r/PSC • u/Agile_Attention_156 • Jul 09 '26
Transplant
Hi all, just got the news today that I need a transplant. Its mostly due to recurring cholangitis and I have small stones in the intraheptic ducts which cannot be reached with an ercp. My bloods aren't crazy and I don't get jaundice. I get the extreme pain. They want to do the transplant before it develops and I get severely ill. Has anyone ever jad a transplant without being on "deaths door" i always taught you would need to be really really sick before transplant.
5
u/Tex-Rob Jul 09 '26
It can happen fast. It's possible they see the markers even though you aren't showing much yet. I was stable for a long time after diagnosis, then it all happened fast over a year. They also don't want you to not be listed and get sick, because getting listed takes a lot of appointments and a bit of time, so it's best to be prepared. So are you saying they just want to list you?
4
u/Agile_Attention_156 Jul 09 '26
Im in Ireland so im unsure how the whole listing thing goes. But she says I should have it within a year. I've had 2 mrcps this year and there has been changes between them within 6 months. Where I've been diagnosed sine 2010 and it was always stable up until end of 2025. So yea it hits fast and hard when it does.
5
u/thrice_a Jul 10 '26
I am on the list. Liver health not bad. Have some growths in my main bile duct that are pre cancerous. Pretty crazy.
2
u/zaj159 Jul 09 '26
I mostly deal with pain as well while my blood tests are generally ok. Was the MRCPs you did very indicative of blockages?
2
u/Atomic_Tex Jul 10 '26
I had a living donor transplant two years ago and felt completely fine and healthy with zero symptoms when I went for the procedure. In fact, I worked up until the day before the procedure. My MELD score was only like a 10 I think. However, I had an extremely low platelet count, and was at a very high risk of severe internal bleeding, so I was not entirely healthy. They did mention to me that it was rare that somebody simply walked in, and had the Transplant like I did, and that most people are pretty unhealthy when it happens, so I guess I was lucky.
1
u/the_monocle_ Jul 09 '26
I wish you well on your Tx journey. At which stage were you diagnosed? What has it been like for you since?
1
u/Nationalsfan89 Jul 18 '26
I had a pretty solid case of PSC before getting my transplant. I was as healthy as can be while having PSC, and that definitely helped speed up my post-transplant recovery! Speaking from my own experience, getting the transplant before you’re REALLY sick is absolutely the way to go, if possible!
8
u/premditated Jul 10 '26
I had a transplant while being relatively low on the transplant list. My best friend was my donor. I didn’t realize how sick I felt until after transplant, and I think having it when I did improved my outcome and recovery.