I started feeling more fatigued and my appetite had been waning.
I saw the doctor and she figured I had a bit of a sinus infection, sent me home with some antibiotics and said she’d call if any blood work came back funky. I got a call a couple days later to come in – the lab had screwed up my liver tests. The day I was going to go in, I kept rubbing my eyes – because they were YELLOW!
I got into the Dr’s office and I had the nurse practitioners in there, the aides who took the blood and finally both docs! All convinced that truly, my body had to have been jaundiced when the labs were taken. I assured them all that no – I turned yellow that morning. Finally, the crowd removed themselves and I was left with the doctor.
The doctor knew immediately what was going on. I didn’t find out until much later how fortunate that was.
He knew immediately that I had Autoimmune Hepatitis. He had seen it before and concluded that the blood work confirmed it– he was certain. What he couldn’t believe is that my levels were so high before I went jaundiced – I was in the 6000s. He did more blood work to be certain and told me what to expect. He took me off most of my drugs, it would be easier on my liver.
He explained what it was, that it was the luck of the draw that I got it – or bad luck of the draw, and that it was a lifelong thing.
Other than that – he said a GI would be doing a biopsy to see how damaged my liver was and from there – we’d just continue to check on me.
My liver biopsy showed the damage done was minimal and that the condition of my liver would improve – and it has. Eventually I was put on 40mg prednisone – and that made me nuts. My body apparently could handle the hepatitis but not the steroid. I was up 4 hours, crashed for 4 hours etc. They lowered it to 20mg and it was much more manageable.
This was all before the internet – once I could get out of bed for longer than a few minutes – which was at least 6 weeks after diagnosis, I went to the library and did as much research as I could. I didn’t find out much that was good – you get it, you’re on steroids and eventually, your liver becomes cirrhotic and you die. Literally – that’s all I could really find out.
My fiancé went to the doc with me and asked if I would survive until our wedding in December or should we get married immediately. He assured us I’d be around for a while, so, it was okay to wait.
That summer, I recuperated, began swimming to gain some muscle strength and energy back and we got married in Dec on New Year’s Eve, just as we planned. Eventually I had to find a new GI. We were fortunate that we were just outside of Philadelphia and there were some good hospitals there. I found a terrific GI who showed me a clipping from a trade magazine – They had begun using Imuran – an immune system suppressant that they had used on transplant patients with good results – the clipping was 6 months old. We began to wean off the prednisone and on the Imuran right away.
From there – I was good for another year or two when the fatigue began to set in. Eventually we moved back home (Maryland) and I began working part time for few more years.
Eventually, the fatigue began to become severe and I had several months where I was sick – in and out of the emergency room. I applied for disability in August 2001 – I was unable to work the 2 days a week I was working at the time. We moved in with my parents because my mom’s health was failing and it was easier to keep one house in order than two and that was in August of 2002. I was approved for disability in Jan 2003. In July 2005 I found The Spoon Theory and “The but you don’t look sick” message boards and Christine Miserandino.
I became a member, moderator and admin on her message boards. When they crashed, I began helping her with other social media projects and becoming what I consider to be an advocate for the chronically ill community.
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