Questions based on 's response to New Member

[Guest guest]

Arne, a question for you. I'm reading everything very closely since

I'm so recent to this experience as well.

I'm wondering about the quote " You're more likely to die with PSC

than from PSC " . How many people do die from PSC? Is there a

percentage? What the average life span?

And if death isn't the big fear, than is it the pain? The suffering?

The experience of transplant?

Like Arlene, I'm trying to formulate a vision of what to expect.

Also, you write, " we're very rough on our caregivers, bless them! "

Why do you write that? What should my husband be expecting?? Is it

the worry? Symptoms that make us unable to function normally? Does

PSC affect our mood? I know there are others on this board who are

caregivers - what is your experience?

Thanks! I'm SO glad for this group!

Ruth

>

> I'm sure you'll hear a lot more shortly, but:

>

> Start with the FAQs at http://www.psc-literature.org/FAQ.htm

> Take a look at the brochure at

http://www.pscpartners.org/PSCBrochure.pdf

> Write down your questions for the next Dr. visit.

>

> PSC is widely variable in patients. Some have had PSC for 30+

years with

> mild (if any) symptoms. Some have one or two episodes and are

symptom free

> for 10s of years. Some have had PSC for less than a year and have

a liver

> transplant.

>

> My favorite quote from one of the leading researchers is " You're

more likely

> to die with PSC than from PSC " .

>

> Hang in there - diagnosis time is pretty rough (and we're very

rough on our

> caregivers, bless them!). Keep on asking questions; someone here

will have

> an answer!

>

>

> Arne

> 57 - UC 1977 - PSC 2000

> Alive and well in Minnesota

> (I also feel fine, mostly)