Hello

[Guest guest]

Hi Lydia,

Welcome to our group. Sorry you have to be here. You

feelings are what everyone feels when first being

diagnosed with PSC. Knowing why they suspected the

PSC is helpful because if it was just through a

routine blood test that probably means you are in the

first stages of it and may remain asymtomatic for a

long time. PSC progresses very slowly. It takes

awhile to understand this disease and be able to

accept it and realize that you can't put your life on

hold but must live it to the fullest. We have people

in the group in all stages from diagnosis without

symptoms all the way through transplant and after. We

have several people who have just gone through

transplants and are on there way to recovery and

continuing with their lives.

My husband is listed but right now is stable and able

to travel and do all sorts of things. He gets

periodic infections but the last on was over a year

ago. Some people don't ever get infections.

I hate to see people so young with this disease but we

even have children in this group (well their parents

are the ones that post). You will receive a lot of

information so that you are prepared and a whole lot

of love, support and understanding. We have a doctor

who had a successful transplant several years ago and

several nurses. Hope we will be able to dispell some

of your fear and help you to cope with what lays

ahead. Each person is different so don't think that

if one person is having a lot of problems you

necessarily will. Some of us have had to even educate

our doctors but we share information and most doctors

are receptive to any suggestions we have.

Take a deep breath and tell us a little more about

yourself so we can get to know you, if you'd like of

course.

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Peg,wife of Phil(58), UC 30 yrs, dx PSC 12/98, Listed UCLA 3/2000,status

3,living in LA, CA suburbs, 2 kids, 5 grandchildren, 2 cats

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