I have autoimmune hepatitis. What is it and how did I get it? Nobody knows the cause. It is usually familial, but I have no history of any autoimmune diseases in my family. In layman's terms, and that's all I know, my immune system has gone haywire and decided to attack my body. And the liver is a nice juicy spot for it to attack. It is not contagious.
I had symptoms 1 year ago while we were in Key West for the winter. I was tired, had achy joints, strange colored excretions (no further details here) and no appetite. My son and his girlfriend (now fiancee) came to visit and they pressured me to go to the doctor. Could it be Lyme Disease - a pretty common illness up North caused by the bite of a deer tick, but not heard of in Florida? The Dr at the local clinic put me on doxycycline to treat it while my blood went out for tests. It was negative for Lyme, but showed some type of hepatitis. I waited to go home for further tests.
By the time I got home and saw my family doctor and then was referred to a GI Dr, my liver enzymes, a measure of hepatitis, were off the charts. One of the enzymes should have been in the range of 15-40. Mine was over 1300. The other enzyme level was equally as bad. I was connected with one of the top Hepatologists (liver specialist) in Philadelphia. It was the quickest that I ever had gotten an appointment. Drs were calling me on the weekend. Something bad was going on. I was diagnosed with autoimmune hepatitis (hepatitis being an enlarged liver), confirmed by a liver biopsy, and was told that if I had waited much longer I would have needed a liver transplant.
Treatment was with drugs. Prednisone to reduce the inflammation and Immuran, an immune suppressant. Prognosis is great. I just have to get my liver back to normal or as close to normal as it ever is going to be. That Prednisone is a bad drug. It is a steroid. Ever hear of moon face? Yup that's from Prednisone. It also causes an insatiable appetite that leads to the dreaded weight gain. I know people are talking about those 50 lbs that I have gained. It depresses me.
I haven't shared my illness with many people. So why have I decided to talk about it now? I met a woman this past weekend who also has autoimmune hepatitis. The sky brightened. I didn't know anyone else who had it and it was so comforting to speak with someone else who has been through the same thing and is now stable, healthy, and has lost the gained weight.
So I'm sharing to open up a conversation with anyone else out there who has it. Also, if I had continued to "tough out" my symptoms I could have been much sicker. So I want to tell you something that you know. Listen to your body and if it is trying to tell you something, go see the doctor.
So with all of this, I want to wish everyone a happy and healthy New Year, with an emphasis on healthy.