Procedure or Surgery | Liver transplant

Denisepdx

I realize a lot has been left out of our journey. After my last post our daughter had 3+ mostly healthy years. She did try Nexavar/Sorafenib two more times at lower dosages and could not tolerate it, lost all her hair (tolerable), but the rashes and skin issues were not tolerable.
Eventually her bile ducts no longer worked and she had temporary stent put in, which worked for a couple of months. After that she had tubes placed that collected bile in external bulbs and bags and had very short life spans; they had to be replaced every 3-4 weeks because they’d get gunked up. This went on for about a year and a half. The hardest part was keeping the skin around the tubes intact. The tubes contrastât leaked at the sites they exited her body and we sometimes had to change the dressings every 1/2 hour, other times they might last for 12 hours. We got really good at making the dressings with sanitary pads, cut to size, held in place with Tegaderm.


Eventually the team and the tumor board decided the benefit out weighed the risk and she was put on the transplant list. After 6 months we got the call and she had a liver transplant. The recovery was bumpy, to put it mildly, she had multiple organ failure post transplant and was on kidney dialysis for about 6 weeks. Eventually the new liver kicked in and her kidneys recovered. She has had 3 transplant anniversaries and is doing remarkably well. Each person’s journey is unique. We never expected such an incredible outcome. I share this now so that people know there can be hope in the midst of slim odds. When diagnosed at 18 we were initially told to take her home and help her to be comfortable as she likely had about 6 months to live. We are so thankful we went to a different hospital, a teaching hospital, which made all the difference.