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Hi, I am and I live in Hershey, PA. I am the single mom of four

great boys. They range in age from 18 to 26. Only the youngest lives

at home. In November 07 I was diagnosed with PBC after having a liver

biopsy. I had my first ERCP the day after Christmas. A stint was

placed in the bile ducts and it was also determined that I did not

have PBS but had PSC. In June of 08 I will go in to have my third

ERCP and stint placement.

After the second placement the doctor was very concerned about how

quickly this disease was progressing. Worse yet, when I received the

Biopsy report from the ERCP my doctor made the comment that he would

see me in June to " replace " the stint. All the other times he had

said he would see me to " remove " the stint.

This was a little scary for me and really ticked me off since I truly

believed that the Bile Duct Disease could not possibly be that bad.

However, it is. My hepatologist has told me that I am looking at a

total of four stints then I will have to go on the transplant list.

This whole thing is kinda freaking me out. I also have hard little

bumps under my skin especially in the arms and fingers and they hurt

if you put any pressure on them. That I was told is from the

Autoimmune Disease. They have also informed me that if I run a

temperature of 101 degrees I must head to the ER right away. I was

not happy with this fact since a normal wait at the Hershey Med Center

is 4-6 hours unless it is cardiac. All that just to get a dose of

antibiotics.

I must admit though that I have a great team of doctors here. They

all work together so well. They have worked together to make sure

that every possible test was run so they would have baseline tests to

use as the PSC progresses. I have to have labs run every month right

now and everyone of my doctors get copies so they all know what is

going on.

I was also told that this is a hereditary disease. My mom died at

the age of 26 from a liver disease. We don't know what kind since the

hospital where she died burned down some time ago. Plus being adopted

does not help much when it comes to a medical history. However, the

doctors all believe that my mom more than likely had the same disease.

However, back then they really did not know much or anything about PSC.

I guess that what I am looking for here is if there is anything else

that I should be looking for or at. I am on the URSO for the itching

but is there something else maybe vitamin wise that I should be on?

Or just any insight into PSC that I can not find in the research that

I have been doing.

Thank you in advance for all your advice.

in Hershey PA