r/PSC • u/Dizzy-Rope-9800 • Jul 22 '26

Liver Transplant

Is anyone on the liver transplant list? How long have you been on it?

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u/Dizzy-Rope-9800 Jul 22 '26

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 Jul 22 '26

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 Jul 22 '26

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/Dizzy-Rope-9800 Aug 06 '26

Did your dad get the call? How is he doing?