Hi everyone - anyone willing to share how long a person could live with end stage liver disease before needing transplant? I understand how our psc wildly differs but would appreciate any experiences. Thank you.
I was diagnosed with PSC in 1989 and told I would need a transplant in 5 years. My LFs normalized and my next flare up was 12 years later. By that time the ducts were so bad it was impossible to put in a stent. I went another 3 years and developed bile duct cancer which led to my transplant. That was 9 years ago. My path was up and down with a few twists along the way
My son is 10 now, and was diagnosed just before he turned 9. An interesting discussion went on from the specialists, as our gastro doctors, of whom there were 2 at the time, both agreed a transplant would be needed in "5 years at the outside". However, when a third specialist came in for a consult, who was from the liver transplant team that we would be going to when the time came, he was extremely reluctant to commit to any timeline at all, and said that they key to knowing would be very thorough and frequent monitoring through use of biopsy, other conditions developing, liver enzymes, etc. He just would not give us any more of an answer than "probably his liver won't last until he's 90, but we really can't get into predicting anything." So I don't really have an answer at all for you, its a great question, and I myself have asked that question of our specialists repeatedly, but this has been our experience so far.
Payton - thank you for sharing, it always gives me hope when I hear about transplant success stories! I wish you continued good health.
3kids - having recently had a baby myself, I can't even begin to imagine how difficult it must be to have your child go through this. How is your son doing? While I'm unsure what the cut-off age is for pediatric PSC, and I understand the path/process is different, I was 17 when I was diagnosed. I will be 32 later this year and at this point my GI doesn't believe I need to see the transplant unit just yet (I have had balloon dilation a number of times times, preventative variceal banding, and an episode of ascites which happened recently at the end of my pregnancy. My LFTs have always been outside normal).
Any experiences others wish to share are appreciated.
Thank-you for thinking of our son:) He is doing okay. His last banding for varices actually showed very little progression of it since the last procedure, and so that is a positive. His liver numbers are almost normal, although the damage remains and other small symptoms of the liver progressing are starting to show up. The colitis, which was the biggest problem, seems stable for now. He is on a new course of drugs, and while we have alot of reservations about prolonged use of the immune suppressing ones, it is a choice we must make, unless we wish to have the colon come out. Our son is only 10, and we don't really feel we can make such a life-changing decision for him at such a young age unless it is crucial and no other options are left.
We are starting to see more tiredness, pain in the body, particularly the thighs, hips, shoulders. We are unsure why, other than there is chronic inflammation. We have had him tested for all manner of rheumatoid issues, but none show up. But, his color is good so far, his itching seems mild so far, his concentration is still quite good most days, so we are thankful for the days we see that are pretty normal!
If anyone with UC AND a liver transplant could speak to how the transplant affected the colitis, we would appreciate it. It is one of our biggest concerns, as doctors have said that sometimes in children, once the liver is changed, the colitis "goes crazy" and ends up needing to be removed as well withing a year or two.