I am the wife of a 52 year old patient with PSC. He was transplanted at the end of November and has experienced rejection ever since with steroids and other treatments not working. It appears it is because his antibodies are so high. The consultants are now thinking about retransplantation, because the liver biliary tree is failing, in the hope that the new liver will not be rejected in the same way. In the meantime, he seems quite well at the moment but for how long this will last I don't know.
PSC is a condition that apparently, once showing with blood tests etc, can suddenly make your health go downhill very quickly so transplantation was recommended even with very few symptoms - we were told that it can be too late for some people if they leave the transplant until later - hence the decision to go ahead in November.
This is so hard as prior to his operation back in November, you wouldn't have known he was so poorly (no symptoms, only slightly tired), so he's gone from a very fit man (mountain biking etc) to someone on their knees with a failing transplant. Has anybody else experienced rejection in this way and needed a second transplant? What are your experiences? I have to stay positive but admit to myself, this is going to be very difficult.
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Mez4uk
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Hi, I was diagnosed with PSC and UC in 2003. The UC caused a few issues but until August last year you wouldn't have known I had PSC. Suddenly went jaundiced and fatigued. Now I'm looking at a transplant, (going for my transplant assessment mid March). My biggest worry really is that apparently PSC can reoccur in the transplanted liver.
I'm sorry to hear your husband is possibly facing rejection. Hope everything goes well for him and you.
I haven't had a second one myself and I didn't need mine through psc but I do know a few people who have had problems and required a second transplant be it within days, weeks, months or years 99% of them are still here happy and healthy, on something as big as transplant and decisions we have to put our trust in the consultants /surgeons. And because he had no symptoms that doesn't mean he didn't need it, I was basically crawling on my hands and knees with everything cirrhosis can throw at you and I wasn't even on the list and it's all because of blood's as they tell the full story, he feels rotten at moment because his new liver isn't functioning once he receives a new one you will see the difference...... And don't worry about psc returning we could walk out the front door and die but we can't live on ifs and buts.. Hope he receives new one soon x
Thank you so much for your reply, it has given me hope. We are aware he needed the op as when he was on the ward post op he shared the room with another patient with PSC who sadly, had left it too late. It was a shock. We were lucky he had his op so quickly but when you haven't had any symptoms, it's a long way to fall. The nurses said that when you are so very poorly pre-op the only way is up after transplant. It is a good team at the hospital and you're right, I have to put my faith in them. Thanks again for your thoughts and for giving me hope x
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Unexpected liver transplant due to unexplained liver failure
Any advice welcome
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Update from a worried mom.
