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JEN & JON'S TRANSPLANT JOURNEY 
Welcome to our Web Page.
It is to keep family
and friends updated about Jen & Jon.
We were blessed with our daughter who had an undefined liver disease that was diagnosed at 4 weeks of age. Almost 5 years later we were blessed with our son Jon who was also born with the same disease. In 1992 both kids were listed for liver transplants.
Jen received her first liver transplant but had many complications some of which may have led to her needing a second transplant years later. She experienced acute kidney failure after both liver transplants requiring temporary dialysis and as a result her kidney function is now watched as closely as her liver function. For now she has normal kidney function and we are praying that she will never need a kidney transplant. Jon received his liver transplant just 15 days after Jen. He did very well for 13 years. Due to a second liver disease Jon had to undergo treatment that had some awful side effects. Jon had a very difficult time both physically & emotionally dealing with those terrible side effects but he has overcome both liver diseases. He does have advanced fibrosis so his liver function is watched closely & we do not know whether or not he will need a second transplant.
Jen has just(December 2008) finished college, on 10 meds, is diabetic, has cataracts, bilateral hearing loss, non progressive scoliosis, has lab work every 4 weeks & sees the transplant team every 3 months. Jon is a high school senior on 2 meds, has advanced hepatic scarring(bridging fibrosis)has labs every 12 weeks and sees his transplant team every 6 months.
As a family we know that whatever the future has in store for us the Lord will help us through it. We praise the Lord for all the many blessing he has bestowed on our family.
FUND RAISING INFORMATION
We don't have any fund raising events going on at the current time. We will always have a need for funds for transplant related medical expenses as these expenses are life long. The uninsured medical expenses are at least $10,000 per year. As of summer of 2008 the account is down to $10. We will post a note as future events are scheduled. In the meantime, if you feel led to donate, online contributions can now be made at the NTAF website. The address is www.transplantfund.org and select liver from the drop down menu then go to the L section to find Jen & Jon's page to donate.
THANK YOU ALL FOR YOUR SUPPORT, whether it's donations, prayers or you are thinking of Jen & Jon. We appreciate it all. May God bless you all.
Creative Spiritz
Journal
Monday, June 15, 2009 8:00 AM CDT Since our last update we had a scare with Jen's labs. She had routinely scheduled labs that came back showing very elevated liver numbers. Several days later she had labs repeated at Emory and was also seen in clinic. Praise the Lord, her numbers were much much better. We don't know what the cause was, maybe a mild viral illness? She's had labs repeated since at home and all but one liver number was back within normal range. It's the ggt that's still up but it is trending down nicely. It's always the last number to come all the way down to normal and it does like to take it's time doing so.
She has continued to search for a job but has not had any luck yet. She is very disheartened about ever finding employment. Her Cobra premium assistance ended with the June payment. Her July premium is due to Cobra by July 7th. She has applied to another program for assistance & we hope to hear very soon on whether or not she is approved. Her premiums have increased to $399 per month. If she does not get approved we don't know what she will do. Please pray that she does get approval.
Mark's lay off is in the 5th week of a 6 week lay off schedule. He is off for 2 wks, then works 1 wk, then off 1 wk and then on for 2 wks. It's a 6 wk cycle that will continue until business picks up again. We are very grateful that his employer is doing the lay offs this way because it means that no one loses their health insurance. With some buying of food in bulk, cutting back or out on somethings & using what little we had in savings we will survive this first lay off cycle. JUST BARELY!!! We have not figured out how we will get by if the lay offs go into another cycle & it does look like it will.
Plus Jon's docs want him to have an upper endoscopy to check out his esophagus. This would be a day surgery procedure. Our costs would be from $500 to $1000! At this time we are delaying scheduling the procedure until we figure out how to pay for it.
In our family it sometimes feels like "when it rains it pours." I also need surgery. My iron counts have been low for 2 years and now my blood counts are dropping and not rebounding back into the normal range. My counts are not normal but are finally up enough to have the surgery which is scheduled for July 1st. I also have something else going on that could potentially develop into a bad situation if we delay the surgery. But this will be another $500 to $1000. Maybe a little more since it would require an overnight admission afterwards.
I am contemplating postponing the surgery until after Mark's job situation is more stable. The problem with doing that is IF things go really bad & Mark is permanately laid off we would lose insurance coverage.
We can borrow against Mark's retirement but we can only take out $ one time. I really want to wait & see if the layoffs go into a second cycle & if so use the $ for living expenses. So it's one loan we can do... for living expenses? Jon's procedure? My surgery? And no we can't take out enough for all 3. There isn't that much available plus we will have to pay it back in deductions from Mark's paychecks afterwards. Should Mark get permanately laid off we wouldn't have to pay it back, per se, but would have to pay early withdrawal penalites & taxes when we file our 2009 income taxes.
What a stressful place we are in now. Jen's Cobra premiums - Mark's lay off - Jon's procedure - Mom's surgery - Jen employment(or lack there of). Even with all the negative stressful things going on in our lives we do have so wonderful praise reports! Thru bulk buying we managed to get $250 in food money to last for 4 weeks instead of the usual 2 weeks. We've also been given unused food items after helping at church events which really help stretch our food $ even more. Mark, unexpectedly, received $39 from an insurance classaction settlement that we didn't realize we were a part of. My pay from working church nursery for May was more than usual.
We have many trials and tribulations in our lives but we also have many blessing too. Blessings that in a very tangible way show us(& others too I hope)that God is always with us. He is the rock that we float on during these storming times.
Read Journal History
Hospital Information: Patient Room: Both kids are home! Jen or Jon
PO Box 1948
Chatsworth, GA 30705
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