Auto-Immune Hepatitis/Cirrhosis/Liver failure end stage
Hi, I am a 54 year old woman who discovered 3.5 years ago that I had AIH/Cirrhosis/liver failure. I am a Registered Nurse, and had just recovered from removal of my right kidney due to cancer in 2006. At that time I had terrible heartburn and the GP had ordered blood tests. The tests came back with elevated liver enzymes so I was immediately booked for an ultrasound 3 days later. That is when they found the tumor. Had my surgery and it took about 6 months before I could even return to work. So life went on and I went back to work feeling very good. About a year and a bit later I started feeling absolutely lousy but continued to work. I was super shaky and was exhausted most of the time. My stomach would swell till I looked 9 months pregnant. Not thinking anything was wrong I kept working until one day one of my co-workers said I should go and see the doctor because my eyes were yellow. I went and looked in the mirror and couldn't see any yellow, but being as I felt lousy I didn't think it would hurt to see the doctor. Tests were done and there it was. Super elevated liver enzymes, INR, and all tests to do with anything liver related. I started turning yellow from head to toe, itchy, swollen stomach, bruising, bleeding easily, my legs were so swollen my ankles touched the floor. Unable to walk very far, and slept and slept. Had a liver biopsy and the results said I had Cirrhosis with severe Liver Failure. I almost fainted when the doctor told me, and had to lay down a bit on her examining table. I had not really ever been a drinker, only when I was young and foolish, and all tests came back for negative Hep A, B, C. What was happening???? One lab tech's report said I was probably a binge drinker and had fallen off the wagon. BS. My doctor knows me pretty well as I work with her at times and she became very upset with their assumptions. Needless to say I went to a gastroenterologist and he also accused me of drinking, which of course I totally denied as this was not true at all. It's been quite the fight I'll tell you, but in the end it was realized I was truthful, as no fatty liver was on the biopsy, etc. etc. I am now going to Vancouver every 6 months to the Transplant Team to be assessed, and am holding my own, with of course a bunch of drugs. One day I know my liver will give up the ghost and hopefully I can get a transplant. I can't work anymore and am on LTD and disability. My quality of life is terrible and hard on my spouse and children. I just thank God when I wake up every day and cope with what I can. The rest is up to my doctors and God.
Thank you for sharing.