Another Newbie & Another Barbara

April 15, 2008

I joined the group about a month ago and have been reading and

learning. My husband, , was dx 1/07 with PSC. At that time he

also had pancreatic surgery (Peusteau) sp???. They didn't do a

Whipple because of a future tx and he continues to have chronic

acute Pancreatitis. He also has Osteoporosis, diabetes (we cannot

get it under control, he had his gall bladder out 7/06 after a

horrible pancreatitis experience (9 days in hosp). I could go on but

won't.

's labs are good although the MRCP told a completely different

story. The docs say that he is one of those with PSC who is sicker

than the labs say he is. The image rpt said " end-stage liver

disease " from PSC. He has been hospitalized 3x in '08 with

encephalopathy and that continues to get worse, along with itching

and extreme exhaustion. He continues to work (he teaches 4th grade)

and I have finally agreed to let and his principal determine

when and if he goes on disability. With his level of HE and

exhaustion he agreed not to drive, but he is determined to work

through next school year (he needs to teach that long to be able to

retire).

My question is: WHAT DOES ALL OF THIS MEAN? What does end-stage

liver failure mean opposed to just liver failure as it has been on

the other reports? No one here seems to understand that I need to

know more than the minimal information they give me-and I do ask

questions, lots of them. It's like they are just trying to make me

feel good. I'm thinking that if this progresses in the next year

like it has this past year a tx won't be needed.

doesn't ask questions, he just comes along to be poked and

prodded. He is a wonderful, kind and loving man with a family that

adores him.

Barbara (wife of 60) PSC 1/07, Osteo 3/07, Chr Pancr 06

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