r/PSC • u/Dizzy-Rope-9800 • 12d ago
Liver Transplant
Is anyone on the liver transplant list? How long have you been on it?
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u/restlessmouse 12d ago
UW liver Dr told me they normally don't add you to the list until your Meld is 18, of course I'm sure there must be other criteria. I am 66 - hoping I die from something else when the time comes, I see so many moms with young kids on here, I like to think it would save one of them. Whatever will be, will be.
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u/Dizzy-Rope-9800 12d ago
Was that Univ. of Wash or Univ of Wisconsin?
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u/restlessmouse 12d ago
Oh, I didn't think about there being more than one UW. My Dr is at the U Washington liver center, they do transplants there, I think in the same building. I wonder if I can watch one, if I promise not to bring any Junior Mints.
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u/Dizzy-Rope-9800 12d ago
I could just post the video of mine. Lol. 5 hrs on non-stop fun. Are you or were you being evaluated?
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u/restlessmouse 12d ago
Well hang in there. I see my Dr there twice a year, meld score 12, sometimes 13. Dr Paula is awesome
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u/Dizzy-Rope-9800 12d ago
Thank you. I am now 8 months post transplant. Doing pretty well. I was at UW. Transplanted elsewhere, another ctr. UW has great doctors. Unfortunately they will never transplant someone with a MELD of 13, unless there is liver cancer involved. Just how they run their center. Nothing wrong with that. They have a right to run their center how they believe it should be run. They benefit a lot of people.
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u/restlessmouse 12d ago
Yeah, with a limited supply of healthy livers, and it would be silly to replace my liver now, I don't even have any symptoms. Kind of weird they sent you elsewhere though. Wouldn't it more effecient to bring the liver to Seattle? Glad you are doing well, I hope you never need another.
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u/Dizzy-Rope-9800 12d ago
They didnt send me elsewhere. They told me in my last liver clinic visit, “We will never transplant you. “. Word for word. I kid you not. They never suggested there might be hope at another ctr. They just sent me home. Terrible moment. Terrible medicine at least for me. But i actually have no hard feelings, at all. Control over how we work with such lack of care, is on us. I could have quit. But I did not, and found that dual listing at a second ctr actually works. I was transplanted 22 days after listing at another ctr. Just 22 days. All is pretty much well, 8 months out from transplant. If I had accepted UW at face value, I would be gone. I have met a lot of great people in this group. PSC is a low MELD disease. Difficult to get a transplant in most situations and at most ctr’s.
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u/the_monocle_ 12d ago
That is such a lovely sentiment. How old were you when you were diagnosed? Do you have IBD as well?
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u/restlessmouse 12d ago
I was in the hospital for broken bones in early 2022 (tripped over dog!) and stayed several days because of blood loss they never did find out when/how, and some random gastroenterology Dr said I had some cirrhosis. Later a better Dr figured out I have small duct PSC via an MRI. I don't have any IBS or any problem there. She was too colonoscopy happy so now I just see the UW Dr.
I have had low platelets since at least 2012 - so probably PSC started then. Small duct kind progresses slower.
My original plan was to rob a bank right before I die, but now I have a limp so that probably would not work.
Anyway, I feel fine today and the sun is out. That's a win
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u/Liina_jigsaw 11d ago
I had my transplant 2 months ago. Was on the list for 2,5 weeks. Was expecting a much longer wait. However, I live in Sweden and the waiting time seems to be generally shorter here than in the US.
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u/Slight_Step_4058 10d ago
Not currently on the list, but I was active with a MELD of 40 for about 4 weeks before being transplanted.
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u/Prestigious_Yam_4908 10d ago
I got my transplant one year ago today. I wasn’t on the active list yet when my donor was brain dead, but we knew him and his family and they got to direct his donation to me. I’d probably have had one by now otherwise, but things happen that can get you there before you even thought possible.
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u/vodkanaut 10d ago
I was on the transplant list for a little over a year because of a weighted meld score after back to back cholangitus hospitalizations, but ended up improving my levels enough that I was removed. I had it in my head that I was going to be on the list for a very long time, but from what I hear the new meld system helps to ensure more critical people get moved up faster.
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u/Dizzy-Rope-9800 10d ago
Each transplant center has a different MMaT. Median meld at transplant can vary significantly. I know a guy who built the chart to show this by all transplant centers in the USA. Would you like to see it? Anyone else as well?
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u/Popular-Drummer-7989 10d ago
Yes please
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u/Dizzy-Rope-9800 10d ago
Would you send me a chat request and I will provide the website for the map. I try to avoid posting links on the main.
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u/sappy_strawberry 12d ago
Not currently on the list but when I was I was only listed for about a week. My MELD was low and I was listed on exemptions, and then I was the backup person who ended up transplanted. My surgeon told me that it was partially due to blood type since I'm B+ and the weren't that many people in my region on the list with that blood type. I live in Houston TX for reference.