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April 2011






One Family
Two Kids
Three Transplants

The Threelivers Family Story

Our daughter Jennifer was born in 1986 with an undefined liver disease. She was evaluated at 4 weeks old for prolonged jaundice. It was not known until she was critically ill at 6 months old that she would eventually require a liver transplant to survive. Her brother Jon was born in 1990 and it was then that we first heard the word familial. Due to the enormous cost of genetic testing we still do not know exactly what liver disease they were born with. Doctors have said it was most likely some form of PFIC. Progressive familial intrahepatic cholestasis is a disorder that causes progressive liver disease, which typically leads to liver failure.

While Jennifer did fairly well until shortly before her fifth birthday, Jon, on the other hand, did not do well as an infant. In 1992 Jennifer had several massive bleeds that led to her being listed for transplant at 6 years old. As it turned out both kids were evaluated at several transplant centers in Texas before they were actively listed at the same time at Children’s Medical Center of Dallas. Jennifer received her first Gift of Life on February 25, 1993. She had major complications which lead to her being inpatient for 126 days. During that time on March 12, 1993, her brother Jon received his Gift of Life. They were transplanted just 15 days apart. It was like a wild roller coaster ride with both kids transplanted so close together. Jennifer had many complications but Jon did extremely well and only spent 13 days inpatient. While it was a tough time we will always be grateful for the timing of their transplants in 1993. Just as God gives everyone hope in the form of His son, Jesus; He gave us hope for Jennifer in the form of our son Jon.

Jon’s recovery went well but just after one year post transplant we discovered that he had contracted another second unrelated liver disease. Despite that he still did very well for 13 years. During that time though, Jen’s precious Gift of Life struggled. In August of 2002 she was listed for her second transplant at Children’s Healthcare of Atlanta. On December 30, 2002 she received her second Gift of Life. We feel it is nothing short of a miracle from God that her first Gift was able to give her life for 9 years 10 months and 5 days. It gave until it could give no more.

From October 2006 to October 2007 Jon underwent a treatment plan to try and save his liver from being destroyed by the second liver disease. He had many horrible side effects from the medications and finally the treatment had to be stopped early because it was no longer safe to continue. Once again we feel our family received another miracle from God because, in spite of stopping the medications early, the meds did work to rid Jon’s body of the second liver disease.

As of this writing (April 2012) Jennifer is 26 years old, on 6 medications, is diabetic (diet controlled), cataracts, bilateral hearing loss which requires aids, non-progressive scoliosis, 2 bile duct strictures that we are hoping with ballooning & stents will resolve without destroying her liver, has lab work every month and sees her transplant team every 3 months. She is currently looking for employment in several career fields. She would love to work with children or animals.

Jon is 22 years old, on 5 medications, has lab work every month, and sees his transplant team once a year. He does have significant issues with reflux and has 4 varices in his esophagus. While his biopsies have not yet shown cirrhosis his doctors have stated that it is likely that he will need a second transplant in the future. He has been diagnosed with PTSD brought on by previous medical trauma and significant depression issues. He is looking for employment.

We praise God for all three of Jennifer and Jon’s donors for without each of them Jen & Jon would not be here with us today. 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 blessings He has bestowed on our family.





FUND RAISING INFORMATION

We still have copies of Jen & Jon’s second edition cookbook. If you would like to purchase one to help with their medical expenses they are $12, which includes shipping. THANK YOU!

If cookbooks are not your things but you want to donate, online contributions can be made to Jen and Jon’s Transplant Fund at the HelpHOPELive(formerly NTAF) website. http://www.helphopelive.org/contribute2/patient_results.cfm/patient/E730BF8F-ADE5-A69A-FBCADF6282B6E869

THANK YOU ALL FOR YOUR SUPPORT, whether it’s donation, prayers, or you are thinking of Jen and Jon. May God bless you all.





Journal

Friday, June 21, 2013 11:33 AM CDT

We got Jon's stomach and esophagus biopsy results back. We were so pleased that no varices were found, however, Barrett's Esophagus was diagnosed. We were not surprised given that he has had reflux type issues basically since birth, not officially diagnosed until 3 yrs old but symptoms were there from birth.

Barrett's Esophagus is a condition in which tissue lining the esophagus is replaced by tissue that is similiar to the intestinal lining. This process is called intestinal metaplasia. People with Barrett's Esophagus are at increased risk of a rare type of cancer called adenocarcinoma. Jon has an additional increased risk because he has been on long term (20+ yrs) of immunosuppressant medication because of his liver transplant. We find it concerning that in the past 6 months his cyclosporine dose was tripled from previous dose that he'd been on for about 14 yrs. Even before that his dose was lower than current dose for about 2 additional previous yrs. But as we were told prior to transplant a transplant is NOT a cure. It is like trading one set of problems for another. But without transplant Jon would have died before his 3rd birthday. With a transplant a second chance at life is given. So we take the risks with the chance to live.

He will continue to have(at minimum)yearly upper endoscopies to monitor his esophagus and watch for signs of cancer development. His omeprazole dose has been increased to twice a day in addition to continuing with zantac. If he does not get some relief from symptoms soon then another medication will be added. The doctor indicated that it is imperative that his reflux is better controlled.

If the increased in omeprazole dose helps then he will remain on a yearly checkup schedule with transplant. If not then he will be referred to a Gastroenterology doc at Emory for further med changes and possible more frequent upper endoscopies

Our prayers for Jon are:

1) Esophagus remains stable with no cancer development
2) Emotional health continues to improve
3) Liver functions remain stable
4) Finds employment
5) Grows in his walk with the Lord

Thanks for stopping by to check on Jon. We so appreciate your thoughts and prayers.

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E-mail Author: threelivers@windstream.net

 
 

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