Re: 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 long 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

>

Hi :

I've had PSC for 22 or 23 years (I'm 42 and got diagnosed around 19

years old). My LFT's are very close to normal and the last biopsy I

got last summer I was at about stage 2 and didn't show much change

from 10 years before that (1997) and 10 years before that (1987). My

doctor (Dr Kaplan) was very surprised as he expected I would have

progressed. An ERCP prior to that also looked good. I've had some

fatigue and itching issues in the past year to year and a half plus

and some light pain but other than that am fairly healthy.

I've been loafing lately but I powerlift and bodybuild and keep busy.

I also have a variety of other inflammation related diseases. I had

UC but was bagged in 1998, etc.

I eat a lean diet and that helps with the itch and I eat a lot of

protein. I've been taking 2400mg of URSO /day for maybe 12 years.

I take Questran and Rifampin for the itch but I've found eating

virtually no fat is the best thing.