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Saturday, August 11, 2018 8:40 PM EDT
John Albert Maicher - Obituary
John Albert Maicher passed away on August 4, 2018 at the age of 33. Originally from Burholme, Philadelphia, PA, the family moved to Birdsboro, PA, in 1993. He was the loving son of Albert & Sandy (nee Lightbody) Maicher; Grandson of Marge & John Lightbody of Reading, PA (formerly of Burholme), and Grandson of Helen and the late Albert Maicher of Philadelphia, PA (formerly of Burholme). John is survived by his Aunts and Uncles: Susanne (Maicher) & James Malazita; Steven Maicher & Gina (Seiberlich) Maicher; Elizabeth (Maicher) & Thomas Dowling; Katherine (Maicher) & Jerry Dooling; David Maicher & Lorrie (Lawrence) Maicher; as well as First Cousins James, Steven, Rebecca, Megan, Michael, Katie, & Jenna. John was born on August 8, 1984 and had a lifetime of medical problems and issues. That did not stop him however from living life to the fullest. John was a student at Birdsboro Elementary School and was in the School Band, Choir, and Space Camp. John graduated from Daniel Boone High School in 2003. While in HS John joined Daniel Boone’s Band where he was a percussionist and played at the football games and Cavalcade Competition events. He participated in school Chorale, Choir, Show Choir, Select Choir, Senior Choir, Percussion Ensemble, County Chorus & District Chorus. John also helped out in the summer with Band Camp. John participated in school plays and played the role of Doctor Seuss in Dr Seuss Read Across America. John was a member of the Drama Club, DBHS Play, DBYEA, FCS Membership, Announcers Club, wrote for Voices and the HS Newspaper, and was a National Honor Society member. John graduated college from Millersville University in 2011 with a Bachelor of Science degree in Communications with a Minor in Print Media Studies. John participated in the Men’s Choir, the regular Choir, and Band where he was a percussionist. John was both a Cub Scout and Boy Scout in Troop 595 Birdsboro where he won his first Pinewood Derby race. John loved sports especially playing little league baseball where he was on the Birdsboro Sportsman’s Club Team. He also played on St. Mark’s Lutheran Church’s team. He enjoyed playing street hockey with his friends and played team hockey at Timberline where he designed the teams jersey, The Blue Bombers. John tap danced for 10 years at the Dance Centers Studios. After college John worked at the Reading Eagle Newspaper in the Marketing Department and he hosted the TV show “Just Say Sports” on the Berks County PBS TV Channel. John was friendly to everyone he met and was loved by many. Heaven gained an angel and he will be sorely missed.
Family and Friends may call from 8:00-10:00 a.m. on Saturday, August 18, 2018, at St. Mark’s Lutheran Church, 5 Brooke Manor, Birdsboro, PA, 19508. Services will be at 10:00 am with burial to follow at Birdsboro Cemetery.
Friday, August 10, 2018 10:43 AM EDT Viewing and funeral for John Maicher will be Saturday, August 18th at St. Marks Lutheran Church in Birdsboro. Times to follow. We would like to ask anyone planning on attending to wear bright colors or sport jerseys, no black (black jerseys are fine). John was all about sports and the brightest colors he could find.
Tuesday, August 7, 2018 2:21 PM EDT
Sunday, August 5, 2018 9:03 AM CDT My heart is broken and I don’t know what to do. John Maicher was my life and now he has been taken from me. I wish I could go with him. No longer will I hear “Mamma!” when I walk through the door. No more trips for milkshakes or movies. No more hugs just because, no more I love you’s!
Thursday, August 2, 2018 7:11 AM EDT The doctors think John might be going into rejection. They are going to try a different anti-rejection medicine. It is very hard to watch your son suffer and there is nothing we can do to make him feel better. John begs us not to leave and is telling everyone he is dying. The doctors and nurses tell him he is doing good. It is just heartbreaking. Please continue to pray for him.
Saturday, July 28, 2018 2:04 PM EDT John Maicher had a fluoroscope done Thursday to see if he can start to be fed. Unfortunately he has a small hole where the esophagus and stomach connect so no food for John yet. Please keep the prayers coming.
Monday, July 23, 2018 8:18 AM EDT Albert and I drove over to see John Sunday. He is much better and was trying to talk to us the whole time we were there. They still have a lot of fluid to remove but he says he feels much better. He is having difficulty trying to move his arms and legs they are very stiff and with his swollen arms it is frustrating for him. They have not started feeding him. They are giving everything time to heal so they don’t have to do anymore repairs. He has a long road to recovery and healing.
Friday, July 20, 2018 2:08 PM EDT John is very, very, swollen today. He is going to get dialysis and they are planning to start daily dialysis to try and keep the fluid off of him. His kidneys aren’t working well since being transplanted and his upper body drainage is poor. Please say some extra prayers for him. Thank you.
Tuesday, July 17, 2018 11:45 AM EDT John is doing better. He says he wants to come home. Physical therapy continues to work on his mobility and the amount of time out of bed. Respiratory continues to work on extending the amount of time John breathes on his own off of the ventilator. We are still trying to read his lips. He is still on intermittent dialysis and we need to pray that his kidneys start to function better. John is still on IV TPN and they have not started NG tube feedings. The drs want to make sure the esophageal stenosis is completely healed.
Tuesday, July 10, 2018 7:36 PM EDT UPDATE
Tuesday, July 10, 2018 7:04 PM CDT Sandy and I needed to speak up today about John’s care. Yesterday he was moved to another section in the ICU, supposedly because he was doing better. Some mistakes were subsequently made, and John has had a setback. Sunday, July 8, 2018 7:33 PM EDT UPDATE
Wednesday, July 4, 2018 9:12 AM EDT John
Monday, July 2, 2018 11:59 AM CDT Drove 2 hours to come see John got here can’t get in hospital on lockdown helicopters, police, SWAT team. We waited 1 1/2 hours had lunch and still couldn’t get in. Heading back to Naples.
Friday, June 29, 2018 2:46 PM EDT UPDATE
Wednesday, June 27, 2018 8:53 AM EDT Tues 6/26
Monday, June 25, 2018 12:13 AM CDT UPDATES
Friday, June 22, 2018 5:40 PM EDT UPDATE
Wednesday, June 20, 2018 6:04 PM CDT Wednesday
Tuesday, June 19, 2018 6:25 PM EDT UPDATES
Saturday, June 16, 2018 8:00 AM EDT Fri Jun 15
Thursday, June 14, 2018 6;11 PM EDT John’s color is better today and he’s more awake and responsive. Temp good, still on warming blanket. Nothing back yet from the blood cultures (good). They were able to take him off of 1 BP med (good). Saw Transplant and the ICU doctors and they are on top of things. Transplant dr said John will have a few more take backs to surgery and they’re still planning on doing an abdominal wall transplant. We brought John’s I-Pod in and are playing music for him. John responded well to us today considering the amount of sedation he is on. A good sign.
Wednesday, June 13, 2018 8:03 PM EDT Wednesday June 13, 2018
Tuesday, June 12, 2018 4:33 PM CDT Surgery went well. It lasted about 3 1/2 hours. John’s large colon is now hooked up. Doctor Beduschi said the organs look good and John is doing well. The doctor mentioned several times that John’s recovery will take a long time. They are going to look for an abdominal wall to transplant onto him because John’s abdominal tissue is so thin.
Tuesday, June 12, 2018 4:33 PM CDT Surgery went well. It lasted about 3 1/2 hours. John’s large colon is now hooked up. Doctor Beduschi said the organs look good and John is doing well. The doctor mentioned several times that John’s recovery will take a long time. They are going to look for an abdominal wall to transplant onto him because John’s abdominal tissue is so thin. Monday, June 11, 2018 5:03 PM CDT John isn’t having such a good day today. His heart rate is too high and his blood pressure is too low. They stopped pushing fluids so they can get more of the swelling down. He didn’t make it to the OR today because they had several organs become available and needed the rooms for Transplant surgeries. He is now scheduled for tomorrow.
Wednesday, May 30, 2018 9:30PM EDT This is 2 days of Facebook posts.
Monday, May 21, 2018 6:09 AM EDT John has been doing somewhat better the past 2 months and only last week had he started to bleed again. He needed to go to the ER last Thursday and received a blood transfusion. Since then he is still bleeding off and on so we will need to keep a close watch and get him transfused if he drops too low again. We also reached out for help and advice on what practices and materials are available to help keep his ostomy dressing on for more than just a few hours. They suggested using a special powder mixed in with the paste to make it stick better. The dressings have been lasting a little longer but they are still an issue. John had a clinic appointment last week at Miami and the Transplant team was happy we has doing fairly well. Still no word on when organs will be available or when he would be transplanted. Please ask everyone you know to consider becoming an organ donor for themselves and their children.
Friday, March 30, 2018 5:22 AM EDT Thank you to everyone who bought a Butterbraid from the fundraiser for John Maicher. A special thanks to Stephanie Butters- Hallman and Gina Maicher for doing the fundraiser for us. John and I have have had a rough month with his dressings on his belly because he has been carrying so much fluid. They have not wanted to adhere to his stomach because everything is so wet.. sometimes doing 4 dressings in a day.
Saturday, February 24, 2018 6:56 AM EST John was born with a birth defect that has left him struggling with health problems and various surgeries throughout his life. Due to ongoing complications, John is in need of a life saving organ transplant. He is currently on the national organ donor waiting list. John’s transplant will involve transplantation of his liver, stomach, small intestine and pancreas. It will be performed at the Miami Transplant Center. Mom has left her job to move to Florida with John and be his caretaker. The family is separated. John and Mom have to travel back and forth from the apartment they are renting to the Miami Transplant Center and the family is enduring numerous out of pocket financial expenses. They have been doing this for over a year and finances are strained. Please consider donating to John's GoFundMe site to help this needful family. Thank you.
Wednesday, February 21, 2018 6:33PM EST Sandy wrote: "John is home resting with his new friend Oxygen. Our apartment is turning into a mini hospital. Tomorrow the wheelchair arrives. BUT, he is thrilled to be home and already talking about what trip to take next lol. Love to everyone.
Sunday, February 18, 2018 12:06 PM EST This week has been a tough week... but wait, lately they all have been. As I sit in my room tonight feeling sad and I think about how sick John is I am very glad I still have him in my life. My heart aches for all the families of those young adults killed this week in Florida and those struggling to survive. Please pray for those families. Hug your children everyday. Children dying from the flu and cancer, it is just not fair and I do not understand why and don’t think I ever will. I do need to update you on John. John is in the hospital tonight with fluid in his lungs, pre pneumonia and anemia. I can’t hold back on everyone and say everything will fine. John’s health is deteriorating every week. We are not blind just hopeful. His body is giving out. I can’t even say he will make it to transplant, but he is a fighter and he says he is not going down without a fight. We now need a wheelchair to go out and do things and he looks so tired all the time. But his laughter and smile always shine through no matter what. To anyone who says he would be better if he stopped fighting he would be pain free ... shame on you because you do not know the true John. He has probably already had more pain then you can imagine and he chooses life. If you don’t like my negative posts then don’t read them. Albert and I love our son more than life and if he wants to fight we will fight with him. All of your prayers, love and support have meant and always will mean so much to the three of us. Never take anything for granted but do take the time to love and hug the ones you love.
Thursday, February 1, 2018 6:01 AM EST Sad to be leaving.
Tuesday, January 30, 2018 3:03 PM EST I took John to the ER this morning for another bleed. He lasted a full week this time before bleeding enough to have to go to the emergency room again.
Tuesday, January 30, 2018 11:12 AM EST Took John to the ER for another bleed this morning. He lasted a full week this time.
Thursday, January 25, 2018 8:30 AM EST I am heading down to Florida today to be with John and Sandy. John was discharged yesterday after spending 50 days in the hospital. He continues to bleed off and on. When he is home and has an especially severe bleed we need to take him to the ER asap. It is going to be this way until he gets transplanted. The financial and emotional stress on our family has been formidable. Please continue to pray for John to be transplanted and strength for all 3 of us. Thank you.
Friday, January 19, 2018 6:06 AM EST John is still in the hospital. He was to be discharged Thursday but his hemoglobin level was too low because he had started to bleed again. They gave him 2 units of blood and he might get out today.
Friday, January 12, 2018 11:55 PM EST John is still in the hospital and had an Angioplasty done yesterday which was very successful. The left side of his vascular system is now completely open. John says he can feel the difference and feels much better from it. The doctor wants to perform the procedure next week to his right side and get that completely open also.
Monday, January 8, 2018 4:42PM EST John had a set back today, he is bleeding and back on oxygen. He is really down, depressed and wanting to give up. I know we all lead busy lives but if just one of you could reach out to him it would be appreciated.... his life is worth living and fighting for. If anyone wants his email or phone number just message me. Thanks
Wednesday, January 3, 2018 9:22 AM EST
Thursday, December 28, 2017 7:52 PM EST
Wednesday, December 27, 2017 10:53 AM EST John will be having the IR procedure done today (Weds) instead. They weren’t able to schedule it for yesterday because it could be very lengthy. They plan to try to open up his blood vessels that have become blocked with obstructions. This will help with his current situation and better prepare John for Transplant.
Tuesday, December 26, 2017 7:48 AM EST Today John will be having a procedure done in Interventional Radiology. He has a vena cava obstruction. This is the large main vein in the chest area. This obstruction could explain why John keeps swelling up with fluid and too much pressure could be causing the bleeds. He is still in ICU but has started improving.
Saturday, December 23, 2017 7:10 PM EST John is still in the ICU. He’s doing better. Bleeding hasn’t stopped but he’s not pouring it out like yesterday. They did a scope but couldn’t pinpoint any certain spot as the cause. They said the whole area around the stent is irritated and bleeding. His blood pressure has also come back up. John was given 12 units of blood throughout the day. In the beginning he was putting it out faster than they could put it in. Sandy and I are staying in Miami for the weekend to be with him. Thank you for the prayers.
Friday, December 22, 2017 7:40AM EST John had a scope done on Wednesday and they found a 2nd stent that was just lying in there not doing anything so they removed it.
Wednesday, December 20, 2017 8:29 AM CST Sandy is okay. Thank you Lord. She needs to make some changes to her diet. One family member done, another one to go tomorrow. Thank you all for the prayers.
Tuesday, December 19, 2017 9:38 AM EST I am down in Florida with Sandy and John. Today Sandy is having outpatient testing done at Physicians Regional Hospital. Please say a prayer everything turns out okay.
Friday, December 15, 2017 5:47 AM EST Sandy wrote:
Wednesday, December 13, 2017 5:55 AM EST OMG! I can’t believe this. Now Sandy is in the ER with back spasms. Please God help us!
Tuesday, December 12, 2017 5:42 AM EST Sandy wrote: "I just spent the weekend with John Maicher over at Jackson Memorial Hospital in Miami. It has been a tough and emotional week. I wish I had better news to report but John is really fighting for his life. The doctors can not get the bleeding to stop and as I post he is receiving his 9th and 10th unit of blood in one week. Albert, John and I are not convinced that the liver transplant team is doing all they can to find out where or why he is bleeding. I can’t go into all the details but we as a family will not except there is nothing they can do without checking out all the options. John really needs a super prayer chain right now. Love to all of you and please say extra prayer tonight, if you can, for John and others who have been told there is nothing they can do."
Tuesday, December 12, 2017 5:42 AM EST Thursday, December 7, 2017 8:59 PM EST ***UPDATE ***
Monday, December 4, 2017 7:20 PM EST This has been a very bad week for John. He had been passing huge blood clots all week bringing him to the hospital on Friday. Miami wanted him transferred but Physicians Regional said they wanted to stop the bleeding first. Saturday they sent him home saying he wasn’t sick enough to be transported which Miami said is untrue he is a Transplant patient. Saturday night John passed the biggest blood clot I have ever seen but that was the last trace of blood we have seen. Today John got to try out Florida’s 911 service and was rushed back to the hospital unable to breathe, swollen and weak. I have been feeling so overwhelmed..Albert is not here but I am grateful for my cousin Linda S Bianchini and my friends at the apartment complex for their support. Thank you RuthEllen Walters for coming and sitting with me today since I am falling apart.
Saturday, December 2, 2017 6:34 AM EST John is in the local hospital close to the apartment with another bleed. His oxygen was also low. Miami wants him transferred there so they can handle the bleed plus also remove the lymph node. The local hospital says he's not stable enough to be transported and they'll discuss whether to transfer him to Miami after he is.
Tuesday, November 28, 2017 06:15 AM EST And when Sandy’s also not feeling good, Albert worries and stresses.
Saturday, November 25, 2017 20:31 AM EST When John’s not feeling good, none of us feel good.
Saturday, November 4, 2017 5:52 AM EDT Sandy wrote:
Wednesday, November 1, 2017 12:06 PM EDT Sandy, John, and Freddie, arrived at their Florida apartment Monday night after driving for 2 days. My wife is a very strong and brave woman. I prayed to God constantly while they were traveling and am very thankful He delivered them safely and kept the car running that was frequently bucking and stumbling.
Friday, October 27, 2017 2:56 PM EDT Sandy wrote: "Great news.. Johns labs are improving and looks like we are good to leave Sunday to drive back to Florida.
Monday, October 23, 2017 5:40 AM EDT Sandy wrote: "Saturday was a great yet scary day. It started off celebrating my mother-in- laws birthday. She is a wonderful loving and caring person. We got to spend some quality time with Alberts sister Liz , her husband Tom, and my niece and nephew Megan and Mike..I love them all so much. While at breakfast we got a call from ID that they were very concerned with Johns white blood count and hemoglobin. So from Philadelphia we headed to St. Joseph Medical Center for stat labs. The good thing is his numbers came up and his IV meds are on hold. He is scheduled for a blood transfusion this week."
Saturday, October 14, 2017 7:57 AM EDT Mixed emotions with this post. John Maicher's appointment went good today. His lungs are clearing so he is responding to treatment. We will still be in PA for another 2 weeks to finish up medications..and a new one was added today. So, John and I will be leaving for Florida at the end of the month. Unfortunately due to the poor condition of his lungs at this time he is unable to be transplanted. It will be up to Miami when John is well enough to be listed again. He will not lose wait time and will resume where he was when he is cleared. Thank you for all the love, prayers and support you have all given us.
Friday, October 6, 2017 6:43 PM EDT John Maicher was discharged yesterday from the hospital. He has two more weeks of IV antibiotics. He has to go back to Georgetown next Friday to see ID and Transplant. He will also have a CT scan done of the chest to see how his lungs are doing. Thank you everyone.
Sunday, October 1, 2017 7:32 PM EDT
Tuesday, September 26, 2017 4:40 PM EDT Monday
Thursday, September 21, 2017 10:17 PM EDT We are all home in PA. Our friends down in Florida tell us things are starting to return to normal. Hurricane Maria did not hit them after Irma. The cats are struggling to get along now that they are all together, with Fred being the aggressor. We are making plans to return them back to Florida. Thank you all for the prayers during Hurricane Irma.
Wednesday, September 13, 2017 12:38 PM EDT We are all safe.
Sunday, September 10, 2017 2:30 PM EDT Sunday 10 Sep 2017. Down here in SWFL outside of Naples during hurricane Irma. Total loss of power since 1:33 pm Sunday 9-10-17. 2 trees down outside and numerous long palm tree branches. Worst winds yet. Keep us in your prayers.
Thursday, September 7, 2017 11:05 PM EDT Hi everyone..we have decided to stay in Florida. According to all the models right now Irma will possibly hit us as a Cat 4. This apartment building was built to Cat 5 standards but the main thing is we need John Maicher's TPN, Hydration, Additives, and supplies, as he is running out and he needs them to survive. They get delivered tomorrow. We have food and water and if we try to leave after the delivery it will be too late. The gas stations here are closed and are out of gas. It is safer to stay here than be stranded on the highway. I am glad Albert Maicher stayed with us. Please keep all of us affected by Irma in your prayers. Also my friend Megen Schorn is in the catastrophic area on the map. Please keep her in your prayers. We made it through the fires and I am sure God will get us through the hurricane.
Wednesday, September 6, 2017 12:37 AM EDT I finally got a callback from American Airlines and cancelled my return flight to PA. I'm staying down here with Sandy Maicher and John Maicher through Hurricane Irma and will come back when they are safe. And our cat Fred too. Please pray for everyone down here in SWFL. Thanks!
Monday, August 14, 2017 2:27 PM EDT Sandy writes:
Friday, August 4, 2017 We heard from Miami yesterday and they let us know that John's new MELD score is 24, up two points. The lymph node in John’s arm is slightly enlarged but still normal. They are waiting for Dr. B to check out the CT scan and make a determination. Right now John is feeling pretty good. And when John feels good, Albert and I feel good. We are looking forward to Albert coming to visit us the end of month.
Tuesday, July 25, 2017 On Monday we left at 7:00am and returned at 7:00pm. We spent a long day in Miami. John needed at CT Scan of the neck, chest, abdomen, and pelvis to check his lymph nodes. We will not know the results until the end of the week. If the CT Scans show more swollen lymph nodes, Dr Beduschi wants the lymph node in the armpit removed so their pathology department can analyze. John could be having issues from the anti-rejection drugs he has been on. It can be treated. Dr B also said it was okay to have a GI doctor check John's stent and ostomy area to see what could be causing the bleeding and treat it if possible.
Wednesday, June 28, 2017 I am happy to report John’s lymph node biopsy showed normal tissue. John has continued to bleed on and off. This past week while helping John change his ostomy dressing, Sandy saw a tiny hole inside of the ostomy hole where the blood is coming from. We’re wondering if maybe a strand of wire came loose from the stent and is poking a hole out from the inside. Transplant has said they do not want to do anything to disturb John’s insides because he’s on the transplant list and this will all be coming out anyway, but, if they could bend or remove it somehow, maybe the bleeds would stop. Sandy and John are coming back up to PA for a visit in July. They are homesick and want to see their family and friends. This will be a logistical challenge in order to get several days of supplies shipped up for John’s daily needs. It has been raining daily where they are living in Fla for the past several weeks and the snakes and alligators have been coming out. Instead of looking up for where they are walking, they need to also look down for where they are stepping!! I have added the two photos.
Wednesday, May 31, 2017 7:10 PM EDT Sandy writes:
Monday, May 8, 2017 9:22 PM EDT I am sharing my wife’s post from their clinic appointment yesterday at the Miami Transplant Institute. There have been no organ offers for John. Sandy and John will have to wait and stay down in Florida longer than expected. We need your help and support. Please consider making a donation on John’s Go-Fund-Me link below. Thank you.
Wednesday, April 19, 2017 4:43 PM EDT
Wednesday, April 5, 2017 07:00 EDT ***UPDATE ON THURSDAY APRIL 6, 2017***
Thursday, March 23, 2017 This has been a quiet week for John. He has had no bleeding, however, his hemoglobin continues to slowly drop. His albumin level, although higher than it has been, is still low. I expect the trend will necessitate a bag or two of each for him next week.
Wednesday, March 15, 2017 John had another bleed and his hemoglobin this week is back down to 5.7. Sandy will be taking him to the ER again today. They never should have discharged him last week while he still had an active bleed going on.
Tuesday, March 7, 2017 4:11 PM CST Well, there certainly has been a lot going on down here in Florida. John was admitted to the hospital last Friday, March 3 with a hemoglobin of 4.6. He spent 4 days and after 4 units of blood came home on Monday. John is not bouncing back as quickly this time which shows the liver failure is taking its toll on him.
Saturday, March 4, 2017 1:11 AM EST
Thursday, March 2, 2017 8:59 AM EST Please say some prayers for John. He has started with a bleed. We are monitoring it closely. We all know by now how much John does not like having to go to the hospital. The nurse is coming out this morning to draw a CBC to see where his hemoglobin level is at and if he needs to get a blood transfusion.
Friday, February 24, 2017 5:43 AM EST This week John and Sandy were supposed to go to Miami for an injection and a pulmonary visit. After discussing these appointments with Miami Transplant, they felt that John could get the injection from his new family doctor, and if need be he can see a pulmonary doctor in Naples. This has saved them from having to endure a long day migrating through the Jackson Health System and the corresponding Miami traffic.
Monday, February 6, 2017 8:35 AM EST John, Sandy and I want to thank Angels for Ally, Jill Heimbach Heintz, and Shane Heintz for the wonderful Beef and Beer event held for us on Saturday. We also want to thank everybody that took the time and money to make and donate baskets, purchase tickets, set up tables and clean up afterwards. We truly appreciate your support and generosity to help us with John’s transplant expenses.
Wednesday, February 1, 2017 6:51 PM EST Time is running out but you still have today and tomorrow to purchase your tickets to Angels for Ally's Beef and Beer event this Saturday. Come out and honor the memory Ally Heintz and help out a great cause at the same time! For tickets go to Eventbrite.com and search Ally's Beef and Beer. Thank you all for your support!
Thursday, January 19, 2017 Johnny had a bleed over the past weekend. On Monday the nurse drew labs as scheduled and Tuesday we found out Johns hemoglobin level had dropped dangerously low. Miami called and told us to go immediately to the closest ER. At the ER the doctors thought it would be wise to admit him so they could monitor John while transfusing him. They kept him overnight and he received 3 units of blood. John was discharged yesterday. Please continue to pray John gets the organs he needs. Thank you.
Saturday, January 7, 2017 5:36 PM EST John has been officially listed at Miami. His MELD is 25. The transplant coordinator said he could get the call today or in a few months and that there may even be a few "dry" runs. In other words, we get the call to come and then it gets cancelled. In the mean time Sandy and John are exploring the area, keeping doctors appointments, and transferring medical services from PA to FLA.
Sunday, January 1, 2017 5:45 AM EST Sandy wrote: "What a year 2016 was...First and most importantly John's health continued to decline. I broke my foot, my mom broke her hip, my dad had a blood and gallbladder infection. Then we went through our travels to Miami to get John listed down there for transplant. As we end 2016 John is still NOT listed at Miami, but John and I are enjoying our quality time here in Florida. There is one thing missing, Albert Maicher. You are our rock. Thank you for taking care of us and for all you do for us and my parents.
Wednesday, December 28, 2016 So we met the Psychologist yesterday. She said John will be okay from an evaluation standpoint. This was the last transplant evaluation appointment we needed to have done in order for John to be listed with Miami's transplant program. Now we just have to wait and see if they bring John up this Thursday and accept him. We wonder what his MELD score will be and how long a wait we will have with Miami. Please continue to pray for John and Sandy and I as we hope this is God's plan to finally get Johnny fixed and able to live a better life.
Wednesday, December 20, 2016 Sandy writes: Long, long day... John was suppose to have a doctors appointment at 3:15 with the psychiatrist to complete the transplant evaluation. We drove 2 hours after having to do an emergency dressing change and getting lost, only to be told the appointment had been cancelled. John said we drove all the way over here. Can I get my labs, vaccines, and chest x-ray done today since we drove all this way so we don't have to be here at 8am tomorrow? After discussing with everyone they agreed...
Thursday, December 15, 2016 5:38 AM Sandy wrote: "We have been in Florida now for a week and a half. We are doing well and enjoying Florida. Next week on Tuesday we head to Miami for a doctor appointment and again on Wednesday. If all goes well John should be officially listed at the Miami Transplant Institute on Thursday. We have been working hard with all the physicians, pharmacist and home infusion to get everything in place down here. John is very very tired and sleeps a lot. As hard as it is for us to be down here we know this is where we need to be. Albert Maicher's holding down the fort back home in Birdsboro and we miss him terribly. During the holidays John and I ask that everyone take a look around and appreciate how everyday counts..give that extra hug, say I love you even if you just said it, and cherish the times you have with family and friends. Thank you for your prayers and support."
Saturday, December 10, 2016 10:33 AM EST We are starting to settle in. Moving was definitely an unpleasant experience. We drove straight through Sunday-Monday. However the movers didn't show up with our medical supplies, clothing and furniture until 8:30pm Thursday night. Miami squeezed in an appointment with Infectious Disease this week and it went ok. The doctor is very through. Everyone down here wants to get John on the transplant list ASAP. On 12/20 John has his last appt for the transplant evaluation. He could be listed down here as soon as Dec. 22. They say it will happen quickly but we have heard that before. We have been very busy trying to get the apartment set up.
Thursday, December 1, 2016 11:29 AM EST John had a CT scan done at Georgetown on Tuesday which came back clear. His cultures from Monday are clear as well. So John is now active on Georgetown's transplant list for Intestine, liver, stomach, and pancreas transplants. Next we head down to Florida to get John listed at the Miami Transplant Institute and pray he gets called soon. This would make a great Christmas miracle for all of us. Please continue to pray for John and us. Thank you.
Saturday, November 12, 2016 7:19 AM EST We were at Lehigh Valley Hospital's ED Monday because our home health care nurse did not like how Johns Central Line site looked. She, and we, called Georgetown and they said we needed to go to the ED. Georgetown called ahead and told them they wanted the site looked at and an ultrasound performed along with labs and cultures taken. So all this was done and they sent us back home that night. They got an IR doctor to look at it and he said it looked normal for what was done there. The labs were ok and the cultures still haven't grown anything. This is good. It's better to have it checked out than to ignore it.
Monday, November 7, 2016 9:58 PM EST Don't ask.
Monday, October 31, 2016 1:37 PM EDT The Caringbridge server has been down for the past 4 days so I haven't been able to update the page.
Thursday, October 27, 2016 3:05 AM EDT John missed being down here so much he wanted a return trip spiked a fever..most likely the port will be coming out.
Sunday, October 23, 2016 9:39 PM EDT Sandy wrote: "we are heading back to Birdsboro. John will be in another day or two. This week has been an emotional roller coaster. Both hospitals have drawn multiple blood cultures through the port and arm and only one grew for yeast. Because of that one culture he has been on an anti fungal medication. Which he may have to be on for a few weeks. This will affect transplant. We will find out tomorrow if we are clear to move this weekend or if we will need to wait till December. John is very very depressed. He sure could use some cheer. I feel like I am always asking for prayers but we could use some.
Friday, October 21, 2016 6:46 AM EDT Sandy wrote: "Sorry it has been a few days since we last updated about John Maicher. John remains in Lehigh Valley Hospital. He has aspiration pneumonia and the new port that was just put in grew yeast in the blood cultures. So he has been on antibiotics. The fever finally broke. However, since John is waiting to be transplanted, the doctors have to be very careful on how to proceed. Lehigh Valley has contacted both Miami and Georgetown. So as I write this John is waiting to be transferred to Georgetown where he can be treated by the transplant team, infectious disease doctors and others who know him well and know what is required to get him back on his feet and ready for transplant...and yes we are still supposed to move next weekend...this family is on high stress alert!!"
Tuesday, October 18, 2016 12:57 AM EDT ***UPDATE***
Sunday, October 16, 2016 1:27 AM EDT Sandy wrote: "We received word on Thursday that John has been medically accepted at the Miami Transplant Center. This is great news, but comes with a price to pay. John Maicher and I will be moving to Florida. We leave in two weeks. I will be leaving my job and the two of us will become Florida residents for up to or longer than a year. Albert Maicher will be staying here in Birdsboro Pa coming down when his work schedule allows. This is going to be so hard on all of us. We are going from 2 incomes to 1 which is scary. We are a close family having been together though all of this as a team and now the team will be separated. We love John so much and will do what ever it takes to give him a chance for a better life. Please pray for a good outcome."
Tuesday, October 4, 2016 7:13 AM EDT We arrived home to Birdsboro safely, but not with the answers we wanted. Anesthesia was very concerned about access points that John will need for transplant since he has had so many ports, cut downs, and central lines. We were told it looks good but John will be presented to the "team" on Thursday and we will get our answer by Friday. In the mean time, John had another bleed while we were in Florida and we received a call from Miami's lab saying John's hemoglobin was 6.7 and wanted to know where was he and they wanted him to come back for a transfusion. John said we were at the airport and that he would take care of the transfusion at home. Then there is the huge hematoma John has that formed from the old port. That hematoma has now traveled down John's side and he is black and blue down his left side....and lastly since the new port was put in his left arm, it keeps swelling up. An ultrasound was done down in Miami that did not show any clots..so we are all wondering why the swelling. Anesthesia said they want a MRV done to check his veins. A long road ahead of us.
Friday, September 30, 2016 12:32 AM EDT We met with both the Nutritionist and the Hepatologist on Tuesday and they saw no reason not to accept John. The Hepatologist said they have a good donor pool in the area with an O blood type so most of the organs that become available will match Johns A blood type. Wednesday was Infectious Disease which put us through the ringer. John has been having issues with his left arm swelling up since the new port was put in. The Inf Dis doctor ordered a STAT ultrasound to check it out. It didn't show any blood clots so it could be the way the new port is positioned, or coming from the hematoma he has, which has been shrinking and is looking much better. Cardiologist today checked him out throughly and gave John the OK. He even checked out the ultrasounds too and didn't see anything. So far it appears John has passed all his testing. Please pray the Head doctor on Monday will accept John into their program. Thank you.
Tuesday, September 20, 2016 5:30 PM EDT On Sunday I needed to take John to the Emergency Room at the hospital where he had his old/new Port work done. John told us his Port dressing was bloody. When we pealed it back to look and to change it, we saw a large amount of "something" under the Tegaderm patch over the old site. Because we didn't know if blood or muscle was showing, we went to the ER. After having 4 doctors come take a look at it, plus they sent the original doctor a picture, they told us it was blood and fluid and just needed cleaning and that skin needed to grow over the site. So they dressed it, gave his a script for an antibiotic and another script to go to Wound Care this week. Well today, John said his dressing was bloody and his Port sites were hurting. So Sandy called Wound Care and they brought him in a day early. They said John has a significant Hematoma under the old Port site and they were very concerned about it. They said we need to change the dressing every day and put Neosporin on it. They said the Hematoma will drain on its own and they hope it drains out and not into him as it could infect his new Port. Please pray for John that this does not happen as it could be fatal. Thank you.
Saturday, September 17, 2016 3:48 PM EDT John now has a new port. The doctor said this was the hardest port he had ever done. Johns old port after 5 years had grown into him and it took a lot of work to free it up from the granulation tissue and remove it. The doctor said the connector inside from the port to the tubing, had disintegrated. And the spot where the nurses constantly accessed him had caused a tunnel where once they removed the port, they then needed to try and close up the hole. They couldn't reuse the same site because of the extensive work they needed to do so the new port had to be moved over closer to his armpit. The doc said John was weeks away from an infection and put him on an antibiotic for a week. John had all this done under a local anesthetic and was not sedated. Because of this we were able to Visit Sandy Maicher afterwards.
Friday September 02, 2016 8:15 AM EDT ::UPDATE TO THE UPDATE::
Sunday, July 10, 2016 8:08 PM EDT Sandy wrote: "Today I called Miami again to see what the status was on getting authorization for John to come to Miami only to be told they are still waiting for financial clearance. I politely asked to speak to someone in the financial dept. I was transferred but had to leave a message. I decided this is ridiculous to be taking so long as John continues to fail so I called our insurance company and spoke with John Maicher's caseworker. She informed me that they have received nothing from Miami requesting authorization..I was shocked. So we basically were being lied to and drug along at Miami. John's caseworker was extremely upset and told me she was going to make this a priority and try to find out what is going on and said we would be in touch on Friday. She also recommending for us to try two other facilities about taking John as a patient, so I will be contacting the two places to see if they do multi visceral transplants. Sorry for the long post, but, this was very upsetting news we received today"
Monday July 4, 2016 5:35 pm "I have a bit of good news. I called Miami Transplant Institute today. I found out that John's records and intake letter have been received. He is in their system, medically approved and now waiting for authorization fro our insurance company. Praying insurance will authorize transplant in Miami."
Monday, June 27, 2016 6:24 PM EDT So John and I met with our transplant coordinator and one of the doctors last week. Our coordinator said she was getting ready to mail out Miami’s referral packet for John and the team was going to discuss what MELD score to request when his current one expires this month.
Monday, June 20, 2016 5:45 PM EDT It has been a month since Georgetown told us we needed to get John multi-listed with another transplant institute and suggested the Miami Transplant Institute. I contacted our coordinator 2 weeks ago to find out what was happening with this and we were told that our doctor had called Miami and left a message, but, he has not received a return call from them yet. They said our doctor was planning to meet with the Miami director in Boston during a transplant conference and would discuss John with him. This conference was held last week.
Monday, June 20, 2016 4:29 PM CDT It has been a month since Georgetown told us we needed to get John multi-listed with another transplant institute and suggested the Miami Transplant Institute. I contacted our coordinator 2 weeks ago to find out what was happening with this and we were told that our doctor had called Miami and left a message, but, he has not received a return call from them yet. They said our doctor was planning to meet with the Miami director in Boston during a transplant conference and would discuss John with him. This conference was held last week. Monday, May 23, 2016 John’s lab work results last week were bad enough that the transplant team at Georgetown called us and wanted to see John on Thursday May 19th. The doctors said they are worried that John may not survive long enough before the right organs become available. They had hoped that the organ allocation changes made a few years ago by UNOS, and John’s current relatively high MELD score, would have gotten him the organs he needed by now. They said they are finding out that the local transplant clinics still have first choice of picking organs that become available in their area, before they offer out the rest nationally. Specifically, they have found that the pancreas is being kept by these centers to go along with a kidney transplant. John has a high enough MELD to get the liver when it is offered, but, he also needs the pancreas that is attached to it. The doctors also told us that even though the population level is very high in the Washington, DC area where they are located, the organ donation level to population Ratio is not. It has remained low and stagnant for the past 20 years. So, the transplant center where we are listed has one of the lowest organ donation levels in the country. They have recommended we get John multi-listed at another center. They have recommended the Miami Transplant Institute. There is a much higher organ donation level down there and Miami performs approximately 10-20 multi-visceral transplants a year. Georgetown is going to reach out to Miami and see if they will accept John as a candidate into their transplant program.
Saturday, May 14, 2016 5:40 PM EDT Things have been busy here. No more calls from Georgetown though. John has lost some weight and is now down to 101 lbs. His bilirubin has climbed and he is looking very jaundiced. He no longer has to check his glucose or give himself insulin. He's been feeling fatigued and just off.
Wednesday, April 13, 2016 So last night at 10:03pm we received a phone call from Georgetown saying we needed to get down there because they had an organ offer for John. We ran around the house getting dressed and gathering our things when 15 minutes later they called back and said "Never mind. The donor is not stable." This was our first "false alarm" with Georgetown and was quite an eye-opener as we have been waiting four years for this. It appears we are getting closer to transplant.
Thursday, April 7, 2016 Georgetown's MELD point exception they filed for John was granted. His MELD is now at 30, and it may, or may not, be good until June, LOL.
Wednesday, March 30, 2016 Update on what’s happening with John since discharge from Georgetown University Hospital.
Tuesday, March 15, 2016 8:11 PM EDT facebook
Friday, March 11, 2016 10:43 AM CST John was discharged from Georgetown Univ Hosp yesterday. He now has to check his glucose level twice daily and give himself insulin if needed. We are very happy he is now home. Thanks for all the prayers and support.
Wednesday, March 9, 2016 9:50 AM CST 03/09/2016
Sunday, March 6, 2016 11:59 AM EST 03/06/2016
Thursday, March 3, 2016 9:38 PM EST After a long stressful and emotional day John's bleeding has stopped and around 9 pm Wednesday he was picked up and transported to Georgetown. I want to thank everyone for their prayers and support, this would be so much harder without all of you.
Wednesday, March 2, 2016 6:51 AM EST More signs of John's failing liver. John had a bleed over the weekend. His lab results from Monday showed his hemoglobin was down to 5.9. Georgetown called us as soon as they also got the results and told us we needed to immediately take John to the emergency room. We went to St. Joseph's ER and they started the first of two units of blood. He is still actively bleeding though. Conversations between St. Joe's & Georgetown has GUH wanting John down there, however they currently do not have any beds avail.
Wednesday, February 3, 2016 6:00 AM EST Albert Maicher took John Maicher to Georgetown today for his monthly checkup. Dr. told John that he now holds the record for the longest waiting patient at Georgetown ...4 years! Funny when this all started we were told "it will be soon" what a joke. John's bilirubin went up again this week and he is now becoming more tired...and sleeps a lot. How many times do we need to hear..."he could die on the table" he could die from infection...HELLO.. We live here with him everyday...we see how jaundice he is...we see the labs every week..we know what can happen..give it a break..don't need to hear it every visit. Sometimes wonder if they really want to do this. So sorry to vent but I am so angry and frustrated with the whole situation. It's not their child's life that is in their hands. Prayers please!
Sunday, January 10, 2016 9:12 AM Johns appointment at Georgetown this past week went ok. Nothing new to report. His bilirubin is at 14 (normal 0.0 to 2.0) and keeps climbing. He is starting to feel more tired but in true fashion tries to continue to do the things he enjoys.
Friday, December 11, 2015 5:58 PM EST Johns liver numbers keep going up. He is still jaundice and has been getting tired. Georgetown ran his lab results from this past Monday and it moved him up another point on the transplant list. His MELD score is now 25. This is the same MELD score John had when he received his liver transplant back in March 2006. The doctors told us they have been getting organ offers for him but for various reasons could not accept them. We realize that we could get “the call” at any time now. His fistula is still large and drains profusely. We have been doing almost daily dressing changes. It has been very hard on Sandy and I watching John slowly getting worse. We pray that small bowel and multi-organ transplants have improved enough in the past 10 years so Johns chances for survival will be much better.
Monday, November 23, 2015 4:47 PM CST Happy Thanksgiving everyone. We have started a Go Fund Me page for Johns transplant medical expenses. After receiving his life saving transplant, John will need to live near the hospital in Washington, DC, for three months until they discharge him. Anything you could contribute would be appreciated. Thank you.
Saturday, November 14, 2015 7:10 PM CST John Maicher posts says it all...
Wednesday, October 21, 2015 6:43 AM CDT My John…no matter what he is dealing with he always has a smile. Love him so much. Nothing new to report..bilirubin still elevated..I have decided to take a numbers break because sometimes looking at the numbers (labs) just makes you more upset than you already are. I see John every day. I know he's jaundice and having liver troubles. Thank you everyone for your prayers, they are greatly appreciated. Thanks Kari for the picture..I cropped it lol..thanks for always including John.
Thursday, October 8, 2015 John was admitted to Georgetown Univ Hosp last Wednesday because his liver numbers have been escalating and he has been looking jaundice. The hospital ran several tests and a biopsy showed chronic rejection. John is having a loss of bile ducts in the liver and his anti-rejection medicine level has been too low. We think this is all a result of the last three endoscopy’s performed at John Hopkins in the past two months where they worked on opening up the clogged stent, and then tried to remove it because it has been in there for 5 years and was not designed to stay in there that long. This activity caused the small fistula John had had to open up into a larger hole. John has been seeing some of his medicines coming out of the fistula and falling down into the pouch and ostomy bag. So he is probably not absorbing the proper dose of medicine as it is not staying in him long enough to fully dissolve. So the doctors have increased his Prograf dose higher in the hopes that we can save this liver. They have to watch out though because high doses of Prograf can cause kidney damage. Also Johns potassium level was too high so they told John to skip his TPN bag this past Tuesday night and instead run three 1L bolus bags overnight around the clock. We are struggling to remain calm and focused during this trying period. Please continue to keep John in your prayers. Thank you.
I am really struggling with this and I really don’t know what to say. I am in shock and miss my buddy. I feel so empty. I had so much faith that John would survive this transplant. I dismissed thoughts of him not making it. I just KNEW, and believed, he would make it. He’s always pulled through before. The 3 of us have been a team for over 30 years. We were always thinking of what the next thing was that John needed to have done, and how we could improve his situation. Sandy and I were always encouraging John, and him us. We faced every new obstacle that came our way together. Now, we don’t have to make that next appointment; change the ostomy dressing for the umpteenth time that day; nor worrying about how long we would let the bleed go before convincing him we needed to go to the local infusion center for a blood transfusion. I really don’t know how we’ll be able to move forward without John in our lives anymore. I prayed hard every day for John to be able to have a near normal life after Transplant and enjoy all of the things we take for granted. Especially being freely able to move about, eat, and do whatever he wanted to without being hooked up to something. This will now never be.
I want to thank everyone for your kind words and sharing your stories and memories of John with us. Thank you also for your financial and spiritual support and encouragement over the years.
Tomorrow, August 8th, is John’s Birthday. He would have turned 34. Happy Birthday Johnnu.
Thank you for all the kind words and stories about John. Even though they made me cry they made realize how much he was loved.
You are at peace now my precious baby boy. We love you!
John is having a really bad day (Friday). Blood pressure crashed this morning. He has an infection in his gut. They just took him for a stat CT scan.
UPDATE:
CT showed an abscess near the connection of the stomach and esophagus. John will be going to IR today to have a drain put in.
Lots of fluid drained out from Johns abscess. It is being cultured. He is on many antibiotics to combat this infection. Please pray they can resolve these issues.
Albert will be leaving soon to go back to PA. He has to go back to work. I am scared because I will now be on my own down here and not get those hugs and support.
John is able to receive get well cards and we have already taped some up onto the glass walls in his room. We read them to him and he enjoys listening to them. If you wish to send him one the address is below.
Jackson Memorial Hospital
1611 NW 12th Avenue
Miami, FL 33136
Attn: John Maicher, SICUB Bed 12
Sandy is doing much better.
Thank you for your prayers and support.
John
Mon 7/09/18
Morning. John was moved to Bed 12 into an adjacent “pod”. They said they needed his rooms setup for another patient. He’s in a chair. He’s doing good. The dr’s are pleased.
Afternoon. They had to take him out of the chair and put him back in the bed because his heart rate went into arrhythmia and he was having trouble breathing. He’s running a temperature too now of 37.6. They also had to put him back on the ventilator. We found out he was left in the chair for 5 hours! That is why he was exhausted and having trouble. Did they forget about him? Or are they pushing him too much? Why weren’t they watching for signs of distress? His temperature now is normal. Still on ventilator. This was a setback.
Tue 7/10/18
Uneventful night. No temp. Transplant was in and looked at the incision. No changes being made. Dialysis today. Will ck to see why PT hasn’t been in. Sandy noticed drain #2 had light green fluid (bile)? Dr’s from Transplant came in and they don’t think it’s bile. They’re going to keep an eye on it. Hopefully there was no damage from the chair incident yesterday. NG tube doesn’t seem to be sucking so we told the nurse. We’re not happy with John’s care since he was moved to this other “pod” of beds. He was supposed to be in the other room until he went up to the floor. Vent pressure slowly being lowered.
Wed 7/11/18
Temp 37.1. Drs said not to worry about the small amount of drainage. Different nurse today replaced the NG canister and now it’s working. I told her that I had told the other nurse yesterday that it wasn’t working. Put into chair for 2 hours today. We worked his arms and legs. Transplant Dr said John’s kidneys are getting better but still need some support. Skin care was in and he has an open ulcer near his tail bone. She treated it and will continue to monitor.
Thur 7/12
Temp normal, dialysis today, maybe get a unit of blood. Hemoglobin at 6.9. His heart rate went up with the dialysis, 130s to 150s. John agitated. Mouthed that his legs hurt. We rubbed them. Told his nurse and she said to “stop touching him, leave him alone, and let him calm down”. Hmmm...
Transplant Dr came in to ck on him and said John’s doing well. Said this is not a step-down pod and the nurses are good here. John’s their #1 patient.
Fri 7/13
Did well overnight. Switching him over to TP where HE does the breathing instead of the ventilator and is supported just with oxygen. Putting his sneakers on so they can put him in the chair later today. Hemoglobin now 9.1.
2pm - John has a temperature of 101.
Sandy
Saw Dr on Wednesday and was told she’s doing good. Needs to rest. Stitches will dissolve on their own. Headaches getting less frequent and not as severe as before. Can drive and fly but no swimming for another 4 weeks. Needs to come back in one year for checkup and have an MRI done at that time too.
We can’t be here 24/7 to watch what everyone is doing, or not doing.
If moving him means John gets less care and proper attention, then we are having no parts of it. We’ve waited 7 years for this and aren’t about to let anyone screw it up.
John
Wed 7/04
Ventilator was off today for 4 hours and John was breathing on his own. His temperature today was normal. Not shaking as much. We watched baseball on the tv.
Thur 7/05
No temp. Working his arms and legs. Transplant Dr happy. He wants to get John moving. No dialysis and John is peeing on his own. Incision looks good. Not much drainage. Was breathing on his own for 6hrs. I held up a newspaper for him to read to help stimulate his brain.
Fri 7/06/18
Found out John was off the ventilator and breathing on his own for 14hrs yesterday! Dr B happy with the progress. John will get dialysis today. It will be every other day. We worked John’s arms and legs. John asked me to help to keep him moving. He was more tired today from having a busy week and from breathing on his own. I asked about checking his thyroid level because it was being checked before transplant. The nurse said she would check.
Sat 7/07/18
Temp normal. Got dialysis last night. Nurse will check on Phy Therapy frequency and if thyroid labs were drawn. Was off the ventilator again. John was put in a chair for 1 1/2 hours. He was sore by night and needed pain medication. This was his first movement in weeks. Received his first medication for his thyroid level today (I’m glad I said something).
Sun 7/08/18
Temp normal. Nurse said he had a good night. Woke up overnight because he was sore. Will be put in the chair again today and gave the nurse a sad face when she told him that.
__________________________
Sandy
Thur 7/05
Has good and bad days.
Fri and Sat 7/06, 7/07
Feeling better with fewer headaches. Tried driving a short distance and did okay.
Sat 6/30
Sedation turned off to get some out of his system. Had his first bowel movement last night and another one today! More awake and understanding commands. Moving around more.
Sun 7/01
John had a good night. Heart rate and BP elevated. Ventilator turned down and he is doing some breathing on his own. Temp is going up.
Mon 7/02
John has a fever. They added another antibiotic. Bomb scare at Hospital. Couldn’t get in. Police, Security, helicopters, and SWAT teams setting up. Drove over, waited outside in the heat, went for lunch, came back, still on lockdown, drove back to the apartment. Sandy exhausted.
Tues 7/03
On a minimal amt of fentanol. Shaking quite a bit. Got a unit of blood overnight. Transplant dr said John is doing ok and showing improvement every day. His bowel is working and they are weaning him off the ventilator. In a holding pattern waiting for the connections to heal. John’s producing more urine now. Hopeful his kidneys are waking up.
Infectious Disease came in. The bugs that are growing are GI bugs. Blood cultures for the yeast have been coming back negative! Physical Therapy started today. They showed us how to gently stretch his arms and legs. Ventilator turned off for 1 hour and John was breathing on his own!
Sandy
Sat 6/30
First day trying to walk without the walker. Head hurts this morning.
Getting headaches and still feeling off.
Mon 7/02/18
Walking without the walker. Anxious, frustrated. Wants to feel better now.
(Sandy’s Post)
People have been asking how I am doing. I am taking it one day at a time. This surgery was tougher than they made it seem. Tomorrow will be 2 weeks from my surgery and I was expecting to be feeling great. I still have a week to go before I see the doctor and have my stitches removed. I am hoping that another week will make a difference. Thank for all your prayers and support.
John spiked 101.8 fever. Running cultures. Prayers definitely needed.
John
Thurs 6/28
Fascia was closed. The dressing got wet and was changed overnight. BP okay. Temp low in the mid 36’s so they put him back on the warming blanket. Trach working okay and not leaning as much as he was towards the ventilator machine.
Temp now 37.4, taken off the warming blanket. Now has 9 drains in him. Esophageal stenosis was leaking and they had to repair it. Stitched the NG tube into his nose so it won’t move and will pull fluid away from the repair site. Stopped the propofol last night. Weaning him off the fentanyl so he can become more awake and responsive.
Fri 6/29
Doing okay. Slowly getting weaned from the sedation. Got a smile from him this morning.
ICU team came around. Plan is to slowly wean John off the sedation. ID took him off of vancomycin and put him on Zyvox. He is still on the anti fungal. Nurse Simone shaved his face and he’s looking good. ID came in and they’re keeping him on current regimen because it’s working and no temperature.
Sandy
Fri 6/29
Still using the walker to get around. Still getting anxious. Head still hurts. Tires easily. Ear is better, eye no longer swollen.
Tracheotomy Doctor called and woke us up at 1am for permission to put in the trach. Transplant busy with transplants today so don’t know if they’ll be able to squeeze John in. IR called and asked for permission to take John to IR and replace his left clavicle central line because it is curling up and trying to poke out of the artery.
John had 3 procedures scheduled for today and they did one of them. Took him to IR at 12pm and was back at 3. Nurse Sue is washing and straightening him up. Procedure went well.
Transplant was too busy so couldn’t do the fascia closure and they also couldn’t get a team together to put in the trach. They are both now scheduled for tomorrow.
Sandy was feeling better today until she clunked her head on a kitchen cabinet door. OUCH! But that was not what she said, ha-ha.
Weds 6/27
Plan for today is to take John for fascia closure and put the trach in.
JOHN
Fri 6/22
When John spiked a temp on Thursday night it went up to 103.8. They started him on Vancomycin and Meropenem for the infection. By Friday morning it had come back down to 98.4.
The doctor said this happens to transplant patients especially when they are open such as he is. John will receive a tracheostomy next week because he’s been on the ventilator long enough.
They plan on taking him to the OR Tuesday to close up the fascia under the skin and to possibly perform the tracheostomy at that time.
Sat 6/23
John spiked a temp in the afternoon and then it came back down again. The nurse cleaned him up overnight and said John had a nice quiet night and slept well.
Sun 6/24
John had a good day. Nothing was done or changed.
Mon 6/25
John once again spiked a temperature at 100.6. They drew cultures and sent them off for testing. His heart rate is elevated again probably as a result of trying to fight off the infection. Tomorrow they plan on taking him to surgery to close up the fascia under the skin and perform the tracheostomy. Please continue to pray for him.
___________________________________
SANDY
Fri 6/22
Sandy is having a rough time. She is still a bit unstable (no jokes please) and is using a walker. She feels agitated, and from Friday to Saturday her left eye had swollen shut.
Sat 6/23
Sandy’s eye has gotten better and most of the swelling has gone done. Her head hurts and she still feels agitated. Her left ear is itching and she says it feels full.
Sun 6/24
She is resting today and trying not to do too much to see if the headache will go away.
Mon 6/25
Sandy still has the same symptoms of headache, ear, and agitation. It has almost been a week since her surgery so we decided to contact the doctor. The doctor got back to us and said all of this is normal. He said it is still early and to keep him posted. He said this is normal for someone whom had front craniotomy surgery performed. Please pray Sandy recovers soon.
John spiked a very high fever last night and is on antibiotics. His temp has since come back down. They sent cultures off for identification. He was taken to the OR this afternoon for more wash out, organs checked, and closed up some more.
Sandy had a rough time with her surgery. It was more invasive and traumatic than we were led to believe. I won’t go into details but I’m watching and taking care of her.
Thank you very much for your prayers and fundraising support. I especially want to give a huge “THANK YOU” to my brother Stevens’s family; Gina, Steven, Becky, and Steve. They have been a Godsend and instrumental in allowing me to be able to be there for John and Sandy. I don’t know what I would do without their support and can never thank them enough. May God bless them!
Sandy
Sandy will be staying in the hospital for another night. She is shaky and a bit unstable on her feet. Her head hurts and she’s very uncomfortable. The dr said she may need to use a walker until she regains her balance. They said she had a bad reaction to the anesthesia and it will take 24-48 hrs to get over the effects of it. I have been trying to get a hold of Anesthesia to find out what meds they used on her without success. The next time we are asked if she gets a reaction to anesthesia we’ll have to say YES!
John
John is having a better day today. An X-ray done this morning showed nothing significant and there are no changes. He is still on the ventilator. John was lifting up and moving his arms more. They plan to take him to the OR on Friday for another wash out and more closure.
I turned his I-Pod back on and he was happy about that. After awhile he was mouthing the words to the songs. When I told him I loved him he mouthed that he loves me too.
Sat 6/16
The doctors removed the arterial line in the femoral artery because John’s BP has been pretty good and they haven’t needed to give him any BP medicine. This also eliminates another source of infection. They will culture the line. John’s stable. They will also draw blood cultures again just to keep a check on the infection.
Sun 6/17
Stable. Still on Fentanol and Propolfol. John’s right eye lid is swollen. They’re not sure yet what is causing it. They may call in an ophthalmologist to check. Eye swelling came down. Doctor believes it was positional and they are trying to keep his head and neck straight.
Mon 6/18
Took John to OR for wash out and clean off dead skin. 3 hours. Dr says it is normal to do this every 4 days until he’s closed up. No abdominal wall transplant today. Dr B said John needs a thin abdominal wall. The offers so far have been too thick and fatty. Dr said he is moving forward as if he won’t get an abdominal wall. Said they might need to put in a trach. Changed out the NG tube to the other side and are going to introduce some sugar water feeding this week. He looks good and is less swollen today. Chaplain Kristen came up and prayed with us today and we asked for a minister to provide the Anointing of the Sick sacrament and to get him on their prayer rounds. Candida/yeast is not susceptible to the micafungin so ID is putting him on a different medication. First dose administered today.
Tuesday 6/19
John had a good night. He has been opening and closing his eyes. Dr McIntyre (ICU) said no changes and John is doing well. He got a unit of blood today.
Sandy’s brain surgery was today. Dr Angela Richardson said went well and all of the tumor has been removed.
Dr Komotar said the cyst came out fine. No trouble. CAT scan after surgery showed cyst completely removed. Dr said she should be totally cured. Will get an MRI tonight after midnight to check and compare to yesterday’s MRI. Should be discharged tomorrow Wednesday June 20th.
The doctors told us from the beginning to expect ups and downs, good days and bad days. Friday was a down day. Johns blood cultures grew positive for yeast. They started him immediately on medication to treat it. They took him to IR Fri evening to replace the PICC lines in case they are the source of the infection. His kidneys still haven’t kicked in enough and he remains on dialysis. Right now the Transplant doctors want John to rest and heal. He is still on the ventilator which John hates and because of that they keep him sedated. They are going to do an abdominal wall transplant as soon as one is avail that Dr Beduschi likes. On a more positive note, we are two weeks out from Transplant. Thank you for your prayers and support.
John is doing okay. Had a non-eventful night. Body temp is low so they put a warming blanket on him. Drew blood cultures to check for infection. John got a unit of blood. Swollen from yesterday’s surgery. Trying to give him meds that use the least amount of fluids. We went to UM for Sandy’s Neurosurgeon appt. with Dr. Ricardo Komotar. Sandy gets brain surgery on Tuesday.
Thank you to everyone whom came out to the Bake Sale yesterday whether you baked, bought, or donated. We greatly appreciate it.
This is a post that we have all been waiting for. Tonight at 6pm John received the “call” that organs had become available for him. We called around and there were no flights available to Miami tonight. We are waiting to hear from Miami if it’s a go for tomorrow. Angel Med is ready and waiting also for the final answer. They will be flying us from Reading, Pa directly to Miami. We are excited yet very scared the outcome is so unsure. I am asking for prayers upon prayers that this all turns out successfully. Love to all of you.
Well.., we’ve been waiting many years for this and finally got the call this evening that there are organs for John that are a good match. Please say as many prayers as you can and then some more that John has a successful transplant surgery. Thank you.
Here’s the scoop. We are here and in a hospital room in Miami. The donor is not in this state. The Transplant team will go and check the organs out after an operating room is scheduled. If everything works out they plan to start this evening. Nothing is assured at this point. We could still be sent back home.
UPDATE from Sandy:..Here is whats going on.
So they don’t work with the sense of urgency one might expect. Evidently there are other teams involved who are procuring other organs. They all meet at the donors hospital at the same time to operate. This will happen at midnight. That will take 3-4 hours to operate and then bring the organs to Miami. We’re looking at 4-5 am Thursday for surgery. That is provided that the dr approves of the condition and compatibility of the organs. It has been a long emotional and tiring day. Thank you to everyone we can feel your love and prayers.
We received some bad news about Sandy. She has been having dizzy spells for the past 2 years and recently has been getting severe headaches. She went to the ER last Thursday also and the doctor had a CT scan performed. They found she has a cyst in her brain. Sandy will require brain surgery. She has an appointment with a neurologist in Florida in early June. We are all shocked about this. Please pray for all of us and now especially for Sandy so she can receive the best treatment and care.
Thank you.
To everyone who has been following us, personally know us, I apologize for the negative posts, the go fund me page, and the fundraisers we have. We honestly would not have them if we didn’t need the help. It has been a long and expensive journey especially since our move to Florida which we we were told would be 6 months to a year.. well folks it over a year and we are still in Florida struggling to survive financially and emotionally.
On a happy note John looks great does not need oxygen as much and has lost most of the fluid. We love you!
Our address down here is 9430 Marino Circle Apt 207 Naples, Fl 34114.
Worried about everything.
Wondering what is Gods message and why He picked us to deliver it.
(On Tuesday)
Johnny is back home to the apartment. They did not transfuse him because they did not think his hemoglobin was low enough. They monitored him for a few hours then sent him home. If he gets worse we’re to bring him back. This is the first time this has ever happened. Thank you for your prayers and support.
Because John’s wait for organs is taking longer than we were led to believe, we are republishing John’s Go Fund Me Page Link.
We would appreciate any help you could provide us. Thank you very much.
Nothing goes as expected. Every day brings another challenge to us. Especially to my wife. Thank you Sandy for your strength, and always being there for John. You are an amazing woman and I love you very much.
Thank you for your prayers and concern. It’s nice to report some good news for a change.
John is still in the ICU but may be moved up to the floor as soon as today. He started bleeding again and passing clots. They had to give him a unit of blood yesterday. He is on heparin to prevent clotting but has begun to pass them again anyway. Because of this the Transplant team decided they want to go back in and check his vascular system for more/same obstructions. They are planning this for next week. The swelling in his arms has not come down as hoped and just may take more time.
We are glad they are finally doing some intervention / preparation for Transplant because if they are not able to keep his bloodstream open they may not be able to Transplant him.
Thankfully John has gained 1 more point on his MELD score towards being transplanted.
John’s procedure was done today after it was postponed again yesterday. It was successful. They were able to remove some clots and John tolerated the procedure well. He did not need any blood or fluids during the 3 hours. Although they weren’t able to get a stent in the blocked vena cava, they were able to balloon it open. So now there’s some flow through it. Thank you for the prayers and support.
There was hope John would be sent home today. But he had an MRA done yesterday to look for other foreign objects inside of him. When John needed help to get off the table the doctor pulled him forcefully and John felt a sharp pain. He has been bleeding since. Maybe they can scope him today and clip the source of the bleeding. I’ll be heading over there to be with him.
Please keep John and all of us in your prayers.
John is still in Jackson Memorial Hospital and will have a scope procedure done tomorrow to determine what can be done for the bleeding. They did find an obstruction in his arm that could be the cause for the swelling there. They haven’t said yet what they would do for it.
I want to give a shout out to my Sister-In-Law Gina for taking care of Jackson and Kit-Kat and everything else while I’m away. I couldn’t be with my family at this time without her help. Thank you Gina!
Please pray for my family. Thank you everyone.
Sorry it’s been so long between updates. John is starting to bounce back. We are starting to see signs of the smiling crazy young man we know. He is getting physical therapy to help him regain his strength. He has not bled for almost 72 hours so fingers crossed it does not start up again. He has been getting iron infusions as well as the blood transfusions. He has now received 12 units of blood. They also spotted a blockage in the lymphatic system in his left arm which could be why his arm swells up so bad. They finally listened to us. Tomorrow a special CT/PET Scan is getting done to get better images in his arm.
I am ok..when I am overly stressed my back spasms so bad it cripples me. After all the driving back and forth to Miami and sleeping in the chair my back just locked up. Thanking you all for thinking of me.
Sandy wrote: "I just spent the weekend with John Maicher over at Jackson Memorial Hospital in Miami. It has been a tough and emotional week. I wish I had better news to report but John is really fighting for his life. The doctors can not get the bleeding to stop and as I post he is receiving his 9th and 10th unit of blood in one week. Albert, John and I are not convinced that the liver transplant team is doing all they can to find out where or why he is bleeding. I can’t go into all the details but we as a family will not except there is nothing they can do without checking out all the options. John really needs a super prayer chain right now. Love to all of you and please say extra prayer tonight, if you can, for John and others who have been told there is nothing they can do."
The surgery to remove the swollen lymph node today was cancelled. The doctor said John’s arm is too swollen plus he is still bleeding. They said it was too risky. We’ll try to find out what happens next.
Please pray for a successful surgery today for John. They are going to remove the lymph node between 12-2pm. This is a step towards Transplant and they want this out first.
I wish I could be down there with them.
"Our first week back in Florida has been a whirl wind. John is feeling good and he's happy to be back in Florida in his favorite seat. I am not going to go into all the details, but right now John is on hold on the Transplant list. John has a swollen lymph node in his armpit that Dr. Beduschi is going to remove after Thanksgiving. It will be sent to pathology to check for a condition called PTLD which a patient who is immune suppressed and on anti-rejection meds can get. If he does have PTLD he will have to be treated before he can be actively listed again. Love to all and thanks for always praying for us."
Sandy wrote: "It's been another long day. I am staying at a hotel here in DC so I don't have to drive 4 hours each way. I will post with a better up date tomorrow but John is stable and is improving. I did not see any doctors today so I still don't have any answers. Goodnight and thank you for the prayers they are definitely working"
John is making steps to getting better. Yesterday was a good day today not so much. He has a staph infection in his lungs. To quote his transplant doctor.. his CT Scan when he came in was just horrible. He says he feels much better but knows he has far to go. He also has lymphedema in both arms pretty bad. But to all of you who know John he is still trying to smile and joke. Here is a picture I took yesterday when we got him in a chair. Again thanks for all your prayer, they are working.
"John had a little set back over night. They had to increase his oxygen and today he got a blood transfusion. Mom feeling burnt out emotionally and physically."
"Today was a fairly good day. The best news is John Maicher was moved from ICU to the floor. The next goal is to get him off the oxygen. Let's hope for many more good days"
Today John Maicher was rushed via ambulance to St. Joesph emergency room. His lymphedema is really bad he can not breathe plus he is bleeding. They are do some testing to check out different things. The doctor here has been in contact with Georgetown and most likely he will be transferred there. Prayers are really needed John is in pretty bad shape😢🙏
Update on John ... it has been a trying day so far. John is on oxygen x-rays showed his lungs and extremities are full of fluid. John is not stable enough to be transferred via ambulance and trying to fly him there is difficult because of the no fly zone around Georgetown/D.C. Area. They can not keep him here because he needs more care then can be given to him here. They actually had a hospital say no😡 we just want what is best for John
Another update on John. After many phone calls John will be medivac to Georgetown as soon as a bed becomes available. He will be in ICU as they try to get the fluid out of his lungs. John is very scared and anxious because this has never happened before. Thank you all for your love support and prayers. I will update tomorrow with hopefully better news.
Tuesday
John Maicher was flown to Georgetown last night. He is in ICU. His breathing is a little better but he has a long way to go. I spoke with the critical care doctor who is very concerned about how Johns lungs look. He does have an infection but they are not sure what kind. He is going to have a bronchial scope done this afternoon so pathology can look to see what he has brewing. Thank you all for your love prayers and concern
We survived hurricane Irma. Unfortunately we were not able to evacuate because we were waiting for Johns medical supplies. We are back in PA now because conditions after Irma were unsafe for John. Ever since John had his port dug out last year his arm swells really bad and is very painful. He now has lymphedema from the trauma of having that port dug out. John just never ever seems to catch a break. We had to extend our lease because John is still not transplanted. This is very hard on us financially but your kindness and support has been amazing. Please consider donating to John's Go Fund Me Link below or contact us privately to make a personal donation.
Thank you.
We were in the direct path of Hurricane Irma. In fact, the eye came right over us and lasted for about 20 minutes in which people brought their dogs out and I removed the palm branches from around the storm sewer out front to prevent blockage. I then asked a few guys to help me pull away the tree that fell in front of our car and was blocking it. Fortunately the predicted 10-15 foot storm surge never occurred and neither the apartment nor the car got flooded. We had put all of our important documents up high just in case. The electric came back on Tuesday at 7:30pm. It has been flickering since but holding steady. We are all flying home this Friday including "Freddie" our cat. He was unexpectedly calm and well behaved during the hurricane.
It is sad to hear the squawking birds returning to their trees and nests that are no longer there. Thank you for all of your prayers and support during this (hopefully) once in a lifetime event. I will try and upload a few pictures.
My time down here in Florida has had its ups and downs. There are days I don't even want to get out of bed, but I do because I have a wonderful son who deserves this chance to lead a somewhat normal life. I have made some great friends down here. One of my friends sends me an inspirational quote everyday. Sometimes it's like she knows what is going through my head. Thank you Karrine. I came across a St. Jude message this weekend that I have decided I will say to myself every day.
When things go wrong as they sometimes will
When the road you're trudging seems all up hill
When the funds are low and the debts are high
And when you want to smile, but you have to sigh.
When care is pressing you down a bit. Rest if you must, but don't you quit. Life is strange with its twists and turns,as everyone of us sometimes learns. And many a failure turns about when he might have won and he worked it out. Don't give up though the pace seems slow. You may succeed with another try. Success is failure turned inside out, the silver tint of the clouds of doubt. And, you never can tell how close you are, it may be near when it seems so far. So stick to the fight when you're hardest hit. It's when things seem worse THAT YOU MUST NOT QUIT.
We have renewed our lease down here for another 15 months in hopes that John will be transplanted by then. On a positive note, John and I love Naples and have met some really super nice people that have truly been amazing and helpful in getting through our journey. The palm trees and how very clean it is down here just makes it so nice to be here. Thank you all for your prayers and support.
Please continue to pray for a quick resolution for all of this. Thank you.
The last three days have been busy down here in Florida. John was admitted to Physicians Regional for a bleed. This time the Drs ordered a chest x-ray, which showed pneumonia, aspiration pneumonia to be exact. They also did a CT of the chest that showed a very enlarged lymph node in his armpit. Today we saw transplant and again it is just a waiting game. The lymph node needs to be biopsy asap. It could be swollen from being on immunosuppressant medication for so long, or other factors, but can be treated. Albert came down for the week and got a chance to see the hospital where I have been taking John for his bleeds. He was very pleased with the staff and facility. Again thanks for all your support. John and I will continue our fun exploring in Florida while we wait for THE CALL.
Sandy writes:
It has been a long day. As John and I head into our 6 month down here. It hasn't been easy at times especially being separated from family and friends. I have made some new friends down here and John is starting to come out and mingle.
Today we had an appointment over Miami to have a 5 month follow-up.( he has not seen them since December). I wish I could say that it was a great visit, but I will go with an ok visit. There have been no organ offers for John since we came down. Dr.Beduschi is working on an appeal to try and get John moved up, with no guarantees he will win the appeal. If he has another bleed the GI doctor can scope him to see where the bleed is coming from. John is down to 97.7 lbs. so changes are being made to his TPN.
So once again we were given high hopes when we moved down here for only more of the same. So it looks like John and I will be here much longer than we thought.
Thank you for your continued thoughts and prayers.
John was granted an exception. He got 2 points.
So I wrote too soon. John is currently in the ER with another GI bleed. They are going to try and identify the cause again. Please continue to keep John in your prayers so he can find some relief. Thank you.
Wednesday, April 5, 2017
John and Sandy are doing well. No bleeds nor unfortunate situations occurred this past week so they were given a break for once (ha-ha). Because of the frequent bleeds and hospital admissions John has had recently, Miami requested additional tubes of blood taken and labs run this week to try and gain some additional points for him. John’s MELD is currently at 25. We should hear something back about that in a week or two. Thanks for the prayers and support.
Sandy has been feeling better. She caught a upper respiratory infection as a result of the smoke and ash from the brush fires two weeks ago. The doctor said he has been treating a lot of folks with this because of the fires.
Mom is doing better in rehab and I will be bringing her home tomorrow. We found out she not only had a fractured vertebrae, but, she also had a fracture in her pelvis. Both were non-operable. She is ready to come home.
Please continue to pray for the Maicher Network. Thank you.
Sandy’s mom fell last Saturday and was taken to the ER. She was then transported to Reading Hosp after they saw a fracture in her back on a CAT scan. She has a broken vertebrae, but the good news is, she will not require surgery. The doctor said it will need to heal on its own. They are now discussing where rehab will take place and when to discharge her.
Sandy and John survived the brush fire in Naples. It actually came to within one block of their development. They had smoke coming in the front door and had to stuff papers around it to stop it.
So never a dull moment. Please step up the prayers! Thanks!
We came home yesterday only to be put on voluntary evacuation from a forest fire that is going on down here in Naples. Highways are closed, my friend who lives a mile up the road has been evacuated. As of this post where John and I are is still voluntary but we are keeping close eye on the news.
So please keep John in your prayers and the fire fighters here in Naples.
Sandy Maicher was with Albert Maicher and John Maicher at Punta Gorda Airport on Friday, feeling heartbroken.
Sandy wrote: "Today I am feeling very sad and angry. We just dropped Albert Maicher off at the airport to fly home and will now be heading to the ER with John Maicher. John has bled off and on all week but refused to go to the hospital because his dad was here. I am not as strong as I once was".
John was admitted to the hospital yesterday and is currently still there. He has received 4 units of blood. The hospital performed an isotope test to try and determine where the bleed was coming from but it did not show them anything.
Sandy and John both met with a new primary physician they needed to get while living down in Florida. They both like the doctor and he has already written prescriptions for both of them to get filled down there. The doctor also listened to Johns lungs and said they sounded clear and with no rattles from the bout of pneumonia he had when back in PA.
Johns lab results have actually been slightly better. Unfortunately, this has cost him 1 point in the UNOS Transplant system. So he has moved down the list by 1 point. Maybe it has something to do with the way the labs are run down in FL vs. PA. Or... it could be the Florida sunshine.
Thank you for all your kind words and prayers. As Sandy and John continue to wait for "the call" they are enjoying Florida and searching for the best vanilla milkshake.
Thank you Jill and Shane for your words of encouragement and understanding what we face.
Thank you everybody for supporting us and giving us the strength to persevere with this long and stressful journey.
Please keep my family in your prayers and consider making a donation to John's Go Fund Me Page at the link below.
Also, the Angels for Ally organization will hold a Beef and Beer benefit for John. This is scheduled for Feb 4, 2017 from 6-11 pm at the Keystone Fire Co, 240 North Walnut St, Boyertown, PA, 19512. Tickets are $30 each and can be obtained from the EventBrite link below. Please consider coming out for a good time and a good cause. I have pasted Jill's notice below. Thank you.
Jill Heimbach Heintz
I know some of you may have already bought tickets but please continue to spread the word that tickets are available through eventbrite. I wanted to share since many of you have a group of people that you usually sell tickets to. You can share this link or people may visit http://l.facebook.com/l/ATN-3L0ktKVI_zNyK9T0CdgbZ8WCVXobcX3bUoGc1YqRkM5hRKKSsszaGiy1vVU2CIfiVHHNQfgd2dGmUCPuOz3k6_eN1HlMxwKca-jZGlvEDKPTnEkTzWMODtgT9aPKHmQ_cQNbSGMD80hTdq4xS-jIUbKn2cA/eventbrite.com and search for Ally's Beef and Beer. I am not printing paper tickets this year and I cannot guarantee that tickets will be available for purchase at the door. People do not need to print their tickets they can bring and show proof of ticket on their phone or mobile device. Plus I get emailed everytime tickets are purchased.
Thank you for all of your prayers & support they are really appreciated. Please keep the coming. Come on 2017!"
Please consider making a donation to Johns Go Fund Me Page at the link below. Thank you.
Please consider making a donation to John's Go Fund Me Page at the link below. Thank you.
Albert leaves to go back to PA today and then it will be John Maicher and I hanging out down here. Miss everyone back home but I know this is the right thing. On a lighter note Freddie is enjoying the beautiful day out on the balcony.
Please consider donating to Johns Go Fund Me Page to help us with the expenses down here. Thank you for all the prayers and support.
So John is still on the Micafungin and cultures are scheduled to be drawn again on the 28th. There is also a CT scan scheduled for the 29th. If they are both normal then John will be reactivated in Georgetown's transplant program. Then we can return to getting down to Florida and reactivated in Miami's transplant program.
John is getting discharged from Georgetown today. He has not had a fever for the past several days and the cultures have not grown anything. They pulled the port and John now has a new central line. He'll be on the anti fungal meds for a few weeks and then repeat cultures will need to be drawn.
Please continue to pray for John. Thanks.
John Maicher will be staying over another night at the hospital. His fever has come down and he is feeling better. They started him on IV antibiotics which he will come home on. They took ultrasounds, cultures, and x-rays, and they are pretty sure John has pneumonia. Infectious Disease is keeping him another night to make sure he is on the right antibiotic and are waiting for the results of the cultures. Thank you everybody for your thoughts and prayers.
Sandy writes... Why God can we never catch a break!!!!! John Maicher and Albert Maicher are on their way to Lehigh Valley Hospital.. John has a fever.. could be the port.
The MTI transplant coordinator said the doctor said for us to continue the transplant work up. They are allowing us to have some of the testing done in PA. The rest will need to be done in FL.
:UPDATE:
We contacted Miami last Thursday to see what the decision was about John. The Transplant coordinator said unfortunately, the doctor has been extremely busy with recent transplant surgeries and has not been able to review his records yet. As soon as he is able to review them they will let us know the next step. So that's the latest.
Last Saturday we flew down to Miami and on Monday, August 15th , we met the Transplant team at the Miami Transplant Institute. Besides vitals, they took 21 tubes! of blood from John. The doctor was very nice and took his time talking to us answering many of John’s and our questions. They wanted to hear Johns story of how we arrived at this point. Afterwards, the doctor said he didn’t see a reason why John wouldn’t be accepted into their transplant program, but that he needed to read John’s file in-depth in order to make sure. He said they will contact us in about a week to let us know. I don’t have to tell you how very difficult this will be for all of us, but we will make this work in order to try and give John the life he deserves.
On a positive note; we met some very nice people. We met Daren, who is currently a patient under the same doctor, and whom just celebrated his three year transplant anniversary. He had a multi visceral transplant done which is the same transplant that John needs. He looked great and was an inspiration for all of us. And the TSA agent at the Miami airport who did a pat down on John because John was hooked up to TPN while going through security…who was also a born again Christian. He kept telling John it will all work out for him and that he would pray for John. He told John that he needed to have the faith of a mustard seed because all things are possible by believing in God’s help. Then, the airline stewardess who John made friends with on the flight home. She came to us and gave us her card and phone number and said if we had any questions about areas to stay in, to feel free to call her. Three total strangers who impacted our life so much. God is truly amazing.
Please continue to pray for all of us. Thank you.
Sandy wrote: "I received a call today from Miami's financial department and from our insurance company.. John has been APPROVED for treatment at the Miami Transplant institute. Now we wait to receive the call to schedule an appointment for us to go to Miami for evaluation. Also, John' MELD score has increased from 30 to 33 which also indicates just how sick John is."
Please continue to pray for John. Thank you.
Also, they suggested that we should write some letters to advocate for organs for John. They said the struggle, and “heated discussions”, that occur between the local group of transplant centers for available organs gets pretty intense. If we could provide some letters explaining why John needs to get these organs, it could possibly convince some of the them to offer them to John instead of keeping themselves. The doctor said it is sad to have to resort to this, but, unfortunately sometimes we need to highlight the struggles we face. So after waiting all this time, and after all we’ve been through, we now have to write letters. So if any of you feel inclined to write a letter to help John obtain the organs he needs, we would be very grateful. Please email them to this email address catmjs@aol.com , and once we get the email address where to send them to, we will send them all there.
We also discovered that our transplant coordinator is pregnant, and due in November. We are very happy for her. I inquired as to whom they were going to train to manage John’s TPN while she’s away and they both said “Good Question”. So this also has us concerned because our transplant coordinator monitors John’s lab results weekly and handles any adjustments needed to ensure his TPN is properly balanced and modified for his needs. We could have major issues later on this year if Georgetown doesn’t bring someone up to speed regarding John’s care and TPN management.
If anyone has made a contribution to John’s Medical Recovery Account, we want to thank you. We do not know whom it is that makes a contribution, only that a deposit was made to his account. So we would like to Thank You in advance for your kindness and generosity.
Please remember John in your prayers. Thank you.
So last Thursday I again contacted our coordinator to find out how that went. They told us that our doctor was able to speak to the Miami director who told him to send a referral letter. So, our doctor is going to dictate a referral letter which should be ready to send this week to the Miami intake coordinator along with other information on John they are preparing.
We were hoping for more encouraging news and will have to wait and continue to pray for a favorable outcome.
Also, John’s 30 MELD score exemption will expire in June. I asked if there was a plan to request an extension and suggested they ask for a 40! or 50! MELD exemption for John. Our coordinator said there is a plan to request a MELD extension for John which they will determine when they see him this week when we go back down for another clinic visit. We will update later this week with what we find out.
If anyone has made a contribution to John’s Medical Recovery Account, we want to thank you. We do not know whom it is that makes a contribution, only that a deposit was made to his account. So we would like to Thank You in advance for your kindness and generosity.
So last Thursday I again contacted our coordinator to find out how that went. They told us that our doctor was able to speak to the Miami director who told him to send a referral letter. So, our doctor is going to dictate a referral letter which should be ready to send this week to the Miami intake coordinator along with other information on John they are preparing.
We were hoping for more encouraging news and will have to wait and continue to pray for a favorable outcome.
Also, John’s 30 MELD score exemption will expire in June. I asked if there was a plan to request an extension and suggested they ask for a 40! or 50! MELD exemption for John. Our coordinator said there is a plan to request a MELD extension for John which they will determine when they see him this week when we go back down for another clinic visit. We will update later this week with what we find out.
If anyone has made a contribution to John’s Medical Recovery Account, we want to thank you. We do not know whom it is that makes a contribution, only that a deposit was made to his account. So we would like to Thank You in advance for your kindness and generosity.
Naturally this has shocked all of us and we are still trying to come to terms with all of this. Please continue to pray for our family. Thank you.
Sandy broke her foot two weeks ago. So that's been the main action going on here recently. I have been trying to stay calm and take care of both of them.
Please continue to offer up a prayer for John and now Sandy.
Thank you.
Please continue to pray for the right organs to come for John. Thank you.
John thinks he is dealing with a bout of bacterial overgrowth and called the doctor about it. The doctor may prescribe a dose of antibiotics to combat it like before.
There's really not much else to say...We just wanted to keep you updated.
Please continue to pray for a favorable outcome for John. Thank you.
Last Tuesday we went back to GUH for a 2 week follow-up visit. Ironically, John started bleeding again right in the doctor’s office. The doctor checked it out and put some pressure on the area and it started to stop. He said the abdomen is a low pressure area and we can apply pressure there when John bleeds to help stop it. They also gave us a few silver nitrate sticks that will cauterize a blood wound. When we got home that night and changed his dressing he started bleeding again. I guess we rubbed the blood clot off so it became an active bleed again. So we tried the silver nitrate stick and it worked.
John seems to be more blocked up since they did the endoscopy and colonoscopy down at GUH. It also looks like his fistula has gotten larger and a loop of bowel is trying to push out. He is trying to curb his eating so whatever is blocking him up will pass through and will decompress his abdomen. As a consequence of this, his dressing changes are not lasting long. We have been changing them almost every day and last Sunday had to change it twice.
John’s MELD score dropped back down to 24 this past week. We thought the 33 was good for an entire month, but, it seems we were given incorrect information. GUH is going to file for an exception to try and get John more points. He is in an unusual situation where he needs youth sized organs and he will need more points in order to be able to compete for them. John is still checking his glucose levels and they seem to have stabilized. He also now gets a weekly dose of Vitamin K. Please continue to keep all of us in your prayers. Thank you.
Sandy Maicher tagged you in a post: feeling nervous.
Sandy wrote: "Received a call from John Maicher's transplant coordinator. With the results from yesterday's labs she ran a new MELD score. John had been at 25 but as of today he jumped to 33. This was a huge jump and a shock to all of us. This makes John higher on the list. The higher the number the closer to transplant."
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John is still currently in Georgetown University Hospital. He might be sent home today. They are still having issues with high glucose levels during his TPN infusions. John received a unit of blood Sunday night that brought his hemoglobin level up, but it is still slowly dropping. They don’t know from where, or how, he is slowly losing blood. John had a lower colonoscopy done yesterday and the doctors saw a few spots of colitis and took some biopsy samples. They saw some old blood, but no active bleeds. The GI doctor this morning said if John gets another bleed after he gets home he is to go to the closest ER and have them run tests and to scope him if necessary. Thank you for all the prayers and well wishes.
We saw the floor doctors this morning and discussed their plans for John. His hemoglobin dropped to 7.0 but they feel it is stabilizing. They may give him a unit of blood today. They are going to talk to the GI docs to see if they plan to scope John tomorrow. And, if they're going to do a lower colonoscopy to see if that is where the bleed is. They might not have an answer until tomorrow when the GI team is all in and has time to discuss it.
They feel pretty confident that Johns high glucose labs are a direct result of the TPN formulation they are using. They noticed a correlation in his different sugar levels between when the TPN is running and when it is not.
They said they did not have any plans on discharging him yet.
Thank you everyone for your prayers and support.
Finally John Maicher was able to get some much needed rest. He arrived at Georgetown at 1:45am. Today (Thursday) he spent getting settled in and sleep. The past few days exhausted him. Tomorrow he is scheduled to have scopes done. We should find out where he bled from. Thanks everyone.
The ER Doctor told me they would keep him, however, if it is going to take too long they will need to transfer him to a center that can better handle someone as complicated as John. My bet would be Lehigh Valley Hosp. Please say some extra prayers for John and Sandy and I. Thanks.
There is going to be a Beef and Beer Fundraiser Event for Johns Transplant and living expenses at Georgetown University Hospital down in Washington DC. This is generously being hosted by Jill and Shane Heintz and Angels for Ally. Sandy and I can obtain tickets or you can contact Jill at jbheintz@yahoo.com.
This event will be held on Saturday February 6th from 6pm to 11pm at Keystone Fire Co. in Boyertown, Pa. Tickets are $30 and include all you can eat ham, beef, soda, beer and dessert. Cash bar is available for wine, liquor and bottled beers. Entertainment will be provided by DJ Bruce Miller.
Generally the event is for those 21 years or older. There will be a Chinese auction and 50/50 held at the event. If you would like to donate something for the auction please contact Jill. This event has sold out in the past so please don't wait to get tickets at the door! Thanks for your support!
We are running a few fund raisers for Johns transplant and living expenses down at Georgetown, Washington, DC. We just had a Butter Braid sale and we sold over 130! Thank you everyone that purchased one. A big Thank You goes out to Gina, Stephanie, and Sandy, for selling all of these and delivering them. Thanks for making room in your freezers.
We now have a GoFundMe page for John. Some of our friends said they did not want a Butter Braid and just wanted to make a donation. They asked us to set up a GoFundMe page. So Sandy did. What’s nice about the GoFundMe page is we finally get to see whom makes a donation so we can thank them. With Johns Medical Recovery bank account at Customers Bank we do not know who it is. So Thank You very much to everyone that mailed in a check to Johns Recovery Fund. We appreciate every donation made. There are no Ronald MacDonald Family houses down in Washington, DC to stay at. Your donation will help us to stay with John when he gets the multi-organ transplant.
https://www.gofundme.com/dfbk6mvw
Gina has set up a fund raiser next week at our local Chick-Fil-A in Exeter, PA on Rt. 422. This event will run the entire week from Dec 14-18th. Unbeknownst to me, Chick-Fil-A does fund raisers quite frequently. They are going to generously donate 15 percent of your check to Johns Medical Recovery Fund. If you have a chance to stop and grab a meal for breakfast, lunch, or dinner, just show them the flyer so they know. We have some flyers at home if you want to stop by and pick some up or we can drop some off to you. Sandy is also going to post it on Facebook and Gina said you can show them it on your phone. You might also be able to just tell them you’re there for John Maicher’s Benefit. Thank you Gina.
Please continue to keep John in your prayers. Thank you.
https://www.gofundme.com/dfbk6mvw
Also.. I myself heard from Transplant this afternoon after the guys had left for home. John's MELD score is also going to be increased bringing him up further on the list.
HEALTH UPDATE: hey everyone....I just finished with my clinic visit at Georgetown. Unfortunately, what they told me was not the best of news. Turns out that, according to my tests results from my stay there in the beginning of October and the lab work that has followed I am actually much sicker than they originally thought. They have told me that my liver is not only in full portal hypertension but I also have biliary cirrhosis once again. I am to be on the look out for any symptoms that directly correlate to that. So, with that said, please forgive me while I get a little dramatic.
Restart the clock
The time has come
The final battle for my survival has begun.
Gotta dig in
For I refuse
To go down without one hell of a fight.
Please keep sending your prayers everyone for my family and I are going to be this for the long haul. We are going to need as many prayers and positive vibes as we can get. Love u all and catch ya later.