Re: Vicky - liver disease

[Guest guest]

Vicky,

sorry to just now be responding to your post. I've been in the hospital

once again and just got home yesterday evening. The liver disease that I

have is autoimmune hepatitis (AIH). People (even docs and nurses) get it

confused with hepatitis C. The term 'hepatitis' simply means inflamation of

the liver. AIH is caused by your immune system attacking your liver as if it

were a foreign object. Not good, as you can imagine! AIH is not caused by

alcohol, drugs, risky behavior (sex, tattoos, blood transfusions, IV drug

use, etc.), a virus, or bacteria. It is not contagious in any way. It is

pretty rare. Depending on where you read the stats, the odds of having AIH

are around 1 in 100,000 to 1 in 150,000. The treatment for AIH is

prednisone (steriods) and/or imuran (an immunosuppressant). The goal is to

reduce the inflamation in the liver and suppress the immune system enough to

at least slow the attack on and damage to the liver. The main symptoms of

AIH are debilitating fatigue and elevated liver enzymes (AST or SGOT and ALT

or SGPT - the name used for the liver enzymes depends on the lab and

doctor - AST is the same thing as SGOT and ALT is the same thing as SGPT).

However, it is entirely possible to have liver disease and have normal liver

enzymes on occasion (even without treatment). In my rheumatologist's words,

my liver enzymes were 'all over the place' in the months preceding the liver

biopsy which provided a conclusive diagnosis of AIH. They ranged anywhere

from normal or very near normal a time or two to the 700 range, which is

more than 20 times normal. I was amazed at what all the liver does and what

it controls. I knew nothing about liver disease and had never even heard of

AIH until I got the results of the liver biopsy and found out that I have

it. My GI never actually called it AIH, he simply called it autoimmune

liver disease. That is pretty common because so many people hear the term

'hepatitis' and they automatically think hepatitis C and that you are

contagious. It has amazed me the number of people even in the medical field

that do not understand the meaning of the term 'autoimmune'. I have been

asked many times how I 'caught' AIH. Excuse me - AUTOIMMUNE means my immune

system is attacking my body! You don't 'catch' autoimmune diseases unless

you consider that I obviously 'caught' the genetic tendency toward having

autoimmune diseases from one of my parents! Unfortunately, my daughter also

'caught' that genetic tendency as well. Thankfully, she does not have AIH

but at 21 she already has 3 autoimmune diseases - rheumatoid arthritis,

ankylosing spondylitis, and the antiphospholipid syndrome (an autoimmune

clotting disorder that puts you at a much higher risk for blood clots,

strokes, heart disease, and miscarriage - she is currently on aspirin daily

and will be for life; she'll be monitored closely when she decides to begin

trying to get pregnant and may have to be on heparin to carry a pregnancy to

term - however, if the antiphospholipid syndrome had not been discovered and

went untreated - she would have a 70% chance of miscarriage!). Anyway, that

was probably more info than you wanted.

AIH, like most autoimmune diseases, is much more common in women than in

men. However, AIH is only one of many possible liver diseases. If your

partner has had his liver enzymes checked on several occasions and they were

normal, I would think liver disease would be unlikely. However, the only

way to know for sure would be a liver biopsy. The think about liver disease

is that there can be a lot of damage in the liver with normal liver enzymes

at times. Elevated liver enzymes simply means that the liver cells are

dying at a rate faster than normal at the time the blood work is done. So,

if the labs are done on a 'good' day, the liver enzymes might be normal just

because on that day, they are not dying at a rate faster than normal. I'm

not an expert by any means. There are two pretty good sites on liver

disease that you might want to check out. I'm including links

http://www.liverdisease.com/

http://cpmcnet.columbia.edu/dept/gi/disliv.html

Take care,

W