Re: Just starting out! Looking for advice.

[Guest guest]

Welcome to the group , glad you found us and sorry about your

husbands DX.

My wife Tina(PSC-1998 UC-1998) and I live in Indiana also. She goes

to IU and sees DR. Kwo of the IU Liver Transplant unit. I must say he

is a very busy man, but always treats my wife will. Who did your

husband see there??

Dr. Kwo tells my wife to live her life and do the things she wants to

do. She has had URQ pain the last 6 months and her GI wanted to take

her gallbladder out, but Dr. Kwo said let's do some more tests and

found out that she didn't need it out. He runs a bunch of tests but I

am ok with that, at least he is looking at it from many different

angles.

Hope this helps

Jeff

>

> Let me say that reading through the posts on her shows me hope.

> My husband was just diagnosed with PSC (Stage 3) in January 08

after

> months of tests. The ERCP showed that he had 90% blockage. He was

told

> that we would need to get on a transplant list soon and that he was

> looking at 3-5 yrs to need a transplant. They had to stretch the

bile

> duct just to do the ERCP.

> While he seems to be ok with the diagnosis, his family (including

> myself) have had a very hard time accepting the news. I have tried

to

> do lots of research when I get a chance. This has left me with

many

> questions.

> After having the diagnosis we were sent to a liver specialist at IU

Med

> Ctr in Indianapolis, IN. The specialist blew off the disease and

never

> mentioned the transplant list. He told us that maybe in 5-10 yrs

he

> may have a problem that will need to be accessed. He handed him a

> script for URSO (500MG, 3 times a day). It goes with saying that I

> feel we need to see another doctor, but I don't even know where to

> start to find a doctor for a second opinion or what questions to

ask

> another doctor. Any advice would be great.

> We are going to ville in May to learn from others as well.

>