15 years and counting

[Guest guest]

Dear Wymom;

So far I have had it (PSC) for 17 years. I may need a tx this year... so I way beat the average. Many great years of health.

Joe

-------------- Original message from "wymom94" : --------------

> question: does anyone have long term psc? 20+ years without transplant? Are the statistics absolute? I keep reading about 7 to 10 years before liver failure. is this always the case? I never read any article that have survivors. Don't want to bring anybody down. Just wondered if anyone out there knows.Hi , I know the feeling of reading the stats on PSC and feeling afraid. My son was dx last year and I had the same fear and question for the boards then that you have now. In the early months after dx, I kept thinking he's 12 now, will he make 20, 25? I'm no expert on PSC, but have come to learn more and I do know that there are PSCers who buck the worrisome stats, most definitely -and some by quite a lot. The average of 7-10 or 7-12 yrs is not always the case. I have faith now (where I didn't before) that my son may go many years before end-stage, well past the oft read avg stats. It's possible he may go so lo

ng before things worsen that the cure will be found before he's at end-stage, or some treatment may be found in that interim that will halt progression. And, if he does come to end-stage before a cure or treatment and gets a transplant, that's not the end of anything, but another beginning and another route to stretch his lifespan even further. He'd still be a survivor of liver disease w/ a transplant. Your question doesn't bring me down at all, but does remind me of the place I once was; I hope that you can read into my post to find that there will likely be a different place for you as you learn more and hear from others who HAVE bucked the stats. I'm not always positive about the future of my son's psc, but it was a rather significant boost to learn that there's no lock-in to 7-12 yrs or thinking of a transplant as a negative end result. I have much hope and faith for his future now -and hope you garner the same feelings as

you learn more.Best wishes and God bless,Meghan, mom to 13yo Wyatt-psc, ibd, fap, a-i hives, gerd