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It's a good thing that you cannot see me because every time it tell this story, I cry. My youngest son, Jason, was diagnosed with Wilson's Disease when he was 14 years old. By the time he was diagnosed, his liver was already scarred and cirrhotic. However, with chelation therapy, medication, diet, regular sclerotherapy and eventually esophageal variceal banding, (and the occasional use of a spleen guard), Jason was able to lead a fairly normal life. Late in 2012, Jason started retaining fluid. This was treated with diuretics. Jason was married in March, 2013 to his beautiful bride, Amanda. Early in 2014, Jason was hospitalized for build up of ammonia levels in his brain which was very disturbing. It was at this time Jason was told he was in end stage liver failure and needed to find a donor. We were humbled by the number of family and friends who stepped up to be considered for this very heroic and selfless gift. It was the spring of 2014 when Jason's cousin, Jacob, began the screening process. You can imagine the mixed emotions my sister, Sandy, went through as she prepared to see her son undergo this surgery to save the life of her nephew. So you can also imagine our disappointment when we received a call many weeks into the testing that Jacob could not be the donor. A few weeks later, Andrew, another one of Jason's cousins, received a call to begin the screening process. My sister, Barbara, was now preparing to see her son through this. His testing went a little further and involved a liver biopsy before we were given the news that he would not be able to donate a portion of his liver. By this time, Jason was having weekly paracentesis procedures to remove the large amounts of fluid that were building up in his abdomen. It seemed much longer, but about a month later, we were told Amanda's cousin, Donna, was contacted to begin the screening process. Donna went through all the testing and we were finally given a date for transplant surgery. November 25, 2014. Two days before Thanksgiving. We had so much to be thankful for. The day arrived. We prayed, shared hugs and kisses and they went into surgery. We went to the waiting room to prepare for a long day - of waiting. We felt like we weren't even settled into our seats when we were called into a conference room. When the doctors opened Donna, they found issues with her liver that were not revealed through all the testing. They would not proceed and give Jason a liver that was compromised. We were devastated! Even worse, when Jason woke from anesthesia, someone had to tell him that the transplant did not happen. Now we wait. The Transplant Team again notified us that they were screening someone who wanted to remain anonymous until she was far enough into the testing that it was pretty much a "go". All we knew was the the donor was a "she". One day in December, Jason received a call from an old friend. He had not seen her since his wedding. Our families had met in church when Jason was about 12. We had been very close for years and remained connected through siblings and celebrations but with colleges and graduations and new jobs, we all did not see each other a lot. Jason was curious when Rachael called and said she wanted to stop at his house to see him. Rachael had been following Jason's progress on FaceBook and when she read that Donna's surgery had not been able to proceed, she said she knew it was her. She didn't want Jason to endure another disappointment so remained anonymous until the Transplant Team told her "It's time!" So there she was. At his house. Sharing the news. Carrying his new liver. Surgery was January 27, 2015. We were told it was textbook. Rachael's liver was big and beautiful. Three days after surgery, Jason walked into her hospital room to thank her. Both of our families got together on January 27, 2017 to celebrate two years post transplant and Rachael's recent engagement to Ethan and Jason and Amanda's beautiful little boy. We do have so much to be thankful for!! Just a side note - Rachael ran the 5K in the Donor Dash in 2015, just 2 months after her surgery. And, yes, I'm crying...............but they are happy tears :)
I wrote the above paragraph in February 2017. It is now January 2018 and we just celebrated 3 Years Post Transplant last night with family and friends. Rachael and Ethan were married just two weeks ago on January 14th and about a month ago Jason and Amanda announced that an addition to their family will be arriving this summer. Rachael and Jason are both leading very healthy and happy lives.
Again, I am adding to our story. It is January 2019 and we are planning our 4 Year Post Transplant Dinner on January 26th. I will have more exciting news to share after that, so check back soon.
We are walking/running in this year's Donor Dash to enable other families to enjoy the healthy lifestyles we enjoy every day.
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