Tuesday, December 28, 2010

Autoimmune Hepatitis

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.


  1. Thank youfor sharing. I will pray for your recovery. It is good to share and be open about your illness as it can only help your state of mind and healing. Thinking good thoughts of you!

  2. Hi Cheryl, I got my AIH diagnosis just over a year ago too, and it's been a long hard road of learning since then so I can really appeciate what you've been going through. It's a horrible disease but at least we're still here eh? I've not been able to return to work as yet (hoping to do so before much longer) but was thinking of doing some needlework to pass the time, fatigue permitting. I'd love to have a go at quilting but am a complete novice - any tips/websites you could suggest please?
    Thanks, Sue (UK)

  3. Oh, forgot to say, for help in understanding AIH please do visit the British Liver Trust website where there are links to a fantastic forum of fellow sufferers with boundless knowledge of this disease.

  4. Hi Cheryl, I'm so sorry to hear about your illness. We just never know when something is going to jump out and get us. My doctor made me go for every hep. shot available because I have a fatty liver. They assure me that I will never get hep. now. Who knows? Anyway, hang in there. Our thoughts and prayers are with you. Lynn

  5. Hi Cheryl! I'm so glad you shared the details of your odyssey here. You are such an amazing person and someone I genuinely admire. The first thing I must say is that I'm so sure that people are NOT talking about "that 50 lbs. I gained". Your weight is so irrelevant and not who you are, which is an incredible woman, so stop worrying about that.
    You know that I had that colon resection last December, but you probably don't know that while I was in the hospital recovering, I lost the hearing in my left ear, probably vascular they say, from a small clot perhaps. It has not returned and it's something I have to live with. My point is that life throws things our way for reasons unknown.
    I think this was given to you so you take steroids and have to stay up all night to work on those amazing quilts you dream up and to write more books!
    I'm so happy to hear that your prognosis is so good and you will get back to your healthy self.
    I just found out that a very good friend of mine was also diagnosed with AH and Autoimmune Anemia and was hospitalized in October. She was yellow! She was also on steroids and is improving - if you hadn't posted this, I wouldn't have connected it! She is also a quilter!
    It's a really good thing that you posted this and I'm sure you'll hear from others.
    I missed you at Guild last month and hope you had a wonderful Holiday with your family.

  6. I haven't checked my blogs for a couple weeks. I'm glad you are getting better, you are such an inspiration. See 'ya at guild!
    Debbi F


Thanks for stopping by. I'd love to hear from you.