New poll for

[Guest guest]

Enter your vote today! A new poll has been created for the

group:

Are you up for participating in the 2007 Virtual Walk?

*Virtual Walk is where we get signatures on T-shirts while getting donations

(they can be as small as $1)*

o Yes

o No

o Possibly, I would like to learn more.

To vote, please visit the following web page:

http://groups.yahoo.com/group//surveys?id=2406493

Note: Please do not reply to this message. Poll votes are

not collected via email. To vote, you must go to the Yahoo! Groups

web site listed above.

Thanks!

[Guest guest]

I haven't looked at the poll other than in the announcement here, but

you can need another liver without a recurrence of PSC. In fact, rPSC

is very hard to diagnose because of all the other complications that

go with transplants. I have been told that I'll need a second liver

transplant sooner than later because of a blood clot in my portal

vein and because of strictures that formed when they sewed my three

bile ducts to my intestine during the roux en y. How much sooner has

yet to be decided because I'm pretty healthy despite these

complications. Not sure how you'd structure the poll, but I wanted to

underscore the fact that not all retransplants are for recurrences.

Thanks,

Deb in VA

>

>

> Enter your vote today! A new poll has been created for the

> group:

>

> If you have received a transplant and do NOT have recurrence:

> How long has it been since transplant?

>

[Guest guest]

-----Original

Message----- PSC progression varies among individuals.

If you have received a transplant: How

long was it between your diagnosis and transplant?

If you have not received a transplant: How long has it been since your diagnosis?

Am I missing something here? What if everyone answered 10 years? Would that tell you anything? I think the questions need to be in

separate polls. Is there some way

for us to find out who is polling?

Barb in Texas

[Guest guest]

-----Original

Message-----

If you have received a transplant and do NOT have recurrence: How long has it been since

transplant?

If you received a tx but DO have recurrence: How long was the interval?

If you received more than one transplant: How long have you lived with the last one

(and before recurrence?)

Again, I’m

confused (maybe it’s just me!)

But, I don’t understand how a bunch of numbers can mean anything. Without knowing which question someone

is answering, the numbers can’t mean a thing.

For example what does

5,6,22,3,9,1,15,4,7,8, mean to you? Am I missing something here?

[Guest guest]

I agree with Barb - with regards to there being two questions.

Additionally, what is the date of diagnosis? In my wife's case, her GI

first identified high liver enzyme levels in June of 2003. She had a

biopsy in October that revealed cirrhosis, and another biopsy in

January of 2004 where it was actually determined to be PSC. Lori

underwent her transplant on 2.3.05. So, is that 13 months, 16 months,

or 20 months? Third, the choices at the low end are selective enough.

I would think, that from a mathematical statistics viewpoint, there is

a big difference between 18 months and 5 years.

Naperville, IL

[Guest guest]

On how long after dx before tx; and how long after tx

Sorry for the confusion.

Wasn't looking for science here. Not even good statistics or anything

comprehensive. Just reassurance.

I was picking up vibes from some of the newer members of fear that

the diagnosis was a death sentence, that transplant would be sooner

rather than later, and recurrence was inevitable.

I was only hoping for a way to graphically show that there are people

on this list who have lived many years with PSC without ever needing

a transplant.

And that there are also people who have lived many years after

transplant.

The various twists and turns and complications and other issues

seemed off target. Just pure survival.

Pam

(mom to Quantell, 16, dx 1996, tx 2001, dx recurrence with AIH

overlap 2006)