(no subject)

[Guest guest]

Hi everyone, I have been reading your posts for a few days now. I have never

met anyone with autoimmune hepatitis before. Here is my kind of long story.

It all started in late September of 1996. I started becoming really fatigued

and bloated. Then I started hullucinating at work. I thought I was going

crazy. Then my co-workers noticed that the whites of my eyes were yellow.

Well,I nor anyone else knew anything about liver disease but I decided to see

my quite incompetent primary care physician. He did blood tests for

hepatities a,b,and c. All were negative. Then he asked me if I was a

drinker. I said no. I continued to get sicker and my stomache got larger.

I'm only 4'11 and I looked abot 6 months pregnant. I turned bright yellow

and the doctor had the nerve to say I could be a pumpkin for halloween. I

should have known I was in trouble. Finally after awhile he sent me to an

equally incompetents gasterentologist. He ordered a biopsy and blood tests

and then proceeded to to nothing. Finally when I gained about 20 lbs in

fluid and turned almost brown my mother insisted I be hospitalized. By then

I could no longer work and I could barely get offf the couch. (Only about 4

weeks had gone by.) In the local hospital I continued to get worse and my

doctors still didn't know what to do. When my family and I asked about my

going to Boston for a second opinion my arrogant gasterentologist said there

was nothing they could do in Boston to help me that he couldn't do here in

Lowell. Then both he and my primary care doc went away for the weekend and I

was left in the care of another doctor I had never seen before. We were able

to talk this doc into having me sent to a hospital in Boston. The only thing

was no hospital wanted to take me on the weekend and I knew that I had to get

out of this hospital before my docs came back on Monday. Finally, a

transplant surgeon at the Deaconess said I could be transferred there. Not a

moment too soon. When I got there I was found to be in liver failure. I

didn't have long to live without a transplant. Luckily, a liver became

available after about 6 days and these wonderful doctors saved my life. I

did very well with the exception of one episode of acute rejection which was

easily controlled with meds. I was out of the hospital in time for

Thanksgiving. Then in March of 1998 it was found thru elevated liver tests

and a biopsy that I had fibrosis. The diagnoses was autoimmune hepatitis.

The doctors thionk that was what caused the acute liver failure in the first

place and now the disease has returned. But I don't want all of you who are

waiting for a transplant to get discouraged by this. This usually does not

happen from what I am told (it usually does not recur). Well I am doing fine

now. Higher doses of prednisone quickly brought the disease back under

control. My blood tests have been normal for a year now though I have not

had a biopsy since March of 1998. Only a bit of fatigue now.

I am 37 and have a husband and three children by the way. And that is my

story. It feels so good to get it off my chest. Thanks for listening(or

should I say reading).

Charlene