Re:Some european remarks to the how long have we got discussion

[Guest guest]

Imagine me when I was diagnosed about 20 years ago--No internet, no print matter on PSC, no body who had heard of the disease. My GI doc at the time told me I could be dead within two years. He mentioned that transplants were being performed, but not many.At least it made me get serious about providing for my family's future, to the extent I could.It would have been better to hear about median time, .etc.Best wishes,Don BE AN ORGAN/BLOOD DONOR

[Guest guest]

>

> Imagine me when I was diagnosed about 20 years ago--No internet,

no print matter on PSC, no body who had heard of the disease. My GI

doc at the time told me I could be dead within two years. He

mentioned that transplants were being performed, but not many.

> At least it made me get serious about providing for my family's

future, to the extent I could.

> It would have been better to hear about median time, .etc.

> Best wishes,

> Don

>

>

> BE AN ORGAN/BLOOD DONOR

Thanks for the post and encouragement.

However, it seems like most doctors may agree and that poses a

serious problem. Seems like PSC patients " get no respect " .

The main concern for PSC patients may be quality if life. My wife,

Jan, was first diagnosed with small duct PSC in 1999 (we don't know

how long she had it before dx).

Jan's quality of life, due to horrible 24/7 itching, is extremely

low.

During the last few years various doctors have refused to take her

disease seriously and blamed her symptom's on something else. Some

refused to see her. She had a misdiagnoses at Stanford about three

years ago that set the process of tx back by years. Biopsies on her

liver show no cirrhosis, because her PSC only affects her bile

ducts.

We finally had a ERCP confirmation at UCSC two months ago that

showed that all of her bile ducts were strictured.

She may now be eligible for a tx listing, however her MELD score

will be very low and it could be years before a liver is available.

When we attended an interview for possible listing, it seemed like

PSC was not something they dealt with often. My wife signed a

contract not to use alcohol the rest of her life. The most I've seen

her drink in 40 years is a glass of wine, but I guess they figure

most people are sick because of alcohol abuse.

We need to somehow let the medical profession know more about PSC

and somehow let the MELD scores reflect quality of life.

>