Re: fear of the future

[Guest guest]

,

Try not to worry too much over the statistics. I'm not "officially" at 20+ years, but close....was very ill for a couple of years before docs figured it out in 1989. I've had some very tough times through the years, but for the most part I've been lucky and still live a somewhat normal life. Way back in '89 I was told "no doubt" I would need a transplant within 7 years...thanks docs for almost scaring me to death!...literally. But seriously, way back then doctors had so little to go on about psc that's what they really believed. We are coming to know that for many, psc will be a very long term chronic disease....it's hard to know if we are really the lucky ones or not. When I see someone like Klug that looks like he is doing great with his transplant I briefly find myself wishing I could just get one and be done with it already and not constantly deal with it! But then I get real, knowing that transplants are not foolproof and come with their own set of problems. All of our experiences with psc are different. I try to be mindful of the future, but not put to much weight on the statistics and move on with trying to do the things I want to accomplish....and have done more than I ever thought I would! Early on I made the mistake of letting the statistics set the bar for what I would do with my life, then around year 10, I was like, wait a minute? Hopefully you can avoid that. :-)

Jeff

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> question: does anyone have long term psc? 20+ years without transplant? Are the statistics absolute?Create a Home Theater Like the Pros. Watch the video on AOL Home.

[Guest guest]

>Thanks Jeff for your message. That is exactly what has been going

thru my head. Im making choices based on fear. You guy gave me some

hope. I'v been reading medical studies lately and they left me

hopeless. Not a good place to be. thanks again

> ,

>

> Try not to worry too much over the statistics. I'm

not " officially " at 20+

> years, but close....was very ill for a couple of years before

docs figured it

> out in 1989. I've had some very tough times through the years,

but for the

> most part I've been lucky and still live a somewhat normal life.

Way back in

> '89 I was told " no doubt " I would need a transplant within 7

years...thanks

> docs for almost scaring me to death!...literally. But seriously,

way back

> then doctors had so little to go on about psc that's what they

really believed.

> We are coming to know that for many, psc will be a very long

term chronic

> disease....it's hard to know if we are really the lucky ones or

not. When I

> see someone like Klug that looks like he is doing great with

his

> transplant I briefly find myself wishing I could just get one and

be done with it

> already and not constantly deal with it! But then I get real,

knowing that

> transplants are not foolproof and come with their own set of

problems. All of

> our experiences with psc are different. I try to be mindful of

the future,

> but not put to much weight on the statistics and move on with

trying to do the

> things I want to accomplish....and have done more than I ever

thought I

> would! Early on I made the mistake of letting the statistics

set the bar for

> what I would do with my life, then around year 10, I was like,

wait a minute?

> Hopefully you can avoid that. :-)

> Jeff

>

>

> -------------------------------------------------------------------

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> ---------------------------------------------------------------

>

>

> > question: does anyone have long term psc? 20+ years without

> transplant? Are the statistics absolute?

>

>

>

> **************Create a Home Theater Like the Pros. Watch the video

on AOL

> Home.

> (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?

ncid=aolhom00030000000001)

>