Yvonne,Cheryl,Evelyn &

[Guest guest]

I'll try to cover all your posts from where Phil (the one with PSC) and I

come from.

,

You asked about working while having PSC. As others have said, it depends

on what stage you are at. Just being diagnosed doesn't always mean that you

are in the beginning stages. My husband Phil was diagnosed in Dec of 1998

after a month of on and off being sick which resulted in the blood tests

that put him in the hospital. He was in the midst of a serious cholangitis

attack. He had an ERCP which landed him in the hospital for 10 days. He

had lost his job the month before he got sick and was on unemployment.

Since he was 57 and had 4 infections within the first 3 months after

diagnosis, he went on disabilty (state) and then applied for ss disability.

There is a 5 month waiting period for the Fed ss disability and by the time

it was approved, they had to back pay him . He decided to do this because

he suffers a lot of fatigue and with the infections, he was having to go to

the doctors a lot and in January was listed with UCLA for transplant. He is

a status 3 which means it will be some time before he gets a transplant but

at least he's listed. He keeps himself busy with volunteer things where he

can control his time and energy. I work full time and provide us both with

insurance.

Cheryl,

Phil was able to receive state disability and then fed ss disability with no

trouble. BUT it does take the support of your doctor.

,

My husband's name is Phil too. My Phil has pretty much the same feelings

that you have in regard to transplant. We did want to get him listed though

so that he could easily move up if needed due to the fact that he was having

recurring infections. Luckily he's only had one that was in March of this

year since April of last year. Phil does suffer from fatigue that increases

as he tries to push himself to do things.

,

I hope your return to work isn't tooooo hard and that you can do it. It

sounds like you have had a real tough time of it and for that reason my Phil

decided to go on disability. I don't know why the emotions aren't expressed

more in this group other than everyone trying to think positive. I'm sure

all of us patients and spouses have times of depression and times of bearly

being able to hang on to our emotions and fears. Today, after hearing about

the loss of Mike to cancer. I am very upset. Particularly since cancer

isn't at this time, factoring into positioning PSC patients on the

transplant list. I feel that anyone should be able to express their fears

and concerns and not always keep things rosy. That is was a SUPPORT group

is all about.

Peg, wife of Phil(57), UC 30 yrs, dx PSC 12/98, listed 2/2000-status 3, live

in So. Calif.