How long can you live without a liver transplant?

Continuing the discussion from Newly diagnosed after a long year:

Hi Brad,
I have not been on this site for a couple of years. Just happened onto this due to looking at my junk mail. Brad, I could have written your story about me! Same onset, cholesystectomy everything. Happened to me in 1991, I am now 74 and still actively working as a Physical Therapist, I did not have a liver transplant and my labs are now normal. My current Doctor thinks it was a misdiagnosis because I am still alive. Duh! Clearly it was not a misdiagnosis, ERCP, labs and all other tests were clearly positive for PSC. After many intense episodes of pain and sickness over a year I got deathly ill, turned yellow and had a cholecystectomy and jejunostomy and spent 11 days in the hospital. It was hell for the first year and better the second year after that. By the 3rd year I was feeling pretty good except for rare episodes of pain and night sweats. My Gastroenterologist told me I would be dead in 10 years without a liver transplant, in an odd twist of fate he died 5 years later of bowel cancer, he was my age at the time. I have not taken any prescription medications for this as there was nothing effective for this in 1991. Still active in hiking, biking, running (slowly) photography (going back to Iceland next year). One thing that helped a lot was that I learned as a physical therapist how to do visceral mobilization, unfortunately it is hard to find people who know how to do this correctly. Another thing that helped, “Faith destroys fear.” Best wishes to you.
Lance[date=2020-10-07 timezone=“America/Denver”]

3 Likes

Lance,welcome back.
People can live decades with PSC; I lasted 4 years, 2 months from diagnosis to tx. Others, not even that.

I am glad you are still able to live life as you want. That is a great goal for us all.
Jeff

2 Likes