Re: re figures.

[Guest guest]

>Well I don't feel that would be an accurate statement, because it

still gives the impression that PSC will lead you to a transplant or

death somewhere down the road. As I have stated, the Hepatologist I

have been to see at MUSC and Vanderbilt have told me that only 30-40 %

of patients from their opinion ever progress that far.

According to Ivor and other posters in here, Hepatologist they have

sited had a similar consensus that most of the patients will never

progress to the point of dying or needing a liver transplant.

Therefore, one can extrapolate that most of us will die from something

else not PSC or complications from PSC.

That was the message I was propagating when people post that the

average time from diagnosis to transplant or death is 10 years, but

that only applies to those who actually get a transplant or die. The

10 year statistic doesn't apply to the multitude that never gets a

transplant; therefore it isn't an accurate depiction of the entire set

of facts.

Here is the central reason for the clarification, if you're given a

time table saying you only have 10 years to either death or a

transplant it alters your perception dramatically, but if in the same

context if you're presented this fact with the addendum that only

30-40% of patients will ever need a liver transplant or die from PSC

it broadens your perception. Then the disease doesn't seem so dire and

your future isn't so clandestine that you will either die or progress

to the point of a transplant. That is a huge difference!

I can only speak for myself but when I first read about PSC my core

focus was wow 10 years, and my perception of my future was very narrow

and the tunnel vision began. I became obsessed with how much time do

I have left?

Once I learned about the actual % of patients who actually get a

transplant or die from PSC the world opened back up again. I rarely

even think about PSC, because now I view having PSC as a potential

bomb that could go off and time will tell, but the odds are in my

favor that I might never progress to the point of ESLD. If I do

progress to ESLD then I will deal with it, but now I realize that ESLD

isn't so clandestine, and the odds are I will not progress to that point.

As I have quoted from a doctor in England " Most people will die with

PSC not from PSC " .

Therefore, monitor your body concentrate on good nutrition,

exercising, taking your medications, avoid alcohol, and see where PSC

takes you. Most likely you will never progress to ESLD if the

statistics are accurate, and your future with PSC isn't already

written and determined, so enjoy your life like you did prior to your

diagnosis.

Also, I personally believe the 10 years is an outdated statistic

because of URSO, ERCP therapy, and when someone is actually diagnosed

are playing significant roles in treating PSC. Now many people are

diagnosed who are asymptomatic and with these treatments if they

actually do progress to ESLD it will be much longer than 10 years.

A lot of the symptomatic diagnosis usually happens when the disease

has progressed to the point that it is apparent, and the damage is

extensive to the liver and bile ducts that it affects your health. If

you catch it earlier enough you can prolong survivability with URSO,

ERCP therapy, etc.

That is just my personal opinion.

> I've got it....forget all the studies, forget whose doctor is right and

> whose doctor is wrong (what do doctor's know anyway) ;-) (Except Aubrey

> and Von of course!)

>

> How about this - PSC - time to death or transplant - undetermined!

>

> Barb in Texas - Together in the Fight, Whatever it Takes!

> Son Ken (33) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

>

> ._,___

>

[Guest guest]

Barb, I agree 100%. PSC OklahomaBarb Henshaw wrote: I’ve got it……….forget all the studies, forget whose doctor is right and whose doctor is wrong (what do doctor’s know anyway) ;-) (Except Aubrey and Von of course!) How about this - PSC – time to death or transplant – undetermined! Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (33) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas ._,___

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