to imkindly and anyone else that has knowledge of cryptogenic liver disease

[ctc]

Hi, I am new to this forum, but referred to a website that you had made in the past. But I can't get on it anymore, something different comes up when I click on my "favorites" saved site. It was a support group for patients with cirhosis (sp?) Has the address changed? - I have so many questions that I don't know where to begin. 3 1/2 years ago we discovered that my son had an cryptogenic liver disease. at first they thought it was cancer, then they were sure that it was cystic fibrosis now they are saying that it is a strange variation of psc or that it will probably develop into psc in time. he also has overlapping symptoms of pbc. He has cirhosis,(the damage is in the area around his bile ducts) his pancreas is damaged (fibrosis) his spleen is damaged somewhat & he has chrohn's or colitis. three weeks ago he was in the hospital with a hemoglobin count of 6.9, he has had one iron shot and three iron infusions since. His doctor has said in the past that nothing about his disease makes sense or follows a normal pattern. he takes 35 pills a day. his imuran is now up tp 250 mg. They say his body metabolizes it so fast that it needs to be that high. He has portal hypertension, varices in his esophagus and colon. How do we know if his disease is being treated correctly? ctc

[Wools]

First let me thank imkindly for the websites for more info on PSC.  Our son also had PSC diagnosised at age 22.  We watched his health fail daily, weight loss, jaundice, pancreatitis, portalhypertension, cholangitis. We went to one transplant center that was not very aggressive.  We were advised to take him elsewhere where they would be aggressive in getting him a new liver. The wait is so long on the list that we wondered if
he would make it. The average wait is 9 month to 2 years. That is for a status 2B on UNOS list.  Go to the UNOS website to learn about the centers and the wait. We transfered our son to a center in Florida and he had a new liver in weeks. It has been 8 months and he is doing wonderful. He is back to college and work.
We were advised to be aggressive for a liver transplant because of the chance of colon cancer and repeat bouts of cholangitis.  Looking back it was a good decision and hopefully the worst is behind us.  If you have any questions about PSC or the transplant please feel free to ask.

[imkindly]

Hi
We still have the support group. It's a Delphi board. Delphi modified the URL (address) on us a couple of months ago.
Here's our new address:

http://forums.delphiforums.com/liverfailure/messages

If you go there, scroll down the column on the LEFT side of your screen, and click on any (purple) topic that interests you.

(We have topics like "Primary Sclerosing Cholangitis" (PSC)...."AIH - Autoimmune Hepatitis"....etc.)

Clicking on a topic, will make a whole list of messages on that topic appear.
Click on any that interest you.


~~~~~In order to post any messages of your own on the board, you'll need to create a nickname and password. (It's free.)


PSC and PBC resemble each other in alot of ways. They both belong  to a group of liver diseases called the "cholangiopathies". (diseases in which the cells that line the bile ducts, cholangiocytes, are affected.)

Here's some general information about PSC that may help:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Below is part of an article taken from
http://www.pathoplus.com/cholangi.htm
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PRIMARY SCLEROSING CHOLANGITIS (PSC)

Both Primary Biliary Cirrhosis (PBC) and Primary Sclerosing Cholangitis (PSC) are similar in that they have an autoimmune origin, but they are different diseases, involving different etiologies and inflammatory pathways.

Interestingly enough a major difference lies in the populations most at risk for each of these two autoimmune cholangitis