Tricia

[Guest guest]

Hi Tricia,

Your description of what you're going through sounds very familiar. I'm

sure many of us in this group have faced similar reactions. PSC is a

chronic disease with few outward signs that other people can notice.

Since most people assume that liver disease is due to alcohol abuse, we

can become castigated by those who have prejudicial views on this

matter. In fact, this disease is thought to be autoimmune in nature

although it has not been proven 100%. By autoimmune, we mean that our

body finds something about our own liver cells to be foreign and starts

to attack and destroy the cells of the liver beginning with the bile

ducts. This causes back up of bile in the liver which damages the

hepatocytes, the active cells of the liver that make proteins, detoxify

drugs and waste products, and produce and store glycogen (an energy

source we need to function normally). Eventually the bile backs up into

other areas of our body causing itchiness, yellow eyes and irritability.

All of us with PSC develope ways of coping and getting through each day.

Being part of a support group, such as this one, specific to peoeple

with the disease and their loved ones can make the ordeal a bit easier

to deal with. Keep asking questions as they come to your mind knowing

that we wiil be here to answer them or suggest places to go or other

people to ask.

The two most important things are to find a good doctor with knowledge

of this disease who is open to questions and willing to spend time

discussing your concerns and to find someone amoung your friends, family

or a therapist that you can talk to on a regular basis about your

frustrations and feelings. I would suggest a therapist, if you can

afford one, as it is better to unload on someone other than family when

you have a chronic disease. It sounds as if your husband could use

similar support, if he's willing to go. Transplant centres often offer

these services, usually a Social worker who specializes in dealing with

families of patients with PSC and other chronic diseases.

Best of luck.

Aubrey Goldstein, MD

Liver tx, May/98