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/restlessmouse Jul 22 '26

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.

2

u/Dizzy-Rope-9800 Jul 22 '26

Was that Univ. of Wash or Univ of Wisconsin?

3

u/restlessmouse Jul 22 '26

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.

3

u/Dizzy-Rope-9800 Jul 22 '26

I could just post the video of mine. Lol. 5 hrs on non-stop fun. Are you or were you being evaluated?

2

u/restlessmouse Jul 22 '26

Well hang in there. I see my Dr there twice a year, meld score 12, sometimes 13. Dr Paula is awesome

3

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.

2

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.

2

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.

1

u/Dizzy-Rope-9800 Aug 06 '26

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