Basically I have been suffering with liver problems from the age of 14 and have never really got to grips with my illness because I have soo much going on. I have heard that PSC is more common is males than females and I am just looking for someone who can help me work out my illness.
Thank you in advance
(:
Have you spoken to children's liver disease foundation? They cover people who were diagnosed under 18 even if they're an adult now. Have a look at cldf-focus.org, their young people site.
I actually found them last week. They have been very helpful (:
Hi.
I can only speak from my experience of PSC.
Had gallstones in 1990 and my gall bladder was removed. My LFTs did not return to normal and after many tests, umpteen ERCP's I was told I had PSC. It was explained that the cause was unknown (now believed that genetics may be involved), that it was slowly progressive but that eventually I would need a transplant. I was prescribed Ursodeoxycholic Acid (Urso) as it was believed that it extended the time between diagnosis and transplant, but not in every case.
I lived a completely normal life. I cut back on alcohol (not that I was ever a big drinker), didn't itch and had no other symptoms until shortly before the transplant when I was feeling a little fatigued.
I had a transplant in 2006 and apart from a loss of stamina and suffering also a loss in brain function (my memory is not as good and my ability to think through problems has diminished (could also be age related), I have had 7 very healthy years: no infections, no colds/flu, no time off work due to transplant or liver issues.
PSC may return after a transplant, but so far my LFT's are good. The only issue is bilirubin which has consistently been slightly above the upper norm level. It does not impact on my lifestyle though. In fact the only impact on lifestyle until a year ago was the requirement to avoid grapefruit (used to be my weekend luxury)!
A year ago, another health issue raised its ugly head and that is having a big impact on lifestyle. Probably I have been very fortunate that PSC and the transplant had no major impact but we've been dealt an unlucky hand and just have to get on with it.
Good luck. Hopefully you'll be able to take PSC in your stride.
Thank you,
I have only recently learned about the psc. Luckily I havent had to speak about transplant. I had gallstones at the age of 14 and thats how they learned of the autoimmune hepatitis, although this took a long time. I hope that I will go into remission and that my urso will help that.
Newbie update and now very scared.
worried about the future
Son has been told he might be on transplant list
