The low hemoglobin does explain the shortness of breath though. As Jon says “Just another side effect.”

Jon has begun to have more joint/muscle pain in the past few weeks. In the last week his pain has increased to daily and has at times complained that it was an 8 out of 10 on the pain scale. Tylenol does help control the pain but does not take it totally away. Flu like muscle/joint ache is very common on the medications. “Just another side effect.”

He also has problems with “restless” legs. This bothers him while awake and interferes with sleeping too. Another medication was added to help & one of the “good” side effects is that it can cause drowsiness. This is one side effect that has helped tremendously with Jon’s inability to sleep. It’s a good thing but it is “Just another side effect.”

Several days ago Jon ran a fever up to 101.7. Tylenol did help bring it down to around 100, thankfully after several hours his temp came down to normal and has stayed normal. Fevers are, “Just another side effect.”

The anxiety episodes Jon has are not as frequent as they were in the beginning of his treatment, but are still occurring. These medications not only physically affect the body, but also mentally & emotionally. Again “Just another side effect.” The one way these meds can’t touch Jon is spiritually. God has been and will remain at his side to help him through this.

Ironically enough, 3 of the 4 of us in our family need to lose weight. Jon is the one who does not need to lose weight. Recently we bought a scale for home and Jon weighed in at 127 pounds. At the beginning of his treatment he weighed 143 pounds in clinic. Different scales can give different weights so we know it’s important to weigh on the same scales consistently. Jon does not return to see his hepatologist for 7 more weeks. We will be working very hard to keep him from losing more weight. At last clinic he weighed 133 on the scales in transplant clinic, which was a total weight loss of 10 pounds on those scales. I am very worried that he’s lost more since his April checkup. He looks like he’s lost more. His shins and elbows are all skin and bones, looks awful. His pants just hang on him even with a belt and his face is thinner looking. Even the kids in youth at church are noticing. Again “Just another side effect.”

One of his medications is an injection. At first he was giving it himself in his stomach. After several weeks of using his belly & losing weight we had to start giving the injection in his hip. That meant I had to give the injection, Jon did not like the loss of control. However this week’s injection in his hip was difficult. He has lost weight there too. We are talking hip/buttocks where there is mostly fat, well, not on Jon anymore. We are concerned that his weight loss is too much and his doctor will want to reduce his medications. Too much medication for body weight is too hard on the body & is it standard protocol to reduce medication. The medication is dosed according to body weight. The really bad thing is that if medication is reduced the chance of it working to help save Jon’s liver is also reduced.

Jon is up to 8 medications and is on a monthly lab schedule. His hepatology appointments are every other month now instead of monthly. And we thank God for the good news that the medications seem to be working so far and that his body is not trying to reject his liver.

The accumulative effects are starting to get to Jon. He is frustrated at being tired, achy, short of breath, anxious, losing weight and in general, just not feeling like himself. He is having more than usual difficulties in concentrating on his schoolwork. As a result of all these things his self-esteem is suffering too.

We continue to encourage Jon to persevere, he will get through this. He is strong. This is a difficult journey, but one we are grateful to be on. We continue to hope and pray that as hard this journey is, that it will end with Jon clearing the infection and his liver scarring to not progress on to cirrhosis which would eventually require another liver transplant

We are fighting this fight with Jon. We know that whatever the outcome God will see us through. We give God all the glory. He is the one bringing us through these uncertain times.

Thursday, May 2
Speaking of uncertain times I had a biopsy yesterday and will know the results on Monday, hopefully. I have a new found empathy for Jon's shortness of breath & feeling faint often. My hemoglobin yestday was 9.8. I felt quite faint after the biopsy & just laid around on the couch the rest of the day. Of course I hope & pray all is well especially for Jon's sake. He does not need something else to worry about. He has anxiety episodes just when I am gone for a hours running errands. A few prayers would be appreciated for Jon and me.

Monday-May 7th update -- My biopsy results were normal. Praise the Lord. Now if I can get my hemoglobin back up I believe I'll feel better. Thanks for the prayers!

Karen

Friday, April 20, 2007 11:16 AM CDT

Updates on Jen and Jon

Jen’s recent labs were all within normal limits. She is still having some pain due to the stitches mentioned in previous posts. She is not showing any signs of infection such as fever or redness so this is more of a nuisance than anything. Below is a picture Jen came up with during her last admission last July. For those of you who are familiar with prograf, cellcept, diflucan you will understand. By the way, K & P are Jen's names for her kidneys. Stands for "keep" "peeing". And she named her liver SAM for Stay Alive Mister. Just a funny thing I thought I would share.

Jon’s recent checkup and labs – He has lost weight again. Overall since starting treatment he has lost 10 pounds and we were, again, warned to not let him lose any more. If his weight drops too much his medications will have to be reduced & that can lower the effectiveness of them. We don’t want that, we want this treatment to work. Most of his numbers that we watch closely are staying within the same range that requires continued close monitoring but not so much that anything needs to be done. His hemoglobin is borderline and has been for some time now. He continues to have difficulties with shortness of breath with any exertion. But he still tries to be active. He has played tennis with friends from church for the last two nights (spring break here). He did have to take a break about every 10 minutes or so but his friends are great; they just all take a break too. Now for the best news, the lab tests that are run only every 3 months, the ones that we wait on with great anxiety & much extra prayer came back with the best possible results. PRAISE THE LORD! What a huge relief. Jon still has 6 more of these checks to go but for now we’ll take this checkpoint’s great results and we are running with it.

We continue to thank God for everything in our life, good or bad, he is always with us. We ask that you all remember our little friends Aiden & Mason; they have a special place in our hearts. We are praying that the Lord will give them happiness and their parents comfort as they are going through many trials now.

Karen

Monday, April 16, 2007 8:30 PM CDT

I will update on Jen & Jon at a later date. We are still waiting on lab results so we have no news right now.

I just wish to request prayers for our liver friend Aiden and his family.

Jen & Aiden were transplanted in 2002 just 9 days apart. Their rooms in ICU at CHOA were right across the hall from each other. Aiden's sweet little baby smile reminded me one day in ICU that I needed to remember the Lord and lean on him. Aiden reached in and grabbed my heart that day.

Aiden has a little baby brother who is having some health issues. Mason reached in and grabbed my heart tightly last year at family camp. While Mark & I know that having two kids with major health issues is sometimes a hard road to travel, Lisa & Joey are just starting on their journey. Please keep little Mason in your prayers for good health & life and his mom & dad for strength to get through the days. Their faith is strong & I have always admired Lisa for remembering to turn to the Lord in good, bad, easy or hard times. I think there is a country music song, some of the words are "He never promised the load would be easy but He did promise to always be with us." The Lord will get this family through this time as He has done for mine.

Lisa, Joey, Aiden & Mason, we love you all.

Thursday, April 5, 2007 11:15 PM CDT

Please continue to remember the two little ones I mentioned in my last journey entry. Antonio is having a tough time but is holding on. We pray for his mom’s strength and hope both feel the Lord hands holding them close. Little Hope is very sick and needs her Gift of Life soon. Her parents have great faith and I know that will carry them through these tough days as the Lord is always by their side.

Jen returned to UAB to see the team hepatologist, one of the coordinators, and a nurse practioner for evaluation of her abdominal pain. The NP & hepatologist felt that Jen’s was not from a hernia. Both think it is an internal stitch. Sometimes the stitches are seen by the body as foreign and they body encapsulates the stitch. Then if you turn, twist or move in a certain way the stitch pokes thru the encapsulation and it starts to irritate, become painful and sometimes infected too. Jen’s is painful, but not infected. If it becomes infected she will need to have it removed. That would be done at UAB in Day surgery with conscious sedation most likely. We are waiting to see if it will re-encapsulate itself. We were very pleased that the transplant team wanted to see her themselves to evaluate what was going on, especially after just taking over her care the week before. Leave it up to Jen to initiate her new team the hard way. But we are very grateful she did not need surgery.

She will be getting labs this coming Monday. If all her numbers are normal she will remain on her current dosing of meds and get labs again in a month. Hopefully this will be her schedule for a long time. She will also be seeing the hepatologist again in June for follow up.

She started spring quarter this week. Her classes are Interpersonal Relations, Intermediate Document Processing, & PC operating systems. This will be her last quarter before starting her Radiology Technology classes in July.

Jon has an appointment with his hepatologist in Atlanta this coming Tuesday. He will be getting his usual labs and the specialty labs that are done every three months. These labs will show if his treatment plan is working to help his liver. If not…. the doctors may want to discuss whether or not to continue treatment. We are very nervous about what the results will be. Jon will be getting these same labs in August which will be the end of treatment for him. He’ll get those same labs in December, March 08 and March 09. It won’t be until then that we’ll know if his treatment will be a permanent solution to stopping the scarring in his liver. It’s a long road still yet to go but one we are glad that we are on rather than at a dead end just waiting on Jon to be in end stage liver disease again and in need of another liver transplant.

We feel very blessed that Jen & Jon received their Gifts of Life. April is Organ Donation Awareness Month. Won’t you consider giving the Gift of Life? We have known so many who have received their Gifts that have enabled them to live. Sadly, we have known too many that did not receive their Gifts due to lack of donor organs. Our little friend Hope is waiting in Children’s Hospital of UAB for someone to make that decision to save her. Please think about Organ Donation, it saves lives.

THANK YOU DONOR FAMILIES FOR THE GIFTS OF LIFE

Tuesday, April 3, 2007 7:12 PM CDT

I am posting to ask for prayers for two of our little liver friends. Little Hope is listed at Jen's new transplant center, UAB. We've visited with Hope & her family twice recently and she really grabbed our hearts. Little Hope is in need of lots of prayers as she is so sick as she waits on the Gift of Life.

Sweet Antonio is also in need of prayers. He has received his Gift but is having complications. This little man has been through so much as has his mom.

Please remember these two in prayer. I will update on Jen & Jon at a later date. My heart is heavy with concern for these two little ones.

The following is a prayer that someone sent to us for Jen & Jon and I am praying this same prayer for Hope and Antonio.

Father

I lift up Hope & Antonio to you for healing. Father, I ask in your precious son's name that you bring healing to their bodies. Lord, I know that you are the Divine Physician. I pray that you give the doctors & nurses your Divine wisdom.

Father, please give Hope & Antonio and their families your strength & comfort. I thank you Jesus for the strength they have shown so far in their lives.

Father, I pray that you will continue to hold these families close to you. Lord, please help them to grow in faith in you & let them be held by you & comforted by that.

Father, I ask that you help me to remember them in prayer so that I will continue to lift them up.

Father, I am praying for a miracle for these two children of yours.

Father, I pray that all the glory will be to you. I thank you in advance for all that you do.

In Jesus' name I pray.

Amen

Thursday, March 29, 2007 8:56 PM CDT

Jen has a new transplant team at the University of Alabama at Birmingham (UAB). The trip over to Birmingham was just short of 3 hours long. Birmingham traffic was HORRENDOUS! Lots of loops on the interstate, bridges in the middle of the loops, I think they call it “malfunction junction.” Thank God, Mark was able to go with us and drive because I practically needed tranquilizers just riding in the front passenger seat. It was worse than Atlanta or Dallas traffic. It will take some getting use to.

The hotel we stayed at was clean, safe and pretty close to the Kirklin clinic. The whole UAB complex is all right there together. Lots of different clinics, several hospitals, and many usual college buildings and it seemed like each one had its own parking deck. It was a maze but one I’m sure we’ll get use too as we continue to have appointments.

We met Dr B.(surgeon) and Dr M(GI) on Monday in clinic. Jen’s several inches thick medical records had preceded us. We like Dr.B. He was very knowledgeable and was easy to talk too. We even got to briefly talk with him about Jon issues and he was very honest and straight forward about his opinion on Jon’s situation.

We did ask him about what range they like to see prograf levels in. He said not below 3 or over 10 as far out as Jen is. Jen‘s prograf is running 13 or 14. But given Jen’s “strong history” of rejection, as he stated, he does not want to lower her prograf since her lft’s(liver) and renal function tests are all within normal limits. He does want to keep her on monthly labs to keep a close eye on her. Unless Jen has problems he did not feel she needed to come to transplant clinic but once a year. So Jen’s return appointment is already set up for March 26, 2008. Dr B. said he likes to see a patient get into a good level of medication with good lab results and keep them there. He does not usually try to wean patients off immunosuppressants. It’s like Mark and I now feel “if it ain’t broke, don’t fix it.” So when we get ready to switch Jon over we know now that Dr. B. will not want to see if Jon can wean off cyclosporine. After all we’ve been thorough with both kids I also do not want to wean off immunosuppressant, too much of a chance of losing their livers. I used to want to wean off as much as possible and try completely off steriods but after Jen’s rejection issues last year, NOT any more. We are content to deal with the side effects of the immunosuppressants.

When we talked to Dr. B about Jen’s renal issues the first thing he asked was is she followed by a nephrologist? Of course the answer was no, she had never been referred to a nephrologist by her pediatric team. She was followed for a brief time just after retransplant when she was in acute renal failure. As soon as she came off CVVH there were no more nephrology consults. In the future if Jen has an increase in her renal function tests she’ll see a nephrologist.

Now, today’s news. Jen just loves to keep us (& her doctors)on our toes. She complained of some mild abdominal pain on Tuesday evening. Then on Wednesday she noticed a lumpy area between her ribs and scar line. Her pain increased in frequency and amount Wednesday evening. So we took her into the local doctor. Her regular doctor did not have any openings today so Jen saw one of his partners. This guy was so young, like Dougie Howser young. Maybe I’m just getting older and they just look younger??? Anyway he could not appreciate(feel)a hernia but he said her symptoms sound like a hernia and the area was in close proximity to her scar line. His suggestion was to see a surgeon to be on the safe side. When he started talking about 2 very good local surgeons we had to stop him. No way was anyone other than a transplant surgeon going to touch her. We asked him to call the transplant coordinator or transplant surgeon and see how they wanted us to proceed. The local Dr is to call us back & let us know what the team said. As of now we are still waiting on that call back. Although Jen is still in the same amount & frequency of pain this evening she said it seems to hurt when she breathes in too. In my layman’s check of the lump it seems smaller this evening. Who knows what’s going on. I told Jen this is not the way to get to know your new transplant team! Lol. She has not had any fever, nausea, or any change in appetite or any diarrhea/constipation. Maybe an adhesion??? We’ll follow up with the local doctor in the morning.

It is never dull for long around here. But that’s ok, we are very appreciative of the fact that although Jen & Jon both have health issues, sometimes more than others, but they are still living pretty normal lives. We praise God for that. Isn’t he awesome!

Please continue to remember Aiden & his brother Mason in your prayers as well as the families of Haley and Sydney. Also we have several liver friends whose kids are having really tough times, Hope, Antonio, Treyton, Sasha, & Shaahid. We were able to visit with little Hope when we went to UAB. She really needs a new liver soon. We are praying very hard that it is God’s will that she will receive her Gift of Life soon. Please join us in keeping these kids close in prayer.

Karen

Wednesday, March 21, 2007 1:00 PM CDT

On Monday, March 26th we will be traveling to UAB(University of Alabama at Birmingham). Go Blazers! Just kidding, my University of Tennessee Volunteers, Georgia Bulldogs and/or Florida Gators friends. I actually had to look up and see what the UAB mascot was. Anyway....

We will be meeting with the main transplant surgeon at UAB about assuming Jen's transplant related care now that she is 21 years old. It will be interesting to see how they will want to manage Jen's transplant meds and checkups. I'm sure there will be a transition for us to make. It's not always easy to change doctors. It was challenging when we switched from the Dallas team to the Atlanta team. We are, however, going into this with an open mind, especially since Jen IS now an adult. We are wondering if they will reduce her immunosuppression. Currently Jen is at about maximum immunosuppression. We are also wondering if they will do more kidney function testing. Given Jen's history of acute kidney failure after both liver transplants and several times of elevated kidney function since then we would not be opposed to kidney testing at all.

We would like to ask for pray for this upcoming meeting. Prayer that UAB is where Jen needs to be for transplant care for the rest of her life. That the team will accept Jen as a patient & we come away from this meeting with a good feeling. This would also be for Jon's future care too. But Jon's care will be switched at a later date.

Last week Jen finished winter quarter and is now on her two week break between quarters. We did learn that she is definitely in the next group of students to start summer
quarter in the Radiology Technology program.

Yeah! She has waited two years to get into this program. Also prayers that Vocational Rehabilitation will be able to help with tuition, books, uniforms, etc. Jen generally qualifies for VR assistance because of her hearing loss, but it does depend on funding too. We are finding it difficult to afford all the medical expenses for both kids much less college expenses too. We did have to pay for Spring quarter since her Hope grant ran out & due to Mark's pay raise last year she doesn't qualify for any Pell grant $. We did anticipate having to cover Spring quarter and saved money from our tax refund. Our next hurdle is getting her books next week for spring quarter which starts April 2nd. But we'll find the $ somehow, God always provides a way. Our God is AWESOME.

Jon has 8 more weeks left of school for this year, less one week for Spring break. He is still having some difficulties with concentrating, even more so since being on treatment for his liver issues. But as Jon’s says “It’s just another side effect.” That his new mantra when he feels bad or notices a new symptom. He’s on some meds that are very harsh on the body and have many side effects, but will all be worth it if they help to stop further scarring in his liver. He is scheduled to take these meds for 48 weeks. This week is week 26. Just over half way there. He had labs Monday, results won’t be back until tomorrow(22nd). If his hemoglobin is still 9 or 10, where he’s been for the last 4-5 months, he will be allowed to go to once a month labs. YES! Both kids will be once a month again. I’ve said it before and I’ll say it again, once a month labs to us means STABILITY and stability is GREAT.

Speaking of labs, Jen are back and everything is in normal range. Not just “Jen’s” normal range but normal range period. God is good.

Before I close I would like to ask for prayer for several kids we know and love very much, Aiden & his precious little brother Mason. Aiden continues to have some health issues since his transplant. Mason is getting worked up for some issues too and his mom & dad are concerned. We love this family very much and know that God is definitely in their life, even through the difficult times. And as always continue to keep the families of our angel girls Haley & Sydney in your prayers.

With much love and prayer,

Karen

Sunday, March 11, 2007 12:44 AM CST

Jon saw the hepatologist Friday. He also had labs on Monday. His hemoglobin was back up to 10.2 which is good for him. Yesterday was also treatment week 24 of 48 , halfway already. He will get 6 months labs towards the end of this month. This will be another important set of labs to continue treatment.

Jon also had another infected fingernail. He had been doing well for 2 weeks without one. Jon drained it this morning so it looked a lot better before we got to the clinic. Dr. R just said to keep it clean & use neosporine. He did listen to Jon about the overall cramping, joint type pain & restless leg issues. He prescribed Neurotin for the pain & said it may help with Jon's inability to get to sleep. I guess so, by 10:30 after the first dose he was out like a light within an hour of taking it so maybe this side effect is a good one.

Jon's depressive symptoms have lessen which is so good. The doc said if Jon's labs come back good in two weeks he could go to once a month labs. As far as his shortness of breath he said to rein him in a bit. Then told Jon to not push himself so hard, take it easier. He does not want to add epogen due to side effects and since Jon is half way through treatment he feels Jon's hemoglobin probably will not drop below 9. We do have the option of getting labs anytime I or Jon feel we need too whether it's time or not. All in all I feel very comfortable with Jon's care and treatment plan.

Tomorrow will 14 years since Jon received his Gift of Life. What a tenacious liver, even in the face of major scarring, it continues to give Jon life. We are so thankful for his donor family and to God for giving us 14 more years with Jon.

On Monday, March 12th we will be celebrating Jon's 14th Liver Transplant Anniversary. Below are pictures of his journey. Some are blurry due to use of disposable cameras. Please join us in celebrating Jon's anniversary. I just wish his donor family could see him and know how grateful we are for their kindness which gave Jon a second chance with the Gift of Life. I pray that God is surrounding them with comfort as they faced this time of year. Thank you Donor family.

Make your own | Click to play

Saturday, March 3, 2007 4:01 PM CST

Recently was the 14th anniversary of Jen's first transplant. Her recovery was very problematic and prolonged. Her admission lasted 126 days. In total we spent almost 6 months in Dallas, away from home.

It was a very tramatic time for our whole family. Just two days after she was transplant I(Karen-mom)had the worse time in my life occur.

Fourteen years ago I was in the worst place emotionally I've ever been. Jen had just been transplanted two days before, been back in the OR for revision of her inferior vena cava, kidneys failed & dialysis was started. All in all she was not doing good.

Then I got pink eye. I had to leave her, couldn't even be in the waiting room. Thank God hubby could stay with her. I could not have any contact(other than phone) with hubby since he was staying with her. Jon & my niece had to leave the Ronald McDonald house because of possible exposure for other kids staying there. They could not even come with me to the hotel because Jon was still active on the list.

It was absolutely the worst. For 10 days I could not see her or Jon. I was in a hotel room by myself. All I could do was cry which was the worst thing with pink eye. I had a really bad case. Hubby called me numerous times a day. The PA on the transplant team would call when she posted labs every morning. Each nurse would call me during their shifts with an update. The transplant surgeon would call me every day during afternoon rounds. I was kept updated but I was so afraid Jen would die and I would never get to see her alive again.

During that 10 days she had a major bleed that required a trip to the OR for banding. Her liver numbers kept getting worse and worse. She had who knows how many ultrasounds to keep a close eye on her IFVC anastomosis. She had severe preservation injury to her liver. Her blood pressure kept dropping, especially when going on dialysis.

At 7 days I went back to the opthomologist to see if I was clear to only have him say we'd better wait another 3 days to make sure it was safe for Jen. The team did let Mark hand off a video he took of Jen, the team was worried about my emotional state. It was hand off the video and leave the hospital immediately for everyone sake. I must have played that video hundreds of times. 3 days later I practically flew out of the opthomologist's when he said I was clear. I got a note saying I was clear & went straight up to ICU. The transplant surgeon was at the nurses desk. I gave him the note and he laughed. He couldn't believe I got a note. He said it's not like it was school & a doctor's note was needed after an absence. But I wanted to make sure no one was going to stop me from seeing Jen. They teased me for several weeks about the note. Jen was doing much better, was awake, off the vent, kidneys functioning again and had the biggest smile for me. Although she had 114 more inpatient days and many more life threatening complications during that admission I felt more able to handle everything because I could be with her.

It's hard to believe that all happened 14 years ago. I thank God & her donor that Jen is still here & doing well.

Thanks for listening.

Karen

Tuesday, February 20, 2007 10:15 AM CST

HAPPY 21ST BIRTHDAY JEN!

21 years ago Mark & I were blessed with Jen's birth. She weighed 8 pounds 12 oz and had a head full of hair.

After a rough year last year she is holding steady now and is on a monthly lab schedule. Only doing labs monthly to us means she's stable. We love stable.

We celebrated her birthday on Saturday. We all went up to Chattanooga. We ate at Fazolee's, loved those garlic bread sticks. Jen shopped for a new comforter set and got two more books for her collection of anime' books. Then we came home and had cake and ice cream. Don't anyone tell her doctors, we cheated and let her have cake with sugar not the "no added sugar" diet she's supposed to be on.

Happy Birthday Jen

Monday, February 12, 2007 9:34 PM CST

Hello all

We met with the psychologist. Jon & I both were comfortable with her. That is really good thing with Jon since he usually does not take to new people well. She gave him several ideas to try when he feels panicky. One of these is deep breathing. She wanted to see him back in a week but with our schedule we had to wait 2 weeks. Here I was thinking that 2007 might be less expensive than last year. Ha Ha Ha –We have a $30 copay for each visit. That would be $120 a month. Maybe we can talk her into twice a month. I’m hoping this is only a couple of visit thing not an ongoing visit thing. But we’ll do what we need to do for Jon & pay for it somehow. God always provides a way.

It is only month away from Jon’s 14th transplant anniversary. I wonder if his donor family is thinking of the upcoming date. I’ve always wonder who his donor was. All we have ever known is that his donor was 8 or 9 years old and had drowned. I recently inquired to see if we can get any info but have not heard anything back yet.

Jon’s labs – Jon H & H are 9 & 29 so not anywhere that anything needs to be done. His Wbc was 4.4 normal but the lab was unable to do a manual diff so we can’t figure his anc. Must be ok, Jen was sick for about 24 with cold/sinus stuff, and then I got it & still have it and Jon-not at all! Go figure. Thank You, Lord for keeping him well. He continues to have shortness of breath with any activity. It’s not any worse so that’s good. His liver numbers are remaining stable. So far it looks like his body is accepting the new medications without causing any rejection. His Gengraf (immunosuppressant) is still at the same dose he’s been at for 3 yrs and is running either 25 or under (undetectable). His hepatologist said 2 years ago that it appears Jon’s body is tolerate to his liver and thank God he was right. Although I do have to remind you all that while his lab numbers are still good it was his biopsy that let us know he had major scarring occurring. Sometimes the liver does not tolerate the medications and God has blessed us that Jon’s liver is tolerating them just fine or his lab numbers would be going up. I hope that makes sense.

He is 20 weeks into 48 weeks timeframe on the new medications. Jon recently asked if we could celebrate the half way point (24 wks). I think we will do something special that day. Maybe Fuddruckers, he loves their burgers and he & Mark spend sometime shooting the potato gun, rent a movie and have snacks.

Yes, I said potato gun; men, boys and their toys. They hook this contraption, made of steel, pvc piping, & I don’t know what else up to an air compressor and shoot golf balls across the backyard. I so glad our backyard backs up to a wooded area or we’d be in trouble. Their trajectory skills better be up to par because to the left beyond our next door neighbor’s is a 5 lane highway.

Jen’s labs were great again. Again thank you, Lord! She is remains on a monthly lab schedule. We still have not made any decisions about an adult transplant team yet. We are procrastinating big time. She turns 21 in 8 more days.

As for me, I called my doctor’s office today. His nurse said he and the radiologist keep missing each other when they try to get together to go over the ultrasound and hidascan films. So I continue to wait.

Prayer requests: One of our church families lost a loved one last week, please say a pray for Ms. Theresa's family. And as always remember Sydney & Haley's family as they continue to miss their sweet girls. Our liver friend Aiden continues to need special prayers for his allergy issues. As Jon's transplant anniversary draws near we will be saying special prayers for his donor family.

Thanks for stopping by and checking on our family. Please don’t forget to sign the guestbook so we know you stopped by.

With much love & prayer for all,
Karen

Thursday, February 1, 2007 11:31 PM CST

Hello all

I will be calling about getting a therapist appointment set up for coping stratagies for Jon. Mark & I have realized that from Jon's point of view that he has been the "healthy" one. He does not remember having had a liver transplant. He has always had labs at least once a month and seen doctors every few months so he thought that was "normal." It's only been in the last 3 years that he's had more medical type issues, biopies, more meds, more frequent labs & checkups. So for him it's like he was healthy and now is "sick." If we think of it in those terms it's no wonder Jon is having difficulties coping. It's a lot for a kid already going through the usual teenage hormones & attitude.

Jon was able to gain back 1 1/2 pounds of the weight he had lost since starting the new meds. We are pushing high calorie anything he'll eat down his throat. And WOW, it's only 38 days until his 14th liver transplant anniversary. 14th years of being so grateful to his donor family.

Jen is doing well. She is due for lab Monday. We are still trying to decide on how to proceed with transferring her to an adult transplant team. It's only 18 days until she turns 21 years old. Where have all the years gone?

I still have not heard from my doctor about how to proceed to find a diagnosis for my abdominal pain. I don't want to call and ask because I'm afraid of being told that I need an upper endoscopy. I'm still a chicken and I guess I will be until they call or I get tired of waiting and call myself.

SNOW DAY! It snowed here today. It snowed enough that it stuck and didn't start melting until late this afternoon. Some is still around, it's to cold for all to melt yet. The forecasters are calling for possibily more this weekend. Jon sure enjoyed getting out in it and riding his bike, making snowballs and about a foot tall snowman. He even succeeded in getting Jen out to play for a short while.

Tax Time! Holy cow, what a headache. 2006 was an expensive year medically for us. We paid out over $10,000 in medically related expenses. So to those who think everything is fine & dandy after organ transplant, the answer is NO! Medically and financially it will always be an ongoing struggle. We only have about $30 left in the kids transplant fund account. We do not qualify for any type of federal or state assistance so we are paying all expenses out of our own pocket.

Prayer requests: One of our church families lost a loved one this week, please say a pray for Ms. Theresa's family. Mark & I will go to visitation tomorrow & funeral on Saturday. And as always remember Sydney & Haley's family as they continue to miss their sweet girls. Our liver friend Aiden continues to need special prayers for his liver & allergy issues. As Jon's transplant anniversary draws near we will be saying special prayers for his donor family.

Thanks for stopping by and checking on our family. Please sign the guestbook for the kids.

With much love & prayer,

Karen

Friday, January 26, 2007 9:44 AM CST

Jon saw the hepatologist yesterday. He brought up several points about Jon maybe having anxiety attacks causing his short of breath episodes to be worse. Later in the day we talked with the psychologist & she also thinks anxiety too. She then asked if anything extra been going on in the family. Jon brought up my health & falling episodes(I think my knees are the culprit). He also feels great anxiety when I'm out doing errands & especially if I'm longer than expected. So I also agree that his shortness of breath could be getting worse because of anxiety. Now I feel bad that I'm part of the cause of him being anxious.

It's really a vicious cycle. His low H & H does cause s.o.b., causes him to not be able to be physically active which makes him sad(depressed) & then panic attacks. So now we are seeking a therapist to help Jon with strategys to cope better. We are hoping to avoid antidepressants which come with their own set of side effects. And hoping to avoid epogen which also comes with side effects. Physically his body is compensating for the low H & H well, just the anxiety excerbates the issues. So we may wind up deciding whether to add epogen so that he can be more active(as he is used to)and thus helping his mood & lessen his anxiety. Or if he gets worse with depression adding antidepressants which I'd rather(& psychologist & hepatologist) avoid. So we will seek a therapist & continue to watch Jon closely.

Good new was that yesterday's labs were better. His H & H was back up to 10 & 30. Dr. R did say that Jon could go as low as 8.5 before adding epogen if it's just the physical effects we are looking at. Yikes, 8.5 is scary to me. Another bit of good news is Jon can go to monthly labs. Of course if I feel he needs labs sooner I can do that.

Yeah, both kids are back to monthly labs. They are just on alternating schedules. It will take me several months but I'll work on getting them back to labs the same day.

As for me I had a hida scan done. The nurse called & said the ultrasound & hida scan reports showed normal. My doctor wants to view the films himself before deciding how to proceed from here. So I wait for another call. I so dislike the waiting. I don't do it well with the kids and am I not doing it well for myself either.

Thanks for checking on us. Please remember Haley's & Sidney's family in prayer. They are missing their little angel girls so much. And as always please remember Aiden in prayer too.

With much love,

Karen

Tuesday, January 16, 2007 9:58 PM CST

– My goal for this year is to remember to give up my worries to the Lord. Psalms 68:19 Praise be to the Lord, to God our Savior, who daily bears our burden. Since I am a worrier by nature this will be a hard thing to do, but I will strive to lay down all my burdens to the Lord.

Jen – Her last set of labs were all great. For those who follow numbers:

Ast-14, Alt-14, Bun-18, Cr-0.8, Bili-0.8, Prograf-13.4

There was absolutely NOTHING flagged as being out of normal range. Even her glucose was normal. In 2006 she had 48 sets of outpatient labs. I hope in 2007 she has no more than 15 maybe. That’s one per month with 3 extra, it sounds like I’m bargaining or something, no just hopeful thinking. She does remain on triple immunosuppression which does concern me. The dose of cellcept is as high as it was right out of retransplant. But it is preventing rejection which is wonderful!

She turns 21 next month. My little girl will be legal for anything but still doesn’t drive, go figure. We are working on the driving. If we could only get her drive faster than 25 miles an hour.

Speaking of turning 21 technically she will need to transfer to an adult team. YIKES! We changed transplant teams after we moved to Georgia & Jen needed retransplanting, it was very hard. She could go across the street to Emory. God forbid, but our insurance will not cover any organ transplants at Emory, it’s not on Cigna’s list of authorized centers. Our concern is for Jen’s kidneys and the possibility of a future kidney transplant. So do we find a center NOW that is on Cigna’s list? We’ve heard a lot of good things about UAB(University of Alabama at Birmingham). It is the next closest authorized center. Their survival statistics are very good. The down side is that it is about 3 hours away. And if we just go across to Emory (1 ½ hrs away) and sometime down the road Jen does need a kidney transplant we would have to scramble to switch centers during a stressful time. This is where I need to remember Psalms 68:19 and also to pray for guidance too.

Jon – He continues to get labs every 2 weeks. His latest labs were:

Ast-34, Alt-25, bili 0.6, Bun-13, Cr-1.0, RBC-3.1,WBC-3.2, Hemo-10.0, Hemat-30.9, ANC-990, Cyclo-Not detectable

He will get labs again on the 22nd and see the hepatologist on the 25th. We are hopeful that his H & H will still be 10 & 30 or above and his ANC no lower than present. He is still short of breath with any activity; bike riding, tennis, running, etc. His energy level is pretty low which is also a part of the low H & H. He is having some days of really sad moods and will be talking to the team psychologist on the 25th. I think the sad moods have a lot to do with not having enough energy to be very physically active. Jon has always been the extremely active(ADHD)type. I do admire his spunk for still going out to play tennis with his friends and still trying to ride his bike daily. I guess that stubborn teenage attitude comes in handy at times like these. He does continue to struggle in his school work, nothing new there. Again Psalms 68:19 will help me in regards to Jon’s health issues.

Me – I had labs last week. Boy did it seem weird to get my blood drawn. My labs were:

Ast-28, Alt-32, Bili-0.4, Bun-9, Cr-0.9, Hcg-12.7, Hct-38.0

Jen’s ast & alt were better than mine, although mine are in normal limits. I did have an abdominal ultrasound yesterday as the first step in figuring out why I’m having the horrible attacks of abdominal pain. The tech had a hard time finding my gallbladder. I had to turn on my side as well as be on my back. I did not realize they pressed the transducer so hard when doing an ultrasound. It was uncomfortable. I told Jen this and she said “yeah, I know.” The tech said “I think we found what we need.” What that means I don’t know. Now I wait for the Radiologist to read the ultrasound and give a report to my doctor and his nurse to call me with results. I have always disliked waiting for results on my kids so I guess this is no different. If the ultrasound was negative for gallstones then my doctor will refer me to a gastroenterologist for an upper endoscopy.
This is where they stick a tube with a camera on the end down your throat to view your esophagus and stomach. My understanding is that they use conscious sedation. Boy I sure hope so, and lots of it. I’m a chicken. Cluck, Cluck, Cluck.

Mark – He has worked so hard for the past year. He works most weeks 6 days a week and some weeks 7 days and is on call on the days he is off. All this to bring in enough to pay for the kids healthcare costs, and now mine too. I am so glad he does like his job, but he gets so tired. He never complains but I can look at him and tell. He gets the dark circles under his eyes. I pray that the Lord will look over him and keep him safe.

We have several kids/families that we keep close in heart and prayer. Haley’s family is one family that will always have a special place in our heart. To learn more please visit:

www.thehaleyvincentfoundation.com

My brother Jimmy & his wife Debbie are always close in our heart, mind, and prayers. Their daughter Sidney became one of heaven’s angels two weeks after Haley did. Jimmy & Debbie had a rough 2006. We will continue to hold them up in prayer for the days to be bearable. We love and miss Sidney so much.

And then there’s Aiden. He had his liver transplant just 9 days before Jen’s transplant in Atlanta in 2002. I love this little boy as if he were my own. His little smile was like God reaching out to me in a physical sense when Jen was not responding neurologically and telling me it would be ok. Aiden continues to have complications from his immunosuppression. Please join us in praying for God’s touch in his life.

We appreciate each and every one who stops by for updates on our family. Please let us know who you are by signing the guestbook.

With much love and prayers for all,

Karen, Mark, Jen & Jon

Tuesday, January 2, 2007 2:50 PM CST

First I have to tell you all of a blessing we received in the mail recently. Jen and Jon received care packages from the Haley Vincent Foundation. I didn't know they were coming and when I realized the boxes were from Haley's foundation I started crying. Haley is still so very missed at our house. The boxes had beautiful drawings of a winter scene, 3 crosses on a hill, and some scenes that were drawn by younger kids too. So from the outside in, it was wonderful & beautiful; just like Haley. This has absolutely been the hardest year my family has ever had and these packages could not have come at a better time. Even though they were for Jen & Jon, I felt like I received the gift of love, a gift from Haley. We miss her so much. Please visit The Haley Vincent Foundation to learn more about this amazing little girl who’s short life impacted so many and still continues to do so through this foundation. God bless her family, Cheryl, Bruce, Nick, Logan, Kendall & Grandma Pat.

Warning - The following is just my thoughts on this past year.

2006 – What a year!

JENNIFER - Jen had been doing so well that we asked if she could try coming off steroids. 3 sets of labs and 31 days later her numbers were climbing. On April 24th she was admitted and the next day had a liver biopsy. The biopsy showed moderate rejection. This was Jen’s 4th biopsy proved rejection episode and the second one that showed moderate rejection. The first two had shown mild rejection. She did have at least 2 other times of suspected rejection when her lft’s were elevated and her immunosuppressant meds were increased & her lft’s returned to normal. All of these episodes have been since retransplant which occurred on December 30, 2002. So she is considered as being an aggressive rejector. Her transplant team has always had to tread a fine line between keeping her suppressed enough to prevent rejection but not further injury her kidneys. Jen had acute renal failure after both liver transplants, severe enough that she required short term dialysis. In the simplest terms her liver is happiest when her suppressant medication level is high but her kidney’s are happiest when the medication level is low. It’s a delicate balancing act.

I guess this year I realized that I had hoped after Jen’s 2nd transplant that she would be really stable like Jon. After all Jon did so well after his transplant that he could have been a “poster child” for transplantation. It has been hard to come to terms that this is not meant to be for Jen. I am very grateful for her second transplant as well as her first also; I guess I just didn’t think her fight for life would continue to be such a great and continuous struggle.

Jen was readmitted in June for cellulites. She received IV antibiotics overnight and was discharged the next day to continue on oral antibiotics. In July, Jen had another admission because her lft’s dramatically increased again and her prograf level bottomed out. Prograf – that’s a drug I love & hate. It’s great at preventing and turning around rejection if kept at a high enough level. For Jen a high prograf level is detrimental to her kidneys. Once in clinic her surgeon made the comment, “ if her bun & cr don’t come down to normal levels & stay there she’ll be facing a kidney transplant by the time she’s 30 yrs old. She was 18 then. She’ll be turning 21 in February. Does that mean she has only 9 more years with her kidneys? A shorter time if her kidney function elevates again?

In 2006 Jen’s prograf dose was changed 16 times, prednisone changed 10 times, cellcept added back and then changed 2 times, actigall added back & dose changed 2 times, only her blood pressure medication has remained at the same dose this year. She started 2006 on 2mg prograf, 2.5mg prednisone, & 25mg tenormin. During the height of her rejection she was on 9mg prograf, 40mg prednisone, 1000mg cellcept, 600mg actigal & 25mg tenormin and had one bolus of 1000mg of IV(solumedrol)steriods. Currently she’s on 3mg prograf, 1000mg cellcept, 600mg actigal, 5mg prednisone & 25mg tenormin. And after 10 months she is finally back out to once a month labs after having labs 48 times in 2006. In addition she’s been on antibiotics 4 times during the year.

I hope & pray that 2007 is a stable year for Jen. Stable to me means only once a month labs & no medications changes or only minor ones and no admissions.

JON - 2006 was also the year that Jon was no longer our “stable” one. After a biopsy in July he was diagnosed with bridging fibrosis in his liver, not good news. Bridging fibrosis is, in simple terms, one step short of cirrhosis. We were shocked at this news, especially since his biopsy from 3 yrs earlier showed no significant fibrosis. He is being treated to try and stop the scarring from advancing. However, the treatment is harsh on the body and may not work. He has been treated for 3 months and will need treatment for an additional 9 months for a total of one year. Even at that point we will have to wait 6 more months to be sure the treatment worked. He had labs drawn the week before Christmas & we are awaiting those results. Those results will tell us if the treatment is working, how well it’s working or if it’s working at all. We wait on these results in fear. We fear the treatment is not working. He has had several side effects from the treatment. Weight loss, some depression issues, lowered white blood count, lowered red blood count, lowered platelet count and lowered hematocrit & hemoglobin. The low H & H is causing him to be easily fatigued and short of breath with any exertion. Except for the recent issues with depression Jon has coped relatively well. We are trying to get extra calories in him to prevent any further weight loss as per his doctors orders. Jon started the year on 25mg gengraf, 40mg nexium, 100mg adoxa, and 75mg zantac. He ended the year on those same medications/doses with the addition of the two medications we are hoping will prevent further scarring within his liver. He has had lab 14 times this year and only had the two new medications added as his only medication change. We are hoping & praying that it is the Lord’s will that Jon will be cured. If it is not, that the Lord will grant our family the strength to handle whatever comes our way and still give Him the Glory. Breaking news: Jon’s results from Dec 21st showed that his body is responding positively to the treatment. While we still have a ways to go, this is ABSOLUTELY the best news we could get at this point. Positive news to take into the New Year. Praise God!

Twenty years of continuous stressing over Jen & Jon’s health is taking a toll on my own health. I have been in the ER three times in the past 2 years, twice in the past several months with gastritis. I had another episode late in the evening of Jan 1st where I did not go to the ER, I just took something for pain and rode it out. So that’s 3 times in 2 months, the last two only 9 days apart. I will be following up with my physician soon to see what can be done to help prevent any future episodes.

We will probably need to get Jon’s H & H checked this week. He seems more pale than he has in the past. His hemoglobin on the 21st was 9.6, the hepatologist really does not want him running below 10 but he had seen Jon in clinic on the 21st and felt Jon was compensating very well. He said his young age is in his favor. I dread taking him in & am trying to wait & see if it resolves itself. I’ll call his doctor tho and let him make the call on whether or not he needs a cbc done. Poo, just when he gets to the point of only monthly labs. Oh well, the treatment is working and we’ll just dealing with the consequences as they come.

We hope & pray that all the families we know, whether in person, through CHOA or the internet, have a happy and healthy new year. I may not be able to support them as much as I have in the past due to having to focus more closely on my family, but I hope they know I still keep them close in heart and in prayer too. I am realizing that I must take care of myself so that I can continue to take care of my family. May you all have a Blessed New Year.

With much love & prayer for all,
Karen

Monday, December 18, 2006 8:14 PM CST

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Above is a slide show of Jen. The first picture was about 8 weeks after her first transplant. The second is the day after her second transplant. Her transplants were 9 years, 10 months, and 5 days apart. Her Gift of Life from her first donor saved her life in 1993. If it had not been for her donor family’s decision to donate she would have died within a month. That precious Gift of Life just kept giving and giving, despite all the complications that occurred. We will never be able to thank her Donor Family enough for what they did for our little 7 year old daughter, they saved her life.

The third picture is of Jen awake & alert, but still on the ventilator. She had acute kidney failure and required dialysis temporarily so she needed to be back on the vent for several days. The next picture shows Jen chilling out one day while waiting on word from the Docs on whether or not she could be extubated for the third time. I guess the third time is the charm as she did not have to go back on the vent.

The next picture is of Mark pretending to use Jen’s pulmo aid. We call it “Dad and ICU Psychosis.” Next is Jen with the two family jokesters on the day she was moved out of ICU and onto the floor to continue recovering. The 7th picture is Jen and the CHOA Transplant Team on the day her jp and central line were removed.

Then the picture that reminds me of the time Jen got so sick so fast. She had been admitted to our local hospital for dehydration. Later that day her temp rapidly rose to over 104. It took 4 hours of packing ice bags around her to get her temp to break below 104. After her blood pressure plummeted to 75 over 39 I was very scared. Jen was life lighted to CHOA and admitted to ICU. After changing antibiotics and adding more antibiotics, discontinuing her cellcept and skipping a dose of prograf she very quickly got better. She was in septic shock and within hours of dying from urosepsis.

The next several pictures are from this year. First April 2006- She was admitted for a liver biopsy which showed moderate rejection. Prednisone(steroids) were added back to her list of medications as well as cellcept, and actigall and a dramatic increase in her prograf. For our liver friends – Prior Jen had just recently d/c’d steroids(this is what caused her rejection)been on 2mg prograf bid and 25mg tenormin. In order to stop her rejection her meds were changed to 9mg prograf bid, 40mg prednisone, 1000mg cellcept bid, 600mg actigall bid and still 25mg tenormin. So back on triple immunosuppression. It has taken 9 months to get her back out to once a month labs and down to 3mg prograf bid, 5mg prednisone. She is still on 1000mg cellcept bid, 600mg actigall bid and 25 tenormin.

We will always think of both Jen’s donor families but at Christmas time we especially think about how hard it must have been for Jen’s 2nd donor family to have seen their precious family member suffer injuries so devastating that they could not live. But even in their time of such sorrow they gave Jen the Gift of Life. Her life was saved once again.

Both of Jen’s donor families are our hero’s. They gave Jen back to us twice. We hope they found some sense of peace in donating the Gift of Life to Jen and others. May God continue to hold and bless them.

Tuesday, December 12, 2006 9:14 PM CST

Christmas in Pictures

1986
Jen's first official Christmas picture

One of Jen's gifts was a “walker” toy. It was a big telephone with a big red “nose” on the front. Jen saw it and bent over and bit the nose. She didn't need it to help with learning to walk as she had started walking a month earlier at 9 months old.

1988

Jen always loved getting into her Christmas stocking as much as she did her wrapped gifts. In the picture above she was digging for the fruit at the bottom.

1991

This was our first family portrait as a family of four. Jen was 5 ½ years old and Jon was barely a year old. We lived in Army quarter at Ft. Hood, TX.

1993

Christmas 1993, the year both kids received liver transplants within 15 days of each other. We were so happy and felt so blessed by God that we were celebrating our Savior's birthday as a family that still had four members and that both kids were at home & doing well.

1996

Christmas in Texas – Mark was a civilian and we were living in Killeen, TX. Jen & Jon could not believe that Santa brought them a TV and a Nintendo game system.

Our family has celebrated Christmas in many places. Brunswick, Georgia; Hinesville, Georgia; Cordele, Georgia; Ft. Hood, Texas; Cooperas Cove, Texas; Killeen, Texas; and Chatsworth, Georgia. Mark and I celebrated 4 Christmas seasons as husband & wife before being blessed with our first child, Jennifer. We celebrated 4 Christmas's with only one child. We have celebrated 16 with two kids. As we prepare to celebrate our Savior's birth this year we are reminded of all the blessings we have received. 24 years of marriage, two children, 3 gifts of life for our children, two transplant teams dedicated to saving our children's lives, extended family, caring friends, and a loving church home.

I would like to end this update with this prayer.
Father, I thank you for my family. Life is not always easy for us, but we know that You are always with us. As Your Word says, You will never leave us nor forsake us. Thank you for the love that holds us together and for always meeting our needs. Draw us closer together through this coming year. We love You and want our time of celebration to be memorable today. In Jesus' name, Amen.

Wednesday, December 6, 2006 8:21 PM CST

We finally got all of Jon's labs back. His liver numbers are still in normal limits. Some of his numbers that have to do with the different blood cells are off somewhat but this is being attributed to the new medications. We just love those side effects. Jen always finds the side effects from her meds. Now Jon is doing the same thing, this sibling rivilary is ridiculous! ha ha.

Next Thursday Jon will be 12 weeks into his treatment protocol and will be getting labs on the 20th to see how much the meds are helping. We would appreciate prayers for the labs to show a positive response. Unfortunately he is suffering from another side effect, depression. We will be talking to his doctor on the 20th and see what he recommends. It is not unusual for most patients to have to take antidepressants while on this treatment. I had thought we could just work harder to keep him in a positive mind set but even the music minister at our church noticed Jon seemed different. So it's time to seek help.

When I think about how God continues to move in our lives I am amazed. When we were looking for a church home after moving to north Georgia we had visited 2 other churches, one of those several times before looking again. We just happened to think about "that church on the bad, blind, sharp curve." April 4, 2004, my birthday, was the first time we visited Spring Place Baptist Church. We felt right at home immediately. Mark & I joined within weeks and since then both kids have been baptized and become members too. Jon absolutely loves the youth group. He will be attending Camp Jabez on Jekyll this weekend with the youth group. There are 5 chaperones and 26 kids going, please keep them in prayer as they travel and participate in paintball games. This trip will be so good for Jon. It is exactly what he needs right now and I'm awed that God is again providing what Jon needs & in a way that will help him grow as a Christian. Again and again I am reminded that God is indeed Everywhere.

We thank everyone for stopping by to check in on Jen and Jon. Please sign the guestbook so they know you stopped by.

With much love & prayer for all,

Karen

Friday, December 1, 2006 9:08 PM CST

Jen's labs this week were all in the normal range. Sam's(liver)happy and K & P(kidneys)are happy. We are all happy. Now I feel more comfortable with her going out to once a month labs. It took over nine months to get back to this point this time though. Since retransplant almost 4 years ago Jen has never gone more than 6 months straight with normal labs on a monthly schedule. We definitely equate monthly labs with a sense of normalcy(as normal as life can get for a transplant patient). She is still on a higher dose of prednisone though, 5mg. And still on 1000mg cellcept bid, and prograf is 3mg bid. When all this started back in March she was on 2mg bid prograf, 2.5mg prednisone and NO cellcept. So she's not back where she was before this last rejection episode started but probably as close as she is going to get. This episode was scary for us because it took so long to get it under control, was her 2nd moderate rejection episode(she's had 3 others that were mild), put her back on triple immunosuppression and left her with some portal fibrosis in her liver. This is all with her second transplanted liver. The positive thing is that her kidney function stayed stable even through the time frame that she was on 9mg bid of prograf. That was a blessing from God of which we are so grateful and give Him all the glory.

I don’t have all of Jon’s labs yet. The lab personnel was, difficult is all I will say. We got his H & H which were 10.1 and 30.2 so those are holding steady. His wbc was in the normal range at 4.4 yahoooo! His anc was also normal. With these results known, he was able to take the medications that can help with his liver. The other results we will wait on until next week. Provided the other numbers are good he will be able to go to a monthly lab schedule. Wow, both kids back on a monthly schedule, I won’t know what to do without one or both of the kids not getting labs every week but I’ll find something.

We were having some issues with getting Jon’s meds approved through our insurance but God answered our prayers there too. His meds came today for the next 90 days and are approved until next September. It finally looks like all the details in implementing a plan of treatment are falling into place and all parties are in agreeance. Jon still needs prayers that his treatment will work and prevent further scarring in his liver. He still has a long road ahead, we won't know for more than a year if this treatment will be successful.

Now that both kids are as stable as they are going to get I feel a little less stressed, especially since this has been the roughest year we’ve ever had, even more so than when they were transplanted. Trust me, that is saying a lot especially when you realize they were transplanted in 1993 fifteen days apart and Jen spent 126 in the hospital and needed a second transplant in 2002 and that wasn’t an easy time either. And we found my book by Beth Moore, “Believing God.” It was lost for over a month. Satan’s little game is not working here. Our God is “Everywhere” as our angel friend Haley would say.

Thanks everyone for stopping by. I’ll leave you all with this verse from Psalms 150:6 - Let everything that has breath praise the Lord.

Karen

Monday, November 20, 2006 11:04 AM CST

HAPPY 16TH BIRTHDAY JON

Jon's 16th birthday is coming up on November 26. It's hard to believe that my baby boy is that old. So much has happened in those 16 years.

In his lifetime Jon has had:
2 ambulance rides
been in 8 different hospitals in 2 different states
hundreds and hundreds of sets of labs
at least 10 liver biopsies
4 upper GI evaluations
24 hospital admissions
been on about 100 different meds over the years
been on special formula
tube fed(didn't work)
4 rejection episodes
participated in 2 drug studies

He's had surgeries for:
cleft lip repair
tubes in ears(twice)
cleft lip revision
liver transplant
central line placement
hernia repair
oral lesion removal

He's been diagnosed with:
an undefined familial liver disease
failure to thrive
puritis
varices
end stage liver disease
developmental/speech delays
CMV
ADHD
cataracts
and most recently w/stage 2 fibrosis/scarring in his liver

He has seen specialists in these fields:
Pediatrics
Neonatology
Gastroenterology
Cardiology
ENT
Plastic surgery
Genetics
Transplant surgery
Ophthalmology
Internal medicine

For each and every one of the above events and people we are thankful for because Jon is still here with us today.

He has also:
graduated from early childhood development/speech therapy
learned to ride a bike, dirt bike, 4 wheeler, rollerblades
does scary things on a trampoline(scary for parents)
played soccer for several years
was a cub/boy scout for 5 years
has gone to transplant summer camp 7 times
participates with teen transplant activities
graduated from preK, K, 1st through 8th grade
goes on trips with our church youth group
accepted Jesus as his personal Savior
was baptized
become a member of our church

Yes, Jon has been through so much medical stuff but he is here and his lives life with great enthusiasm. He is currently experiencing some liver related health problems but it is our hope that he will overcome this difficulty without needing another liver transplant.
Please join us in wishing Jon a Happy 16th Birthday.

We thank you all for your thoughts and prayers over the years and wish you all a happy and safe Thanksgiving.

Karen, Mark & Jen

Tuesday, November 14, 2006 10:07 PM CST

I will try this update again. I had a long post typed out and it disappeared into cyber space. The season of viruses has arrived in North Georgia. I am one of three teachers for the birth to 2 year old Sunday school class at our church. We wiped so many noses and heard so much coughing going on during that short hour.

Jon started last week with what we thought was strep, but the quick strep test was negative. But he did have a red, swollen throat so he was put on a mega dose of an antibiotic. That was last Thursday, as of today he is not better, in fact, is worse. So tomorrow he will be off to see the wizard, oh sorry, I mean the doctor again. Weird thing is that he is not running a fever. I’m not sure if his white blood count is low that he will run fever or not? Good question to ask the doctor tomorrow. It is because of his WBC being low that we are so concerned.

He is still tolerating the new meds fairly well. His activity level is continuing to decrease. He is not riding his bike much, staying inside playing playstation, watching TV, etc. He definitely has “mild pallor” as his doctor put it. But all these things are expected side effects from meds. He did have labs Monday; we should get those lab results tomorrow too.

Jen – Ok, one kid sick at a time please. Jen started throwing up last night. It took several hours and two tries last night to get her prograf pills down and more time to get her cellcept down too. Both meds are to prevent rejection. She never did get the actigall down. Actigall is to promote good bile flow. She puked again this morning just before class at school. I do have to say I’m proud of her for going on to class instead of calling me to come home. Sorry to those classmates she may have given whatever it is she has too. She still is not feeling really well, still nauseous. She is scheduled to get labs tomorrow and they may be off since she’s sick. I would almost let her wait a day or two but, the last time she started throwing up, her prograf level bottomed out and she wound being admitted, having a liver biopsy that showed moderate rejection. But she had just discontinued the steroids too. That started this whole thing that she is just starting to get back to normal. She is still on 5mg of steroids(was 2.5mg before discontinuing & got up to 40mg during rejection) So I’m not sure if she’s got something viral or rejection starting or what. We’ll just have her labs drawn and pray for the best.

Speaking of praying, faith, I have found myself questioning my lack of faith recently. I know I need more bible study time. I even ordered a book by Beth Moore, “Believing God.” Well, I guess Satan decided he didn’t want me to read the book because it has disappeared from our house. I have looked high and low, as have Mark and the kids. I feel that my lack of faith has a lot to do with everything the kids have been through this year with their health, yet at the same time I feel selfish. Just in the last 2 weeks 2 of our liver baby friends have earned their angel wings because of lack of organ donors. We have known way too many(even one is too many though)kids and adults who’ve died waiting for a transplant. I feel guilty that my family has been given the Gift of Life three times while other families don’t get even one Gift of Life. As I’ve said before it’s so frustrating to see and know people who die while waiting when I know that if the families of everyone who could donate their loved one organs, did donate, that there would be no deaths due to lack of organs. Ok, I’ll get off this soap box; I’ll just close by saying thanks for stopping by and PLEASE be an organ donor.

Thursday, November 9, 2006 8:53 PM CST

Saturday, November 11 - We lost another little liver friend last night. Little baby Jackson went to be with the Lord. It's so unfair, so unfair, all these babies, kids, and adults dying because of lack of organ donors. Please keep Jackson's family in prayer as they go through this very sad time.

I took Jon into check for possible strep today. The quick strep was negative but his left tonsil and that whole area was red and swollen. The PA put Jon on a whopping dose of 875mg of amoxicillin twice a day. This put me more at ease since his while blood count is below normal and his anc is also below normal. For those who don't recognize this medical stuff, it means Jon is more susceptible to catching anything from anyone around him. But he is at a higher level than he was 2 weeks ago. He has not run a fever and it does not seem to be slowing him down.

On the Tuesday update I forgot to mention that Jon's ast & alt are in the teens & twenties. Those are very good levels. He had not normally run that low although where he usually runs is still in normal range. It seems that his liver is happy even with the new meds. I was so worried about the new meds making his body more likely to try and reject his liver.

Tonight I sit and wait to hear if one of our little liver friends will stay strong and stay here or earn his angel wings. Please keep little Jackson in prayer as well as his devoted parents. We just lost another of our liver friends less than a week ago, baby Dillon. So many kids who need transplants, so few organs available, so sad, so sad....

Tuesday, November 7, 2006 5:25 PM CST

Jen - If next weeks labs come back ok she will, finally after 9 months, be able to go to once a month labs. Since retransplant she has not gone longer than 6 months in a row on once a month labs. Once a month labs represents stability to our family. We are chanting "once a month, once a month" for Jen.

Jon - We think Jon's counts are as low as they are going to get, so this should be his new baseline for the remainder of treatment with the new medications. It's not too bad, no differences are noticed unless he really exerts himself(tennis, bike riding, etc.). Even then he just takes a short break to catch his breath and he's right back out there.

His lab schedule has been reduced from every week to every other week. At this new schedule if his numbers stay ok for two lab draws he will also go to once a month labs. It will be so great to have both kids back to once a month labs again. We are still chanting "number one, number one" for Jon.

The party at CHOA by the Haley Vincent Foundation was fantastic. The kids just kept coming and they all had a great time painting posters, selecting a gift, having a snack & getting goodie bags. While I am so glad it was a happy time for the inpatient kids, at the same time I'm sad because of the reason we were all there. I wonder how many more lives Haley could have touched if she had been given the chance at the Gift of Life. I am amazing by her family's courage and strength to start this foundation to carry on what Haley started. Our prayers are always with this special family. We miss you Haley.

Still on a sad note, another of our liver friends lost their baby boy. He was also waiting for a liver and did not get his chance either. It's so frustrating because if the families of everyone who could donate made the choice to donate there would not be a shortage of Gifts of Life.

We don't know who any of the three donors were for Jen and Jon were, we just know that their families made a decision that gave the Gift of Life that saved our children.

Thanks for stopping by. With love and prayer for all.

Karen

Thursday, November 2, 2006 8:02 PM CST

Update from Friday Hepatology visit. Jon's doctor feels that he has hit the low his rbc, wbc, anc, & H and & are going too. It will probably be his baseline for the rest of the time he's on this meds. Jon is continuing to ride & jump his bike with frequent rest periods. If this is as bad as it gets, we'll gladly take it as Jon is still able to do anything he wants too just resting more. He did lose between 6 or 7 pounds but that was to be expected too. The news Jon loved most was that he gets to go to labs every other week, yea! Re check with the hepatologist in one month. Such sad news about our liver friend Dillon, he passed away last night. Please say a prayer for his family.

Jen's labs are not back yet, sometimes waiting on the prograf level holds all the results up. I'm sure they'll be in tomorrow.

Jon's labs are in. His anc is down a little more to 1100, this is not good but not in the range that requires further treatment. His platlets have dropped to 173 which is still in the normal range but does represent a significant drop from his usual 250-275 range. His H & H is down to 10.1 & 29.4, which is further down than last week. I believe, if I remember right, that 9 for Hemoglobin is the range where epogen will be added to stimulate his bone marrow to produce more red blood cells, so we are not there YET. Interestingly enough, his ast and alt are in the teens and twenties, bili staying down in the normal range now and kidney function is good too.

He has a checkup tomorrow with the hepatologist. We will be mentioning his shortness of breath which is occurring more often now and bone pain in his left arm. His appetite remains decreased, he will be weighed in clinic tomorrow. It's not uncommon for weight loss to occur with the new meds. While his energy level is low for him he has been riding his bike in the yard and jumping his ramp. So he really is trying his best to work thru all these medication side effects.

We thank you all for continuing to check in on Jen and Jon. We have so many of our liver friends that are so sick, Dillon, Jackson, Antonio, Braden, Havalah, Caden, and others. We our special friend Aiden continues to have health issues we hope and pray that answers to his issues are found soon and treatment can begin so that he feels better and his mom can relax and just enjoy her two handsome boys.

As always please remember the families of Sydney and Haley. Jen and I are so honored to be able help out at Haley's birthday party this Sunday. The Haley Vincent Foundation is sponsoring a party for the kids at CHOA in honor of what would have been Haley's 13th birthday. We are lifting Haley's family in prayer as they continue what Haley started.

With much love and prayer for all,

Karen

Thursday, October 26, 2006 5:16 PM CDT

We finally got off the roller coaster ride with Jen’s labs, now we are on another for Jon’s. Good news is that his wbc(while blood count-fights infection)has risen to 3.2. While it’s still under normal range at least it’s higher than last week and it means Jon will not have to get a neupogen injection to stimulate his body to produce more. His anc is 1300 just under normal. And we don’t have to be quite as worried about him being around people in general.

The not so good news is that his hemoglobin and hematocrit are continuing to drop. This week they are 10.4 and 30.7. He will get labs again next week on Wednesday and then see the hepatologist on Friday in Atlanta. I am hoping his H & H don’t drop any lower or he’ll need an epogen injection. I am so grateful that the neupogen and epogen are available even though they mean an injection for Jon and one of the side effects can be bone pain as these drugs stimulate the bone marrow to produce.

He definitely has less energy now. He hardly ever jumps on the trampoline, or gets on the tire swing, but does climb a tree every few days. He feels cold most of the time, appetite is way down, he sleeps more, is starting to look more pale, sometime short of breath, complains of just not feeling good. All these all are side effects of the new meds. I love & hate these meds. I’m glad they are available but wish the side effects weren’t so bad. I have to remember that the long term goal is to stop further scarring in his liver that could eventually led to his liver failing and another transplant. He does manage to gather up enough energy to push his sisters button tho. Ha Ha

Speaking of Jen, her labs last week were very good and her prednisone was reduced to 5mg a day. Yeah, almost down to where she was before her roller coaster ride for the year started.

Please keep Jon in your prayers that his body will adjust to the new meds without further addition of medications. I have a special prayer request. We have 3 little babies that we know from our liver support group that are having a very difficult time and they need lots of prayer right now. Please pray for Dillon, Jackson & Antonio. And please don’t forget Haley & Sydney’s families. Thank you for checking in on Jen & Jon.

With much love & prayer to all,
Karen

Sunday, October 22, 2006 9:24 PM CDT

Labs are in. We didn’t get all the numbers, just the ones that are critical for both kids. We’ll get the rest tomorrow. Ironically enough, it’s not all the same numbers anymore. For Jen, SAM(liver) is happy and so are K & P(kidneys). We didn’t have the prograf level on Friday but evidently the transplant team got it. They reduced her prednisone from 10mg to 5mg. YEAH!!! She is almost back to where she was when we tried to discontinue the prednisone(2.5mg) The hope is that her body will tolerate getting back down to that level without rejecting again. The team says she will never come completely off steroids. But at least she is down to 3mg bid on prograf. She was on 2mg bid when she starting rejecting earlier this year. She got up to 9mg bid at one point trying to get her level up and stop the rejection. She has begun to have frequent headaches though. I think we will have Jen see the doctor in Atlanta when Jon goes on November 3rd and discuss the headaches. They are probably from the prograf, bummer, not much we can do about that.

Jon had me worried; his bilirubin went from .7 to 1.6 after only one week of the new meds. The second wk it was 1.5 but this past week it was down to 1.0. The hepatologist explained that a rise in bili was to be expected with his drop in red blood cells and H & H. His H & H started out at 14.6 and 41.3 with the last labs it was 11.1 and 32. And his white blood count has dropped from 5.3 to 2.6. His ANC is down to 750. My understanding is that they won’t do neupogen shots until the ANC is down to 500. And won’t do epogen shots until his Hemoglobin drops below 9 or 10. We are almost at those numbers. This will require a trip to Atlanta for these shots. If it looks like he will need them every week then we’ll start them at home instead of having to drive to Atlanta every time. I hate to think what the co pay will be for the neupogen and epogen. I’m too scared to look it up on our pharmacy ordering services, plus I don’t know the dose anyway. Probably better to not know in advance. He is more tired than usual. Saturday night he played tennis with his friends from church and was short of breath. This is probably due to a further drop in his hemoglobin. He also seems sadder. These darned new meds sure do have some major side effects, but it they will help prevent more scarring in his liver then we’ll just have to deal with them.

I hope to get the kids flu shots done on that visit to Atlanta. I’m not telling the kids until we get to clinic. That way they won’t have as much time arguing over who has to go first. Yes, even at 20 and 15 years old they still fuss about shots. I don’t fuss at them anymore. The last time I did, I wound up getting the flu(can’t get the shot, allergic to egg) and the kids said it was “revenge” for fussing at them.

Well this is a long update so I’ll stop for now. Stay tuned, there will be another update this week. Jon will be getting labs every week for a while and Jen is still getting labs every other week. Please remember Sydney, Haley, and Lydia’s families in prayer. And also our friend Aiden, his little body has something going on and we are praying so hard for answers him and his family.

Karen

Sunday, October 15, 2006 8:05 PM CDT

Wednesday pm update: We got Jon's labs from last Thursday back today. His bili from the week before that was 1.6 and I really thought it was a lab error. However, last weeks level was 1.5, anything above 1.0 is above normal. I noticed today that I can see some yellowness to his eyes. I am hoping it is a side effect from the new meds, although I don't remember being warned about it and it's not on any of the literature either.

Jen is not feeling well today. She went to bed very late last night with a headache. Got up this morning still hurting, lights hurt her eyes & the slightest sound was too loud. She slept on the way to get labs, ate a biscuit, went to go to school & had to just go tell her teacher she couldn't stay, slept all the way home and slept in until 6pm. She's eaten some soup but still does not feel well. I hope it's just that she is short on sleep & her body is rebelling. I pray her labs are ok from today. It gets stressful when both kids have something going on at the same time. Back to the big update.

A general "life" update on our family. It’s a long one so pull up a chair & get some coffee.

JEN
Jen's recent labs were all within normal limits. She is on 3mg bid prograf, 1000mg bid cellcept, 600mg bid actigal, 10mg daily prednisone and 25mg daily tenormin. Her prograf level was 18 - the team wants her to run between 15 & 20. She remains on an every other week lab schedule, but we hope that soon she can go out to once a month labs.

This quarter in school she is taking a business office class, business math class and a college success class(class designed to help students be successful in college). She has finished all the prerequisites for Radiology Technology so the classes she is taking now & for the next 2 quarters are what ever fits her schedule and is half way interesting. She can’t take time off while waiting for the Rad Tech classes to start in summer 2007 because she must be a full time student to remain eligible for insurance. She is not working right now so that she can concentrate on her studies to get and keep her grades up.

She has begun to balk at attending church with the family. Any prayers to get her back in church would be greatly appreciated and for continued stable health too.

JON
As I’ve mentioned in previous updates Jon’s latest liver biopsy showed that his liver has scarring occurring. Very simply put: There are 4 stages of scarring. Stage 1 being portal fibrosis, Stage 2 bridging fibrosis, Stage 3 basically beginning cirrhosis, and Stage 4 cirrhosis. Three years ago Jon was at 0, no scarring and now he is at stage 2. He has begun taking new medications to try and help but we won’t know for a while if they will be successful. The new medications have side effects that may make it necessary to add even more medications to counteract the side effects. See a pattern forming here? We are also concerned that his body may try to reject his liver. We hope that his body will remain “tolerate” to his graft(liver). The new medications have started to drop his blood counts. We are praying that his body will learn to adjust & no more meds will be needed and also for no blood transfusions to be necessary. We are making more frequent trips to Atlanta & thank God for his blessing of lower gas prices. All these new changes in Jon’s health has been hard on Jon and our whole family. Jon is not used to being the “sick” kid, that’s usually Jennifer’s body’s trick. It’s been hard for Mark & I too because we are used to Jon being our “healthy” child. We are trying to adjust our thinking and remember to be grateful that he had 13 years of exceptionally good health, especially for a transplant recipient.

Jon is having an especially difficult time with concentrating on his school work. With the new meds he sometimes feels really bad, about like he has the flu. We are trying to push through, although it will probably mean taking ½ days and shorter holiday breaks. Please keep Jon in your prayers for his health and school work.

Jon, as bad as he feels sometimes, always seems to manage to make it to church & all the youth group events. He loves participating with the youth group. He even went on an overnight campout last weekend and did fine. He did come home the next day and sleep the rest of the day.

MARK(Dad)
Mark is working 12 hour shifts 6 days a week to try and stay ahead of all the medical expenses. It’s been a rough year in that respect. He is a member of our church choir but wishes he had more time off to participate more with church functions. We are hoping that soon he can go back to working 5 days a week and have more time for church and to rest and to spend with us at home.

KAREN(mom)
As for me, I have finished my medical coding classes and even managed, between 4 hospital admissions for the kids and one surgery for me, to maintain a 4.0 GPA the whole time. I finished just in time to be more available when Jon is not feeling well & for more frequent labs and checkups with his hepatologist in Atlanta.

Pawney, Sissy, Messy
These are our cats. Pawney decided that he was not getting enough attention and had his own admission to the vet hospital. You know, it was so strange to take him to the vet & leave him. He stayed for 3 days. I am so used to staying with my kids in the hospital that I felt like I deserted Pawney. But he recovered & is back to doing his job of trying to keep us all relaxed. Sissy has been so loving to Pawney since he was sick. Messy is doing well, well at ignoring us except when she wants something.

Thanks everyone for checking in on our family. Please sign the guestbook so the kids and Mark & I know you stopped by. Remember, our motto for Jon is Number ONE! Also please remember my brother Jimmy & his wife Debbie, today makes one year since they lost their precious daughter Sydney. We love you Jimmy & Debbie.

Karen, Mark, Jen and Jon

Tuesday, October 10, 2006 10:37 PM CDT

Short update Friday am - Jon's counts have started dropping. He had more labs yesterday & we are waiting on those results as how to proceed from here. Please keep him in prayer. Now, back to Tuesday's update:

Randy Travis sings a song “Through the fire” that sums up how I cope with all my family has been through since Jen & Jon’s births and all their medical issues. I don’t know how to put music on here so I’ll just share the words with you.

So many times I’ve questioned certain circumstances
or things I could not understand.
Many times in trials, weakness blurs my vision
and my frustration gets so out of hand.
It’s then I am reminded that I have never been forsaken,
I’ve never had to stand the test alone.
As I look at all the victories the spirit rises up in me,
it’s thru the fire that my weakness is made strong.

He never promised that the cross would not get heavy
or the hill would not be hard to climb.
He never offered victory without fighting
but He said help would always come in time.
Just remember when you are standing in the valley of decision
and the adversary says give in, just hold on,
our Lord will show up and He will take you through the fire again.
I know within myself that I would surely perish,
if I trust the hand of God, He will chill the flames again.

I can’t listen to this song without crying and being so thankful that our Lord does show up and that He does led me through the fires in my life. Sometimes He shows up in the form of my wonderful loving husband, the hugs from Jen and Jon, my sweet Christian liver friend Lisa, or a rainbow in the sky. My God is good all the time.

Please remember Haley and Sydney’ families. Oct 1st and the 15th makes one year that these two families beautiful daughters passed away. Haley and Sydney, we will never forget you.

Sunday, October 1, 2006 8:54 PM CDT

Jon has started his treatments. He was very nervous about getting an injection, then when we got there they were stressing that he should do them. One of the transplant clinic nurses talked to him, showed him on a "dummy". With the nurse guiding him he gave himself the shot! He was so nervous that he was trembling. He said afterwards that getting labs hurts worse.

He started feeling cruddy about 9 hours later, low grade fever, chills, nauseous, achyness. He took some tylenol & huddled on the couch under blankets. He did go to sleep by 10. He said he slept well, but he looked tired the next morning. He's complained on & off about not feeling too good, but he went to church today(twice), went to the races last night w/the youth group. So he seems to be wanting to push through it. Bad thing is that the youth group is camping out this Friday(shot day). He wants to go so we are letting him, but will let the youth minister know that if Jon wants to come home to just call us & we'll come get him. Thank you God that they are camping nearby.

He is now on a weekly lab schedule for one month. If his numbers(CBC)stay ok then it's every two weeks for one month, then once a month. So now he is up to 7 meds, 8 if you count the tylenol. Please keep Jon in your prayers that his body can tolerate these new meds.

Jen's liver numbers were good. Her prograf level was 26, too high. Her kidney numbers were BUN 25 & creatinine 1.1, the creatinine is still within normal limits but barely. The transplant team reduced her prograf down from 5mg to 3mg. And also dropped her prednisone down from 15mg to 10mg. They said labs in 2 weeks but we may elect to do them in 1 week. Maybe both kids at the same time. Prayers for Jen's kidney & liver(K & P and Sam)numbers to be within normal range. And for that darned prograf level to be with 15-20.

Today makes one year since we lost our liver friend Haley. Please keep her family in your prayers. Please also remember our friend Aiden he has been in the hospital twice in one month & an ER visit too.

Thanks for stopping by to check on Jen & Jon. Please sign the guestbook if you will, the kids read it.

With much love & prayer,
Karen

Tuesday, September 19, 2006 5:15 PM CDT

Hello to all

I was going to post about all the things I'm scared of with Jon's treatment. Realy major scary side effects but God redirected me. I had the chance to speak with our Pastor today and realized that I was not “letting go and letting God.” I am, by nature, a worry wart. Giving things up to God is hard for me, I want to know, now, exactly how things will work out. Psalms 145:8-9 “The Lord is gracious and full of compassion, Slow to anger and great in Mercy. The Lord is good to all. And his tender mercies are over all His works." We are dealing with issues other than health related and these two verses are just what I needed to read today. One of the most kindest ladies from our church stopped by today with a flower and card for me. Her card was the direction to these verses, thank you Mrs Darlene. I need that so very much.

Jen's labs this week were good. She's down to 15mg of prednisone & labs every 2 weeks. We received the news that Jon's new meds should arrive tomorrow and we will go to Atlanta on the 29th to start his treatment. He is “working” out “trying to stay in shape” because the advice we've gotten from others who've been on these meds said to stay as active as possible. Jon is always active, we can't keep him still long anyway.

Another verse I think fits well with recent events in our lives is Proverbs 3:5-6 “Trust in the Lord with all your heart, And lean not on your own understanding: In all your ways acknowledge Him, And He shall direct your path.” Our prayers are that God will help us go through whatever comes our way with grace & give him the glory no matter how hard that path is. I always try to remember Jen & Jon are here with us and we are grateful for each day we all have together.

God IS good, ALL the time.

Karen

Wednesday, September 13, 2006 1:02 AM CDT

Please don't forget to view the pictures in the photo section. I have not figured out how to put them here on the main page yet.

I talked to the mail order department of our insurance and was told today that we'd be getting a phone call about setting up a date to deliver Jon's new meds within 1 or 2 days. It was around 5 pm on Tuesday when I called should I should hear from them by end of day Friday. If meds are to be shipped and received during the week, we'll schedule an appointment next Friday in clinic to be shown how to administer the injection. One med is in injection form, once a week and the other is a pill Jon will take twice a day. He also has to drink half his body weight in water daily during treatment. Please remember him in prayer that the side effects will be tolerable and that the treatment will be sucessful. He is nervous and so are Mark & I.

It's getting really real now that I know the meds will be here soon. These new meds will cost $175 every three months. There maybe other meds added to that if he has side effects. Right now it looks like our copays for just meds will run over $700 every three months between both kids.

Please remember our friend Aiden, he & his was at family transplant camp with us & he got sick. He needs to be lifted up in prayer for his severe life threatening allergies. Also another liver friend Laura received her precious gift but due to clotting issues needs a new gift, please remember her & her family as they wait, she needs a new gift soon. Another liver family lost their little girl, Rani, please remember them too. As well as our Angels Haley, Sydney, and so many others.

With much love and prayers for all,

Karen

Thursday, August 24, 2006 1:36 PM CDT

The letter from our hepatologist about Jon's treatment came in today. The scripts were faxed to insurance and we are waiting to find out if insurance will require a prior approval letter. So we are in a holding pattern.

I've changed the pictures. The one above is not in the best shape but it was the day we got to go all the way home, not just back to the Ronald McDonald house in Dallas. We were so happy. For the transplant parents out there, look at the hair on Jon's arms and legs from the cyclosporine. Mark joked that we didn't know whether to use bath soap or shampoo when we bathed him. I just thought he was so adorable and he was so healthy and active I didn't really care about the hair. Check out the other photos in the photo section.

Our mantra is still #1. for Jon's treatment.

Well thanks for stopping by, we appreciate your support. Please sign the guestbook and let's show Jon how much we love him and that he can get through this with God' help.

With much love and prayer,

Karen

Tuesday, August 15, 2006 0:34 AM CDT

Here we go again.... Hey isn't that a Dolly Parton song? It could be Jen's prograf song. Her level came back at 33.0. This is could be a toxic level, so far she is not showing any signs. The transplant team did decide to lower her prograf from 7mg to 5mg and also decreased her steriods from 20mg to 15mg. Let's all say a prayer that her liver stays happy with the lower immunosuppression. Her kidneys, while still within normal range, were starting an upward trend. Hopefully the lower meds will help prevent the upward climb from continuing. Meanwhile, she's been sick with ear/sinus infection, sore throat & cough. She's been strep tested, ear checked x 2, chest x-rayed, put on antibiotic and decongestant. Her ears are much better so's the cough, just left with a sore throat. Lower meds should help her body out with fighting off this viral thing.

I say viral because she so lovingly shared it with Jon and I. Jon's had cough, sore throat, earache....sound familiar? I've had the sinus stuff and now can't hear out of my right ear and I'm not immunosuppressed at all, just plain stressed out. Ha Ha.

Jen will get labs again on Monday. Yes, that's right she is out to labs every 2 weeks, yeah!!! We all travel to Atlanta on Wednesday the 23rd for clinic for Jen and Jon. For Jon, Mark and I(with Jon)will discuss with the transplant team how to proceed with caring for Jon.

I will definitely update after that meeting if not sooner. In the meantime please remember us in your prayers. Also please continue to remember our friends/family who've lost love ones, Haley, Sydney, and Lydia.

May God bless you,

Karen

Wednesday, August 9, 2006 8:24 PM CDT

First I want to thank everyone who’s been so supportive of us lately. It has been very stressful for our family for the last 5 or 6 months. In many ways I feel like we are back to 1992/1993 when we were waiting for both Jen and Jon to be transplanted.

Jen’s Monday labs were good. She was a little on the dry side but her kidneys numbers were still inside the normal limits. Liver numbers are great. She’s had an ear and sinus infection as well as a cough but is finally turning the corner on all that. I was so glad that her labs were ok given that she was sick. God is Good.

The saga of how to proceed with Jon continues. We will be repeating one of his labs before we got to clinic to talk with the doctors about a plan. Right now it looks like our date for clinic is August 23rd. We will be sitting down with all the doctors involved in Jon’s care to discuss a treatment plan. Either way we go there are risks, it’s like a double edge sword. If we treat the infection he could go into rejection. Then if we treat the rejection the infection could get worse. The risk of another transplant in the future is very real. I will give more information and an update after that meeting. Please continue to keep Jon in your prayers, he is starting to get nervous. Please keep Mark and I in prayer that we make the best decision for Jon’s health and have peace of mind with whatever path we decide on.

I also want to thank my sister and nieces for helping out with selling the remaining cookbooks. We are now out of cookbooks. At this point we do not have the money to order more, it would cost between $400 and $500 to order again. Unless we could pre sell at least 40 books at $12 each which would include shipping. Anyone want to try to pre sell for us???

At church tonight our pastor mentioned Proverbs 3:5-6. Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths. I almost cried when I realized how clearly these two verses pertain to what we are going through and how we need to be in prayer for His guidance.

With much love and prayer to all,

Karen

Wenesday, August 2, 2006 10:19PM EST

I hope ya'll don't mind a blanet email/site posting but right now we are overwhelmed at the lastest news & just wanted to let everyone know what's going on and ask for prayer. It's too late to call on the phone. Please feel free to pass this on to anyone you feel might want to know.

Jon's final biopsy results are in and were different from the preliminary. Our hepatologist called this evening. Jon has scarring on his liver. The doctor's recommendation is to treat Jon to see if he can clear the infection. He wants Mark, Jon, & I to come to clinic and talk more to him and the transplant surgeon about treatment options. We are tentatively going to clinic this Wed, Aug 9th.

The treatments are very hard and very expensive. Side effects are hard to tolerate. It will also require Jon to have more frequent labs and checkups. The hope is that the treatment will allow Jon's body to clear the infection and stop further scarring of his liver while hopefully not have rejection set in.

We are stunned at this news. Jon, since transplant in 1993, has always been our rock solid stable child. Please just keep Jon, Jen, Mark and I in your prayers. We know God has a plan & purpose for our lives that will give him the glory. God has blessed us many times over.

Karen and Mark

With today's news about Jon our expenses will mean even more medication, lab and doctor co pays than listed below.

We've had several people inquire on why we need to fund raise since both kids already have been transplanted. By reading the following hopefully it will be clear to understand why the medical expenses are ongoing. Medical expenses will be continuous for the rest of their lives. Their transplants did not "cure" them, we just trade one set of problems for another. But the big difference is that with transplant they have a chance to live, without transplant they would have died.

Even though this has been a tough year we still feel God’s hand in our lives. He has continued to bless us with a challenging but welcome chance at life for Jen & Jon. We feel so blessed to have the support of our church, Spring Place Baptist Church, where we feel the spirit of God’s love surround us.

We are again faced with the need to fund raise for Jen and Jon’s Liver Transplant Fund that is administrated by National Transplant Assistant Fund. Due to Jen’s 3 admissions, over 20 sets of outpatient labs, other diagnostic testing, Jon’s cardiac assessment, 1 admission for a liver biopsy, and now longterm treatment for an infection and 10 medications for both kids we are down to about $100 in their fund. Our insurance year started over on July 1st so all our deductibles, co insurance and co pays for medications begin again. Their deductible, co insurance max, and medication co pays run about $7000 per year(we don't yet know how much Jon's treatment will cost as far as medication go) and that does not include our premiums which run $3300 per year and also does not include travel expenses. Currently travel expenses are quite heavy with Jen needing labs every a week. Each trip costs approximately $50 that includes gas, parking fees and food.

We thank everyone who is considering a donation to Jen and Jon’s transplant fund. Your kind donation will enable Jen and Jon to continue to receive the medical care they need to remain healthy and alive. May God bless you all.

Karen

Tuesday, July 18, 2006 7:34 PM CDT

Jon's biopsy went well today. We expect him to be discharged tomorrow morning. This was Jon's 24th hospital admission. His preliminary results are unchanged from 3 years ago. This is very good. We are still waiting on some special tests but so far everything looks very good.

Jen's prograf on Monday was 31.5. Her dose was reduced to 7mg and labs again in one week. She got good news on her job. She was hired on permanently and got a pay raise. Wal-Mart has been very good about working with her with switching days off for doctor/lab appointments and getting days for admissions. She is a happy happy camper. Now if we could just get her prograf to cooperate.

Well I'm updating from the hospital so I'll close for now.

Karen

Sunday, July 16, 2006 3:07 PM CDT

The following is a general update on both Jen and Jon. This update went out with the last of our fund raising cookbooks. We thank everyone who purchased a copy and supported their transplant fund account. We are again face with the need to fund raise thus this generalized update.

Update on Jen and Jon – July 2006

Jon has continued to do well with his liver function. He did have a cardiac workup earlier this year due to fainting/dizzy episodes thankfully his heart is fine. He gets lab work every 3 months and sees the transplant team every 6 months. He is on 5 medications. Jon will have a liver biopsy on July 18th. He has a liver biopsy every 3 years to check his liver for possible formation of scar tissue. He will be homeschooled in 9th grade this fall. He is 15 now and can’t wait until November when he turns 16 to get his driver’s license.

Jen has had a tough year with 3 hospital admissions since April. After a trial period off steroids she went into rejection of her liver. It’s been very hard to keep her anti rejection medications at the right level for her body to stop trying to reject her liver again. Currently she is on high doses of anti rejection medications so she does not lose this liver to rejection. So far her kidney function has remained normal. With Jen the doctors tread a fine line between suppressing her enough to prevent rejection and yet not compromising her kidneys in the process. There is the very real possibility that she will require a kidney transplant at some point. She is on 5 medications, has lab work 2 to 3 times a week and sees the transplant team monthly. She is working a part time job at Wal-Mart and attends college. Her name should come up on the list to get into the Radiology Technology program in July of 2007. For now she has to remain in college to continue to be eligible for health insurance. For Fall 2006 quarter she is still deciding what classes she will take since she has finished the required medical classes.

Even though this has been a tough year we still feel God’s hand in our lives. He has continued to bless us with good health for Jon and a challenging but welcome chance at life for Jen. We feel so blessed to have the support of our church, Spring Place Baptist Church, where we feel the spirit of God’s love surround us.

We are again faced with the need to fund raise for Jen and Jon’s Liver Transplant Fund that is administrated by National Transplant Assistant Fund. Due to Jen’s 3 admissions, over 20 sets of outpatient labs, other diagnostic testing, Jon’s cardiac assessment, and 10 medications for both kids we are down to about $100 in their fund. Our insurance year started over on July 1st so all our deductibles, co insurance and co pays for medications begin again. Their deductible, co insurance max, and medication co pays run about $7000 per year and that does not include our premiums which run $3300 per year and also does not include travel expenses. Currently travel expenses are quite heavy with Jen needing labs 2 or 3 times a week. Each trip costs approximately $50 that includes gas, parking fees and food.

We thank everyone who is considering a donation to Jen and Jon’s transplant fund. Your kind donation will enable Jen and Jon to continue to receive the medical care they need to remain healthy and alive. May God bless you all.

Karen

Thursday, July 13, 2006 11:19 PM CDT

Hello everyone

Jen had transplant clinic on Wednesday. All her liver numbers except ggtp are normal. The ggtp was 142 which is still high but still dropping. Her kidney function is within normal limits too. We are so blessed for these good numbers. Our only concern is her prograf level. It was 14.5 which is too low for her since she is so soon coming out of rejection. Her dose was increased to 9mg bid and recheck labs on Monday in Atlanta. She is also having pains in her right side so a UA was done, results pending.

Jon and Jen will get labs on Monday. Jon will go to the OR Tuesday around 8:30am for his liver biopsy. He will be admitted afterwards for a 23 observation. We hope to have biopsy results by late Tuesday afternoon or early Wednesday morning before discharge.

We did get to see Aiden and his mom Wednesday. We went to lunch at Sonny's BBQ. Jen and I had never eaten at a Sonny's, we loved it. Thanks Lisa and Aiden for taking us there and it's so easy to find from the hospital too and not expensive either. Aiden looked great and was so very much a joy to be around. I loved hearing him sing along to the CD in the car. He said a beautiful little blessing at lunch.

I had an error in the amount of admissions Jen's had in her life, it's 47. Since Feb 8th of this year Jen has had 3 hospital admissions, 3 IV's, 1 trip to the Emergency Room, 22 outpatient lab draws, 3 urinalysis, 2 new meds added, 21 medication dose changes, 2 ultrasounds with doppler, 1 liver biopsy, 1 dose of 1000mg of IV solumedrol, 2 doses of IV cipro, tests run for CMV & EBV. Her meds are Prograf 9mg bid, Cellcept 1000mg bid, Prednisone 20mg qd, Actigall 600mg bid, Tenormin 25mg qd.

Jon's had 23 admissions in his lifetime, Tuesday's will make 24. He's lab schedule is once every 3 months. He has a liver biopsy every 3 years. He takes 5 meds. Gengraf at 25mg bid, Nexium 40mg qd, Adoxa 100mg qd, Zantac 75mg qd and 25mg Claritin.

We thank each and every one who stops by to check on Jen and Jon. Your support is greatly appreciated.

With much love and prayer,

Karen

Sunday, July 9, 2006 1:19 PM CDT

Jen was discharged late yesterday afternoon. Her prograf level was 27.3. That's high but they want her to run over 20 but under 30. So far(knock on wood and THANK God)her kidneys are tolerating the higher doses. She has labs tomorrow morning. She has starting with diarrhea and it has me worried that her labs will be abnormal and she'll be admitted again. I hope and pray not.

Since Feb 8th of this year Jen has had 3 hospital admissions, 3 IV's, 1 trip to the Emergency Room, 21 outpatient lab draws, 2 urinalysis, 2 new meds added, 20 medication dose changes, 2 ultrasounds with doppler, 1 liver biopsy, 1 dose of 1000mg of IV solumedrol, 2 doses of IV cipro, tests run for CMV & EBV, seen the hepatologist countless times, the transplant surgeon 4 times, had cellulitis, several rejection episodes,and probably other things I can't remember.

Jon's liver biopsy is scheduled for July 18th. He comes back from camp on Sunday & goes for the biopsy on Tuesday. He will stay overnight after the biopsy. At least this week I know he is having fun at transplant camp. If anyone would like to send him a card for when he has his biopsy he would love it. He can be jealous of all the attention Jen "gets". Our mailing address is Lincoln P.O. Box 1948, Chatsworth, GA 30705.

Please keep Jen in your prayers for labs to be ok tomorrow. Specifically her kidneys to still be tolerating the medications. Also remember our liver friend Aiden as he is having labs and clinic this week. We hope to see them at clinic and have lunch with them. It will be nice to see them outside the hospital doing something as normal as just friends having lunch together. ALso continue to remember Haley, Sydney and Lydia's families as they are still very much morning the loss of their daughters. I hope and pray that their families can take comfort in knowing their daughters are in Jesus's hands.

With much love and prayer for all,

Karen

Monday, July 10th update

Jen's ggtp continues to trend down nicely and the other liver numbers are normal. Her kidney numbers went up some but are still within(barely)normal limits. Keep praying for her kidney function to remain normal. Her prograf was 25.5. She is getting labs again Wednesday and will be seen in Transplant clinic too.

Friday, July 7, 2006 1:22 PM CDT

Hey all

Jen's liver numbers are all within normal limits except for ggtp. It went from 220 yesterday to 206 today, still a downward trend. Her prograf is 23.6 and that's in the low twenties so that's good. If her prograf is ok tomorrow we'll bust outta here! Praise God her kidney are tolerating all this prograf ok.

We've got to get home, I've got to get Jon ready for transplant camp on Sunday. We've still got to shop for stuff and pack him up too.

Thanks to everyone who's signed the guestbook. Jen and I have enjoying reading and laughing at some of the things you guys have written. Keep it coming.

Please continue to remember Aiden in your prayers, he's coming to visit the docs next week. And as always remember the families of Haley, Sydney and Lydia.

With much love and prayer for all,

Karen and Jen

Thursday, July 6, 2006 2:52 PM CDT

Thursday pm update: The docs came by they want to keep Jen until her prograf level is in the lower 20's and ggtp is closer to normal. The surgeon said he didn't want to lose this liver to rejection. Jen made him work too hard to put this liver in. So we are here at least another two days.

Jen's numbers continue to get better. Her ggtp is down in the two hundred's. The surgeon said he would keep Jen inpatient until her ggtp dropped closer to normal levels and her prograf got to the low 20's for 2 days. So we are here for at least two more days. Her prograf today was 26.7 so still too high.

Please continue to keep Aiden, Haley, Sydney and Lydia's parents in prayers. Aiden for his labs to improve. And please sign the guestbook. Jen and I would like to see how's been by,especially since we are BORED to death.

With much love and prayer to all,

Karen and Jen

Thursday, July 6, 2006 2:52 PM CDT

Wednesday, July 5, 2006 1:17 PM CDT

Jen liver numbers are even better today. One is normal, another almost there and ggtp is trending down nicely. Her prograf level went up more(not good)from 23 to 28.9. So her dose was decreased from 8mg bid to 7mg bid and we wait and see what the dose change does for the level tomorrow. Right now we are just waiting on the prograf level to behave itself.

We are SO bored. If anyone is in the Atlanta area we'd love a visit. Or any ideas of something to do.

Please keep Aiden, Haley, Sydney and Lydia's parents in prayers. Aiden for his labs to improve. And please sign the guestbook. Jen and I would like to see how's been by,especially since we are BORED to death.

With much love and prayer to all,

Karen and Jen

Tuesday, July 4, 2006 10:10 AM CDT

Hey everyone

HAPPY FOURTH OF JULY. We will be enjoying the fireworks in Atlanta but by TV. Good news is that Jen's numbers are better today. Her liver numbers are coming down and renal numbers remain stable and normal. We did increase her prograf dose back up to 8mg bid but no other changes. We don't have her prograf level yet.

Now we just wait and see. I kinda expect that if her numbers tomorrow are still trending down that she MAY be discharged. Maybe...

Thanks for stopping by.

Karen

Monday, July 3, 2006 8:40 PM CDT

Here we go again!

Jen was admitted today. Her liver numbers are elevated. Her ggtp went from 56 to 464 in one week. Her prograf level will be monitored. Another medication maybe added that makes the body absorb prograf. It's not meant to do that it's just a side effect, but it may be want Jen needs.

I just hope she doesn't need a solumedrol(huge IV dose of steriods)bolus. She made the comment to the hepatologist that she has a healthy immune system and he said "frankly, you are right. It's right there at the gate waiting." We hope to avoid another liver biopsy too.

Please keep Jen in your prayers, she was shocked at being admitted and so was I. We did not see this one coming.

Thursday, June 29, 2006 2:40 PM CDT

Jen's labs from Monday are finally back. Her liver function tests and renal tests are all great, all within normal limits. The only things not good was her prograf level. It was 38.6 which is extremely high, can be toxic. Her dose was reduced from 8mg bid to 6mg bid and she's to get labs in Atlanta on Monday and we are to wait on the results before coming home.

The biggest concern with the high level is her kidneys. Usually when the prograf goes over 20 her creatinine is elevated. The team did say it may take a few days for the creatinine to go up. She did have some tremoring in her hands last night. Her bp is also good. We'll watch and see. I feel like we are on a roller coaster ride and I WANT OFF! One of our liver mom friends said "who sent us ticket to this amusement park!" Ha Ha Ha

Thank you all for stopping by to check on Jen and Jon. Please sign the guestbook so we'll know it was you.

With much love and prayers for all, especially the families of Haley, Sydney and Lydia,

Karen

Thursday, June 22, 2006 0:00 AM CDT

Jen had a transplant clinic visit today. Labs from Monday were great. All in normal range except for ggtp which is still trending down. It takes the longest to come all the way down to normal.

Her prograf absorption is still weird. Her level last week was 9.9 on 8mg and this week 6.4 on the same 8mg dosing. She will remain on 8mg. The concern is that if we go up on the dose that when she starts absorbing better her level will go way to high and her kidneys will not tolerate it well. She for now she remains on 8mg bid prograf, 1000mg bid of cellcept, 30mg of prednisone and 25mg of tenormin. We have noticed that her bp is staying in the range of 130-140 over 70-80. This is higher than she normally runs but probably due to either the prograf or steriods or both. Her glucose is staying normal with her on the no concentrated sweets diet, plus she's slowly losing weight too. She will remain on a weekly lab schedule indefinitely and monthly transplant clinic schedule while the steriod dose is high.

Please remember to keep our liver friend Aiden in your prayers as well as Haley, Sydney and Lydia's families.

May God bless you all,

Karen

Wednesday, June 14, 2006 9:27 AM CDT

Jen is home. She was released late yesterday afternoon. Ultrasound was negative for DVT's(clots). Diagnosis was cellulitis. She had two IV dose of Cipro and will be on oral Cipro for 10 days at home. She will be on at least weekly labs for a good while now.

The thought is that the cellulitis developed because of an injury/infection(unknown when it happened), but as a result of maximum immunosuppression. She is on max immunosuppression because of the recent rejection episode. The docs did go down on her steriods from 40mg to 30mg a day. But she stays on a weekly lab draw to make sure her body tolerates this. We pray it does and are feel very blessed for the 10mg per day decrease.

This admission was her 42nd admission in her life and the shortest. See, there are always blessing in every situation. God is so Good. She did miss two more days of work. I not sure how her 90 day review will go that comes up in one month. We pray that it's God's will that she keeps this job.

I would really appreciate prayers for Jen for her school work. She really let her work get behind with the two admissions and numerous days out for lab work. She has until tomorrow at 10am to make up all work. I am afraid she will wind up with 2 F's and really be penalized academically and with financial aid.

This business of the adult side of being a liver recipient is hard. School, work, medical care, I don't know how recipient who's family are not well off do it. But I will keep remembering that she is home and weekly lab draws are good, admissions not so good. God is good, she is home.

We are getting Jon's liver biopsy scheduled in July, most likely July 18th(my sister's birthday-Happy Birthday Pat).
This is a regularly scheduled thing for Jon. He is biopised every 3 years to check for any scarring in his liver that will necessitate treatment. So far he has no significant scarring. God is indeed Good.

Please continue to remember our friend Aiden in your prayers. He is home from a recent admission. And as always the families of Haley, Sydney and Lydia as they morning the loss of their daughters.

With a grateful heart,

Karen

Monday, June 12, 2006 2:25 PM CDT

Monday afternoon update

We are packing for Jen to be admitted to Children's Healthcare of Atlanta(CHOA). She may have phlebitis. She'll be admitted for antibiotics, possible ultrasound or CT. Will update more later. Please keep Jen in your prayers, we were not expecting this.

Karen

Monday, June 5, 2006 9:02 AM CDT

Just thinking and worrying out loud this morning.

I am afraid. I don’t know exactly why. Jen’s recent rejection episode has left me afraid for her life expectancy. It’s like I feel this is not over yet. Her bili on Friday was 1.1 and her ast and alt were up by one point each. The ast and alt being up one point in not really significant especially since they are both still in normal range. But we’ve been fighting this rejection since March 8th when she came off the steroids. It’s almost been 3 months. I guess it’s the length of time that’s worrying me. It’s never taken her this long after rejection to get all numbers back down to normal. Her ggtp is still over 100, it’s on a downward trend but the trend has slowed down. I’m very nervous about where her numbers will be this week. She is down to a weekly lab draw but we can’t do labs locally on Friday because they are a send out. We can’t do labs today(Monday) or Wednesday because she has class. If done on Thursday the prograf won’t be back until the next Monday. And her prograf level was low on Friday so her dose was increased from 5mg bid to 6mg bid so we really need the prograf level back the same day or next day. So it looks like our options are doing labs on Tuesday locally or wait until Friday and drive down to Atlanta where they can all be done the same day.

Plus there’s the fact that I was told that this rejection episode really got the transplant surgeon’s attention. He dramatically increased Jen’s immunosuppression to save her graft(liver). He does not want to EVER have to operate on her again. When he transplanted her in 2002 I remember him coming out afterwards and talking to Mark and me. He said she was among his top 30f his most technically difficult cases ever. Why does this statement keep replaying in my brain like a stuck record. She has so much scar tissue from being opened up twice for liver transplants, another time to redo the connection of the inferior vena cava, and then a huge incision on the right side of her back(rib was removed that’s how big an area it was) to try to get rid of a massive abscess that had developed and stayed around for months after her first transplant. Jen’s also has scar tissue from repeatedly place drains, g-tube/gj-tubes placements and then the g/gj tract had to be surgically closed because it kept leaking. And 3 jp drains after the first transplant and one after the second.

So far her renal function seems to be holding up. Another statement stuck in my brain was also made by the surgeon, if her renal numbers don’t go down and stay down she could be facing a kidney transplant by the time she’s 30. So I keep expecting her bun and creatinine to rise and if it does I’m afraid she’s going into chronic renal failure and will need listing for a kidney transplant. I’m also afraid of her getting exposed to something as simple as a common virus and her getting really sick and even septic as immunosuppressed as she is now. She’s survived septic shock before but would she again? Would her kidneys?

Do I feel guilty that I have put off my son’s liver biopsy and special labs that were due last month? Yes. Am I putting my son’s life at risk while I watch and wait for Jen’s body to stop trying to rid itself of her second precious gift of life. I don’t know, I pray not.

Is part of all this worrying due to knowing that sometime this month we will hit the max out of pocket for Jen’s co-insurance about the same time we run out of funds in Jen and Jon’s account with NTAF(National Transplant Assistance Fund). On July 1st we start all over again with the co-insurance for the year(runs July 06-June 07). Then we’ll be trying to figure out how to squeeze $6000 from our budget for this year. That’s $500 a month if it was divided evenly over the year. Mark works so very hard to provide for our family and we are working diligently to pay off all our debts so that money can go towards meeting the kid’s medical expenses. It will be another 11 months before we get to that point. So in the meantime we pray. Maybe Mark will get a pay raise, maybe we’ll sell more cookbooks, maybe I’ll finish school and can find a part time job that will still enable me to home school Jon, and maybe we’ll have success in getting more funds raised for their NTAF account.

Do I feel this way because a little boy we know who had a liver transplant 9 days before Jen’s second transplant is experiencing complications right now? Probably. I love this little boy as if he were my own son. His mother is special friend who in her own struggles helps me remember my faith. Do I feel this way because Haley(another liver friend)died from liver disease 8 months ago? Yes. I want to remember and honor Haley’s life but I don’t want to know exactly how her mom felt/feels to lose a child. I want to be selfish. I want my kids to survive.

I’ve dealt with liver disease for 20 years, 13 of those years post transplant. Do I feel this way because I am mentally, physically, emotionally and spiritually exhausted? Yes. I find myself searching in the Bible for strength to continue.

Am I over reacting, most likely, but what if my mother’s intuition is right?

Friday, June 2, 2006 6:37 PM CDT

June 2nd update

Jen's ast and alt are still within normal limits, but went up by one point each. The worry wart in me is saying what! But I have to remember it's still normal. Her ggtp continues to slowly go down. Her bili is up to 1.1 but she sometimes runs this level. Her creatinine and bun are good at 14 and 1.0.

Really the only thing of concern is her prograf level. It dropped down to 8.7 on 5mg bid dosing. The team wants her to run between 15 and 20 since she's coming off a moderate rejection episode. So she's been bumped up to 6mg bid dosing. BUT she gets to wait a whole week before getting labs again!!! It's been 8 weeks of labs 2 to 3 times a week. Her poor veins get a much needed break, today's labs took a warming pad, spray gel and two sticks to get.

We just want to thank everyone for the support over the last 8 weeks. You guys are great. Please remember our friend Aiden. He is inpatient and needs prayers for the docs to figure out what's going on with him and fix it.

Tuesday, May 30, 2006 9:06 PM CDT

What a day this has been. From fine and dandy this morning to an ER visit this evening. All of Jen's liver numbers but one was down to normal range with this mornings labs. Her kidney numbers were also normal.

We visited with our liver friend Aiden who's an inpatient now. He is such a lovable, amusing little boy, ALL boy. Please keep him in your prayers that the docs can figure out what's going on in his little body and get him on the road to recovery and back home in Florida with his baby brother.

Jen went to work at 3pm. At 6:30 the store manager called me to come get her. She was having trouble walking, really extreme back pain, nauseaous and shaking, dizziness etc. I checked her bp at home and it was fine. We called our transplant team and were advised to get a urinalysis. It was our choice whether we got done at a local ER or drove to Atlanta to Egleston ER. We chose local. We'd never used the Murray County hospital. We were quite surprised. Jen was triaged, put in a room, urine checked, saw the doctor and given meds, scripts and out of there in about an hour. Wow, speedy service with a smile too. Her urine was negative for infection and positive for sugar 2+. It was thought that it's a musculoskeletel issue. She was given meds to relax the muscles. Her knees also are bothering her now. She has had joint pain issues before, I hope this goes away soon.

Her prograf level today was 17 and she was to go to labs once a week but with tonight's issues she'll get labs again on Friday in Atlanta and we'll go from there.

Thanks for stopping by and checking on Jen. Please remember Aiden, Haley's family, Sydney's family and Lydia's family in your prayers.

May God bless you all,

Karen

Saturday, May 27, 2006 8:08 PM CDT

Hi

Jen's liver labs yesterday were better. Her ast and alt are now within normal limits. Her ggtp came down another 80 points, still a ways to go for normal but it's always the last number to normalize. Her kidney are ok for now. Her creatinine is up to 1.1 which is still normal but barely for our lab range. She is now starting to absorb the prograf. Her level yesterday was 28.9, yikes! So her dose was decreased to 5mg bid. Her cellcept and prednisone dose remains at the higher doses for the time being.

We were told that Jen really scared the transplant surgeon with this recent rejection episode. That's why he so dramatically increased her prograf and steriod doses and added cellcept back and increased it dramatically also. His thought was do that so we can save the graft(liver)and avoid another transplant. He does not want to have to ever operate on her again, she has a tremendous amount of scar tissue from 4 major abdominal surgeries including two liver transplants. Her chances of having complications would be extremely high thus reducing chance of survival. This is not even considering her kidneys, which would likely NOT make it through another major surgery without shutting down permanently. We don't even want to think about a kidney and liver transplant.

She is having side effects from all the increased doses and more meds have been added to help. I feel like we are either at Egleston getting labs or the drug store getting meds. Her mood swings due to the increased steriods are something else. But we are greatful, for by the grace of God, Jen is still able to be at home, going to school, work, and church.

Thanks for stopping by. Please remember our friend Aiden, he is going thru a rough patch now. And remember Haley, Sydney and Lydia's families as they miss their daughters.

With much love and prayers for all,

Karen

Tuesday, May 23, 2006 5:12 PM CDT

Hello everyone

We are doing the happy liver/kidney dance here. Jen's labs were much better today. Her ast was 27(normal range!), alt 74(almost there), ggtp 241(ways to go but coming down). Her kidney were happy with a bun of 24(getting a little high,drink Jen drink), and creatinine of 0.9(normal).

Her prograf dose was reduced from 9mg bid to 7mg bid. Her prograf level was 24. The transplant team wants to keep her on the 40mg of prednisone for the time being since she is such an aggressive rejector. Prednisone is a tough drug with the side effects but it works such miracles with helping to turn around rejection.

All in all, Jen seems to be doing much better. She gets labs again Friday and if everything is still headed in the right direction then she'll go to once a week labs.

She did have to drop her Algebra class. It's hard to miss lecture in a Math class and still pass. I'm nervous about her job tho. She's missed 3 shifts while admitted, had to change another shift to accomodate lab scheduling, and because of the increased prednisone dose upsetting her stomach had to come home early three times. She is still under her 90 days so we'll see. Hopefully if she not out any more Wal-Mart will look favorably on keeping her on. So far they have been so good.

Thank you all for checking in on Jen. Please keep our friends/family of Haley, Sydney and Lydia in your prayers.

With much love and prayer,

Karen

Wednesday, May 17, 2006 4:20 PM CDT

I apologize for not updating yesterday, I came home and collapsed on the couch, too many late sleepless nights lately.

Jen was not admitted or biopised yesterday. The transplant surgeon decided he'd rather wait and see if ANOTHER med increase would help. He wants to avoid another bolus of solumedrol if possible.

So now she is on mega doses of everything. When all this started she was on 2mg bid of prograf, now 9mg bid! Her prednisone from 2.5mg now up to 40mg. And cellcept was added back during the last admission in April at 250mg bid now up to 1000mg bid.

Good news is that her numbers were down some yesterday. She'll get labs again Friday in Atlanta and we have to wait for results before leaving. Hopefully the downward numbers from yesterday is indeed a downward trend. Her prograf level from Sunday eve was up to 17 so that's good, didn't get one yesterday because we were not told to hold meds. Surprisingly with the prograf level being up K and P are happier. Her bun and creatinine were 17 and 0.8, very good for her, actually normal levels.

So we are home and praying she does not come in contact with anyone sick and that labs are ok on Friday. Thank you all so much for stopping by your checking on Jen mean a lot to us during this prolonged numbers chase game.
__________________
Karen - recipient of bone tissue(1981) and mom of

Jen - liver transplants 1993(Dallas) & 2002(Atlanta)
Hypertension, Hearing loss, Scoliosis, Cataracts

Jon - liver transplant 1993(Dallas)

Tuesday, May 16, 2006 6:11 AM CDT

Jen - SAM's not happy & K and P are starting to complain!

Well CRAP! Sorry for the language but that's how I feel. We are waiting for our coordinator to call back with a plan. Jen's numbers last Wednesday were coming down and she got to go to Sunday eve for labs. Well, the numbers were not good.

Ast 200's, alt 400's, ggtp 500's, creatinine 1.2. I don't remember the rest after she said 400 something for alt. Her prograf is finally up, up to 17.2. But why would her lft's be even worse??? The coordinator wasn't sure they'd do a biopsy or what. Jen's her number one priority today. That's not what you what to hear your coordinator say!

Jen and I did go talk to the instructional advisor at school. His advice was for her to get Dr's notes for all dates so they can back date her withdrawal for Math. And work closely with English and Psychology teachers, maybe get a Incomplete and finsh up by 1st of July. Our quarter ends here 17 June. She is also worried about losing her job at Wal-Mart. She is still under her first 90 days, and Georgia is not a right to work state. (They can fire for just about any reason within the first 90 days).

Well I gotta go do my homework. Good thing my class only meets once a week, tonight.

I guess this is life of an "adult" recipient always balancing everything.

MONDAY afternoon update: Jen will be admitted tomorrow and biopised around 1:15pm. Most likely solumedrol tomorrow night too.

*SAM is Jen's liver - Stay Alive Mister and K & P are her kidneys - Keep Peeing*

Thanks for stopping by. Please remember our liver friend Aiden as he is undergoing tests this week, hopefully his doctors will figure out what's going on with him and fix it. And please remember Haley, Sydney and Lydia's family in your prayer. Their daughters are very much missed by their families and friends.

With much love and prayer,

Karen

Wednesday, May 10, 2006 9:07 PM CDT

Jen's liver numbers are "stuck." At least they are not going up. Her prograf dose will remain at a whopping 8mg bid. The team doesn't want to increase the dose even tho the level only moved from 3.4 to 4.3 because of her kidneys. Right now the kidneys are fine. But when the prograf level "catch up" to the dose I'm afraid the level will shoot thru the roof and the kidneys may not tolerate it. I'm always afraid her kidney function will elevate and not come back down and then she'll go into renal failure that can't be turned around.

We are glad to be home and not back inpatient. We will drive down to Atlanta Sunday evening to get blood drawn and the prograf level will be run Monday. This way Jen can to to her Monday/Wednesday class, she's missed 5 days this quarter in these two classes.

She is loving working at Wal-Mart. She enjoys talking with customers and seeing what they buy. She is getting to know everything the store sells. She's working 30-32 hours a week.

Thank you all for stopping by to check on Jen. Please let her a note in the guest book so she'll know who stoppped by. Jon, by the way, is doing well.

With much love and prayer for all,

Karen

Friday, May 5, 2006 4:29 PM CDT

- NEW PICTURES IN PHOTO ALBUM -

Monday, May 8 update: Some numbers are up, some are down. Prograf level is under 4 even with the increase dose. As of Monday she will go to 8mg bid prograf and stay on 20mg prednisone, labs again in Atlanta on Wednesday. Again we are hoping to avoid an admission to treat rejection with IV steriods.

BACK TO FRIDAY UPDATE
Jen's numbers -Here we go again????

Jen's on a MWF lab scedule since discharge last week. Her ast has gone from discharge of 47, Mon 26, Wed 48, Today 78; alt 97, Mon 45, Wed 48, Today 85; ggtp 414, Mon 314, Wed 253, Today 275. In patient her prograf level was running 24 to 17, Monday we couldn't get a level, Wed(just got results back today) was 5. With it being 5 it's probably why her numbers are back up but why........ We've just way more of an issue with prograf staying level than we ever did cyclosporine. Even tho she's on the pills, I even threw away the bottle we were using just in case we had a bad bottle.

I just feel like I'm at the end of my rope this time. 20 years of health issues, 13 post transplant with two kids. I even broked down on the phone this afternoon with with Dr R who's eveyone favorite doc. Thank God for him. There is a admin assist I'd like to take apart tho. As I was throwing out the prograf I took several pills apart as I said this is "....."'s head and I'm squishing it! Stress relief, ok, now that you all know I totally psyco I'll close for now.

Oh yes, Dr R did say to up prograf to 4mg bid and prednisone to 20mg for the weekend and get labs Monday in Atlanta. Yes Lisa he will order them STAT and we'll wait for results. If still elevated they'll keep her. Not sure if he met admit or RM house.

Prayers, thoughts, crossed toes, fingers eyes, etc. would greately be appreciated. Ill close with the following verse

Ephesians 6:16 - Above all, taking the shield of faith, wherewith ye shall be able to quench all the fiery darts of the wicked.

This verse reminds me of our church's childrens'Christmas play when they were "putting on the armour of God" to shield satan's fiery darts. Thank you to my friend Lisa who always knows what verse is appropriate and reminds me to turn to the Bible and to God.
__________________

Tuesday, May 2, 2006 4:24 PM CDT

Hi

I don't have all Jen's numbers but the ones I do have are ast 26, alt 45, ggtp 314 and bili 1.3. The first three are still coming down, wonderful news. The bili is up. Jen and I both thought her eyes looked a little yellow/off color today.

She's feeling fine. Back to school and already caught up with the work she missed last week due to being admitted. She's working 30-32 hours a week, going to school full time and that makes it hard to get labs done.

I won't bore you all with the local hospital drama yesterday(Monday) with trying to get labs done there. We wound up getting blood drawn at our local doctor's office and because it's sent out not getting results until today. And it was too late to run a prograf level.

Tomorrow we will try the local hospital again. We have current lab orders filled out their way, so hopefully we'll not have an issue getting them done in the am. If done there we'll get all results except prograf back the same day. We'll have to see what's going on with the bili.

Please keep Jen in your prayers, I just have this gut feeling her health issues are not quite really resolved yet.

We are putting Jon's biopsy off until after Jen and I finished this quarter in school. Neither she not I can afford to miss any more days if we can help it. Jon's biopsy is elective so we can do it in June. He is so ready for school to be out for the summer. Me too!!! Although I will have a class during the summer, but Jen won't.

This last admission was very hard for me. I don't mean to whine but I guess 20 years of doctors, hospitals, liver disease, bleeds, liver transplants etc are finally getting to me. It gets harder and harder each time the kids go back in the hospital. I am thinking of trying to get Jon's biopsy scheduled on a Thursday so Mark can be off and stay overnight with us. Jon usually stays over night.

Please keep our friend Aiden in your prayers as well as Haley's, Sydney's and Lydia's families in your prayers.

I want to leave you with something that helps me keep going and thanking God for my life, even with the trials and tribuluations.

Because He lives, I can face tomorrow
Because He lives, all fear is gone
Because I know He holds the future
Life is worth the living, just because He lives.

With much love and prayer,

Karen

Thursday, April 27, 2006 7:08 PM CDT

JEN IS HOME!!! She was released today at 11am and at work by 2pm.

She is now on a 3 times a week lab schedule. Her medications are now: Prograf 3mg bid, Prednisone 10mg daily, Cellcept 250mg bid, and 25mg Tenormin. She will remain on the increased steriod(prednisone)dose for at least 3 months.

The liver biopsy showed moderate rejection. She had a solumedrol bolus Monday night(1000mg). Cellcept was added also to prevent rejection and also in case her kidneys don't like the increased dose of Prograf. So far her kidney function is remaining within normal range.

This was a difficult admission. It was like all the memories from her two transplant admissions came back in my mind. And I always worry with a rejection episode if it can be reversed. This was Jen's 41st hospital admission of her life and she's only 20 years old.

It's difficult to be admitted when she's in college, but this time her teachers emailed assignments so when she goes back to class next weeks she'll have her assignments done and can make up tests too.

With her working at Wal-Mart she was eligible for medical leave from the first day. She had only worked 3 days when she got sick. Thank God she only missed 3 days and we didn't have to do the medical leave paperwork. It's good to know that it's available if she needs it in the future. It's unpaid, but it keeps her job for her.

It was difficult for me to miss class too. My class only meets once a week so I only missed one class but we have a test this Monday and I wasn't there for lecture, prayers here would be appreciated.

Jon also missed us. He was good about trying to get his school work done on his own. But we did get behind a little. We'll try to catch up by next weekend.

Please keep Jen in your prayers as she recovers from this rejection episode. Also please remember Haley, Sydney and Lydia's family in your prayers too.

With much love and prayers,

Karen

Tuesday, April 25, 2006 1:30 PM CDT

I have not had computer access since Sunday am until now. Jen was admitted Sunday afternoon to CHOA. Her liver numbers were up, ggtp 275.

She was noticeably yellow yesterday am and her bili was up to 4.9. All number were up, ggtp 616!

She had a steriod bolus last night which has brought her numbers down some. We hope it is a trend. If her numbers are up tomorrow or the same as today, she will get another steriod bolus. She was biopsied yesterday and it showed moderate rejection.

She will never be able to come completely off steriods. We are adding cellcept back so we don't have to keep her prograf level so high that it adversly effects her kidneys.

Will update more as I can.

With much love and prayers,

Karen

Friday, April 21, 2006 7:26 PM CDT

Hey all

The downward trend in Jen's liver numbers has stopped. Jen's numbers are worse. She's been upped on her prograf dose and the steriod dose stays at the increase dose of 10mg daily. She started having heachaches and feels bad last night and the headaches are worse today. Now(8pm) she is running a fever. All these signs can be from rejection and/or a virus. The headaches maybe from the steriods too.

She's back on a weekly lab schedule. Our team PA said she has a 50% chance of turning this(if rejection) around without an admission and huge IV doses of steriods.

Satan sure knows how and when to strike. Jen just started a new job at Wal-Mart and this quarters classes on April 4th. So timing would be bad for an admission, not to mention concern over whether or not rejection can be turned around.

Your thoughts and prayers would be greatly appreciated at this time.

With love and prayers to you all,

Karen

Friday, April 14, 2006 3:46 PM CDT

Jen's labs are better, not all within normal range but better. Her ggtp is down from 177 to 95, she normally runs in the 20's. But we are relieved they are down. This means she avoids an admission and liver biopsy with meaga steriods dosage. She is still on 10mg daily of prednisone but we'll wait until her number are completely down to normal before starting to wean her back down to 2.5mg daily where she started.

Mark, Jon and Jen are in Bruswick this weekend visiting Grandpa. I didn't think I could tolerate the 7+hour ride this soon after my surgery. So I'm just taking it easy in my VERY quite house.

Please remember Haley, Sydney, Aiden in your prayers.

With much love and prayers,

Karen

Friday, April 7, 2006 4:38 PM CDT

My surgery was yesterday. It well very well. I am sore as heck. I've been laying around and my family has done a wonderful job of waiting on me hand and foot. It sure felt strange to be the patient yesterday. It took two sticks to get an IV in me too. Made me realize that getting an IV in one stick is not to be taken for granted. I loved the nurse, she used lidocaine. Like I said, I'am sore but ok. I just hope I can walk standing straight up by church Sunday and class Monday night.

Well, Jen had labs yesterday. Today we found out her Alt and Ast are 55 and 22. Normally they run in the teens or twenties so 55 while it is still in the normal range is a little more than double for her. I keep waiting on the phone to ring when the news to start the prednisone back again. If I don't hear from the docs by Monday am I will call them. I'm not sure I'm comfortable waiting two more weeks for labs now. Maybe weekly....

We are homeschooling Jon again. We ordered and already received his curriculum from Landmark Baptist Curriculum. He has been on Spring break this week, but wanted to do some work on Tuesday so I let him. He chose Math and Science and made a 100 and a 90. He really just needs the one on one attention and no distractions from classmates.

Spring is springing here. The trees leaves are so green, the flowers are blooming, and pollen is in the air. It's beautiful and always reminds me that Easter is near. It's a very emotional time of year for me. I just think about how Jesus suffured so much pain for me and you. We are having the Lord Supper's in church Sunday and I know I'll be tearing up and feel good at the same time.

I had such a comfort about my surgery. After my surgeon pre-oped with me on Wednesday he asked if he could pray with and for me. I've only known one other doctor that asked about praying with me/Mark.

Please remember our friend Aiden in your prayers, he has so many life threatening allergies. His mom amazes me with her strength to cope with it all. Please remember her in prayer too. And as always remember Haley's family as well as my brother Jimmy and his wife Debbie and they have their first Easter without their daughters.

May God bless you all,

Karen

Tuesday, March 28, 2006 9:44 PM CST

So far so good on d/c'ing steriods for Jen. Her liver numbers were great and so were her kidney numbers. She has labs in two weeks again.

Jon wore a holter moniter for 24 hours to make sure he does not have any abnormal heart rhythms. The cardiologist thinks it may just be that Jon is not staying "tanked up." This is what I thought last summer when the dizzy spells started. So far all tests are normal.

We are once again at a cross road with Jon's education. He is not doing well in public school. Lots of distractions and 29-31 students per class doesn't help either. Please be in prayer that the Lord will lead us to what's best for Jon.

My surgery has been rescheduled for April 6th. I am ready to get it over with. It will be weird to be the patient instead of the caregiver.

As always please remember our liver friend Haley's family, my brother & his wife, and my cousin's family as they morn the losses of their daughters. And our friend Aiden's grandfather as he faces health issues too.

With much love and prayer to all,

Karen

Sunday, March 12, 2006 7:58 AM CST

TODAY IS JON'S 13TH LIVER TRANSPLANT ANNIVERSARY!!!

Today Jon is 13 years out from transplant! He went from 27 months old and weighing 25 pounds to 5' 6'' and 133 pounds. He did so well. He was extubated on post op day one and moved to the floor on day two. He really just breezed right thru it all.

His latest labs were great. We hope and expect his biopsy in June will still show no scarring. We will celebrate as a family today. Please join me in wishing him a happy 13th anniversary.

Also please remember Haley, Syndey, Brooke and Lydia's families as they morn the loss of their daughters.

For an update on Jen and Jon's health see the journal history.

With much love and prayers.

Karen

Thursday, March 9, 2006 3:48 PM CST

FRIDAY March 10 UPDATE:

Labs for both kids were great. Jen's ast was 14, alt 13, ggtp 21, bili .7, creatinine 1.0(yeah) and platlets were 204, she never goes over 200 so these is great.

Jon ast was 26, alt 27(really good for him), ggtp 33, bili .6, creatinine 1.0, and platlets 216.

We are doing the happy liver and kidney dance in our house. Jen will stop the steriods and get labs in two labs to see if she tolerates the wean.

BACK TO THURSDAY UPDATE:

We had a whorl wind day yesterday. Both kids had labs at 8:45am. Jon had an EKG and Echocardiogram at 11:00 but we don't have results yet. We saw the GI at 11:30 for an hour. Our GI does want a cardiologist to evaluate Jon just to make sure he does not have an arhythmia. The bump on his head is normal, we all have them some bigger than others. Our GI has one too. Boy was I relieved then.

Jon will have a liver biopsy in June and hopefully there will not be any scarring. We don't have lab results yet as with our new insurance it is a send out source who runs the labs. I hope to have them by tomorrow at the latest. The Doctor did say that Jon seems to be immune tolerate. His cyclo dose and level have been very low. But his liver function is entirely normal so they are not going to up the cyclo dose.

With Jen we talked about weight issues. The GI was willing to try a trial off prednisone with labs every 2 weeks for 2 months to make sure she tolerates the steriod wean. But we have to wait to see if the transplant surgeon goes along with this plan, he was doing two transplants yesterday. And we are waiting on her labs too. I am hoping that her creatinine is ok. Last month it was 1.2 which is the highest normal level. I just keep remembering the surgeon saying last year that if we couldn't keep her renal functions within normal limits she could be facing a kidney transplant by the time she is 30.

I will update more when labs are in and after Jon's cardio results are in too. Thanks for stopping by. Please remember Haley, Syndey, Lydia, and Brooke's family in your prayers as they morn the loss of these beatiful girls.

With much love and prayers, Karen

Friday, March 3, 2006 3:38 PM CST

TUESDAY EVENING: We will be seeing doctors, doing labs, EKG, Echocardiogram and seeing the transplant team all day tomorrow. Please keep Jon in your prayers that he gets a good report. And Jen's kidneys too. I will try to update Wednesday nite.

I thought I would post an update on Jon. He has been having dizzy spells for a while now. Back during the summer I thought he was dehydrated. It slacked off for a while but lately he is having them daily. A week ago he actually passed out and hit his chest and mouth on the dining room table. He was ok but it scared him badly.

He is scheduled for an EKG and echocardiogram this coming Wednesday at Egleston in Atlanta. He will see the GI on the transplant team and he will assess whether or not further testing is needed. Hopefully this is nothing serious. A lot of the time dizzy spells have no explanation.

One thing that is worring me is the bump on the back of his head. It's hard and does not move. It's in the same area that he's had a lymph node enlarged several years back and the local doc xrayed it. It was nothing. But this is bigger and does not move at all. Maybe he just has a bumpy head???

My mommy instinct is on high alert. Prayers would be appreciated that all is well with Jon. He and Jen both will get labs also on Wednesday.

Our schedule is:
8:30 - labs(both kids)
10:00 - Jon - EKG and echocardiogram
11:00 - Jon and Jen - See Dr R.
1:00 - Transplant clinic(both kids)

It will be a full day and hopefully nothing will be found to indicate that Jon needs further testing and we will be back home in time for church.

Speaking of church, our church, Spring Place Baptist Church, did another love offering for Jen and Jon's medical expenses. We are very humbled by the support of our church. Spring Place is truly filled with people who are filled with Christian spirit. May God bless Spring Place Baptist Church.

I do have some bad news. My cousin Ernie(lives in Cordele)lost his 3 year old grandaughter named Lydia last night in a car accident in Virginia. Please keep this family in your prayers.

It seems like death is all around. We've known 4 people who've died since Oct 1st. Three of them kids. Please remember Haley(11 yrs old)liver friend who passed away Oct 1st), Sydney(6 yrs old)niece who passed away Oct 15th), Bobby Nipper(uncle who passed away Dec), and now Little Lydia(3 yrs old)who died last night.

With much love and prayers for all,

Karen

Monday, February 20, 2006 12:19 AM CST

Hello all

HAPPY BIRTHDAY TO JEN!

Jen is 20 years old today. It has been a wild ride these last 20 years. From being jaundiced at 2-3 days old to evaluated at 4 wks and diagnosed by 6 months old as eventually needing a liver transplant.

She has been through numerous blood draws, liver tests, x-rays, surgeries, biopies, tracheostomy, CMV hepatitis and pneumonia, preservation injury, at least 5 rejection episodes, many many scopes, acute kidney failure requiring short term dialysis(twice)and 2 liver transplants.

But through all this she still keeps smiling and going. She hopes to finish college in 2 1/2 years and being a radiololgy technologist, preferrably in a Children's hospital.

We are celebrating with a family party with cake, ice cream and her fave food, Kabobs.

Jen's last labs were very good. She is due again next week and we hope the results will be the same. Thank you all so much for stopping by to check on the kids. Please join me in wishing Jen a Happy 20th Birthday.

With much love and prayers for all,

Karen

Tuesday, February 14, 2006

Hello all

Jen's labs were wonderful. Her Ast and Alt were both in the teens, GGTp is down to 17(never seen it that low), bun is 9, and creatine is 1.2. Her creatine at 1.2 is the high end of normal but it's still normal and we'll take that anyday. She has transplant clinic next month as well as labs again.

Jon will get labs at clinic next month too. He is continuing to have problem with reflux, but I am very reluctant to even think about talking to the docs about possible surgery to correct it.

He is also not doing so well at school but is trying so hard to pull up his grades enough to pass. We've bribed him with a trip to Wild Adventures(inexpensive GA theme park). We had orientation at the 9th grade center tonight and hopefully he will be able to pull up his grades enough to pass to 9th grade. Please keep him in prayer for his education.

Well my health scare over my paps is over. The GYN doc said that they were really normal, what a relief. However, I do need bladder surgery. It will be a TVT procedure which is sort of new. Less invasive and less recovery time too. It's same day surgery and about much less than an hour in the OR. It's scheduled for March 16th.

Please remember Haley and Syndey's family and they continue to morn the loss of their beautiful daughters. Also please keep our special liver friend Aiden in your prayers. He has a major, life threatening problems with allergic reactions, sometimes to nothing. He is only 3 yrs old and has had so many reactions. Please keep him in your prayers as well as his mom as she struggles to maintain a normal life for him

Thanks for stopping by, please remember to sign the guestbook for Jen and Jon.

With much love and prayer,

Karen

Monday, January 16, 2006 7:53 PM CST

Hello all

Sorry for taking so long to update. We finally got moved and were without internet hookup for a few weeks.

Jen and Jon's labs at the end of December were great. Everything for both kids within normal limits. That includes Jen's kidney function too. Jen is scheduled for labs again at the end of Jan, but Jon is not scheduled again until March. Both kids see the transplant team in March, routine checkup.

Jen is taking this quarter off from school. She is working a part time job. Deck swabbing at Capt'n D's she calls it. She will go back to school in April. She did get on the waiting list for the Radiology Technology program but will not come up for placement until next summer(2007).

Jon is still struggling back in public school. We have a conference with his teachers tomorrow. Please pray for this meeting to go well and things are discussed and plans made to help him to improve in his school work. Jon continues to grow. He is now taller than me and about 6 inches taller than Jen.

I am finally starting the first of three medical coding classes in school. But only to find out that employers in our area won't hire coders without experience. I may have to stay in school after finishing coding to do medical office assistant to get my foot in the door. Most MOA's get job offers during their clinical training. We'll see what happens. Wonder if I should think about Surgical Technologist? My school is supposed to be starting that program this year.

Please keep Haley and Sydney's family in prayer as they morn the loss of their beautiful daughters. Thank you all for stopping by and thanks to those who sign the guestbook.

With much love and prayer,

Karen

Monday, December 26, 2005 6:03 PM CST

Hello all

I hope everyone had a good Christmas. Jen and Jon both received bikes. Jon was so happy that he jumped into Mark's arms and hung there like a monkey.

We have been getting ready to move into a large house. We have been painting and other remodling stuff. The house we are moving into has 4 bedrooms and 2 1/4 baths. And it's in town too, less traveling for Mark for work and Jon to school and also to the grocery store etc.

Jen's third anniversary of her second liver transplant is Friday the 30th. I'm not a poet at all but here's something I wrote. Forgive my lack of poetry knowledge.

After her 1st transplant her complications were many,
but fighting hard was our Jenny.
Her recovery was long but her percious gift was strong,
Her donor even in death did give.
Almost 10 years that gift let her live.
In 2002 another gift of life.
More complications..
More medications..
but another 2nd chance.
High school was completed, rejection was treated.
Her health is good, her gift keeps giving,
and Jen is living, living, living.

Both kids have labs in the morning. I'll post an update when those results are in. We are all doing well and hope & pray that you all are too. Please keep Sydney and Haley's family in prayer as they go through this holiday time as well as Jen's donor family.

With much love and prayer,

Karen

Monday, December 5, 2005 9:33 PM CST

Homecoming… Sunrise, Sunset… Going Home…

We’ve had three people we love go home to the Lord recently. For a while there I was feeling bad about all the deaths, then I realized that, yes, we did lose them but what did they gain? Eternal life with our Savior. What a blessing for them and us. I urge you all to ask yourself, if you died today, where would you spend your eternal life. I hope and pray that you have received Jesus into your heart as your personal Lord and Savior. I am so thankful that Jesus is my Savior, and Mark’s, Jennifer’s and Jon’s. I take great comfort in knowing that if something happen to any of us we WILL be together again at Jesus’s side.

Image hosted by Photobucket.com
Haley Christine Vincent
b. 11-5-93
d. 10-1-05

Haley was one of our liver friends. She fought a courageous battle with several diseases that affected her liver. She sang songs about living with liver disease, songs about Jesus’s love, and about friends and fun. She was such a special girl. We love her and miss her. This is one of the songs Haley wrote. This song shows her love & faith in the Lord.

Everywhere

Want to hear a little fact? The Lord has your back
He’s with you every day. His love will never fade.

You never have to run, and you never had to hide.
Even if you can’t see him, He’s still inside.

Everywhere you look, He’s standing right there
Even when you think He just doesn’t care
Everywhere you look, He’s standing right there
Even when you think it just isn’t fair
Everywhere you look, He’s standing right there
He’s everywhere.

Sometimes He doesn’t give you what you had in mind
Sometimes you don’t like what you find
But He had something in store for you
Just trust him, He knows what to do.

Image hosted by Photobucket.com
Sydney Marie Akin
b. 1-9-99
d. 10-15-05

Sydney was my brother’s daughter. She was just 6 years old when she went to be with Jesus. She is dearly missed by her Mama and Daddy and so many, many others. Below is a poem in memory of Sydney by Wanda Rhodes.

The Rose

A tiny little rose has bloomed with beauty and joy supplied.
For all who ever knew her, before her petals died.

Though our pleasure was but a season when the Savior call her home, She left the sweetest fragrance for all she’d ever known.

We were given precious memories to help us through each day.
Our rose is now in heaven sending messages along the way.

She adorns a choir of angels joining in the heavenly praise,
Giving glory to our Father as she did in earthly days.

She wants us to meet her Savior, as she has already done.
Her heart is filled with gladness as she lives with God’s own son.

Bobby Edwin Nipper
b. 6-4-32
d. 11-30-05

Bobby was my Uncle on my Mother’s side of the family. He leaves behind a devoted daughter and son-in-law and many others. He left us here on earth but joined his wife at Jesus’s side. The following was on the funeral announcement, I think it fits him well.

When I am gone

When I come to the end of my journey and I travel my last mile, Just forget if you can, that I ever frowned and remember the smile.

Forget unkind words I have spoken, remember some good I have done. Forget that I even had hearache and remember I’ve had loads of fun.

Forget that I’ve stumbled and blundered and sometimes fell by the way. Remember I have fought some hard battles and won, ere the close of the day.

Then forget to grieve for my going, I would not have you sad for a day. But in summer just gather some flowers and remember the place where I lay.

And come in the shade of evening when the sun paints the sky in the west. Stand for a few moments beside me and remember only my best.

As I ended this journal entry I asked that you remember Haley's family, My brother and his wife, and my Uncle's daughter and son-in-law in prayer. Thank you for stopping by.

With much love and prayer for all,

Karen, Mark, Jennifer and Jon

Sunday, November 13, 2005 1:43 PM CST

Hey all

I want to thank everyone who prayed and sent cards to my brother and his wife after the recent death of their daughter Sydney. My biggest concern when I first learned of Sydney's death was how my brother would cope. Upon arrive in their hometown I learned that my brother had received Jesus into his heart as his personal Savior. Praise God! Jimmy & his wife Debbie are coping but still need your prayers.

As for news at our house... let's start with Jon. Jon went to transplant clinic in October. His labs were great, checkup revealed good health. So he remains on a 3 month schedule for labs and 6 months with transplant clinic. We didn't get to see the GI doc to talk about Jon's reflux. It seems to be under better control now with the Nexium and Zantac so we'll wait until March to discuss with the doc.

Other news on Jon is that he is in public school. He started back on Halloween day. So far so good, prayers here would be greatly appreciated. He was only in school for 3 days when he was out sick. But he was only out 1 day. Bad cold which he is just now getting over. He, Jen, Mark and I were passing it around.

Jen - Jen's last labs on Oct 26th were good. Liver is happy with the lower prograf dose and her kidneys are loving it too. She remains on a once a month lab schedule and 6 months for transplant clinic.

Today's latest on Jen! Don't know what's going on but... She has itched regularly since 2nd transplant almost 3 years ago. It comes and goes, mainly her scalp, which she does not like shampooing because it itches more when wet. She immediately blowdrys her hair to stop the itching. Anyway, the last few days she has complained more and more. Yesterday she had splotchy looking areas on her arms and back but I thought she'd irritated them by scratching too much. This morning before church her face was fine, then after Sunday School(one hour's time) she had spots on her cheeks and forehead. Now it's all over her face and it's scaly looking too. Who knows what it is. I'm calling my doc in the morning to have her seen. We've been trying to switch over to a family practioner anyway. The pediatrician probably won't know what it is and they are very hands off with Jen & Jon. A big complaint that I have too with the pedi is that we hardly ever get to see the same one twice. Ok, I'm off my soap box about that.

Since Mark has to work Thanksgiving we are staying home. We'll do dinner at 4pm that day before he goes off to work. Jen, Jon and I, all have the whole week off for Thnaksgiving. Yeah, fall cleanup time! The kids both love me for that!

This has been a long update, hope I haven't bored everyone to death. Thanks for stopping by, please leave a message in the guestbook. The kids love to see who's stopped by.

Before I go here's what we are thankful for:

T - transplant teams (Dallas and Atlanta)
H - health of both kids and Mark & I
A - all three donor families
N - nature's beauty in the colors of fall
K - kidney's of Jen's that continue to bounce back
S - Salvation for all four of us
G - God - our awesome God
I - interesting life(never dull around here)
V - Veterans who fought/fight for our freedom
I - Incredible friends
N - normal labs for Jen & Jon
G - grilling shish ka'bobs(new family fave food)

Happy Thanksgiving to all. With all our love and prayers,

Karen, Mark, Jen and Jon

Friday, October 21, 2005 12:57 AM CDT

Hello all

It is again with a sad heart that I update this site. Jen & Jon's cousin Sydney(6 yrs old), pictured above, passed away this past Saturday nite very unexpectedly. Sydney's Daddy is my brother Jimmy, and she was his & Debbie's only child. She was a beautiful, loving, caring child. Sydney is resposible for her Daddy coming to know & accept Jesus into his heart as his Savior. I am so glad to know that Jimmy, while he is still so sad over losing his daughter, is able to feel the love & comfort that only our Lord can provide. I ask that you all please remember Jimmy and his wife Debbie in your prayers. I will miss Sydney so very much but find comfort in knowing that one day we will see her again in Heaven. We love you Sydney, Jimmy & Debbie.

Also please keep little Haley's parents in your prayers as they continue to morn their precious daugther too. It has been such a sad time at our house in the past few weeks, but we are trying to remember to rejoice in knowing that these two little girls who meant so much to us are singing with the Angels in Heaven.

With much love & prayer,

Karen

Sunday, October 2, 2005 1:14 AM CDT

No new news on Jen, she is due for labs on Monday. I will post an update after we get the results.

This update is actually about our liver friend Haley. For those of you who regularly check in on Jen & Jon you know that we always ask for prayer for Haley. It is with the saddest heart that I must say that Haley passed into the arms of our Lord tonight. Please remember her family during this tough time. They are very special to us.

With much love & prayer,

Karen, Mark, Jen & Jon

TUESDAY LAB UPDATE
Just a short note. Jen's liver & kidney labs are all good. It seems like her liver likes the lower med level & the kidneys really do.

Karen

Wednesday, September 21, 2005 8:38 PM CDT

I probably should wait to post this update when I am not so upset. But I'm just going to go ahead.

Jen's checkup with the transplant team brought mixed reviews. Her liver function is GREAT, thank the Lord, in fact so much that the team decided to decrease her prograf level.

BUT, they are doing this to preserve her kidneys. Her bun went up to 33 and her creatinine up to 1.6. It was explained to us that with her creatine at 1.0 or 1.1 that's normal but when it gets to 2.0 it means she lost 50% of her kidney function. We also found out that bactrim(which she is on for a urinary tract infection)is hard on the kidneys. My understanding is that the kidneys filter the bactrim before the creatine thus creating a backlog resulting in an increase in creatine. What this all means is that Jen's kidney don't tolerate much at all before function diminishes.

One of the docs decided to decrease her prograf & see if she tolerates that without rejection. If not, he mentioned another immunosuppressive medication called rapamune. I guess it's not as hard on the kidneys. It is such a real FINE line between preventing rejection of her liver & preventing further kidney damage. She did have a moderate rejection episode just a year ago this month.

What has me most upset is a comment someone made today. Bear in mind, this has been "hinted" at before but no one has given a time frame. Anyway, someone said if Jen's kidneys continue this was she'll be facing a kidney transplant by the time she's 30 years old. I'm having a hard time thinking about the possiblity of another organ transplant, especially a kidney transplant.

Jen has been through so much already, it's not fair. And then there's Jon with his own health issues that have me worried that he will eventually face another liver transplant. I guess I'm feeling overwhelmed by today clinic visit with it's news. I just feel like this never stops.

On the other hand, I know I need to stop whining, I know of several families who's children didn't even get a second chance at life due to a shortage of organs. And here we are with our kids getting three "second chances."

Sorry for venting & whining. I'm tired, and am making a gazillon spelling & grammatical errors and should just go to bed and sleep on the whole situation. Tomorrow will be a better day. Please remember our liver friends Haley & Aiden.

As always, we sincerely appreciate each & every one who takes the time to stop by and check on Jen & Jon.

With much love & prayers,

Karen

Monday, September 19, 2005 11:01 PM CDT

Short update. Jen's labs today. Her liver function continues to be great. Her BUN is down to 22 but her creatine is up to 1.5. We just got results emailed to us tonight & don't have the prograf results since the local hospital sends it out. Prograf should be back tomorrow.

I don't know whether to hope the prograf level is high & thats what's causing her cr to be high or not. It seems when her prograf dose is changed she goes back to weekly labs for several months again & it takes that long to settle down again. But on the other hand I am afraid of her kidneys showing more long term permanent damamge. However, she was complaining of symptoms of a UTI last wk & went to the Pediatrician on Friday. The NP prescribed Bactrim because of Jen's history, even tho her "pee was perfect" as the NP said. Even the pH was "perfect." Jen has not run any fever but does still have infrequent pain. She sees the transplant team on Wednesday so we'll see what they say about all this & her labs. But I'm sure she'll be needing labs again soon. Poor thing took 2 sticks today & she hadn't had lab in a month. Oh well, I think the sticks bother me more than Jen. She takes it like a trooper, she tells the phlebotomist where to stick or not to stick. Just keep her kidneys in your prayers. I'll update after Jen's clinic checkup on Wednesday.

Speaking of prayers, please continue to remember Haley & Aiden and Aiden's mom and soon to be baby brother. Ok, so this was not so short.

With much love & prayers,

Karen

Monday, September 19, 2005 9:22 AM CDT

OK, I'm not sure if I like the blogging site or not. I'm going to update both for a while to see which I'll keep permanently.

I made it through my Human Diseases class. My final grade was an A. That class just about killed me. It was very hard. There were 17 chapters, 20 to 25 disease in each chapter and each disease had 9 subcatergories. So much to memorize, it gave me a new & deeper respect of what doctors cram into their heads during medical school. I can't image 4 full years of that kind of information being crammed into someone brain. As soon as I figure out how to post pictures here I will post one of the liver model I made. Got an A on it and also on my power point presentation too. So anyway I have managed to keep my 4.0 average.

I'm now on break until the 28th when fall quarter starts. Jen will also start back then too. She will have 3 classes and I'll have 2. Jen has labs and transplant clinic next week. Keep her in your prayers that her labs are good and her checkup goes well too. Jon will get lab on Oct 10th and been seen in transplant clinic on Oct 12th. He has grown so much since his last clinic visit in March. He is now 5ft 5in tall and wears a man's size 10 shoe.

Jen & I have been goin to Curves for 3 weeks now. We will be getting weighed and measured on the 20th. Jen wants to see if she's lost any weight before going to clinic. I'm afraid the docs will be getting onto her about her weight gain. But if she can tell them she's lost weight & is now exercising 3 times a week maybe they won't be so harsh.

Jen will be getting her eyes examined soon, hopefully her cataracts will not have grow larger. I will be scheduling Jon for an eye exam soon too. He has been complaining of headaches & blurred vision recently.

For those of you who've just found us we always ask for prayers for our liver friends Aiden and Haley. Aiden has had a liver transplant and Haley is waiting to being transplanted. We also have a friend (Joan)from church who will need a kidney transplant & also needs prayer.

Thanks for stopping by and checking in on our family. With much love and prayer,

Thursday, September 15, 2005 8:18 PM CDT

We are moving to

http://3livers.blogspot.com/

With much love & prayers,

Karen

Thursday, August 25, 2005 5:10 PM CDT

Hi all

Jen had labs today. Her numbers look fantastic!
Ast 16
Alt 14
gGTP 21
bili .38
alk ph 53
BUN 28
Creat 1.1
WBC 6.0
Hgb 13.3
Hct 39.4
Plat 158

I said in the last update that I'd never seen her bili that low(it was .45)& today it was .38! It is so awesome to see both her liver & kidney function at such great levels at the same time. She will be going to transplant clinic next month the week before Fall quarter starts. We hope for a good report there as well as labs again that day to be good also.

Speaking of school, she has less than 5 weeks of her summer break left. She has switched from the Radiology Technology Diploma program to the Radiololgy Technology Associate Degree program. The difference is the English, Math, Psychology & Biololgy classes. It looks like it will be the summer of 2007 before she gets into the Rad Tech Core classes(waiting list)so in the meantime she has to stay in school on a full time basis to stay on Insurance. The extra classes for the Assoc Degree will get her through the next two quarters, then we'll see.....

I have just 2 1/2 weeks left of Summer quarter & I am so ready for these classes to be over. I am struggling very hard to maintain my much wanted 4.0 average in school because of My Human Disease class. At mid-term, in that class, my average was 90.57. So I'm, by the skin of my teeth, hanging on to an A. Today's test was a 88 tho:(
I'm still trying tho. Wish me luck.

Jen & I both have joined Curves. We got measured yesterday & go back tomorrow for our first workout. I've gained 20-25 pounds since going back to college(January) and Jen's gained 15 pounds since March. We need to change our couch potato way & get moving! Wish us luck in this endeavor!

Jon is in his 3rd week of homeschooling in the 8th/9th grade. So far he's doing fairly well. Struggling some what in Math. Math has always been his weak subject.

He is looking forward to the Youth Rally/Concert next month at our church. He loves youth at church. He is my motivation for getting to church on Wednesday nights.

We thank you all for stopping by to check on Jen & Jon. Please sign the guestbook so they'll know who's stopped by. And as always, please remember our liver friends Aiden and Haley. We have a new prayer request, our church friend, Joan, is in the process of getting listed for a kidney transplant. Please keep her in your prayers, she is very special to us & to our church.

With much love & prayer,

Karen

Thursday, July 28, 2005 6:44 PM CDT

Hey Everyone

I hope everyone is doing well. We are trying to survive the heat wave. We are not used to high 90's that feel like over 100 degrees! But today it started cooling off.

Jen & Jon are going on an overnight campout with the youth group in our church tomorrow. They are going to Lake Chigamonga in Tenneesse. Mark & I will get a few hours together alone before he has to go to work. He is still on the night shift. It will be a quiet night without kids or hubby. I will put the time to good use studying.

My Human diseases class is killing me this quarter. There is SO MUCH detail. So far my average is only 88. My goal was to maintain an A average all the way thru my classes, I may fall short of that goal with this class. But I will keep striving to do better.

Jen had labs this week. Her results were:
Ast 17
Alt 15
ggtp 21
Bun 21
Cr 1.1
T bili .45(I don't remember her bili ever being this low)
plat 153

These are all very good for Jen. It seems her liver & kidneys are both happy. Her prograf level is not back yet but it must be in a good range since her kidneys are happy. Her blood pressure was up most of the week at transplant camp. But we are getting good BP at home tho. Maybe it was just excitement???? We'll just keep an eye on it. She will be on summer break from school until Sept 28th.

Jon just had labs in June(results were good)and is not scheduled again for labs until Sept. Both kids will return to transplant clinic again in Sept too. He is enjoying the remaining few days of his summer break.

I don't think I mentioned that Jon has also accepted Christ as his Savior and was baptized too. He has really amazed me with his thirst for church. Part of it is for socialization, but he is learning so much about God's word. He loves the youth group at church. He turned down a "job" because some of the workers curse and talk badly about women. I am so proud of his maturity in wanting to do the right(Christian)thing & not just ignoring it just to earn money. He has an opportunity to work for the youth minister to earn a little spending money.

Ok, enough bragging about my kids. Thank you all who pray for Jen & Jon, it is appreciated so very much. Please sign the guest book if you have time, Jen, especially, loves to see who's stopped by. Please continue to remember our friends Aiden & Haley.

With much love & prayer,

Karen

Thursday, June 30, 2005 11:42 AM CDT

Hey Everybody

I've copied and pasted this update from a family & friends update. It's been a while since we've sent out an update on Jen & Jon. It's been hectic here with Jen & I(Karen) attending college.

Jen had labs this week. Liver numbers are good, Ggtp is down to 44, which is pretty normal for her. Her creatinine(kidney) is 1.1. This is the high end of normal, but still normal and she usually runs high normal.

She is taking summer quarter off from college, she needs the break. She is so looking forward to Camp Independence which is for pre and post transplant kids. She & Jon go to camp this Sunday. She finished the classes for CNA(Certified Nursing Assistant) & passed the state test too. So now is she officially certified with the state. NO, this is not what she wants to for a living. But she has to stay in school to stay on insurance so she has to take something. She should offically go on the waiting list for Radiology Technologist now. BUT the last we heard was that it's 2 years long. She is thinking of doing Phebotomy in the fall. She has said she didn't want to deal with blood, but as she says, "if I can do perineal care for women & MEN!, I can surely draw blood." As you can see, she did not like the bathing aspect of nursing care.

Jon is enjoying the summer. Jen bought a trampoline but Jon is the one who is on it several times a day. He is active with the youth at church. Liverwise he is doing well. His recent labs were very good. He is now getting labs every 3 months. Most of his health issues stem from his reflux, which is getting pretty bad. He says he is ready for his GI to do whatever is necessary to stop the pain. I really don't want to do anything drastic such as "even discussing" surgery but Jon says he would. We'll see if this continues to be this bad. If it is, in September when he sees the GI again, we'll discuss what to do then. He is also looking forward to transplant camp too. This will be his 3rd year going.

Speaking of the kids, we still have about 40 cookbooks if anyone needs more or has not ordered one yet. Just let us know. Our church did a love offering for their transplant fund that enabled us to reach the goal of $5000 which is where NTAF gives a one time grant of $1000. We were so humbled & I thought it was awesome that the church love offering got us to the grant point. To us, it was a God thing. We have had to use the fund to pay deductibles, copays, meds, etc so we are so grateful for the support from all.

It's been a tough year with the insurance switch. Then Mark lost his job & therefore insurance. He is now working again and in September we should have insurance again. The premiums at his new job are so much lower too. Please keep us in prayer that this all works out. Jen is ok because she still has her SSI/Medicaid(for how long we don't know, her case is at the disablity review board). We were able to get Jon back on medicaid but now that Mark is working Jon will lose medicaid. It's great that Mark is making more in income but it means Jon won't be able to qualify for medicaid or Peachcare. So he will be without insurance for August and possibly July(we are waiting to hear). Not much we can do since CORBRA ing from the old job is over $1000 per month. Jon won't be due for labs again until September & his meds cost just over $200 per month so we can pull from the transplant fund for meds.

Before anyone asks, yes the new insurance can invoke preexisting clause on Jon but only for the months without coverage, two. Thank God, it's Jon who's our "healthy" one who will be without coverage. I know it sounds bad, it is but we'll get thru this with God's help. It all worked out when Mark was receiving only unemployment. Our God is truly an awesome God.

Mark likes his new job. He is working as an electrician in an industrial plant in Dalton. He does not like the night shift tho. We are praying that he can get switched back to day soon. I am enjoying the 2 week break between quarters. I will start summer qtr on Wednesday of next week. I will be taking a computer class and Human Diseases. The Human Disease class is worrisome. I've heard the instructor is tough and the class itself, tough too. But I also heard that the Anatomy class I took last qtr was hard but I studied alot & got an A. So far I am maintaining a 4.0 average and my goal is to maintain that the whole time. I actually like being back in school. It's a challange & it keeps me from fixating too much on the kids health issues. My classes are helping me to understand more about the kids labs, health, and such.

Well this is a very long update, I hope I haven't bored anyone to death. Please keep our livers friends Aiden and Haley in your prayers.

With much love and prayer to all,

Karen, Mark, Jen & Jon(Pawney, Sissy, Miss Mess-our cats)

Monday, June 13, 2005 2:57 PM CDT

Hello all

Wednesday - Jon's Labs
All of Jon's numbers look great. Even his Ast & Alt were in the 30's. He is doing well, growing, growing, 5ft 4inches tall now. Jen's is out to labs every 2 wks, yeah!

Jen's numbers are better. Her Alt is down to 25, which is normal. Her Ggtp is still high at 103 but down from 169. Maybe it was something viral, although she was not feeling sick. Who knows? We'll check labs again next week & hopefully be able to space labs back out again to monthly.

Jen has 2 more finals in the morning then she's off until September. She is so happy.

She and Jon are putting together a trampoline right now. Jen bought it with her own money. Don't anyone tell any of their Doctors! They'll skin us. Jen has always wanted a trampoline. For years and years she could not even jump on one because of her spleen size. At least it will be a form of exercise for her, she's is definitely a couch/computer potato. Just please pray for no injuries.

Please keeep Aiden & Haley in your prayers. With much love to all,

Karen

Wednesday, June 8, 2005 3:08 PM CDT

Hey all

Great news here is that Mark has a job! After being out of work for 5 1/2 weeks, he started a new job yesterday. He will be off on Sunday for church services and off in time on Wednesday nights(or any night) for 6:30pm services and or activities too. He was hoping to find work that enabled him to participate more in church. We feel that he was led to this job by the Lord. Thanks to all who have been praying for Mark's job situation. Your/our prayers worked.

Not so good news - Some of Jen's liver numbers are elevated. Her Ast is 25(ok), her Alt is 78(too high), but the one worrying me the most is her ggtp, which is 169. We just got her prograf level back this afternoon & it is 10.3 which is on the low side so I expect the transplant team will be calling to up her dose. Hopefully that is all it will take to get all her liver numbers back in line again. Kidneys seem to be happy. So please keep Jen in your prayers.

Our church is doing Vacation Bible School this week. I have been helping in crafts, Mark with the 7th & 8th grade kids, and Jen in recreation. Jon is in the 7th & 8th grade class.

Jen has had 2 days of clinical work in her CNA classes. She said it wasn't as bad as she was expecting. Jen has been assigned to a very nice, helpful CNA. The second day there was the facilities state inspection day. Jen is learning about caring for the elderly. It is wearing her out tho. She is not use to being on her feet from 8am to 3pm. I told her "Welcome to the real world." She has her last clinical days tomorrow & her final exams on Monday and Tuesday then she's off for the summer. I have one more final that I will get tomorrow to take home & bring back on Tuesday. This quarter really has flown by.

Please keep Aiden & Haley in your prayers. Aiden's number are finally settling down after a major rejection episode and Haley will hopefully be back on the liver transplant waiting list soon.

Jon is scheduled for labs next week as is Jen. Jen is back on a weekly schedule for a while. Please remember to sign the guest book for the kids.

With much love & prayer,

Karen

Thursday, May 26, 2005 8:06 AM CDT

Hey all

Not any new news on the kids health, other than they are both doing well. Both are scheduled for labs next month.

Big news is that Jon was baptised recently. We are so proud & happy about his decision to accept Christ as his savior & follow in baptism.

Speaking of church, our church did a love offering for Jen & Jon's transplant fund. We are so humbled by the love & support of Spring Place Baptist Church. Mark & I both feel that God used Mark's former job as a way to get our family back in church and specifically to Spring Place Baptist Church. You know how it's said that God will provide. It is so awesome how he does. The love offering will bring the balance in Jen & Jon's NTAF account up the level that NTAF will give a one time grant of $1000. I just feel that this love offering and grant is all God's doing. Thank you so much to each and everyone at Spring Place Baptist Church for your support, love and especially prayers.

Mark is still looking for employment. Please keep him in prayer that he will find something soon. Jen & I have less than three weeks left in this quarter at school. Jen will take the summer off, while I take 2 more classes. Both kids will be going to Camp Independance in July. It's a camp sponsored by CHOA(Egleston), National Kidney Foundation and, I believe, several other organizations. It's a camp for kids waiting or have received organ transplants. And it will be a break for Mark & I too. We love our kids but sometimes it's good to get a break for them too. Plus it's good for them to get a break from Mom & Dad too.

I will update again when the kids have labs done. Please keep Mark in prayer about a job and Aiden & Haley for good health.

With much love & prayers,

Karen

Friday, May 6, 2005 10:38 AM CDT

Hey all

Jen had labs on Wednesday. Her numbers were all good.
Ast 17
Alt 17
GGT 28
Plat 169
Bun 21
Cr 1.1
bili .5

These are all great. Kidney is happy, liver is very happy. She started feeling bad Wed nite & we were worried that her numbers would be off. She seems to have a cold/sinus type thing going on. Appetite is still good, just energy level is down some. Hopefully in a few days she'll be fine again.

Jen & I are at mid-term for Spring quarter at school. This quarter is going so fast. So far I am doing very well in both of my classes. Jen has a B average right now in all her classes and I have an A average. Jen is excited that there is only about one month left in this qtr since she is taking summer quarter off.

Jon continues to do well health wise. Labs are not scheduled until June. School is tough for him but he is trying hard.

We have a prayer favor to ask. Mark is between jobs. Please pray that he will find something quickly and with the benefits we need for the kids.

We still have about 45-50 cookbooks if anyone is interested.

Prayer list: job for Mark, Aiden and Haley.Thanks for checking in on Jen & Jon.

Karen

Saturday, April 9, 2005 6:49 PM CDT

FUND RAISING NEWS

We still have about 50 cookbooks left. We need help getting these sold for their transplant fund account. We also need more ideas for any type of fund raising events. We have only raised about $3100 so far. We would appreciate any help or ideas.

Jen had labs this past Wednesday. All her numbers were so good.

Ast 20
Alt 18
ggt 32
Bun 13
cr 1.0
potass 4.2
bili 0.5

We don't have her prograf level yet but evidently it must be good since her liver & kidneys are both happy. We are skipping labs this coming week or longer if the team says she can.

We both started Spring qtr. Jen thinks her Psy teacher is great. I will be studying my butt off this quarter, much more than last qtr.

Jon will be getting his new curriculum next week. I think going back to totally Abeka will help him. We are breaking down his subjects by grade level rather than trying to keep all subjects on the same grade & him having difficulties in Math and/or writing.

Spring has arrived here. Everything is in bloom & temps are getting up to the upper's 70's in the afternoon. The kids are bugging me to take them swimming, I can't convince them that the water is not warm enough yet.

Don't forget to sign the guestbook for the kids. Please remember Aiden, Haley, and Jen & Jon in your prayers. Thanks for stopping by & checking on the kids.

With much love & prayers,

Karen

Thursday, March 31, 2005 5:50 PM CST

Jen's lab results from yesterday are in. Her kidney numbers are down, praise God. Liver numbers are good as well as potassium. So it looks like she is back normal/stable again. This is great news, we were really starting to worry about whether or not her kidney were going to bounce back this time. Until we hear from the transplant team she is still on weekly labs tho. We hope one more week of stable labs & she can space the labs out again. We thank everyone for your prayers, they worked.

Jen & I both start Spring quarter on Monday. Bummer, I have to go to school on my birthday. Wednesday I have a Doctor's appoinment myself, just a regular checkup. I just hope he doesn't want a glucose tolerance test done. I hate those, I have lots of trouble keeping that stuff down, sickingly sweet.

Healthwise Jon is doing well. He is over whatever viral thing he had last week. He is not due again for labs until June! As far as school goes, we have decided to go back to Abeka curriculum for him. We think he needs the structure Abeka provides. Please keep Jon in your prayers for him to have patience with himself in his schoolwork. He is having a difficult time. We may decide to wait another year before starting high school level work this fall.

Mark is doing well too. He has been traveling quite a bit. Beall's has been opening several new stores in Georgia & Tennessee.

Please sign the guestbook so the kids know you've stopped by. thanks

Prayer list: Aiden, Haley, Roger, Savannah, Erin, Jen and Jon. Thank you for keeping these kids in prayer.

With much love & prayer,

Karen

Thursday, March 31, 2005 5:50 PM CST

Jen's lab results from yesterday are in. Her kidney numbers are down, praise God. Liver numbers are good as well as potassium. So it looks like she is back normal/stable again. This is great news, we were really starting to worry about whether or not her kidney were going to bounce back this time. Until we here from the transplant team she is still on weekly labs tho. We hope one more week of stable labs & she can space the labs out again. We thank everyone for your prayers, they worked.

Jen & I both start Spring quarter on Monday. Bummer, I have to go to school on my birthday. Wednesday I have a Doctor's appoinment myself, just a regular checkup. I just hope he doesn't want a glucose tolerance test done. I hate those, I have lots of trouble keeping that stuff down, sickingly sweet.

Healthwise Jon is doing well. He is over whatever viral thing he had last week. He is not due again for labs until June! As far as school goes, we have decided to go back to Abeka curriculum for him. We think he needs the structure Abeka provides. Please keep Jon in your prayers for him to have patience with himself in his schoolwork. He is having a difficult time. We may decide to wait another year before starting high school level work this fall.

Mark is doing well too. He has been traveling quite a bit. Beall's has been opening several new stores in Georgia & Tennessee.

Please sign the guestbook so the kids know you've stopped by. thanks

Prayer list: Aiden, Haley, Roger, Savannah, Erin, Jen and Jon. Thank you for keeping these kids in prayer.

With much love & prayer,

Karen

Thursday, March 24, 2005 7:38 PM CST

Hey

Saturday update: We have the most wonderful news. Jen will be baptized tomorrow on Easter Sunday. Mark & I are so happy. It was 19 years ago also on Easter Sunday that he & I were baptized. I feel that Jen was what led us to the Lord and now here she is being baptized. What a beautiful circle of life. We hope you all have a happy and blessed Easter Sunday.

BACK TO THURSDAY'S UPDATE:

Well, Jen's labs this week were mixed. Her liver numbers, ast, alt & alk phos were up but still within normal limits. Her ggtp is still trending down nicely.

Her kidney numbers. Jen's creatinine is up to 1.5. We won't know what her prograf level is until tomorrow. It's a send out for local hospital. But her prograf dose is back up to where she was before all this started at the beginning of March and her creatinine was fine before then. Her creatinine on March 2nd was 1.5, March 4 was 1.9, March 9 was 1.1, March 16 was 1.2 and yesterday 1.5. Also her potassium is up to 5.5 too. Her K went up last Oct & her bp med was changed & her K came right back down to normal. Plus she's more tired than usual.

Anyway, I am probably over reacting but, am worried that her kidneys are starting to trend down in function. I am trying to learn more about the kidneys & what the early signs of ESRD are. Also trying to find other parents of non renal transplant recipients who've gone on to have renal issues. But this is Jen, whose body never goes the easy route, always keeps us on our toes. She has labs again on Wednesday.

Jon is sick. He started running a fever & had a sore throat yesterday. At the pediatrician's today he did not culture positive for strep tho, good thing, that would be bad for Jen & her kidneys if she caught it from him. I didn't know that until the pediatrician's P.A told me that today. I just really don't know that much about the kidney function etc. The P.A. thinks Jon may be getting a strain of the flu that the flu shot did not cover. They have seen several patients recently with this. So we'll just watch him. Knowing Jon tho, he'll be sick for 2 or 3 days at most then just fine.

We did get to visit and eat dinner with the kids Grandpa & his wife last night. The kids were so excited to see their Grandpa. As soon as we figure out how to down load the pix from the camera to the computer we'll post a pix of Jen & Jon with their Grandpa.

Please keep Jen & Jon in your prayers. Also remember Haley, Aiden, Roger, Savannah, Erin & Tanner too.

The kids love seeing who's visited their site, so please remember to sign the guestbook.

With much love & prayers,

Karen

Wednesday, March 16, 2005 2:08 PM CST

Both Jen & Jon have runners in the Boston Marathon. Jon's runner is Emily and Jen's is Laura. We want to thank these two ladies for running for the American Liver Foundation & Jen & Jon. We admire them for all the training they must do for this marathon.

GO EMILY GO

GO LAURA GO

Well, Jen's labs are much improved.
Ast 25(was 75)
Alt 32(120)
ggtp 62(was 80)
bili .7(was normal)
Her prograf level is low at 4.6 but we are happy that her ast & alt are within normal limits. We expected to see them up even more with the lowered dose of prograf. Her bun & cr(kidney numbers) are 23 and 1.2(these are good for Jen), especially considering she went to the local doctor on Monday afternoon with an infected toe & urinary tract infection.

Jen & I both have our last final exam for Winter quarter tomorrow morning. Then we are off for Spring break for 2 1/2 weeks! Jon's school work is going very slowly without any ADHD meds. But we are still plugging away.

We are down to about 55 cookbooks left. We still need more ideas for fund raising events. Let us know if you think of any.

Please remember our prayer list: Aiden, Haley, Tanner, Marcus, Romina, Natalie, Savannah, Anthony, Drew, and Jen & Jon.

With much love & prayer,

Karen

Thursday, March 10, 2005 4:09 PM CST

Saturday we will be celebrating Jon's 12th Liver Transplant Anniversary! It is awesome what a gift his donor gave. Jon was only 27 months old when he was transplanted. I can remember being told that he would not have survived to his 3rd birthday without a transplant, and look, here he is 12 years later. He is happy and healthy. He is only on 4 medications. Only one is transplant related, the others are for reflux & allergies. He only has labs every other month.

The American Liver Foundation in Boston has runners participating in the Boston Marathon in April that includes one linked up in Jon's name. Jon was so excited to learn that he had been matched up with a runner. Thank you Emily. Go Emily Go.

Other news- We are still playing the prograf, liver function dance with Jen but hopefully it will soon work itself out, but for now, she's back to weekly labs. Please remember those on our prayer list: Aiden, Haley, Tanner, Roger, Natalie, Lily, Erin, Janna and PLEASE remember Jon's donor family for with out them, Jon would not be here.

One more thing - My presentation in my English class on Organ Donation was Wednesday. It went very well. I was very nervous but got a A . The instructor even asked me if I would do it for a larger group in the college, but I had to say no. I'm just not ready for a larger group. The visual aid I used was "faces of organ donation." I used faces of Jen & Jon and another child as post transplant, another child as waiting for transplant, and one of our CLASS angels as a child that didn't get his second chance. Maybe one day I can do something like this in front of a large audience. I hope to, I feel like it's time for my family to help in getting the word out about how much organ donation is needed.

Thanks for stopping by,

Karen - mom of
Jen - liver transplants 1993 & 2002
Jon - liver transplant 1993

Thursday, March 3, 2005 5:43 AM CST

Hey all

***Wednesday update(3/9)***
Well... Jen's kidney numbers are back down to where she normally runs, but her liver numbers are elevated. Her ast is 75 and alt is 120. Like I've mentioned in previous updates, here we go again walking that tight rope between keeping her immunosuppression high enough to prevent rejection but not so high that her kidney suffer damage. Please keep her in your prayers. I will update as soon as I have any new news. Thanks for stopping by to check in on the kids. Please don't forget to post in the guestbook so the kids know you've been by.

***Saturday eve update(3/5)***
We got word tonight to drop Jen's prograf dose from 3mg to 1mg to give her kidney's a break. We still won't know what her prograf level from Friday's labs was until Monday or Tuesday. Labs again on Wednesday. She has been more tired this weekend than usual, taking several naps a day. Please keep Jen is your prayers that her kidneys settle down soon.

***Friday Lab Update(3/4)***

Jen's bun is up to 33 and her creatinine is 1.9, this are not good numbers for her kidneys. We are pushing fluids & hope she's better by Monday. Her prograf level won't be back until Monday so we wait to see what to do. In the meantime she is to DRINK, DRINK, DRINK. Please keep Jen is your prayers that her kidneys will settle back down. We are grateful that her liver numbers(while still in normal range on Wed)are back to where they've been since December.

*************************************
Back to Thursday's update(3/3)

We drove down to Atlanta yesterday for labs, clinic, and to visit with two of our "liver" friends, Aiden & Haley. Aiden was such a trip. He was singing, talking, playing, running, and did I say talking. He is so cute & his manners are so great, especially for a little boy who is not yet 3 years old. Miss Haley was so cute in her her hats & she sang for us too. It was good to see her up & running, singing & playing. I had a great visit with their moms too. It's good to ber able to sit down & talk with other liver moms. Ok, on to the clinic news.

Jen - Well some of her numbers were elevated. Mainly her kidney numbers but her prograf level was high so that's probably why. She'll have labs again in the morning(Friday)then we'll see where her numbers are. Her liver numbers were up but still within normal limits. She's lost 7 pounds, she so was so happy. Her blood pressure was 107 over 54, very good. She is shooting for a goal of 10 pounds more before next clinic in September.

Jon - His numbers were all great. He is officially 5 foot 3 inches tall & weighs 107 pounds. We discussed the possibility of fundoloplication(probably misspelled) surgery for his reflux. I, definitely, am NOT ready to really discuss this in detail. The doctor did talk with us the testing that would need to take place before a surgeon would even consider it tho. It would require him being off all reflux meds for 3 wks prior to a Ph probe test and an endoscopy too. I asked about Jon going back on Nexium since we now have different insurance & he wrote a script so we'll see if it gets approved. Nexium used to work better for Jon. Otherwise, his reflux will have to get MUCH worse before I'll feel comfortable even asking specific questions about this surgery.

Gotta close for now, Jen & I must get to school. Please remember Haley, Aiden, Tanner, Natalie, Roger, Savannah & Jen and Jon in your prayers,

With much love & prayers,

Karen

Thursday, February 24, 2005 4:41 PM CST

Hello everyone

Not much news here. Both Jen & Jon are getting over a cold. Thank goodness it wasn't time for labs, because their numbers would probably have been off. Both kids have transplant clinic and labs next week. I will post an update on their checkups/labs late next week.

Our cookbook sales are going well. Out of 220, we have 74 left, thanks to all who've ordered! Yeah, so far we've fund raised/received donations of $3000. We still need to raise more, but we are so appreciative of what's been given to date. It is such a relief to know that as the medical bills roll in, that Jen & Jon's NTAF fund is there to help pay them. Those bills are definitely rolling in too. Jen has had 4 Dr's appointments, 2 sets of labs, several x-rays, an MRI, meds delivered twice and 7 PT visits since the 1st of January. Jon has only had one set of labs and med delivered twice. Jon is our "low maintainance" child, knock on wood.

Provided Jen's(& Jon's) labs next week are normal, she will go to labs every 6 weeks and Jon will go to every other month to every 3rd month. That will help since their labs run apx $600 per child per set. Not only will it help financially but in others way too. The biggest is that it will mean both are doing very well & are STABLE. Here's what stable means to our family:

S - stable enough
T - to play, go to school
A - and
B - be
L - like
E - everyone else

Jen turned 19 this week and tomorrow will be 12 years out from her first transplant. Jon will be 12 years out in a few more weeks. So much has happened during those 12 years. Many times I didn't know if Jen would survive or how I would be able to cope. People often ask me how have I coped with all the kids have been thru with 3 transplants between them? My answer - My faith, my husband, and after that, it's put one foot in front of the other & keep going no matter what, then fall back on the first two. Repeat, Repeat, Repeat.

Speaking of faith, our prayer list: Haley-please remember her & her family, it's been a rough time for them. Aiden, we will see this sassy little fellow soon. Tanner, maybe getting his gift of life next week if his living donor is a match. Natalie & Roger, both received their gifts of life recently & are still recovering. Erin, a sweet little red head(Stef-she looks like you)who recently was diagnosed with another health issue. And please remember all 3 of Jen & Jon's donor families, especially Jen's 1st donor family since it was 12 years ago this week that they gave so generously in their time of grief so that Jen could live.

We want to thank all of you for checking in on Jen & Jon
May God bless you all.

With much love & prayers,

Karen

Saturday, February 19, 2005 11:01 AM CST

It is with a heavy heart that I ask for special prayers for two of our "liver" friends. Little Dylan and Gracie became angels this week. Please remember their families in your prayers.

With much love & prayers,

Karen

Saturday, February 5, 2005 4:32 PM CST

THE COOKBOOKS ARE IN! All original prepaid orders have been shipped. Thank you to those who've order books recently as soon as we receive your address we will get a book in the mail to you. We still have about 80 extra books so if you want more or know of someone who does just let us know.

Our special liver friend Haley is making a miraculous recovering. Thank you to all who have been praying for her. Please continue to do so for she still needs to get her gift of life soon.

Now for the news on Jen. She went to PT & we now feel we've found the answer to her joint pain. She has one leg shorter than the other, most likely due to her scoliosis. She was taught several exercises to do at home & will have twice a week therapy for 4 weeks to strength her hips, knees & over all endurance. She may need to have a heel lift for her left leg.

She was given permission to go to 6wks apart on labs! She has never been more than 4 weeks apart for the last 14 years. Wow, I'm a little nervous about this big jump so we will go to 4 wks for 2 times then she'll be seen in transplant clinic & if her numbers are still good then go out to 6wks. I guess I need time to be comfortable with labs this far apart. It will be a whole new "comfort" zone. But we are so excited tho, it's wonderful to know the transplant team feels Jen is doing this well.

Jon will be doing labs every 2 months. We were told he could go to 3 months, but again, it's the mom "comfort" zone thing. It's great that both kids are doing so well, we have been so blessed.

Prayer list - Haley, Aiden, Roger, Erin, Marcus, Savannah, Drew, Tanner, Anthony, Fiona, Jen & Jon.

With much love,

Karen

Monday, January 31, 2005 6:06 PM CST

Hey all

Jen & Jon's cookbooks will be here tomorrow. I will get all orders out by Saturday. Thank you so much to those who've already ordered. If anyone would like another or know someone who does please let me know, we have plenty of extras.

I have an extra special prayers request. A very dear, very special liver friend of our is very sick. Please remember her in your prayers for healing. Also please remember her Mom & Dad as they stay by her side. This little girl is an extra special child who's touched many lives. We pray that God will heal her & give her Mom & Dad strength as she recovers.

With much love,

Karen

Friday, January 28, 2005 9:26 AM CST

Hey all

Jen had her MRI & Ortho appointment this week. Good news is that AVN was definitely ruled out. She does have some fluid in her hip joints but the Ortho didn't think it was enough to cause joint pain. His recommendation is that Jen do therapy 1-2 times a week for 3-4 weeks to see if that will help.

Her labs were great. Liver numbers are totally normal & Kidney function is good too. Yeah, so far it looks like she is tolerating the decreased dose of steriods. Labs again in 2 weeks.

Jen & I will be driving down to Atlanta tomorrow for the last teen step up event. We'll stay over for the Georgia Tech Ladies Basketball game on Sunday. Jen will participate in the half time presentation on Organ Donation.

COOKBOOKS - The company called yesterday. We should receive the books on Tuesday. I don't have class on Wednesday so I'm hoping to package up & send out as many as possible to those who've already ordered. And if anyone still wants one we'll have plenty. Email me at threelivers@att.net
for more info.

Our prayer list now includes Aiden, Haley, Tanner, Anthony, Savannah, Romina, Marcus, Gracie, and, of course, Jen & Jon.

With much love,

Karen

Thanks for stopping by & don't forget to sign the guestbook.

Friday, January 21, 2005 12:55 AM CST

Hello all

We got great news from Jen's eye doctor this morning. Her cataracts are unchanged from September's checkup. Plus she gets to space out her checkups to 9 months apart. Jen was so relieved, she was very worried about having to have surgery to remove the cataracts. It's been one month since her prednisone dose was decreased to 2.5mg daily & so far she's tolerating it well. It is our hope that if she remains stable with the 2.5mg dose that in March at transplant clinic her dose will be further decreased. She would love to be eventually weaned off the steriods completely.

In other news, Jen was invited to a Georgia Tech Ladies Basketball game. Lifelink of Georgia is participating in a halftime presentation on organ donation. Jen, along with other college age transplant recipients, will be the "faces of organ donation." Lifelink will also be sending me some things to give out during my presentation at school on organ donation. Yes, I have to do an oral report. I'm very nervous and excited at the same time. My family has been so blessed, 3 times over, by organ donation & I hope this will be the start of "giving" back for the 3 gifts of life we've received. Jen is excited too. She is sharing certain things about being transplanted with her teachers & classmates at college. She is becoming more comfortable talking to others about having had a transplant.

Jon is doing well. Continuing in his studies & just being a normal 14 yr old boy, excuse me, young man.

Prayer list - Aiden, Haley, Savannah, Anthony, Tanner, Marcus, Romina and Jen & Jon.

Thanks for stopping by. We hope you have a blessed day.

With much love,

Karen

Wednesday, January 12, 2005 5:47 PM CST

Hello all

Jen & Jon's labs are back & both are good. Jen's liver #'s are doing very well so it seems like her liver is tolerating the steriod wean. She'll stay on a 2 week lab schedule for now to make sure all stays well. She saw the new Orthopedist today. He xrayed her knees & hips. X-rays were ok. He wants to do an MRI of her hips to make sure there are no surprises there, that's in 2 weeks. Joint pain is the same, tylenol several times a week but she just keeps on going no matter what. Kidney function is doing very well too. She really likes her Anatomy & Physiology teacher, he seems to be teaching in a style that Jen is enjoying & learning lots. So school is going well too.
For those of you who follow labs:
Ast 19
Alt 17
GGTP 21
Bili .5
Bun 15
Cr 1.0

Jon's labs are good too. His numbers are up from Jen's but still within normal limits for him. I don't compare their numbers to each other, it's like comparing apples & oranges. But I am very comfortable with Jon's labs.
Ast 60
Alt 59
GGTP 40
Bili .6
Bun 9
Cr .8
Jon's schooling is going as well as can be expected. No more ADHD meds for him. The meds changes are just not working out for him, so we go it without again. This week has been pretty good tho. And I decided to skip fractions & move on to other concepts in Math. This seems to be the trick with Math, I guess I was to subborn about him learning everything about fractions perfectly before moving on. He is continuing to grow like a weed. His men's size 8 shoe is getting small. Mark wears a 10 so Jon may very well catch him. Jon is only about 2 inches shorter than me now!

Prayer list - Jen & Jon, Haley, Aiden, Tanner, Anthony, Savannah, Marcus, Romina, Ismari(these are all our liver friends).

Thanks for stopping by to check on Jen & Jon, don't forget to sign the guest book so they know you stopped by.

With much love,

Karen

Saturday, January 8, 2005 4:55 PM CST

Hey all

Jen & I started winter quarter classes this past week. Jen has intermediate document processing, advanced anatomy & physiology and psychology. I have English & medical terminology. It seems weird to be back in the college game at 44 years old. Several of the students in my English class are Jen's age.

Medically speaking - Jon is fine, thank you Lord. He has labs again on Wedneday as does Jen. Still have not heard from the docs on what Jen's ANA results mean. But my research leds me to believe they are within what's considered normal range. Must be or I'd think the docs would have called too. As far as joint pain goes she had a bad week between Christmas & New Years. She had to take tylenol 4 different days & one of those days twice. However since then she's only taken tylenol once. She has an appointment for a second opinion with an orthopedist on Jan 21st. After that appointment she is to follow up with her pediatrician. As I said in the last update, her liver seems to be happy with the lower dose of steriods. Those labs were after 2 wks of the lower dose, hopefully this weeks labs coming up will also be good.

Prayer requests - Jen & Jon, Haley, Aiden,Tanner, Anthony, Marcus, Savannah, Gracie. These kids are all liver friends of ours.

With much love,

Karen, Mark, Jen & Jon

Thursday, December 30, 2004 9:55 AM CST

Today is a day of celebration at our house. Jen is 2 years post 2nd liver transplant today. Here's a brief synopsis of what's happened in the last 2 years.

- transplanted with a peld of 13, waited just over 4 months
- neurologically not responding, CT done, MRI attempted(staples still in MRI was cancelled), it was pain meds
- acute kidney failure required CVVH(dialysis)
- weight loss, required feeding tube(only 1 week!)
- 4 rejection episodes
- 3 biopies
- lifeflighted to transplant Center, admitted to PICU(urinary sepsis)
- return of cataracts due to steriods
- fluctuating kidney function
- currently experiencing joint pain of increasing frequency, now requiring tylenol several times a week

----BUT---- also in last two years --- this is the part I am most greatful for!

- is 2 years post 2nd transplant
- has been typical ornery teenager
- graduated high school
- completed 3 quarters of college
- is weaning down on steriods(pray here, labs yesterday)
- last lft's were the best she has had in her life
- kidney function is ok(pray here, labs yesterday)
- has managed to maintain a great attitude after all she's been through

Speaking of her attitude... She amazed me 2 years ago when we told her she needed another transplant. She said "ok, let's do it & get it over with." She just takes what life brings and just keeps on going. She reminds me of a timex watch, takes a licking & keeps on ticking. I thank God for her attitude about life. I thank God for her life. I thank her two donor families for giving her the gift of life twice. And I thank each of you who come for updates on Jen(& Jon) & keep both in your thoughts & prayers.

we are waiting on labs results. Hopefully her liver is tolerating the decrease in steriod dose. We are also still waiting on her ANA(auto immune) lab results too. Her joint pain is getting worse & she is taking tylenol several times a week now. We are waiting on our pediatrican's office for a referral to have another orthopedist evaluate her hips & knees. We had a nice quite Christmas and hope you all did too.

AFTERNOON UPDATE: labs are back, liver looks great, kidneys are ok(cr up to 1.2 but not unusual for Jen). ANA, I honestly don't know what to make of the numbers. I will contact the docs on Monday to see if we need to pursue further evaluation. So, so far it looks like her liver is doing ok with the decrease in steriods.

Please remember Jen & Jon in your prayers, as well as our friends Haley, Aiden, Tanner, Anthony, Savannah, CamaronBeu and Jen's donor family as they face another anniversary of their own.

Thanks for stopping by, don't forget to say hello in the guestbook for the kids.

Happy Anniversary, Jen, I love you.
Make God bless you all.

Karen

Friday, December 17, 2004 1:53 PM CST

Hello all

First, I want to say Happy Birthday to my brother Jimmy(Jen & Jon's uncle)in Rochelle, Georgia. See ya tomorrow.

The kids had their transplant clinic visit on Wednesday. Jen's labs were very good.
Ast 12
Alt 9
ggt 29
bili .4
bun 22
cr .9
This is the best I've ever seen her liver numbers in her life. And her kidneys are happy too. The docs are decreasing her steriod dose to 2.5mg daily to help with the side effects she is experiencing(i.e cataracts, bone issues). She will get labs the Monday after Christmas & will need labs every 2 wks for a while to make sure her liver tolerates the change.

The Dexascan was done & surprisingly, shows normal results. She could still have avascular necrosis tho. She returns to transplant clinic in March. Provided her pain does not get past the point where tylenol will not control it, we'll wait until March to persue MRI's of her joints. She did have extra labs done to check for any auto immune problems, hopefully none will be found.

Jen is on Christmas break from school until Jan 6th. Her classes in Jan will be Advanced antomy & physiology, Psycology & website design tools. I will also start school in Jan too. I will be taking Medical terminology & an English class. This will be the first step for me to return to the working world come Jan of 2006.

Jon's labs were good for him.
Ast 50
Alt 59
ggt 30
bili .5
bun 13
cr .8
Jon's liver numbers are good for him. He can now go to labs every 2 months. Thank God, he remains very stable(knock on wood). His reflux is still an issue for him. The protonix is protecting his esophagus & the only thing else that can be done is surgery. We are not ready for that yet. We will add zantac on a daily(not as needed) basis to see if it will help.

Overall, a good report. The only thing that really bothered me was the letter we asked for, listed Jen's prognosis as guarded. That took me by surprise seeing it in black & white. But I don't have to think for long to remember how fast things can change with her. Hopefully her liver will tolerate the steriod decrease, her kidneys will remain stable & her joint pain won't get worse, lots to remain in prayer about. Lots to remember how blessed she is.

The cookbook is at the cookbook printing company now. It takes 30 to 40 working days, so it will be February before they come back. Our prepaid orders total 97 & we ordered 200 so we will have plently of extras. Right now we don't have any fund raising events planned, if anyone has any ideas, wants to organize something or help in anyway just let us know. We are very open to ideas. So far $2500 has been raised. Thank you all for your help with fund raising for Jen & Jon.

Please remember Jen & Jon in your prayers, as well as, Haley, Aiden, Tanner, Anthony, little & big Marisa and Savannah. These are some of our liver friends.

I will posted again when we have any new news. Or when Jen gets labs after Christmas. We hope you all have a very Merry Christmas and a Happy New Year!

With much love,

Karen, Mark, Jen & Jon

Friday, December 17, 2004 1:53 PM CST

Hello all

The kids had their transplant clinic visit on Wednesday. Jen's labs were very good.
Ast 12
Alt 9
ggt 29
bili .4
bun 22
cr .9
This is the best I've ever seen her liver numbers in her life. And her kidneys are happy too. The docs are decreasing her steriod dose to 2.5mg daily to help with the side effects she is experiencing(i.e cataracts, bone issues). She will get labs the Monday after Christmas & will need labs every 2 wks for a while to make sure her liver tolerates the change.

The Dexascan was done & surprisingly, shows normal results. She could still have avascular necrosis tho. She returns to transplant clinic in March. Provided her pain does not get past the point where tylenol will not control it, we'll wait until March to persue MRI's of her joints. She did have extra labs done to check for any auto immune problems, hopefully none will be found.

Jen is on Christmas break from school until Jan 6th. Her classes in Jan will be Advanced antomy & physiology, Psycology & website design tools. I will also start school in Jan too. I will be taking Medical terminology & an English class. This will be the first step for me to return to the working world come Jan of 2006.

Jon's labs were good for him.
Ast 50
Alt 59
ggt 30
bili .5
bun 13
cr .8
Jon's liver numbers are good for him. He can now go to labs every 2 months. Thank God, he remains very stable(knock on wood). His reflux is still an issue for him. The protonix is protecting his esophagus & the only thing else that can be done is surgery. We are not ready for that yet. We will add zantac on a daily(not as needed) basis to see if it will help.

Overall, a good report. The only thing that really bothered me was the letter we asked for, listed Jen's prognosis as guarded. That took me by surprise seeing it in black & white. But I don't have to think for long to remember how fast things can change with her. Hopefully her liver will tolerate the steriod decrease, her kidneys will remain stable & her joint pain won't get worse, lots to remain in prayer about. Lots to remember how blessed she is.

The cookbook is at the cookbook printing company now. It takes 30 to 40 working days, so it will be February before they come back. Our prepaid orders total 97 & we ordered 200 so we will have plently of extras. Right now we don't have any fund raising events planned, if anyone has any ideas, wants to organize something or help in anyway just let us know. We are very open to ideas. So far $2500 has been raised. Thank you all for your help with fund raising for Jen & Jon.

Please remember Jen & Jon in your prayers, as well as, Haley, Aiden, Tanner, Anthony, little & big Marisa and Savannah. These are some of our liver friends.

I will posted again when we have any new news. Or when Jen gets labs after Christmas. We hope you all have a very Merry Christmas and a Happy New Year!

With much love,

Karen, Mark, Jen & Jon

Friday, December 10, 2004 9:56 AM CST

Hello all

I thought I would post an update on Jen's ortho consult. I picked up the Dr's notes so we'd have them for transplant clinic next week. There was more in the notes than what was discussed with Jen & I during the ortho visit. We will be discussing the findings with the transplant team next Wednesday & see what they recommend for further evaluation & treatment. The notes state that her pelvis & bone structures are very, very washed out, very, very thin to almost non existent cortex structure. He further states that he doesn't see any actual avascular necrosis in her hips but it wouldn't be surprising based on her situation at this time. Also that she has cyst formation in both knees & may have impending avacular necrosis in her knees was well.

What does all this mean you may ask? Well, we are not sure & hope to get more answers at clinic next week. It is very concerning & Jen may need to look at another major if her lifting abilities are limited. This maybe a long term side effect from steriods. Please keep Jen in your prayers about this situation. I am somewhat bummed out about all this especially after doing some research online, I am trying to remember what we were told before the first transplant, "you trade one set of problems for another, the difference being that without transplant your child dies, with transplant there can be many complications, side effect from meds or treatment but your child lives." So we'll take the post transplant issues anyday.

Jon's ADHD meds are not working out. The increase in dose actually zombied him out. So we are stopping it. We'll re-evaluate the situation after the first of the year. Both kids get labs next week before transplant clinic. And Jen has a dexascan schedule right after clinic too.

FUND RAISING - Cookbook orders are up to 97, thank you all so much. Our minimum order is 200 so there will still be plenty left over if anyone wants one. We also want to thank everyone who's donated to Jen & Jon's transplant fund. Special thanks to the Cordele Girl Scouts for the bake sale they did. They raised over $500 during the bake sale. What a special group of girls.

Prayer requests: Jen & Jon, Aiden, Haley, Tanner, Anthony, Savannah(she got her new liver yesterday), Savannah's donor family too.

If you haven't checked out the photo's please do so. I've finally learned how to post pix. Thanks everyone for stopping by, don't forget to sign the guestbook, the kids love seeing who's stopped by.

With much love,

Karen

Friday, December 10, 2004 9:56 AM CST

Hello all

I thought I would post an update on Jen's ortho consult. I picked up the Dr's notes so we'd have them for transplant clinic next week. There was more in the notes than what was discussed with Jen & I during the ortho visit. We will be discussing the findings with the transplant team next Wednesday & see what they recommend for further evaluation & treatment. The notes state that her pelvis & bone structures are very, very washed out, very, very thin to almost non existent cortex structure. He further states that he doesn't see any actual avascular necrosis in her hips but it wouldn't be surprising based on her situation at this time. Also that she has cyst formation in both knees & may have impending avacular necrosis in her knees was well.

What does all this mean you may ask? Well, we are not sure & hope to get more answers at clinic next week. It is very concerning & Jen may need to look at another major if her lifting abilities are limited. This maybe a long term side effect from steriods. Please keep Jen in your prayers about this situation. I am somewhat bummed out about all this especially after doing some research online, I am trying to remember what we were told before the first transplant, "you trade one set of problems for another, the difference being that without transplant your child dies, with transplant there can be many complications, side effect from meds or treatment but your child lives." So we'll take the post transplant issues anyday.

Jon's ADHD meds are not working out. The increase in dose actually zombied him out. So we are stopping it. We'll re-evaluate the situation after the first of the year. Both kids get labs next week before transplant clinic. And Jen has a dexascan schedule right after clinic too.

FUND RAISING - Cookbook orders are up to 97, thank you all so much. Our minimum order is 200 so there will still be plenty left over if anyone wants one. We also want to thank everyone who's donated to Jen & Jon's transplant fund. Special thanks to the Cordele Girl Scouts for the bake sale they did. They raised over $500 during the bake sale. What a special group of girls.

Prayer requests: Jen & Jon, Aiden, Haley, Tanner, Anthony, Savannah(she got her new liver yesterday), Savannah's donor family too.

Thanks everyone for stopping by, don't forget to sign the guestbook, the kids love seeing who's stopped by.

With much love,

Karen

Friday, November 26, 2004 11:54 AM CST

HAPPY BIRTHDAY TO JON

Jon is 14 years old today. He weighed 9lbs 1.4 oz and was 21 inches long at birth. He now weighs 100 lbs and is 5 feet tall. What impressive growth for a baby that almost didn't make it pass the seventh day of life. Then didn't grow well at all. He weighed only 16lb 10z at 1 year old. At 27 months old, when he was transplanted, he weighed 25lb. He looked and acted like a 1 year old when he was transplanted. That new liver totally turned his life around. Thank God his donor family decided to donate their loved ones organs. We would like to encourage all who visit Jen & Jon's site to consider being an organ donor & be sure to tell your family your wishes.

Jen is doing well right now. Her last labs were good. Her joint pain is tolerable & she is enjoying the week long Thanksgiving break from school. She will only have 3 weeks left before Christmas break.

Coming up in December, both kids have dental appointments, transplant clinic, labs and Jen will have a dexascan.

We want to thank all those who have sent in recipes and/or ordered cookbooks. We have decided to order extra books so if anyone still wants one we will have extras, just let us know. The books should be back from the printers in February. As soon as we get them we will mail them out to those who've ordered.

Please continue to rememer Jen & Jon in your prayers as well as Aiden, Haley, Tanner, and Anthony. Thanks for stopping by to check on Jen & Jon.

With much love,

Karen

Monday, November 22, 2004 9:03 AM CST

Hello Everyone

Thanksgiving is only 3 days away. I thought I would post about what I am are thankful for.

T - Transplant teams(Dallas & Atlanta)
H - Husband
A - All 3 donor families
N - not having either child inpatient
K - kids
S - Salvation
G - God
I - Interesting life
V - Very nice friends
N - Normal labs for Jon
G - Girl Scouts

There was a nice article in the Cordele Dispatch(we moved from Cordele after Christmas last year)about Jen & Jon's situation. Girl Scouts in the Cordele area held a fund raiser for Jen & Jon. Another troop there helped with cookbooks too. We are most humbled by the love & support of these girls & their leaders. In our hearts, all these girls have earned their "Gold" award. We say thank you so much to each & every one of the girls and to Shellie & Vickey. These troops truly know what Community Service means. Cordele is very lucky to have these girls and their leaders as citizens.

Please continue to remember our liver friends in your prayers. Aiden, Haley, Tanner, Anthony & Jen & Jon. Checkout the new pix in the photo album. I'm finally learning how to scan & post pix.

May you all have a Safe Happy Thanksgiving and may God bless you all.

With much love,

Karen, Mark, Jen & Jon

Friday, November 19, 2004 4:29 PM CST

Hello all

Both kids had labs last night. Jon's numbers were all great. He has a return appointment to the pediatrician on Tuesday about his ADHD. Ritalin is working somewhat well. He gets a break on the weekend so his appetite has not been affected to much. He is now 5 feet tall, he may out grow Jen, he only has 1 more inch to catch up to her. He wears a men's size 8 shoe now. He sees the transplant team next month at the same time as Jen.

Jen's labs - Liver numbers are very good. And, praise God, her kidney numbers are down too. The lowered dose of Prograf seems to be working. We don't have the prograf level yet, it takes 2 days to come back. But the liver seems happy & kidneys too so she gets to go to once a month labs! Yeah!!! Her poor veins will get a rest.

Jen couldn't get the dexascan done yesterday, the office in Dalton didn't have the software to do a patient under 21 years old. So now she has an appointment at Egleston after transplant clinic for the scan on the 15th of December. This scan will tell whether or not she has osteporosis. It will not explain her joint pain, which continues. Most days it's not to bad, she just keeps going. Twice now tho, she's had major episodes & requires something for pain & has to rest until the pain subsides.

We want to thank the many people who have helped us with cookbook orders. We needed to pre sell as close to 100 as possible so we could order the minimum of 200. As of today the total is 86 orders. THANK YOU, THANK YOU. Special thanks to Lisa, Debbie, Vickey, Gail & CLASS moms.

Thank you all for stopping by to check on Jen & Jon. Please remember them in your prayers as well as our liver friends Aiden, Haley, Tanner & Anthony.

With much love,

Karen

Sunday, November 14, 2004 7:12 PM CST

Hey all

Our church had a very nice program for the Veteran's during the morning service. It was so nice to see all the men who've served our Country stand & be recognized. There was also a slide show, some of the men served during WWII, it was neat to see those photos.

Jon went to Startime Entertainment & Whirly Ball of Atlanta today after Church with the 13-16 teen transplant group. He had a blast playing whirlyball, putt-putt and all kinds of interactive video games. We are very lucky to receive transplant care from a hospital that has active support groups for the kids. There were kids there today who've received liver, kidneys, hearts & one who's received a liver, kidney & small bowel. It it amazing to see those kids laughing & playing & just having a good time. Oh, the power of prayer & what it can accomplish in the lives of children.

Jen's prograf dose was decrease to 3mg to give her kidneys a break, hopefully her labs this week will show a lower creatine level. She had another episode of serve joint pain last night, hips & knees . She had a headache & was nauseous but no fever. She took tylenol, stayed quiet and after several hours it passed. We don't know what is causing these episodes. She is scheduled for a dexascan on Thursday to see if she has osteoporosis. But osteoporosis should not cause joint pain tho. Please keep her in your prayers that whatever this is resolves soon.

Jon started on Ritalin & it seems to be working some what. His appetite has been affected but we don't give it on the weekend so his body has a break & he eats like a horse.

Well, time for evening bible study, thank you all for stopping by. Please remember Jen, Jon, Aiden, Haley, Tanner and Anthony in your prayers, they are our liver friends. Thank you all who prayed for my friend Tee, she passed away from end stage liver disease on Friday. Please remember her family in your prayers.

With much love,

Karen

Monday, November 8, 2004 5:01 PM CST

Hey all

I am learning how to load pix to the site. Sorry they are big. Check out the pix of Jen & Jon in 1993 in the photo album section. Thanks to Jen & Mark for helping me learn this stuff.

We are still praising the Lord in our house this week for the news we got last week about the insurance. It is such a relief knowing that the new insurance will cover the kids in January when we switch. At least we are back to the original deductible, copay & max out of pocket of $10,000.

Fundraising is going slow so far, but we've just gotten started. Cookbook orders are still coming in as well as recipes too. Thanks all!!! Remember the deadline is the 15th of November.
We will still take book orders after that but no more recipes can be included after that date. We will have
plently of extra books for anyone still wanting them.

Ok - on to the news about Jen & Jon.

Jen - Her labs are back and her liver numbers are great!
ast - 17
alt - 24
ggt - 19
bili - .6
prograf 15
Kidney numbers definitely could be better. Her bun is 30 and cr is 1.4 Her cr has not dropped below 1 in two months. So we continue to watch her kidneys as usual. She is also still having joint pain, although not every single day, thank God. She only has about 5 1/2 weeks left of this quarter, then she's free until January. Her plan is to get her driver's license during Christmas break. Stay off the roads around North Georgia in December. Ha Ha

Jon - Jon's back on ritalin. That's what the peds suggested we try this time. He needs labs in the am to check CBC & cholestrol. It's been a LONG time since his cholestrol was checked. These labs are because of the ritalin. Today was his first day of ritalin & he's definitely not as agrumentive as he usually is but his appetite is down. This is usual for Jon on ADHD meds. We'll have to see how it goes. He goes back to the peds in 2 weeks for a check.

Thank you all for checking in on Jen & Jon. Our prayer list now includes: Aiden, Haley, Anthony, Tanner, Tee, Jen and Jon.

UPDATE - Jen's prograf dose has been decrease to 3mg bid in order to give her kidneys a break. She is scheduled for a Dexascan next week to if she does have osteoporosis. I feel like saying stay tuned next week for the next installment of Jen's medical saga. Can you tell this is all starting to get to me???? I am grateful that she is as stable as she is tho, I know it could be much much worse.

With much love to all,

Karen

Thursday, November 4, 2004 3:48 PM CST

THIS IS A PRAISE THE LORD DAY FOR THE LINCOLN FAMILY

I found out that our original information that the insurance company we will be going with in January CANNOT invoke the pre-existing condition clause was TRUE!!!. I was able to get this verified through the Georgia State Insurance Commissioners office. It has been a roller coaster ride trying to get information about programs, insurance, pre-existing conditions, copays, etc. We are so relieved. Reaching a fund raising goal of $10,000 looks a whole lot better than $40,000 to $50,000. The power of prayer does work! Thank you to all who have been praying for this. I truly feel this is an answered prayer.

The cookbook is slowly coming along. There is still time to get those recipes and/or orders in. The deadline is November 15th. I get so hungry everytime I type in recipes received. I've got to try some soon. Ya'll keep 'em coming.

Now for the medical stuff. Jen is having some issues with her knees, ankles, & hips. She saw the orthopod doc Wednesday & he said her bones look "washed out". He recommended a dexascan. We are awaiting word from the transplant team as to what to do next. She said she will not be going anywhere anymore without tylenol. The good thing is that it's not absolutely everyday she has pain. I am so glad she has a positive attitude. She said one of her online friends said that she(Jen)has an annoyingly positive attitude. I say, good for her. She has labs tonight, should have results by tomorrow afternoon.

Jon's appointment for referral for further ADHD/learning disablities is tomorrow. He is finally over his cold/viral illness. He is still struggling with his school work. He is featured on the Tumbleweed site this month. If you'd like to check it out it's www.tumbleweedfoundation.org

Prayer list - Liver friends, Aiden, Haley, Tanner, Anthony, & Tee. And of course, Jen & Jon. We appreciate your prayers so much. We can see the results in our lives each day.

May God continue to bless you all, Karen

Monday, November 1, 2004 4:19 PM CST

Hey all

We hope you all are doing well.

JEN will be getting labs on Thursday after school so we hope to have results by Friday some time. Hopefully her liver numbers will still be normal and her creatine(kidney)will be back down in the normal range. We are watching her kidney numbers carefully, she likes to bump up out of the normal range here & there. We are hoping that the increase in rejection medication will not keep her kidney numbers above normal permanently. It's that fine line again I've talked about before. Keeping the rejection meds high enought to prevent rejection of the liver but not cause permanent kidney damage. The fluid retention she had in her feet & legs with the first med for high blood pressure seems to be coming back, along with fluid in her fingers & hands. We are waiting to see if this will settle down. This is the 3rd blood pressure med she's tried. She keeps "finding" the side effects of each one. That's our Jen, she keeps us and the docs on our toes. But we are so grateful to be on this side of transplant tho. Being post transplant means being alive, new set of issues, but we'll take that & deal with anything & everything that comes our way, for with a transplanted organ, comes LIFE!

JON's labs last week showed his alt to be up in the 70's but we are not worried yet. He had a cold/sinus virus the week before & that alone can cause a bump in liver numbers. His appointment to assess his ADHD is this Friday. By the way, Jon is one of the featured kids on the Tumbleweed site. Please go check it out. I was so tickled when I found out that they were going to feature him. Jon was very excited. Here's the email address: www.tumbleweedfoundation.com Sorry I don't know how to make it an active link, you'll have to type it in.

We are still getting some recipes and cookbook orders. It's slow going but steady. I have already begun typing in recipes to save time. Thank you all for the recipes and/or orders. Also thank you all who sent in donations to help with Jen & Jon's liver fund.

Prayer list - Liver kids, Jen, Jon, Aiden, Haley, Tanner, Anthony, and I would like to ask for special prayers for Tee. Tee is an adult that I know thru the net. She was waiting for a liver transplant but has been moved to hospice as she is too ill to receive a liver transplant. May God be with her & her family and friends. I am trying to go visit her this week, please pray for me to know what to say as I visit with her.

Thank you all who keep our family in your prayers. It means so much to us. May God continue to bless you all.

with much love, Karen

Sunday, October 24, 2004 7:50 AM CDT

Tuesday(Oct 26)update
Jon's labs are back. His alt is up to 70 but his ast is still in the 50's. He has had a cold type thing going on so hopefully that's why his alt is up some. All his other numbers are very good. Just keep him in your prayers that it's just viral not something with his liver. Thanks for checking in. Got more recipes and orders in the mail today, thank you all.
love, Karen

Monday update(Oct 25)
I forgot to mention that Jen's potassium level is down to normal. It was her blood pressure medication causing it to rise. So far we have not seen any side effects with the new med.

Ok, for the REALLY BAD news. I got info at the Wellness(Transplant) Conference I attended this past weekend & had it confirmed this morning that the insurance plan we will switch to in January 05 will invoke the pre-existing
condition clause. This means we will be paying premiums for 2005 and all of the cost of their transplant related medical expenses. That's $40,000 minimum, just labs & meds, and a few doctor's appointments,this does not include eye doc visits, admissions etc. We are so STRESSED, but with the Lord's help and with help from our friends, family, and others we will find a way to meet those expenses so they can stay well. Just keep us in your prayers & thank you all who keep us in prayer. We have started receiving recipes and donations. Thank you, Thank you, Thank you. We appreciate your support & prayers. May God bless you all.

with much love, Karen, Mark, Jen & Jon

Sunday, Oct 25th
Jen lab results are in. Her liver numbers are very good. Her kidneys are much better. Her creatine is 1.2 which is just above normal so we are happy with that. Her blurried vision has lessened but her knee pain is becoming more frequent. If it continues we'll have her knees checked out. She has not missed any classes so far this quarter, please keep her in prayer that she will continue to stay well.

Jon is doing well. He has an appointment this Friday to get referrals for more testing for learning disabilities and further evaluation on his ADHD.

Thank you so much to those who have responded with requests for recipes and/or ordered cookbooks. We have already received some great recipes, I can't wait to try some out.

While I'm talking about prayers please keep our liver friends Haley, Aiden, Tanner & Anthony in your prayers too.

Thanks for checking in on Jen & Jon. We appreciate all the support, you all are so wonderful to think of us.

Love, Karen

Tuesday, October 12, 2004 4:17 PM CDT

Hello all

Jen's labs are in. Her lft's(liver) are up some but still within normal limits. Her kidney function looks ok too. Her potassium level is up to 6.2, yikes. But we were told to change her bp med. So we'll make the change & hopefully her level will be down at the next lab draw. And she gets to go to 2 weeks apart on lab draws, YEAH!!!

I got cookbook forms out on Saturday and today to all those who've asked so far. Please let us know if you are interested & we'll get forms out asap to you. Thanks.

Please remember our liver friends Haley, Aiden & baby Tanner. Thank you all for your prayers for Jen & Jon.

love, Karen

Tuesday, October 5, 2004 2:49 PM CDT

Hey everyone

Sorry for taking so long to update. We moved last week into another house & didn't have phone or internet services for a while.

Jen's liver numbers are looking good. Her kidney's are also pretty good, her cr is hanging in at high normal but still it's normal. The thing of concern now is her potassium level. We've been asked to watch & limit her intake of potassium rich foods but we don't see that she's eating anything rich in potassium. Diet restrictions are the first step to help, next could be adding or taking away meds. We are waiting for the transplant team to decide if she's at the level that needs further intervention. She is very moody lately. I do feel it is the steriods but we all just have to deal with the mood swings as best as we can. She feels fairly well, some fatigue & stress. Classes started back last week. She's got a heavy load this quarter, Anatomy & Phyisology, Medical Terminology, & a Computer apps class. Please keep her in your prayers that's she stays well. She is getting the Hope grant for tuituion assitance & can't afford to drop any more classes without losing her Hope Grant. She had to drop 2 classes last quarter because of getting sick & it did effect her GPA(doesn't seem fair but...)

Jon had labs last week & thank God, his liver is doing well. He is experiencing great difficulties with schooling & we will soon go thru another eval to see about meds to help with concentration AGAIN. I also want him tested specially for a learning disablity in Math & possibly in reading too. I've seen progress but it seems like 2 steps back for every 1 forward. Physcially as I said he is doing well & is growing like a weed. He now wears a men's size 8 shoe! He is 5 ft tall. I know he will be taller than Jen, maybe even me too.

Now for fund raising news. We are going with NTAF for a fund raising account administration. I've sent off the app to the team social worker & as soon as I know he's sent it on off to NTAF I will send out info on Jen & Jon's cookbook. So far that's all we have got on the agenda for "events". Please let me know if you would like more info on submitting recipes or ordering a cookbook. Our email is now threelivers@att.net
NTAF will open an account for the kids when they receive our app & the first donation is received in their office. They will also have Jen & Jon's campaign listed on their website after the first donation is posted in their name. We are hoping & praying to at least raise our minmum goal of $10,000. Wish us luck.

Please remember our liver friends in your prayers, Aiden who has severe allergies in addition to having had a liver transplant and Haley who is waiting on a liver transplant. Thank you all for keeping Jen & Jon in your thoughts and prayers.

love, Karen

Thursday, September 23, 2004 12:29 AM CDT

Hello everyone

We spent last weekend at family transplant camp. 2nd year for us. We loved it. I learned some new info from the "education" classes. It was great to see our friends, especially Aiden & Haley. Please remember both in your prayers. Most especially Haley, as she's waiting on a liver.

Jen was able to take her final exam, make up a missed test & get her CPR certification, so she finished her class. Grades are not posted yet. She feels pretty confident that she got at least a B for a final grade. Should have that grade by next week. Fall quarter starts next week. So she'll be back to the college grind.

Jen's labs - KIDNEYS - Jen's BUN(kidney function test) has been up & down. It peaked on Tuesday at 44 but today's level was 34 which is still high. Her cr(kidney) peaked on Tue at 1.4 but today is 1.2. Still high but her prograf level on Tue came back today & was high so as of tonight(Thur) her prograf dose will decrease to 4mg bid. HOpefully that will help out those kidney numbers. We are still right where we were the last time I posted an update(as far as her kidneys go). Meaning that she is still at a higher risk of kidney failure than the average transplant patient. So we are still walking that tight rope between keeping her body from rejecting her liver & her kidneys from being prograf toxic. That darned prograf, gotta love it & hate it at the same time. It's great at preventing rejection but too much can be toxic to the kidneys. So continues this lifelong balancing act to keep both the liver & kidneys happy.

LIVER - It's seems to be very happy. Ast, Alt, are in the teens & 20's. Gttp is down to 60. We are very happy about this. Yeah, doing the liver is happy dance here. Jen is to get labs again on Monday.

So she is still at twice a week lab draws. With today's draw she has had labs 31 times so far in 2004. It costs(depending on the hospital)between $468 & $628 each time!!! Her 6 days admission at the beginning of this month was $13,600 something dollars. That's just the hospital bill. See why we desperately need to fund raise!!!

(I am copying the next section from the last update) As you can see from the above Jen will always need very frequent medical care & thus the need for us to fund raise. Soon I will be sending out letters to everyone asking for help. Whether it's sending recipes for cookbooks, purchasing a cookbook, organizing any event you feel comfortable doing for Jen(& Jon), possibly selling ads in your local area for the cookbook, etc, or working an event that someone organizes. Or anything you would like to do on Jen & Jon's behalf.

This is our long range plan. Since Jen will lose her peachcare coverage in Jan we will enroll in group health insurance thru Mark's employer. It will cost at least $10,000 per year with premiums, co pays & deductible. This is an estimate without any admissions, just labs, premiums, meds, & doctor visits. We hope to, at least, fund raise enough to cover 2 years($20,000 minimum, remember this does NOT include any admissions). In January 2005 I plan on going back to school for a year. Then get a job working as a medical coder in a hospital or doctor's office. After my becoming employed my income would hopefully cover the insurance premiums, co pays & deductibles each year. Jen in 2-3 years should be finished with school & have her own insurance. She will probably have to live at home to cover her medical expenses with her income(us providing room & board). But we would still have Jon to cover & while he is doing well now(thank you Lord) he is at risk for liver disfunction due to an infection contracted after his transplant. That is why he gets liver biopsy's every 3-5 years or so. His last biopsy showed no significant fibrosis(this is good). If you have any suggestions, comments, or questions please feel free to email us. Our email link is below.

Ok, off my soap box about fund raising. Jon is doing fine. He gets labs next week, only monthly. Schooling is behind due to Jen's admission & extra labs. But we'll get him back on course as quickly as possible.

We love you all.

Karen, Mark, Jen & Jon

Friday, September 10, 2004 5:59 PM CDT

Hello everyone

This update should cover all that has happened recently. Jen was admitted to Egleston on Wed, Sept 1st. Her liver function tests were elevated. She had a biopsy which showed moderate rejection. She was given an IV bolus of solumedrol Wed eve. She normally takes 5mg a day of steriods. The solumedrol was 1000mg of steriods. As you can see this is a huge dose to knock out the rejection. Her cellcept dose was also increased from 250mg twice a day to 1000mg twice a day. Her oral steriod dose was not increased because of her cataracts. Which, if I have not let you all know, are back. She will get new glasses in a couple of wks but her right eye may not be clear because of the cataract in it. She will be getting rechecks every 6 months instead of yearly.

Anyway, even after the first solumedrol bolus her numbers got worse & she required another IV bolus of steriods the next day. Her numbers then stabilized & finally started a slow, very slow downward trend & she was released on Mon Sept 6th to the Ronald McDonald house. She had to get labs done daily thru Friday Sept 10(today). She was released from the Ronald McDonald house today after labs.

Her labs today continue to show a slow but downward trend. She is to get labs twice a week for a while. She's due Sunday eve for labs, she will return to transplant clinic on Wed the 15th & get labs then also. On Friday we will all go to Transplant family camp weekend. This break for our family could not come at a better time, thank you Lord!

Jen's bun(1 kidney function test) is up to 40 today so we will also be watching her kidney function closely too. Which we do anyway since she had acute kidney failure after both liver transplants. But at least her creatine(another kidney function test) is ok at 1.0 This, unfortunately, puts Jen at a higher risk of kidney failure than the average transplant patient(i.e. Jon). This is where we walk a tight rope between keeping her body from rejecting her liver & her kidneys happy. The drugs to prevent rejection can be toxic to the kidneys. This will be a lifelong balancing act for Jen.

As you can see from the above Jen will always need very frequent medical care & thus the need for us to fund raise. Soon I will be sending out letters to everyone asking for help. Whether it's sending recipes for cookbooks, purchasing a cookbook, organizing any event you feel comfortable doing for Jen(& Jon), possibly selling ads in your local area for the cookbook, etc, or working an event that someone organizes. Or anything you would like to do on Jen & Jon's behalf.

This is our long range plan. Since Jen will lose her peachcare coverage in Jan we will enroll in group health insurance thru Mark's employer. It will cost at least $10,000 per year with premiums, co pays & deductible. This is an estimate without any admissions, just labs, meds & doctor visits. We hope to, at least, fund raise enough to cover 2 years($20,000 minimum, remember this does NOT include any admissions). In January 2005 I plan on going back to school for a year. Then get a job working as a medical coder in a hospital or doctor's office. After my becoming employed my income would hopefully cover the insurance premiums, co pays & deductibles each year. Jen in 2-3 years should be finished with school & have her own insurance. She will probably have to live at home to cover her medical expenses with her income. But we would still have Jon to cover & while he is doing well now(thank you Lord) he is at risk for liver disfunction due to an infection contracted after his transplant. That is why he gets liver biopsy's every 3-5 years or so. His last biopsy showed no significant fibrosis(this is good).

If you have any suggestions, comments, or questions please feel free to email us. There should be a link below.

Jen got good news about school. She should be able to make up a test & final exam, skills check offs, & CPR certification on Monday. She will then be finished with her 2nd qtr of college. She started out this qtr with 3 classes & as she got sick had to drop 2 & almost had to drop this last class but, again, the Lord blessed her & it's all working out.

I'll close this novel now. We love you all & will give updates on Jen as her condition warrants.

Karen

Thursday, September 9, 2004 4:11 PM CDT

First of all, I messed up yesterday's entry. Her dose was increase not decreased. I had a very bad day yesterday.

Now for the good news. WE ARE GOING HOME TOMORROW!!!!
Jen will get labs tomorrow & we are out of here. Today's labs were a little better & the transplant team feels she is trending down & make take a little time to get all the way back down to normal. We'll still watch her closely. She is to get labs on Mon(Sun eve) & Thursday. so twice a wk for a while.

Good news on the school front too. Jen finally got ahold of her instructor & was told she could make up the final exam on Monday & pay her fee for CPR & she'll finish the class without having to drop. Yeah, this was such a huge concern, dropping the class would have upset her whole schedule.

I also got news yesterday that we have a choice on national fund raising organizations that will administer a fund for the kids. We knew COTA would & now have found out that NTAF National Transplant Asstistance Fund will also do post transplant patients. So we are waiting for the info package to arrive & decide which organization to go with. Then we'll send out letters to everyone on what we'll be doing for fund raisers. If you'd like to be included & are not sure I have your address please click on the email link below & give us your address & we will be glad to send a letter to you, thanks.

Please remember Haley & Aiden in your prayers. And Curtis, Andrew, Sami, Anthony, some more of our liver friends in your prayers too. Thanks for stopping by. love, Karen

Thursday, September 9, 2004 4:11 PM CDT

Wednesday, September 8, 2004 12:33 AM CDT

Hello everyone

Jen's prograf level was lowered last night but this mornings level was higher. Why????? This is so frustrating, more so than getting the cyclosporine level adjusted after the first transplant. Hopefully tho,soon her body will get to the level she needs to be at. Her lft's are kinda stuck where they are. So, again, we wait for a call to see if the team wants to make an adjustment.

School - after some conflicting information Jen received the other day, we got some encouraging news. Jen will try to call her instructor at home tonight & see if she'll recommend Jen getting an incomplete & then Jen will have 90 days to complete the course. We are thinking of trying to plea bargin with the transplant team to see if there is a way Jen can NOT have labs done on Monday so she can make class. Monday is the final exam. Then all she should have to make up is the CPR day course & exam. This all hinges on what the instructor says. Of course, we hope & pray that Jen will be home by Monday anyway.

Well, got to go call someone about setting up this darned account for the kids so we can fund raise. I'm so frustrated now. I had a "mini meltdown" this morning, bad morning, to much going on at once. Ok, I'm off my soapbox/pitty party.

Please continue to remember Aiden & Haley in your prayers.Thanks for stopping in.

Karen

Tuesday, September 7, 2004 12:43 AM CDT

Well today I don't know what to think. Jen's labs were on a downward trend, now they seemed to have stablized not continuing down. I'm not sure why, maybe rebound rejection with all the solumedrol out of her system. Hopefully tomorrow's #'s will be down. Her prograf level has dropped down to 14.5 The transplant team wants her to run 15-20 so I'm waiting to hear if they want to adjust her dose or just see what tomorrows labs bring.

Still working on trying to set up an account for the kids. Still running into brick walls everywhere I turn. But I'll keep working on it.

Karen

Monday, September 6, 2004 10:20 AM CDT

Hey all

Jen has been paroled from Camp Egleston to the Ronald McDonald House. Her liver numbers are continuing to get better. It's her prograf level that is keeping us here in Atlanta. She will have labs on a daily basis until further notice.

Mark will bring JOn down to us tomorrow. At least we can get Jon back to homeschooling. He is now 4 days behind because of Jen's admission. OR as Jen says "it's not my fault talk to Sam. (she named her liver Sam -Stay Alive Mister).

thanks for your thoughts & prayers. Please remember our liver friends Haley & Aiden. Got some news on Mark's nephew it looks like his spinal injury may not be permanent. Please pray for a teenage boy we just met, he's also had 2 liver transplants & is recovering.

love you all, Karen

Sunday, September 5, 2004 4:02 PM CDT

Hey all

Jen's liver numbers are all trending down nicely. We are now waiting on the prograf level to stablize. Yesterday it was 30.3 & her dose was decreased. Today's level is 25 & no dose change. 25 is still to high, they want her at 15-20 so we'll see what the docs say tomorrow. I know they prefer 2 days of stable levels before discharge. We are hoping to go to the RM house soon. We can do daily labs at Egleston & Jon can join us. At home there is a 3 days turn around time on prograf levels.

Jen's made some friends today so her spirits are good. We are both stir crazy tho. Jen a while back named her liver. She calls it Sam(stay alive mister). Today she named her kidneys K & P(keep peeing). Can you tell we are ready to go home???

Please remember Jen, Haley & Aiden in your prayers. I also a special request for prayers, Mark's nephew was serving in Iraq & was injuried in a bomb blast. All we know is that he suffered a spinal cord injury, don't know if is permanent or howhigh the injury goes.

Thanks for checking in. Hope to update from home soon.

love you all, Karen

Friday, September 3, 2004 5:32 PM CDT

Jen had her 2nd IV bolus of solumedrol last night & her numbers are finally down some. No solumedrol tonight & we'll see what her numbers do in the morning. If ok they we might get to the Ronald McDonald House or ssshhh (home).

If up then more solumedrol again. This will be a lab playing game for a while now. Glad we live only 1 1/2 hours away rather than the 3 we used to. But man do I evey those families that live less than an hr away. Her spirits are good. Jon is having a difficult time with us away.

Still working on the fund raising account info. Ran into some walls on getting help here but I'll keep trying until I find it.

Please remember Jen in your prayers that this all settles down & she's home soon. And please remember Aiden & Haley.

love you guys, Karen

Thursday, September 2, 2004 2:14 PM CDT

Hey all

Jen was admitted yesterday & biopsy was done. Results show moderate rejection. She had one dose of solumedrol(HUGE IV dose of steriods) last night. Her prograf & cellcept have been increased quite a bit. Her med costs will go from $800 per month to $2300. Hopefully she will be able to wean down some soon. But first this rejection has to be brought under control.

Still waiting on labs from this am. Lab orders were messed up. The only labs run were ggtp which was a little higher & prograf which is now 20.

Gotta go get back to Jen. don't know yet when she'll be released. Will update when I can. Thanks for checking in.

Karen

Tuesday, August 31, 2004 3:55 PM CDT

Hey all

Lots going on here. Jen's liver numbers are up again.
They are as follows:
Ast 151(normal for her in the 20's)
Alt 151(normal for her teens' to 20's)
ggpt 240(normal for her in the 20's)

She's had fluctuating numbers for 4 wks now. At first the transplant team added another med (Actigall) & that seemed to help but now her prograf(main immunosuppressive drug) level is too low. Her dose has been increased but her numbers are still increasing. She is also having chest pain & now belly tenderness. The local pediatrician feels it's all related to whatever is going on with her liver.

Here is the plan: She will have a liver biopsy tomorrow & be admitted afterwards to recover(hopefully just overnight). Also labs will repeated in the morning too.
Hopefully it's just an adjustment on the meds & everything will settle back down.

We have appointments on the 16th to see if we can find someone who can help us set up an account at a local bank for fund raising. If anyone has any ideas for fund raising events we'd love to hear them. We've got to get going on this as we are running out of time. The cookbook will probably get going as soon as the account is set up so if you know of any businesses that might want to buy an ad please let me know. We have family & friends in Chatsworth, Calhoun, Rome, Cordele, Brunswick, & Rochelle, so businesses in those area may be interested. Thanks.

Jon's labs all came back good. Thank the Lord he usually remains stable. School is going about as well as can be expected. He has his good & bad days. But so far is not behind.

Please continue to remember our liver friends Haley & Aiden in your prayers.

Thanks for stopping by, please sign the guestbook if you would. The kids & I love to see who's stopped by.

love, Karen

Tuesday, August 17, 2004 11:49 AM CDT

Jen's liver function tests are all back down to normal. With the possible exception of her ggtp. The local hospital lab didn't run it. ARGGGG, this hospital drives me nuts with stuff like this. When she gets back to once a month labs I think we'll just drive down to Atlanta & do labs. At least then I won't have to worry about whether the transplant team is getting the results or the labs not running all the tests needed.

She is still not feeling 100%. She is complaining of belly pain but no other symptoms so we think it is adhensions. She only had 1 more month of summer quarter classes. Fall quarter starts Sept 29th & she'll only have 1 class so it should be less stressful.

Jon is doing fairly well with schooling. Today has been rough, we got a late start & he is still not wanting to get going well. He did pretty good with Mark yesterday while I was in Rome with Jen.

Please continue to remember our liver friends Haley & Aiden in your prayers. Haley is now listed for a liver transplant in Atlanta & Aiden is doing well.

Unless we hear different from our tranplant team Jen will get labs again in 2 wks when Jon is scheduled. It will be good to get them back on the same lab schedule again.

Thanks for stopping by. Karen

Saturday, August 14, 2004 2:58 PM CDT

Hey all

Jen will get another set of labs on Monday evening. Please keep her in your prayers. She had a headache last night & slept in today until noon. She was neaseous early today but got up for a while & was on the computer. Now she is reading while she rests in bed. I never know if she being a normal teenager or if she's getting sick.

Jen saw the audiologist on Thursday. Her hearing is unchanged. The audiologist told Jen that she needs to wear her hearing aids. She ordered new ear molds & Jen agreed to try to wear them with the new molds. Jen chose not to order flesh colored molds she chose red & black swirled! That should be interesting.

Jon has finished his first week of school. He got all his work done. We had some difficulties with his attention but he still managed to finished the week without getting behind.

As always, please keep our liver friends Haley & Aiden in your prayers.

Thanks for signing the guestbook the kids love seeing who's by by.

much love to all, Karen

Tuesday, August 10, 2004 7:54 PM CDT

Jen's #'s are still coming down. Her Ast & Alt are within normal range. Her ggtp is still elevated but is on a downward trend tho. We are waiting for the transplant team to let us know when she needs lab again. We are hoping to go a week before the next set of labs. She had a regular pediatric appointment this morning. Her bp was 117 over 76, the enalapril is working very well at controlling her bp. She is still retaining a little fluid in her lower legs around the ankles but it's not as bad as it was when she was on Norvasc for bp issues.

Jen has appointments for ortho(scoliosis), optho(cataracts), & hearing check(hearing aid molds) in the next several weeks. I forgot to tell the pediatrician's office to only schedule the referral appointment on Tuesdays & Thursdays so she would not miss school. But I feel the Lord intervened, because all 3 appoinments are on either Tuesday or Thursday. As one of our liver mom friends says "It's a God thing." Thank You God.

Jon has completed 2 days of school. His attention span is terrrible but he did manage to finish all his assigned work. We will be working on getting him to be more independent with his work this year. Please keep him in your prayers for his school work.

Also remember our friends Haley & Aiden too.

Thanks for stopping by. If you would, please sign the guestbook for the kids. Love ya'll, Karen

Thursday, August 5, 2004 3:47 PM CDT

Well Jen's numbers are coming down. They are still elevated especially the ggtp. She will get labs on Monday(evening) so she won't miss school. Hopefully they will be down more. If they are not, well, I don't even want to go there so I didn't ask. However, my guess is that since they were prepared to biopsy her today if the numbers were still up that they'll may want to biopsy her then.

My feeling is that its viral like she did back in March. The team P.A. thinks it could be viral or cholangitis & put her back on Actigall. For those of you unfamiliar, Actigall helps with bile flow. Cholangitis occurs when "stuff" in the bowel "back flows" & each time it happens scarring occurs which is not a good thing. So anyway, she'll remain on actigall for several months then we may see if she can come off it. If her numbers go back up then she go back on actigal indefinitely. It's not a bad medicine in terms of side effects & cost wise it's only about $130 a month. But that would bring the total cost of her meds up to $725 a month.

Speaking of $, we are still looking for a trustee so we can get started on fund raising. Please keep us in your prayers for this.

Jen has a doctor's appointment Tuesday to get her yearly referrals for her scolosis, cataracts, & hearing check. I expect her hearing to be the same but she does need new ear piece molds for her hearing aids. As for her scolosis, hopefully this will be the last checkup before getting released because the curvature is not progressing. Her cataracts, we don't know if the cataracts will have grown again since she's now been back on steriods for over 2 years. Last summer they were stable, prayers in this area would be appreciated too. Wow, we are a prayer needing family aren't we?

Jon & I will be starting up homeschooling for the year on Monday. He is enjoying Sunday school at church. He is continuing to do well healthwise, Thank God.

Please remember our liver friends Haley & Aiden in your prayers. Haley was listed for a liver recently & Aiden had his tonsils removed(and a penny from his tummy too!) Even liver kids do the usual childhood stuff too.

Thanks for stopping by to check on the kids. Karen

Wednesday, August 4, 2004 10:49 AM CDT

Hey all

We got Jen's labs back from yesterday. Not good news. Her Ast is 57, Alt is 170, ggtp is 231. Her Ast & Alt is usually in the teens or 20's. Her ggtp is usually below 25. So we will be driving to Atlanta tomorrow for 8am labs & Jen has to stay npo. Then we are instructed to hang around for results to see if the team wants to admit & biopsy her. Hopefully her #'s will be down some. She did something similiar back in March & evidently it was viral & she "got over it" without treatment. We just watched her labs closely for a while.

Please keep Jen is your prayers that this "issue" will resolve itself without biopsy or further treatment. If she misses 2 or more classes she will have to withdraw from school for this quarter.

We are also still looking for a trustee so we can open an account with COTA. A trustee would get bills from us & send on to COTA so COTS would pay it. Also would handle money at fund raising events(get it to the bank for deposit). COTA would handle transferring $ to their national account, only a small amount is left in the local accounts. I believe they have it where $ are automatically transferred to the national account where it would be kept for Jen & Jon.

Please remember Aiden & Haley in your prayers too. Thanks for stopping by.

Karen

Thursday, July 29, 2004 4:10 PM CDT

Hey

Jon had labs yesterday & his results were great. He is tolerating the switch from brand name cyclosporine to generic well.

Jen is also doing well. She is due for labs next week. I will post an update after her results are back.

We are still trying to find someone to be a trustee for fund raising for Jen & Jon so that we can get an account opened up thru COTA. Please keep us in your prayers for this.

Please remember our liver friends Aiden & Haley in your prayers. Aiden is having his tonsils removed & Haley is listed for a liver.

Thank you all for checking in on Jen and Jon.

Thursday, July 8, 2004 8:02 PM CDT

Hey all

Got Jon's labs from Friday back as well as Jen's from today.
Both kids labs looked great, although Jen needs to start drinking more again, her bun is up some.

Jon is at camp this week. I guess he is eating well this time since I have not gotten a phone call this week. Jen & I will pick him up on Saturday. Jen started back to classes on Wednesday. This quarter she is taking Psy I, Anatomy & phy, Intro to Allied Healthcare. Heavy load, which will require lots of studying. Her classes are only on Mon, Wed, & Fri, thank God, only 3 days a week of driving her to Rome.

We are still looking for someone to be the trustee for a fund raising account for the kids. Keep us in your prayers for this.

Also please keep Othello's family(I mentioned him in the last update)in your prayers. Othello lost his battle on July 1st. He fought bravely but the Lord called him home.

And remember Aiden & Haley. Haley should be listed for a liver soon, please pray that she gets a liver quickly & has a smooth recovery.

That's all our news, if you would please sign the guest book as the kids love to see who's visited.

Karen

Monday, June 28, 2004 2:38 PM CDT

Hey all

Jen's new blood pressure med is working much better. The fluid in her lower legs is gone & her bp is better controlled. On Norvasc her bp was running 130-140 over 80-90. On Vasotec it's running 110-115 over 70-75. With the last check it was 110 over 68. Just need to keep watching it to make sure it does not go to low. If it does we can reduce the dose, plus it's less expensive too. She is not due for labs until the 2nd wk of July. She got her grades back & didn't do as well as she would like to have but still got an A, B & C. Her C was in Math, she thinks she may have rush thru her final(it counted 20%). But I think this was a learning experience for her. Summer qtr starts back on July 8th.

Jon is doing well. He switches from Neoral to gengraf(generic) tonight. We'll do labs on Friday then again on the 12th. More than likely there won't be any difference in his liver function tests. He goes off to camp this Sunday until next Saturday. He's excited, he swam very well on vacation so he is comfortable taking the swim test at camp.

Vacation - We went to Clearwater Beach, Florida. We had so much fun. We went to the CLASS pinic. this was a get together of online famlies who've have children who had/have liver diseases. It was great to finally put faces with names. It was amazing to see all those kids & know some have already been thru transplant. It was hard to tell who was the transplanted kids were as opposed to their siblings. We went on a pirate ship cruise & it was truly a "boat load of miracles." Both kids swam, swam & swam some more all weekend.

We are still praying for a trustee so that we can start fund raising for the kids.

Our prayer list includes Haley, Aiden, Coleman & Othello. Othello is very sick & he & his family really need prayers at this time.

Thanks for stopping by. I'll post again after we get JOn's labs on Friday.

Karen

Wednesday, June 9, 2004 9:07 PM CDT

Hey all

We had transplant clinic today. Both kids' lab results were great. Everyone commented on how much Jon has grown. He is only 3 inches shorted than Jen now. Jen will be switching to another medication for blood pressure control. She has been retaining a little fluid in her lower legs & feet & it was decided to change the bp med & see if that would help. And guess what?????? NO CLINIC for six months!!!! YYYEEAAHH!!!!

Jen had one final yesterday, one today & one tomorrow then she is free for 3 weeks when summer quarter starts. My baby has finished her first quarter of college.

We are still on the hunt for a treasurer for fund raising for the kids. Please keep us on your prayer list for this.

Speaking of prayer lists, ours includes: Haley, Aiden, baby Marisa, Coleman, Daniel, Romina, Don B.

We are counting down to our Florida vacation. 15 more days. We will be going to see some liver families, some we have met before & some we'll be meeting for the first time.

Thanks for checking in on the kids. We love ya'll. Karen

Tuesday, May 25, 2004 7:07 AM CDT

Hey all

We went to the Atlanta Braves games last Thursday. We had a blast. We saw several of our "liver" friend families. Sarah, Kyle, Ainsley, & Alex. They all looked great. There was a parade before the game for all the organ transplant recipient kids. We had dinner before the game & the kids had the opportunity to meet 3 of the Braves players. We look forward to doing this again next year.

Both kids have transplant clinic on June 9th. Our hospital is starting a support group for pre/post transplant families. The first meeting will be on June 9th. Glad we now live only 1 1/2 hrs away now. After 11 years of dealing with post transplant issues this will be the first time we've been closer to a support group than 3 hrs away.

We go to St Petersburg/Clearwater, Florida next month. It will be a weekend get together for liver families. We can't wait.

We are still looking for a trustee for fund raising. Please pray for us to find someone. Time is growing shorter to our insurance change. Also Jon's antirejection med is not being covered thru Georgia Peachcare anymore. So we will be paying for that soon.

Our prayer list: Aiden, Haley, Coleman, baby Marisa, Erin, Othello, all liver kids. Thanks so much for checking in on Jen & Jon.

God bless you all,

Karen

Friday, May 14, 2004 3:43 PM CDT

Hey all

Jen & Jon's labs were great. No change in meds for Jen. She is still doing well in college. Only a little over 4 wks of her 1st qtr left. She registers for summer qtr next week. This girl has got to learn how to drive. Jon & I are tired of driving 5 days a week, 40 miles one way & homeschooling in the van while waiting for Jen to get out of class. Our goal is for her to be driving before fall qtr starts. So this summer should be very busy with driving lessons.

Jon had a Dr's appointment today. He had some lumps/bumps in the chest area. One area was just due to normal puberty type muscle development & the other was a cyst. The doc did not felt it needed to be biopied, just keep an eye on it to make sure it does not grow. He had a med change. His protonix(reflux) was increased to help with reoccuring reflux issues. Jon's schooling is taking longer to finish due to "homeschooling" in the van. But we'll get him finish by end of May.

Mark & I did joined Spring Place Baptist Church this past Sunday. Now we just need to get the kids going to church too. Speaking of church, our prayer list: Aiden, Haley, Sarah, Johnny, baby Marisa, Coleman, Jenna.

We are still searching for a trustee for fund raising. We have to find one before we can even sign on with COTA to start an fund for the kids. We will keep everyone inform when we do.

much love & blessings to all,

Karen

Monday, May 3, 2004 5:20 PM CDT

Hey all

Not much to update. Both kids are due for labs until May 12th(next Wed).

Fund Raising - We received the packet from COTA Children's Organ Transplant Assistance but we still don't have a trustee. The trustee has to be a local person & can't be family. So we are at a stand still again. We are hoping & trusting the Lord will help lead us to find someone.

In the meantime, we are still working on the cookbook idea. We received most of the info on how to do one. Thank you to those who've let us know about receipes & number of books you'd like. We've also found out about selling advertising pages to businesses. If you know(and only if you are comfortable asking)a business that might buy a page, please let me know. We have family & friends etc. in Chatsworth, Calhoun, Dalton, Rome(Jen goes to college there), Cordele, Rochelle, Brunswick, some still in Killeen, TX, and friends in Missouri. So any business in those areas maybe interested.

Jen is doing well in college. Her avg is 3.5 now, Opps on a math test but 3.5 is still a B avg. We looked at her required classes & think she should be finished with her pre-requisites by fall qtr(Dec 04). Then she'll begin a 2 year wait to get into clinical classes. But during that 2 years she'll take other allied health classes. We are hoping that the 2 year wait may not be that long. The hospitals the college contract with just don't have enough positions for all the student who are majoring in Radiologic Technology. Her clinical will take 8 qtrs(2 years).

Jon is still passing in all his classes. His reading grades are not where we'd like them to be but his is having trouble getting what he's read down to paper. Math is still difficult also. But I can definitely see a difference in his ability to do "mental" math.

Mark & I have attended church at Spring Place Baptist Church in Chatsworth for the past 5 Sundays. It seems like we have found a church home. We are thinking of asking to join next Sunday. We have to get up in front of the whole church & go to the pastor & ask him & then he introduces us to the congregation & asks if they will accept us. We've seen several new people join recently so we know how it goes but..... I really have this thing about getting up in front of people so I'd like to ask for a special prayer that I can to this.

Prayer list - Aiden, Haley, Sarah, Alex, Sami, Kyle, Cole, Kyle C, Erin, Eric, Othello, Emma, Jessie, Jeremy, baby Marisa, Havalah, Ainsley, & all "liver" kids. Also remember Ms. Sudie & Mr. Ernest from SPB church as Mr. Ernest lost his sister last week.

Thank you all for checking in on Jen & Jon. We wish you all happiness & blessings.

Karen, Mark, Jen, Jon,
Sissy, Tawney, Blackie, Silver(our cats)

Friday, April 16, 2004 4:20 PM CDT

Hey everyone

We are at the Ronald McDonald house in Atlanta. Our local hospital "lost" the lab orders for Jen. So we drove down & did labs at Egleston & picked up new orders for May to use at the local hospital in Calhoun.

Once again we have been blessed. Both kid's lab results were very good. I am relieved again, at least for 4 weeks. I was nervous about Jen's results since this is the first time in over 2 years Jen has been able to go 4 weeks apart on labs. Jon's liver numbers were very good for him. He usely runs on the high end of normal but today was smack dab in the middle. We also got our nurse coordinator to fill out paperwork for Jon to go to camp this summer. Jen will miss camp because of college classes.

Speaking of college, Jen has been in class for 2 wks now & has a 4.0 average so far. Go Jen Go! Homeschooling is coming along for Jon. He is passing in all subjects & is now off all ADHD meds again. Too many side effects, we were starting to treat side effects & those meds were causing more side effects, we decided enough was enough. Jon is going thru a growth spurt. He is only about 3 inches shorter than Jen now.

Now for the fund raising news. It looks like we have found an organization that will administer a fund for the kids, Children's Organ Transplant Assistance(COTA). I contacted them & was told they would help & am waiting for the packet to come in the mail. I will be sending out more info on fund raising after we sign the contract with COTA. In the meantime, we are looking at doing a cookbook. We will need receipes, at least 250. We will also have to collect $ up front for the cookbook since we have to pay for the order at the time of order. We also have to have at least 100 books. If you are interested in contributing receipes and/or ordering a book please let me know so I can get an idea of whether we will make the 100 minimum book order. No $ now or receipes, just let me know if you can contribute receipes & will want to order a book later. If we can raise $25,000 COTA will match with $2,500. If we raise $50,000 COTA will match with $5,000. $75,000 they match with $7,500. $100,000 match with $10,000. We are so relieved to find organization that will administer a fund for the kids. The upcoming insurance change will run us about $10,000 per year for both kids with premiums, deductibles, copays etc. If you've got any fund raising ideas we'd love to hear them.

Our prayer list: Aiden(having sinus issues), Haley(just recently went thru eval & should be listed soon for a liver), Emma(recently transplanted), Kyle(transplanted doing well),Sami(recent admission), Anni(recent admission), SaraRuth(recently transplanted), other kids, Jeremy, Jessie, Coleman, Ansley, Kyle C, Alex, Cole, Eric, Erin. There are so many kids we know(thru the web, CHOA at Egleston & thru other families) that are journeying thru their liver disease. Thank God they are alive! We all have so many blessing in our lives. I live with 2 everyday. Well 3, my hubby is such a blessing to me, he is my rock, we will be celebrating 22 years of marriage this summer.

Well this update is too long so I'll close. Thanks for stopping by. Please sign the guestbook if you would, the kids(& me too) love seeing who's stopped by.

we love you all, Karen, Jen, Jon & Mark

Saturday, April 10, 2004 8:36 PM CDT

As I expected, Jen & Jon both have some sort of seasonal allergies. Both are on Allegra. They've only been on it for several days but it does seem to help a great deal, especially with Jen who had the worst symptoms. Both kids are due for lab work next week. Both go back to transplant clinic in June.

More on fund raising for the kids soon. We hope everyone has a Happy Hoppy Easter.

We love ya'll, Karen, Mark, Jen & Jon.

Tuesday, March 30, 2004 7:42 PM CST

Hey all

Not much to report. Jon is better. The transplant team GI suggested we have him tested for allergies and/or asthma. Could possibly be one of those, I'm leaning towards allergies. He had adjusted back to homeschooling with no problems & grades have greatly improved.

Jen is totally recovered(physically) from having her upper wisdom teeth extracted. Tomorrow she starts college classes. She is nervous but I'm sure she will do fine.

Both kids have labs in 2 weeks. Jen should stay 4 wks apart if all is fine. Jon should be able to go out to 6 wks apart if all in fine.

Our prayer list: Haley, Aiden, Sarah, Kyle & Sami, Marek, baby Marisa, Ansley, Emma. Thanks for all your prayers.

love, Karen

Monday, March 22, 2004 3:20 PM CST

Hey all

Not much to report. Jon is still sick. Fever on Friday was only up to 100.7, none since then tho. Still has sore throat & cough. I took him to the pedi to make sure he didn't have strep. It was negative. So the pedi thinks it's viral & to keep a watch.

Jen had her upper wisdom teeth extracted on Friday. It was very tramatic for her. Probably the worst medical experience she's ever had. If her lower wisdom start to bother her we'll find another, more compassionate dentist to work with. This guy was an older, uncaring, mean type. Personally I think he should retire. Mark wants me to write a letter to have him explain his actions. Anyway she seems to be healing up well.

That's all that's happening here. Hope all is well with everyone. Our kids to pray for are: Sarah, Haley, Aiden, Kyle & Sami, Marcus, Marek, Ottello, Emma, baby Marisa.

Friday, March 19, 2004 8:38 AM CST

Jen's labs finally came back. All is well again. Thank God! The transplant team actually changed her lab schedule to every 4 weeks, Yeah! It's been over 2 years since she's been that far apart with labs.

She registered for her classes yesterday. She will be taking a Math, English & Intro to Microcomputers class. She got a shock when she went to get her books. She got a $100 grant for books but was only able to get 1 book. She'll be getting a $500 grant for taking & passing the GED soon so she'll be able to get the other books. Yes, I finally stopped fighting the college about her taking the GED, although I felt it was like telling a homeschooled student that all the work they did for high school was for nothing. But she had to have it for financial aid & Jen said "Mom, it's just a test." Anyway, she did exceptionally well. She was told that so far this year at Coosa Valley College(Calhoun campus) that she has the highest grades. She had a perfect score on the literature section. She wants to participate in their graduation ceremony in June so she'll get to actually get to wear a cap & gown.

Today Jen gets her wisdom teeth(all 4) removed. She's nervous because, as she said, "It's something new." The Oral Surgeon will use IV sedation & I'm sure Jen will do fine. As long as they can get a vein for the IV. Labs draws are taking 2-3 sticks now.

Jon is not feeling well today. He has a sore throat. Mark said it looks a little red. So far no fever. Why do kids seem to get sick on the weekend? He has been getting sick just about every 7-10-14 days since we moved. We pulled him from public school on Monday. It just was not working out. We were hoping he would stop getting sick now that he is not exposed to the germ pool at public school. Hmmm, maybe there is something in the water here. Still waiting on the Giardia & Cryptosporidium test results. Will let everyone know when we do.

Thanks again for checking in on Jen & Jon. Please feel free to sign the guestbook, they love to see who has stopped by. We'd like to ask for prayers for Sarah, one of our liver friends from Atlanta. She's at Egleston in PICU now. She was transplanted on Wednesday & has had some complications. Also remember Aiden, Haley, baby Marisa, Marek, Marcus, Annika, Kyle & Sami. Thank you & bless you

Wednesday, March 17, 2004 2:26 PM CST

Hey all

Jen had labs yesterday, still waiting on the results. I so loathe the waiting, don't know whether to chill out or worry.

Jen will have OAR(orientation, advisement, & registration) at college tomorrow. She should know which classes & what days. She's hoping that she won't have a 8am class. Me too, we'd have to get up at 5:45am to get dress & drive to Rome to get her there in time. She's signing up for Radiology Technology. On Friday she is getting her wisdom teeth out. She's getting IV sedation & she is very nervous. As she said "this is new stuff." (the teeth, not the IV sedation). I'm sure she'll do fine.

We pulled Jon out of public school on Monday. It wasn't working at all. Actually it is such a great relief for all of us with him being homeschooled again. No more worry about getting notes from doctors, labs etc. And it is so much easier to work around all those appointments too. I'm even putting together curriculum on my own for Jon. I know what he needs to learn & why pay out $ when I can do it myself.

Please remember Haley, Aiden, Sarah(in surgery right now getting her new liver!), Marek, Annika, Kyle & Sami & many others. Thanks for keeping Jen & Jon in your thoughts and prayers too. love ya'll, Karen

Saturday, March 13, 2004 9:33 AM CST

Hey

Big news is that Jon was 11 years out from his liver transplant yesterday. We were in Warner Robins for a psychologist appointment early. So we went to the Air Force Museum of Aviation, then ate at Steve B's pizza & the kids played games. Wow, 11 years ago Mark & I were going back & forth between Jen's room on the floor & Jon's room in PICU. Thank God Jon was only in PICU for 2 days. In & Out of the hospital in 13 days total.

Like I said in the last update, Jen's upward bump in numbers was evidently due to a viral issue(cold/sinus). She is on weekly labs for a while to make sure but the transplant team feels she's ok.

Our major problem right now is Jon's schooling. The public school teachers are not making any modifications for Jon for his ADHD. His psychologist is telling me to call the state board of Education & lodge a complaint. Jon is now also telling us that the kids are picking on him & he is miserable at school. We are considering going back to homeschooling. With everything that goes on with both kids, homeschooling is much more conductive to our life. All the labs, doctor's appointments, all the viral stuff Jon has brought home from public school, etc. With homeschooling we can easily adjust our schedule to fit what's going on. Please keep Jon in your prayers so that we can figure out what to do that is best for him.

Prayer list: Haley, Aiden, Sarah, Kyle & Sami, Marek, baby Marisa, Annika, Marcus - all liver kids. Thanks for stopping by to check on Jen & Jon. love ya'll, Karen

Wednesday, March 10, 2004 7:27 AM CST

It's viral, Thank God!

Jen's Ast came down to 24 from 251, her Alt down to 66 from 229 and her GGTp down to 91 from 174. So it seems like a viral issue. She will be back to weekly labs for a while to make sure. But the team (and Mark & I as well as Jen) were very relieved.

Still don't have results on the Giardia & Cryptosporidium tests yet. I will post when I hear. Thanks for all your prayers for Jen.

Karen

Monday, March 8, 2004 8:19 PM CST

YIKES, JEN'S NUMBERS TOOK A HUGE BUMP!!!

We got a call from the transplant team this afternoon. Jen's labs are very elevated. Her AST, ALT & GGTP went from the 50's on Wednesday to the 200's on Thursday morning. I took her to the local hospital tonight & had labs done again. Those results will be back in the morning.

The PA on the team is thinking: viral, bile duct stricture or rejection. Most likely viral he said. Her prograf level(main rejection med)was high so it's probably not rejection. She started on Saturday with an upper respiratory type symptoms so hopefully it is just a cold/viral thing. Hopefully not the "bugs" that might be in the water. Don't have those results back yet.

I'd like to ask that Jen be keep in your prayers. She is due to attend orientation, advisement, & registration for college in 10 days. We are hoping that whatever "it" is is over quickly. Thanks- please also remember Haley, Sarah, Aiden, Marek, Marcus, Jeremy, Kyle & Sami in your prayers.

I will post an update as soon as I have more info. Karen

Thursday, March 4, 2004 4:11 PM CST

Hey everybody

Jen & Jon had transplant clinic yesterday.

Jon's labs were great, he seems to be tolerating the dose change well. Our GI wants to run more tests to find/rule out causes of his recent frequent illnesses. Since Jon's gi upsets have been since we moved to north Georgia, the GI wants to check for Giardia & Cryptosporidium. But I've got a question for those of you who've had to dealt with this, why would he want a PT/PTT check? Clinic was a zoo, seemed like a million patients & several with lots of issues. Plus we were seeing the surgeon when the GI came back with the lab orders so I didn't get to look at the orders until after we left.

Jen's numbers, however, are up. AST & ALT were up to the 50's & her GGT was also in the 50's. The GI also wants to check her for Giardia & Cryptosporidium too. But Jen's symptoms started shortly before we moved. The surgeon came just as Jen's progral level came back. It was too high so her dose was lowered & she has to get labs in a week. Plus he added cellcept back & the GI put her on flagyl in case there is something in the water so now she's back up to 5 meds.

I will update as soon as I have anymore news. Thank you all for remembering our prayer kids. Aiden(doing well), Haley(getting a checkup), Sarah(is having a lot of pain), Kyle & Sami(doing well), Marek, Marcus & baby Marisa & many others.

Thanks for checking on Jen & Jon

Monday, March 1, 2004 8:03 PM CST

Hey all

No new news. I've got Jen & Jon's picture to finally load, sorry about the extra white part. Jon has a dental appointment tomorrow & then we'll drive down to Atlanta & stay overnight at the Ronald McDonald house. Both kids have labs & transplant clinic on Wednesday. I'll post their labs & checkup results after we get back home.

Please remember our liver kid friends: Aiden, Haley, Sarah, Kyle F, Sami F, Jessie, Marek, baby Marisa, Marcus, Annika & many others.

love to all, Karen

Thursday, February 19, 2004 5:36 PM CST

Guess what????

Tomorrow JEN WILL BE 18 YEARS OLD.

Jen had labs yesterday. Everything looks great.
Ast 24
Alt 29
GGT 36
Tot bili 0.8
bun 14
creat 0.7
H & H 13 & 37
wbc 5.8
Plat 196

It isn't time for Jon's labs yet. Both kids will have labs on March 3rd when we go to transplant clinic for checkup. Jon is well now. I am hoping all the virus's have run their course thru his school.

I can't hardly believe Jen will turn 18 tomorrow. My baby girl is growing up. And I'm getting old. Well that's all our news. Thanks for checking in.

Please remember our prayer list:
Aiden
Haley
Marek
Sarah
Ainsley
Jessie
baby Marisa
and many other liver kids from CLASS

Thursday, February 19, 2004 5:36 PM CST

Hey all

Jen had labs yesterday. Everything looks great.
Ast 24
Alt 29
GGT 36
Tot bili 0.8
bun 14
creat 0.7
H & H 13 & 37
wbc 5.8
Plat 196

It isn't time for Jon's labs yet. Both kids will have labs on March 3rd when we go to transplant clinic for checkup. Jon is well now. I am hoping all the virus's have run their course thru his school.

I can't hardly believe Jen will turn 18 tomorrow. My baby girl is growing up. And I'm getting old. Well that's all our news. Thanks for checking in.

Please remember our prayer list:
Aiden
Haley
Marek
Sarah
Ainsley
Jessie
baby Marisa
and many other liver kids from CLASS

Tuesday, February 3, 2004 6:01 PM CST

Hey all

Jen's interview with Medstar has been released nationally. So far we know it's been shown in Rochester, NY, Atlanta, GA, Bakersfield,CA Louisville, KY, and Lansing, MI. Those are the TV stations that list it on their websites.

Jen's is doing well. Her labs are great. She & I go tomorrow to talk to the advisor at a local college. She hopes to start classes on March 31st.

Jon is sick again. Ah, the joys of public school. The kids share EVERYTHING. He has had strep, runny nose, cough, fever(several times). All since Jan 6th! I had thought since he is 10 years out from transplant he would be ok. School is going. He is having a hard time staying focused with no meds for his ADHD. Report cards are in 2-3 wks, might not be too good for him. We may have to reconsider meds at that time.

Please remember our prayer list kids:
Aiden
Haley
baby Marisa
Kyle F
Jackie
Jessie
Most of these kids have had a transplant, but some are waiting for a liver or will eventually need to be listed.

Thanks for checking in....

Wednesday, January 28, 2004 1:01 PM CST

Hey all

Both kids are well again. With the exception of possible allergies. Something in the mountain air has all of us going nuts with sinus issues.

Jon's labs were good. He started yesterday on Neoral gelcaps & his dose was changed from 30mg to 25mg to make the change. This will be much easier than using the liquid Neoral. He can take his meds by himself now. And we won't have an issue over it at camp this summer.

Jen gets labs this coming Monday. She was on zithromax(antibiotic) which causing prograf levels to increase so we have to decrease her prograf by half for 2 wks. Zithromax stays in the body for 14 days. Monday will be 2 wks & she'll go back up to her usual dose. Hopefully her prograf level will be ok. I hate to think of doing the prograf dance & labs again. Next time I'll request the pediatrician prescribe another antibiotic. Jen takes the ASSET test for college next wk. We are hoping she will be able to start classes in late March. Probably just the basics for now. English, Math, etc. Still not decided on a major yet. She keeps changing her mind.

Jon is doing ok in public school. His grades are not where I want them to be but... We are working on that. Remember he is NOT on any ADHD meds so he's having a rough time staying focused. Man, is he learning a new language tho. The hormones are running rampant in this middle school. So far he's mananaged to stay out of trouble. I'm keeping my fingers crossed that he can stay in public school. But will home school again if necessary.

Our prayer list - Haley, Aiden, baby Marisa, Ansley, Kyle, Sami & Jessie.

Thanks for checking in, Karen

Monday, January 19, 2004 10:57 AM CST

Hey all

Both kids are still sick. Jen has started on an antibiotic today. We had to wait until we could change her prograf dose before starting the Zithromax. At least she's not running a fever. But her cough continues & her energy level is down. Jon's throat looks alot better but now he's coughing. He is already on an antibiotic because of the strep. Hopefully this is just all a normal cold & they will be over it soon.

Jon will have labs tomorrow, hopefully they won't be too bad with him being sick. Jen is not due for labs for another 11 days.

Prayer list - Aiden, Haley, Kyle F. & baby Marisa.

Thanks all for checking in on Jen and Jon.

Karen

Tuesday, January 13, 2004 4:38 PM CST

Hey all

Well both kids are sick. Jon has strep. I've never seen a nastier looking throat & his strep culture was positive. He's on pencillin.

Jen's cold has turned into a productive cough. But the doc feels it's viral & just put her on a decongestant for now.
But at least we've now have a pediatrician for the kids. Yeah.

Jon have been given permission to lower his Neoral dose to 25mg so he can go on the Neoral gelcaps instead of liquid. He's very happy about that.

Our prayer list: Aiden, Haley, Alex, Kyle F & my sister's family as they morn the death of Mrs. Bitdorf. I hope all is well with everyone.

bless you all,

Monday, January 12, 2004 8:25 AM CST

Hey all

Jen's lft's were ok. Didn't get the others back yet. She is now fighting a cold. Have to watch her carefully to make sure she does not develop pnuemonia. Jon is doing ok in school. He has a sore throat. Jen's college apps will have to wait until she's over this cold. Speaking of cold,,, it's freezing here. There is ice in the area ponds. Brrrrrrr.

On a sad note, Mrs. Bitdorf, whom I asked everyone to pray for, passed away early this morning in her sleep. Sad for us, but now she's reunited with her beloved husband. Thank you for your prayers for her.

Our prayer list now includes Aiden & Haley, who are both stable. And Kyle who was just recently transplanted & is doing great. Remember also Alex who is at our transplant center in Atlanta. Hopefully going home today or soon.

Blessings to all,

Tuesday, January 6, 2004 8:17 PM CST

Hey all

Well, we're are finally moved & almost settled in. What a move! I never want to do it again! Please note that our email address has changed again. The first ISP at the new address did not work for us. Phones are hooked up, internet online, Jon is enrolled in public school in Chatsworth. Now my priority is to help Jen find a college to attend since we wound up not moving to Griffin which was near Gordon College. After that finding scrapbooking stores!!!

Jon was sick before Christmas with a sinus infection. After antibiotics he cleared up well. Jen became sick Friday nite & we wound up in the local ER. It was stomach flu. We were concerned about the possibility of a bowel obstruction with as much pain as she had. But she is fine now. Still in the process of getting labs set up at the local hospital & finding a pediatrician.

Hope all is well with everyone. Please continue to remember our friends Haley & Aiden & Kyle. If you would add my brother-in-law's mother(Mrs. Bitdorf) to your prayer list. She's 92 & back in the hospital for the 2 time since Christmas.

Bless you all, Karen

Tuesday, December 23, 2003 9:35 PM CST

Hey all

We finally found a house. We will be living in Chatsworth, Georgia. It's 60 miles north of Atlanta & 40 miles south of Chattanooga, Tennessee. It's beautiful there, you can see mountains from the front porch. We will be moving the day after Christmas. Our new mailing address will be 228-L Brackett Ridge Road, Chatsworth, GA 30705.

Since the local newspaper won't let you see the online version of the article I've copied below.

CORDELE TEEN HAS HIGH HOPES AFTER SECOND TRANSPLANT

by DAVE CONGER
Staff Reporter

CORDELE - On Dec. 30 it will be the one-year anniversary of 17-year old Cordele resident Jennifer Lincoln's second liver transplant. Thanks to a drug called Zenapax, she now hopes she won't have to have any more transplants.
Zenapax came on the market about six year ago. "It's been used for kidney transplant." said Jennifer's doctor, Thomas Heffron, director of liver transplantation at Emory University Hospital & Children's Hospital of Atlanta. But he adds that the results for administering the drug to liver transplant patients were published last year. Heffron said that patients who receive Zenapax have a much lower instance of organ rejection & rehospitalization. In addition, he said immunosuppressants such as Prograf tend to adversely affect the kidneys for a while. This is because such drugs, known as calcineurin inhibitors, work on a cell receptor that causes kidney toxicity. With Zenapax, however, the incidence of toxicity decreases significantly.
Zenapax is given in an IV dose the day after transplant surgery, Heffron said. Patients who receive it don't need Prograf or other anti-rejection drugs immediately, and so their kidneys are able to recover more quickly.
Jennifer's mother, Karen Lincoln, described her daughter's illness as an "undefined familial liver disease," since Jennifer's brother, Jon, 13, was also diagnosed with it.
We had someone tell us it was probably a recessive gene type of thing, and it took my husband & me to bring it out," Karen said.
Jennifer received her first liver transplant in Feb 1993 at age 7. She stayed in the hospital for 126 days. For her second transplant she was hospitalized for 32 days. Both times her kidneys shut down temporarily. The second time, they shut down despite her have taken Zenapax because she had been taking immunosuppressants for years.
Jon received a transplant in March 1993, when he was 3 years old. He was able to return home after 13 days. Jon
has suffered no lasting effects & has been able to function normally.
"Jon's always been able to do whatever he wanted." Karen said.
Karen said that while Jon can't play football because getting tackled might be bad for his liver, he can play socceer.
Jennifer is graduating from high school this week(both she & Jon are homeschool), and she plans to attend Gordon College in either the Spring or the fall.

They also had a pix of Jen, Jen & me. It was a great article. Now that we've been on TV & in the paper one of the lady where I buy gas for the car, calls us "movie stars." Ha Ha.

Anyway... Jon went to the local pedi today. He has a sinus infection & was put on antibiotics & a decongestant. He presented with a sore throat. The decongestant is making him drowsy. Jen is fine. She had labs at 8 tonight. We forgot this morning. Opps. Hope the transplant team doesn't read this. Hey, my defensive is - Jon was sick & had to be seen to make sure it wasn't strep again.

Our prayer list - Please remember Haley, Aiden & Kyle who just had a transplant this week. Thanks for the prayers for us to find a house, IT WORKED!!!

Merry Christmas to all & Happy New Year.

Thursday, December 18, 2003 12:33 AM CST

Well today is the Christmas party for my side of the family. We are also combining it with Jen's graduation celebration. She is so excited.

The Children's Healthcare of Atlanta at Egleston transplant services newsletter is online now. www.choa.org
When you get to the site use the pull down menu on the left to click on transplant, then click on newsletter. Our story is on the front page.

Speaking of front page, Jen, Jon & myself(Mark was working) are on the front page of our local newspaper today. The online link only lets you see the headline without subscribing to the paper. It's a great article, it's titled "Cordele teen has high hopes after second transplant"

Our search for a house continues. We are going to Calhoun, Georgia(north of Atlanta) on Friday & Saturday to house hunt. Keep us in your prayers that we will find a home.

Our friend Haley is still stable & Aiden's numbers are all normal now. Thank you for your prayers for these 2 kids. Another CLASS kid is in transplant surgery today. Please keep this family in your prayers as they are much like our family. They have another child that is also listed for transplant.

Merry Christmas & Happy New Year to All!

Friday, December 12, 2003 2:36 PM CST

Hey everybody

Jen & Jon's clinic checkup went fine. Jen's numbers are coming down. Her prednisone dose was reduced to 5mg daily & actigall down to 300mg twice a day for a wk & then she's off it. She'll then be only on 3mg prograf bid, 5mg prednisone daily, & 10mg norvasc daily. Since her prednisone was reduced she'll get labs in 2 wks & if ok back to 3 wks apart. Her weight is up even more but we see the nutritionist on the 22nd to get some tips on weight loss. She will graduate high school on the 16th. Thank you to those who've called or send her a card or gift. I'm saving the cards & gifts for her party on the 18th & keeping a list of calls too. She's so excited. She hopes to start college in the fall at Gordon College in Barnesville, GA. Her major is radiologic technology.

Jon's labs were good too. His meds continue to be 30mg Neoral bid, 40mg Nexium daily, 75mg zantac daily, & he can also take tums when needed for his reflux. His weight was down more. 2.2 lbs since September. He also is seeing the nutritionist on the 22nd for Weight gaining tips.

The "Second Chances" article in the CHOA(Children's Healthcare of Atlanta)publications came out today. We haven't seen it but the transplant team coordinator told me she saw it. As soon as it's on the CHOA website I'll post a link to it. Today we did an interview with the local newspaper. The reporter took our picture & talked with us for about 20 minutes. He is also going to talk to the transplant surgeon at CHOA about Jen. That article should be out on Tuesday.

We thought we found a house outside of Griffin, Georgia but the deal fell thru. Now we are scrambling to find another house since we've already given notice where we live currently. We have to be out by the 31st of Dec. Please add us to your prayer list about finding housing. I hate to think of living in the van. Ha Ha. I'm sure we'll find something.

Thanks for all your prayers for our friends Aiden & Haley. Aiden is doing better & Haley is stable. If I don't post again before Christmas... We hope each & everyone has a very Merry Christmas & Happy New Year.

much love to all, Karen

Wednesday, December 3, 2003 8:48 PM CST

Hey everyone.

Not much to report this time. Jen's prograf dose was upped this week. Her level was to low & her numbers up slightly so the transplant team is in cautious mode. She has labs & clinic checkup next wk with the team.

Jon has been having headaches, going to the bathroom alot & eating like crazy but still losing weight. We'll see what his glucose is with his labs next wk. If high he'll probably be evaluated for diabetes. If not high, then we'll keep an eye on him & see the dietian about getting extra calories in for weight gain.

It looks like we are probably going to move to the Griffin, Georgia area after the first of the year. Then we'll only be about an hour from the transplant team. Sure will make things alot easier if the kids are admitted. Hopefully it will be a long, long time before another admission for either Jen or Jon.

Please remember Aiden & Haley, our transplant friends. Aiden is stable now & Haley may have shingles again. There are so many kids we know who are waiting for livers, please consider being an organ donor, talk to your family to make sure they know your wishes if something were to happen to you. We have been blessed 3 times by families who donated their loved ones livers to Jen & Jon.

Hope you all had a happy Thanksgiving. We spent the day with my sister & her family. We enjoyed turkey, dressing, gravy, yams, greens, squash, german potato salad, rolls & the triptopan(sp) worked really well on Mark. He had a nice nap while my sister & I talked on the porch & the kids played.

Friday, November 21, 2003 7:39 PM CST

Hey all

We got a copy of the Atlanta WSB TV interview. It looked ok. They even showed several pages from our transplant scrapbooks. The hospital "Second Chances" publication should be out the first wk of Dec. I will post a link when it's ready.

Jen had labs yesterday. Her bun & cr are 15 & 0.7, which is really great for her(kidneys). Her H & H 14 & 41! Her ast/alt are 29 & 57 which is up for her but the transplant coordinator said it was ok. It makes me worry if it's an upward trend or not. But we'll see in 3 wks.

Jen will graduate from high school on Dec 16th. I thought we were going out to eat as a family to celebrate. Today Jen asked me, "mom, aren't we going to have a party?" So now I'm trying to get something going.

Jon is doing well. Still not gaining weight tho. Both kids see their local pediatrician on Tue. We'll see what she says about his weight loss now that he's off all ADHD meds.

We hope you all have a very Happy Thanksgiving. Please remember little Aiden & Haley in your prayers.

love to all, Karen

Wednesday, November 12, 2003 4:07 PM CST

Jon's labs last wk were good. His Ast 35, Alt 31, total bili .5, & the rest were also good. He & Jen both have clinic on Dec 10th & will get labs at Egleston that day too.

We traveled to Atlanta this Monday. We were interviewed by WSB TV station out of Atlanta. The PR person at Egleston was supposed to tape it & send us a copy. Then we were interviewed by another media company that does medical segments. They do the segments & market them to stations across the nation. So we could wind up being on TV anywhere. We were all nervous. With the second interview the producer said Jen really opened up & was laughing & telling all. Then we went out into the hospital garden & walked around while they filmed. Then they got us looking at the transplant scrapbooks. Both stations got pictures of some of the scrapbook pages. I'm glad we brought the scrapbooks, they were a real icebreaker. We were very nervous but it wasn't as bad as we thought. Hopefully it comes out ok. The company that did the medical segments also got Dr. Heffron(transplant surgeon) checking Jen like we were at clinic. It was kinda funny, he couldn't get into the computer system to check Jen's labs, he had to get help. So glad he's a phenominal surgeon rather than a computer geek.

We have been told to expect a call from other TV stations too. And possibly a magazine article. I guess this is our "15 minutes" of fame. Ha Ha Ha.

Our little friend Haley from Atlanta is getting her wish from Make a Wish foundation. Her wish is to have Trading Spaces do her room. Isn't that great. We are all so jealous here. Haley is doing pretty good now, please keep up those prayers for her. Our friend Aiden is in Atlanta now. He is still having problems. We hope & pray the docs can figure out what's going on & fix it. Please keep him in your prayers too.

Mark is working, working, working. I'm just trying to keep up with all the kids appointments, homeschooling, etc. Thanks for checking in on Jen & Jon. Love ya'll, Karen

Monday, November 3, 2003 2:27 PM CST

Hey all

Just got Jen's labs back. Her bili is 1, AST is 24, ALT is 31, Alk Phos is 50, GGTp is 21, bun 23, cr 0.7(really great for her). Her prograf level came back at 7.1 She doesn't have to have labs for 3 wks now. If her labs in 3 wks are stable then still stable in Dec at clinic, we'll ask about going to once a month labs. Jon gets labs just once a month. He is not due until this wk.

I will be going to the Wellness Conference on Friday to hopefully learn more about bridging from pediatric to adult transplant issues for Jen.

Guess that's all our news for now. Please remember our Atlanta friends Haley & Aiden. Aiden is now in the hospital with an infection. Thank you for your prayers for my kids & our friends. love, Karen

Tuesday, October 28, 2003 5:01 PM CST

Hey

Not too much to report. Jen gets labs tomorrow. Today she had her high school graduation pictures made. Let me know if you'd like one. She should be done with the remainder of her school work in the next few weeks. Can you believe she's just about to graduate high school?

Jon is continuing on a regular schedule with his school work. He continues to have some problems with Math. He is off all ADHD meds. We are trying to get some weight back on him before transplant clinic in December.

Both kids will be getting the flu shot tomorrow. I'm not telling them until we drive up to the doctor's office. I will probably be getting sick soon after they get the shot. I'm allergic to eggs & can't take the shot.

I will post after Jen's labs tomorrow. Please continue to remember our friends Haley & Aiden in your prayers.

love, Karen

Wednesday, October 22, 2003 4:55 PM CDT

Hey all

Not much to report. Jen is back out to labs every 2 wks. She's doing well, although starting to complain about itching on her scalp again. She's already on 600mg of actigall. I'm wondering if it's not the prograf??? Not much we can do if it is. Anyway, her liver numbers are great. Her AST/ALT is 15/18, Ggtp 18, bun 14, cr .8 & total bili is 1.0. She having a hard time losing weight, its hard with the prednisone still at 10mg.

Jon continues to do well. His AST/ALT 50/44, Ggtp 41, bun 12, cr 0.7 & total bili 0.9. As you can see Jen's numbers are better than Jon's but his are still good. These are within his normal range. He's having a hard time with school. He's off all ADHD meds because of appetite suppression. One kids eats too much & the other too little. AAAGGGGG!!! Anyway, we decided to take him off before returning to transplant clinic in December & getting fussed at for his weight loss. The team GI is aggressive when it comes to nutrition, as he should be. Jon has probably lost 10-15lbs or more. His school work is suffering but we've tried every ADHD med there is & retried some & they all suppress the appetite, at least with Jon.

We are continuing to look into fund raising for the kids. Still trying to find out how to open an account with a local bank since the national transplant funds won't help cause the kids are POST transplant. We will let everyone know when & if we do. Meanwhile just keep Jen & Jon in your prayers that they continue with good health. And please remember our Atlanta friends Aiden & Haley.

till next time, love Karen

Sunday, October 12, 2003 12:44 AM CDT

Hey all

Jen's wbc is back to where she normally runs, still on the low side but not as bad as it was. Cellcept is still on hold. We are hoping that she's able to stay off permanently. She will finish her antibiotic(cipro) this wk & that will be discontinued. That will leave her on 2mg prograf bid, 10mg prednisone, 600mg actigall & 10mg norvasc. That's only 4 meds!!!!

Prograf level is staying between 8-10 & labs are once a wk. If her labs this Wednesday she'll go to labs every 2 wks.

Jen is now watching her diet. She gained too much weight & still watching her blood pressure,so no added salt.

Jon is doing well. His last labs were great. Both kids don't have transplant clinic until Dec. Jen will be 1 yr out on Dec 30.

I will be going to a Wellness Conference in Nov in Atlanta sponsored by the Georgia Transplant Fund. I'm hoping to get info on insurance issues, job opportunities for Jen, side effects of meds, vocational rehabilitation(Jen may be eligiable because of her hearing loss). I'm also planning on eating dinner the night before with other transplant parents/kids. It's great to socialize with other families who can understand exactly what you've been through. It's also great to see their kids playing, eating, & just being normal kids. Jen & Jon will be at home with Dad during that weekend. I'm taking the weekend to go to the conference & learn about issues for the kids but also will be spending time for myself.

Thanks for checking in on Jen & Jon. Please remember our friends Haley & Aiden in your prayers. love, Karen

Thursday, September 25, 2003 7:58 AM CDT

Jen's labs on Mon & Wed were better. Her H & H is up where she normally runs, her liver labs were great & her kidney numbers were ok too. Only her white blood count is still low at 2.6. Doesn't seem to be coming up yet. Her cellcept med is still being held, hopefully this will help get that WBC back up. For the time being we just hope she doesn't come in contact with anyone who's sick.

She is still on an antibiotic(Cipro). Her Prograf(main immunosuppressive drug) has been lowered to 2mg because her level went up way too high(29-needs to be 15-20). Jen's kidneys don't like it when her prograf is high. We are concerned tho that her level will bottom out & her lft's will rise(indictes rejection). While this is worrisome it is usually what happens. And since she's still getting labs 3 times a wk if she starts rejecting it will be caught early & prograf will be increased to theraputic levels.

She's feeling fine. Back to usual teenage attitude & the sibling fighting is in full force.

I can't remember if I posted about Jon last time or not. Anyway, the decision is to not treatment him at this time for Hep C. His liver #'s are great, May's biopsy showed no scarring so the docs(Mark & I agree)that we need to leave well enough alone.

I have a question, anyone know how to set up an account at a bank for fund raising? We've looked into the national kids foundations for help but they won't because both kids have already been transplanted. Mark & I are getting nervous about Jen losing state coverage when she turns 19. She'll change from SSI/medicaid this Feb when she turns 18 to Peachcare/medicaid. This will give us 1 yr to figure out what to do. Insurance thru Mark's job is very expensive but we are trying to pay down bills so we can afford to enroll next yr. Even with insurance thru Beall's there will still be cost shares, deductibles, etc in addition to $300+ monthly premiums. Plus, Jon will lose peachcare & go on Mark's coverage so Jon will also have cost shares, deductibles, etc. So we are trying to look into setting up an account & trying to fund raise before we get to that point. If anyone also has any ideas for fund raising, we'd appreciate that too.

Please remember our little friends Aiden & Haley. Thanks for your prayers & thoughts for Jen & Jon.

Saturday, September 20, 2003 9:26 PM CDT

Hi everyone

What a week this has been. On Sunday(Sept 14)we came home from transplant family camp. We had a blast. We saw little Aiden, he looked great. Although now he's having more problems, please pray for him.

Jen & Jon started running fevers late Sun nite. By Monday morning Jon's fever was down & Jen was up to 103.7 axillary. I took both kids to the ER. Jon was ok, Jen was admitted to our local hospital. She had a kidney infection. IV antibiotics were started. During the nite(Monday) Jen's blood pressure started dropping. Her temp was up to 104.6 & took 5 hrs to break 104. Her urine output all but stopped. The transplant team in Atlanta was consulted & was concerned she was going septic. Jen was airlifted to Atlanta & admitted to PICU. Once there albumin was started & also vacomycin was started & cellcept dropped. She quickly got better. After 24 hrs she was moved to the floor. Then on Friday she was discharged.

She in now on oral antibiotics(Cipro), cellcept has not been restarted(her white blood count is still to low). She is back to getting labs 3 times a week. Her H & H is low, hopefully it will come back up on it's own. This afternoon she started getting tired again. But no fever so far, now I worry if she's getting anemic enough that she'll require a transfusion. But as for now, we are home & she & Jon are back to fighting -- yep, it's seems normal.

Thanks for your thoughts & prayers. Please remember little Aiden & Haley.

Wednesday, September 10, 2003 6:45 PM CDT

Hi Everyone

We had clinic today. Both kids labs were great. The docs were happy as can be about the kids overall. Although Jen was told to start watching the weight. Funny, it seems like yesterday(Feb) that we were trying to get her to eat. But the side effects(increased appetite)of the steriods have taken control. Dr R told Jen that she controls what goes "over the teeth & down the throat" & she can "just say no". Jen was ok with that. We'll just try to eat healthier & watch those calories & salt intake. Jon, on the other hand, lost 2 lbs since July. So he needs to eat more. It's the ADHD meds.

Jen is getting labs every 3 wks & clinic every 3 months. Jon gets labs every 4 wks & clinic every 3 months. There were no meds changes.

We are trying to concentrate on staying on schedule with homeschooling lessons. In fact, we are staying here in Atlanta until camp on Friday but no site seeing, just school work & then the kids can use the RM house playroom TV. But Hey it's something different.

If you would, please remember our little friends Aiden, Haley & Sarah. Aiden is still struggling with stablizing liver functions & seizures. Haley is battling Lupus & auto immune hepatitus. Sarah also had AIH & now has varacies.

Oh yeah, still no definative words on whether to treat Jon for hep c or not. One doc(GI) said no today & a PA(surgical) said maybe. Supposedly there is a meeting on Monday & Jon's case will be discussed. So keep checking back for the answer. Thanks for all your prayers & thoughts.

Sunday, August 31, 2003 12:54 AM CDT

Sorry to take so long to get back to update. As I thought, the team isn't concerned yet about Jon's labs. He will get labs again on Sept 10th & be seen in transplant clinic also. Hopefully everything will be ok.

Jen started having her periods in May. Poor child(opps, young woman-17yrs old) is not liking this at all. She's in alot of pain the first 1-3 days, cranky, wants chocolate. Wait that sounds like PMS, Hey that's normal. See, we do get to experience the normal things of life too.

Please remember our little friend Aiden in your prayers. We will be going to Atlanta on the 10th & staying until the 14th. The weekend we will be at camp with other transplant families. Jen, Jon & I hope to do some educational site seeing between clinic & camp. I will update after we get home. Thanks so much for checking in on the kids.

Monday, August 25, 2003 10:23 AM CDT

We got labs back on the kids. Jen's are great!!! Her hair loss is stabilizing & itching is much better.

Jon's are a little odd. His GGT is up to 62 & he usually runs in the 20's or 30's. Also his albumin dropped to 2.7. He's never run under 3.6 since transplant. I know the transplant team usually looks for a trend & tries not to focus on one set of labs but I called anyway. I'm waiting on them to call me back. I guess I'm still on high alert from Jen getting retransplanted less than 8 months ago. I'm also worried that his Hep C could start to effect his liver at anytime. I'm just concerned not too stressed out yet. At least I know his biopsy in May showed no fibrosis.

School is in session. Both kids are not really wanting to buckle down & do lessons but so far neither is behind. Even tho they've had 3 doctors appointments between them.

Time for school, I will update again when I hear from the team.

Sunday, August 17, 2003 8:23 PM CDT

Jen & Jon are doing well. Both kids get labs on Wed. We have started our new school year. So far so good. We are going to a transplant family weekend get together in Sept at Camp Twinlakes. This is the same camp the kids went to in July. We are looking forward to seeing some of our friends from Egleston & meeting new families who've also been through their kid(s) getting transplanted. We are considering letting Jen take the GED in Feb & start college in June. In order for her to get financial aid most colleges required an acredited high school diploma or GED. Either way we go, she will finish fall semester then we'll decide if she should do homeschooling until June or just take the GED in Feb(she'll turn 18 in Feb) & take a break until June. Please remember our little friend Aiden as he continues to have problems with his new liver & is also having seizures too. I will post again after the kids lab results are in later this week. Bye

Wednesday, July 30, 2003 9:10 AM CDT

Jen & Jon had labs yesterday. Both kids numbers were very good. Still waiting on Jen's prograf level & Jon's Neoral level.

Jen is still experiencing some itching & hair thinning. But at least she's still growing new hair too. She's finished her school work & is taking a break before starting her senior year of high school in August. Here we go with the "normal" stuff of life. Senior pictures, SAT's, looking at colleges, college apps, formal dance(will be a daddy daughter dance in Feb with Girl Scouts since we homeschool) etc.

Jon will be starting 7th grade. I plan to work with both kids on science projects, field trips around GA, as well as the usual 3 R's.

Jon is getting labs every 4 wks & Jen is now every 3 wks. Both kids are on a 3 months schedule with the transplant team. Still waiting on the transplant teams decision on whether or not to treat Jon. There's some debate on whether to treat Hep C if the patient is not experiencing problems with the liver. I will update as soon as I hear any news. Also please keep Aiden, Haley, & Mitchell in your prayers. Aiden & Haley we know from Atlanta and Mitchell from CLASS website(liver transplant)he is experiencing really bad rejection. Thanks for checking in.

Wednesday, July 23, 2003 6:23 PM CDT

Hey all

Jen's labs from last week were all great. She gets labs again next wk as does Jon. She's still itching tho & her hair is getting pretty thin. We are trying baby shampoo & mild soap to see if that will help.

Jon's new med for his ADHD, Provigil seems to be working. And we have been able to drop another ADHD med with the increase dose of Provigil. The real test will come when we start school again, August 11th. But so far so good, especially since the new med does not suppress his appetite. In fact, between both kids I can't keep enough food in the house to fill them up. I think we might be going in the opposite direction & have to watch that they don't become "fluffy".

Thanks for checking in on Jen and Jon. Please remember to keep baby Aiden & also Haley in your prayers.

Wednesday, July 16, 2003 4:43 PM CDT

Jen and Jon are back from Camp Independence. They had a blast. I love the t-shirts they got. It says "we love you with all our kidneys, livers & hearts." All the kids who attended are on dialysis, have had or need a kidney, liver or heart transplant. They swam, rode horses, did archery, crafts, watergun fights, make new friends, canoeing, talent show, dances, paddleboats, kayaking, ceramics, etc. Mark & I missed the kids but enjoyed the time alone together. Both kids had transplant clinic on July 3rd & had a good checkup. Jen has labs every 2 wks for 2 times then 3 wks for 2 times then out to once a month & clinic every 3 months. She had labs today but I don't have the results yet. Jon continues to do well. We are trying new meds to help with his ADHD so he's getting labs every 2 wks to make sure his liver does ok with them.

Jon weighs 92lbs & Jen 142. Jon gave us a quick lymph node scare at the end of June but it wound up being nothing. The kids are trying to enjoy the rest of the summer since homeschooling starts for us Aug 11th. Both kids get their eyes checked in August, hopefully Jen's cataracts won't be back. We are concerned since she's been back on steriods for 15 months now. But we'll see... Thanks for praying for & checking on the kids. Please pray for our friends, Aiden, Haley & Sarah who are all battling liver problems, we know them from Atlanta.

Karen

Sunday, June 22, 2003 10:47 AM CDT

Hey all

Jen & Jon both continue to do well. Jen only has labs every other week & clinic visits every other month now & is down to 6 meds. Jon is getting labs every week because he's on a new med for his ADHD. But his liver function is good. He is seen is clinic every 3 months. Jon is finished with his schooling & Jen has a few more wks to make up. Hopefully she will be finished by the end of June so she'll have the whole month of July free. Both kids go to camp July 6-12. It's a camp for kids who've had organ transplants. Thanks for checking in on Jen & Jon. Please pray for our friend Haley, she's home now but still having pain & problems. Thank You.

Tuesday, June 3, 2003 0:46 AM CDT

Sorry to take so long to update. Have had trouble with computer. The trip to Disney was great! The Animal Kingdom Lodge was fantastic. Our favorite ride was the "Tower of Terror." Jon also got his wish for a shopping spree to Toys R Us. He got a bike, ramp, legos, PS2 system & games & lots more. Plus a limo ride there & back, he really loved that.

Jen's lft's are great. Still waiting on the Prograf level. If it's ok she'll go to labs every 2 wks & clinic checkups every 2 months. Jon's number are good too. His biopsy went great, no fibrosis. Our pedi GI is showing Jon's slides & history to the adult team since they've dealt with Hep C more & see if they think treatment is advisable at this time. The pedi GI doesn't think they will.

While both Jen & Jon are doing well now, we have a friend who is not. Little Haley has auto immune hepatitus & recently diagnosed with lupus which has really flared up. Please pray for her as she & her parents have really touched our lives.

Thank you all for your prayers for Jen & Jon. We have really been blessed with good health for both kids.

Friday, April 25, 2003 5:32 PM CDT

We have sick kids here. Jen's probably got an intestinal bug. Some of her liver numbers are up, the transplant team is not too worry yet. Jon probably has strep throat, the test was negative but the doc said it's not 100% accurate. She said his tonsils looked very nasty, anyway, he's on antibiotics & after just 24 hrs is feeling better.

Jon's liver biopsy is scheduled for May 8th. Both kids have labs & clinic on the 7th in Atlanta. Mark will come up & get Jen and Jon & I will stay over at the Ronald McDonald house. Jon is to be admitted after his biopsy for 23 hrs observation. Barring any complications we should be back home that Friday the 9th.

We leave for Disney, Friday, May 2nd. The kids are getting more & more exciting every day. So am I. That's all our news, thanks for checking on us.

Friday, April 25, 2003 5:13 PM CDT

Just one more thing. I forgot to say that Jon's liver biopsy has been scheduled. It's Thurday, May 8th. Both kids have appointments in Warner Robins on Tuesday the 6th & after that we hope to get a room at the Ronald McDonald house in Atlanta for the night. On the 7th both kids have labs at Egleston & transplant clinic at 1pm. Mark will pick Jen up that night & Jon and I will stay over again so we can be at the hospital at 7am for his biopsy. Jon will have to stay overnight in the hospital as a precaution. He is very nervous, he does not really remember much about being in the hospital himself. He just remembers Jennifer as a patient. But Mark & I are trying to reassure him.

Thursday, April 17, 2003 1:56 PM CDT

Hey all

just a quick update. Jen's labs were good. Still waiting on Prograf level but evidently her liver likes the level where it is. We are also still waiting on the date of Jon's biopsy. And only 15 days til Disney. Next Wednesday the Make a wish Ladies come here to talk to Jon about his wish. His can't decide... bye ya'll

Sunday, April 13, 2003 7:47 PM CDT

Well Jen's labs on Wednesday were all down. Enough that the transplant team feels comfortable with Jen getting labs once a wk & coming to clinic only once a month. They also dropped her Acyclovir, Bactrim, Aspirin & after she finishes her current refill of Actigall that will be dropped too. So she'll be down to 5 meds. However, her blood pressure has been up some so her Norvasc was up & the new dose seems to be controlling her BP well. We are still waiting on the date for Jon's biopsy, probably in the next few weeks. The kids are counting the days down to our trip to Disney World. Thanks for checking in on Jen & Jon.

Wednesday, April 9, 2003 8:36 AM CDT

Hey all

It's been too long, have had trouble with the computer at home. Jen, Jon & I are at the Ronald McDonald house. Jen had labs at the hospital this morning & will be seen in clinic this afternoon. Her liver numbers were up on Monday, hopefully they will be back down today. If not we'll see what the docs say in clinic. Possibly a biopsy, or who knows. Jon will be scheduled for a biopsy soon. This transplant team wants to access his liver for scarring. Guess where we're going in May???? Disney World.
Jen got a wish from the Marty Lyons foundation. We'll be spending 3 days in the Animal Kingdom. We'll also visit two other Disney parks. We can't wait. Jen had better not get sick! Thanks for checking on them.

Thursday, March 13, 2003 7:25 PM CST

Jen was admitted to Egleston Wednesday at lunch & had her liver biopsy at 4pm. Today the results showed mild rejection. The transplant team feels it's due to a low level of antirejection medication & increased her dose starting with tonights dose. Todays labs were actually down & hopefully tomorrows will be down also. If they are down we'll go home. We are at the Atlanta Ronald McDonald house. If they are up then she'll get solumedrol(steriods). Hopefully as an outpatient & we'll just stay at the RM house for a few more days then home. She is still gaining weight & energy & is chasing her brother.

Tuesday, March 11, 2003 7:27 PM CST

Hey all

I am writing this from the Atlanta RM house. We can up this afternoon since they had a room open. Jen's labs on Monday were up even more than last Thursday. She has labs at 9am & clinic at 1pm tomorrow. If her liver numbers are not down she will be admitted to the hospital on Thursday for a biopsy. She is gaining weight & feeling well. Her prograf level are too low & her dose was increased so hopefully her numbers will be down tomorrow & we'll go home after clinic. Keep her on your prayer list!!!

Thursday, March 6, 2003 1:40 PM CST

As of Monday, March 4th labs Jen's liver #'s were up a little bit but her kidney #'s were down completely to the normal range. The tx team called today to increase her prograf & we are waiting on today's(3/6/03)labs to be faxed from the local hospital to the team. Hopefully her liver #'s didn't go up more. She is continuing to increase in weight on the home scales & her energy level is definitely going up.

Thursday, February 27, 2003 4:22 PM CST

We received great news at clinic yesterday. Jen's labs were better. Her central(IV)line in her neck was removed & so was the feeding tube!!!! Yeah, She was so happy to finally be tube & line free for the first time in over 8 wks. Jen will continue getting labs twice a wk but doesn't have to come back to clinic for two wks. So now as long as she keeps her weight up the feeding tube won't go back in. The only blue spot in our day was that our friends the Hawks continue to have to stay in Atlanta with their son Aiden who was transplanted 9 days before Jen. Aiden is a beautiful blonde hair, blue eye baby boy who is having some difficulty stabilizing liver functions. We pray daily for Aiden & his parents & would like to ask that all who read this please pray for Aiden too.

Wednesday, February 26, 2003 7:00 AM CST

Jen & I are at the RM house. We came up last night for labs & clinic today. Some of Jen's labs were up on Monday. Her AST & ALT were up to 60 & 22, not to bad, but compared to where they were last Thursday it's significant. Also her H & H are down to 8.3 & 23.5. That means her blood counts are dropping. I decided to come up since the RM house had a room, just in case we are asked to stay in Atlanta again. I'll post news this evening on how clinic went. Hopefully I'm just over reacting.

Sunday, February 23, 2003 1:12 AM CST

Jen is doing well with her tube feeds. By the 2nd night on feeds she was up to 150cc/hr. So she's getting the 1500(calories) the transplant(tx) team wants. She's also eating lunch & supper on her own. Our home scales show 4-6 lbs weight gain(I'm not sure that's right). We'll keep a check on that & see what the scale at tx clinic show on Wednesday. Her H & H on Thursday were up to 10 & 30. She is still so very glad to be home.

Wednesday, February 19, 2003 6:36 PM CST

Guess what everybody. Jen is HOME!!!!! We went to clinic Tuesday afternoon, got blood & ng tube placed & then were release to come home. We got home after 10 last night. Jen starts tube feeds tonight & has labs tomorrow am. Hopefully her H & H were down due to all the labs draws & are back up after the blood received on Tue. She is so happy to be home. We are waiting on Mark to get home so we can have Birthday cake & Ice Cream. Jen's b'day is Thursday but Mark will be out of town so we're celebrating tonight. Thanks everybody for your support, prayers, & thoughts.

Monday, February 17, 2003 4:21 PM CST

Today labs brought mixed reviews. Jen's liver numbers are still good. Her AST & ALT are 17 & 12. Her GGT & AkPhos are still continuing to improve. Her kidney function numbers are better, creatine is normal & bun is down to 25. The area of concern is her H & H. They are down to 7.9 & 22.2 She has to go in to clinic tomorrow instead of Wed. Dr. Romero should start tube feeds & I'll find out if they want to ride out her H & H or give blood. So I don't know if she'll be admitted or not. The team coordinator said probably not, but we'll see what the docs say. If she's admitted I probably won't be able to post another update until Wed sometime.

Friday, February 14, 2003 2:42 PM CST

Jen labs from this morning are back. Her liver numbers look great. Her bun is up to 29 but creatine is holding at 1.1. Best of all, her prograf is down to 16.8. The desired range is 15 to 20. So now we try to get her to eat, eat, eat to avoid that feeding tube on Wednesday!!!!

Thursday, Feb 13, 2003

Jen & Jon were orginally transplanted at Children's Medical Center of Dallas in 1993, 15 days apart. Jen had many problems & remained hospitalized for 126 days. Jon was in & out in 13 days. It took Jen almost 18mos to recover. She had about 7 1/2 years where she did well. We moved to Georgia in 1999. In May of 2002 a liver biopsy showed progression of her scarring to cirrhosis. Mark & I had to decide whether to move back to Texas for retransplant or switch to the transplant team at Children's Healthcare of Atlanta at Egleston. We looked into the team at Egleston, talked about having family nearby & knew we had wonderful friends that offered to take care of Jon & finally made the decision to stay in Georgia.

We switched transplant teams in July. not knowing that the next month Jen would get so sick that she had to be transferred from Crisp Regional hospital to Egleston by ambulance. Her Ammonia level was high & retransplant evaluation was started upon her arrival in Atlanta. She was officially listed by the end of August. After waiting 4 months & with a peld of only 13, we got the call that a liver was available for Jen.

She was retransplanted on Dec 30, 02. She did well for the first wk. Then she had problems with responding to us appropriately & was sent for a CT to make sure there were no issues with her brain. The CT was not really conclusive & she was not able to have an MRI because she still had staples. So we waited & the docs tried to d/c all pain meds in case the meds were the problem. After 2 wks it finally turned out it was the meds.

In the meantime her kidneys started to fail. Her bun got up to 96(normal is less than 20) & her creatine was 7.9(normal is 1.0 or lower). She had CVVH(type of dialysis). However, she kept clotting off the CVVH circuits. She clotted off 4 or 5 & the docs decided to wait to see if her kidneys would start to work. The teams took her off Prograf(rejection med) to give her kidneys a break. They had to tread a fine line between trying to not further injure her kidney with Prograf but yet not lose the liver to rejection. After much concern & prayer her kidneys finally kick in. Currenly,her bun is stuck around 24-27 but creatine comes down to normal or just above normal.

During these issues Jen was on & off the ventilator 3 times. I guess 3 was the magic number. She scared us, the nurse & respiratory therapist when said said "I can breathe", "I can breathe". We all thought she was trying to say I can't breathe. Anyway, her lungs remain clear & her voice is very slowly returning to normal.

Her prograf level is running high. That in itself can still cause her kidney functions to remain elvated. The docs did d/c a med that can increase Prograf levels. So the hope is that the Prograf level will come on down, but hopefully not to low.

Her main problem now is with weight gain or lack thereof. She lost 6 lbs in 1 wk. That's 28.3 lbs since Dec 30th. She has to gain 1.5 lbs before Feb 19th or tube feeds will start. So we probably have another few weeks here at the Ronald McDonald house. But Jen is down to only having the central line in her neck. All other lines have been removed, yeah!!!!!

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