Here's an update on how I am doing with PBC. It has been 2 years since I was diagnosed with PBC. Last year, I had no scarring and my inflammation was controlled through diet and Ursodiol. I was at stage 1, which is good. My liver specialist has been monitoring my blood work every 3 months and I have an MRI every 6 months.
A few months ago, I had my first episode of hepatic encephalopathy. I had some stress at work, but it wasn't awful. I had been drinking a beer or two at night after work, and I had a reasonable amount of meat and bread in my diet along with an occasional processed food, but nothing serious. My blood work had been so good for so long, I didn't think much of it. I'm still not convinced that it was enough to bring this on. I think it was PBC flaring up.
I went to the ER because I could not think. I don't know how else to describe it. I couldn't focus enough to pay attention to people talking to me. I could not understand anyone. I was having trouble forming sentences, and for some reason I thought someone might be out to get me, which is not normal for me at all. It got worse and I started acting bizzare, like closing my eyes when someone asked me a question and saying random things. I was making crazy jokes in the hospital when everyone else was very serious. They tested me for alcohol and all kinds of drugs, but the tests came back clean. The blood work showed that my ammonia levels were elevated, so they decided to keep me overnight. When the liver stops working, it can't filter ammonia out of the blood. My blood became toxic and it affected my brain. I completely lost touch with reality. It was terrifying. I spent over a week in the hospital, and it took a couple months after that for me to feel somewhat normal again.
My AST was 63 (normal is under 32) and my ALT was 143 (normal is under 33). Bilirubin was a little high at 1.5 (normal is under 1.2). Alkaline Phos was normal. I don't know what my ammonia level was; I did not get a copy of that one and I don't think it really matters now.
The doctors thought my behavior was more bizarre than could be explained by hepatic encephalopathy, so they sent me to a center for mental health. I was diagnosed with depression (which I have had all my life) with psychosis. I had never heard of psychosis before, so I thought they were saying that I was a psychopath! But that's a completely different thing. Evidently psychosis is not a disease, its an episode of acting bizarre. For some people it only happens once, for others it happens throughout their lifetime. So now I take an antidepressant and an antipsychotic. Its embarrassing and strange to me. My psychiatrist even said that he is surprised that I have this diagnosis because I seem to be a high-functioning person and one of his best patients. I asked if the antipsychotic was really necessary because it was probably hepatic encephalopathy. He said it was best because if I have another episode, it could be much worse without medication.
I met with my liver specialist this week and she said I have progressed to stage 4 cirrhosis. End stage liver disease. In two weeks she will put a scope down my throat to check for varices. There's not much else that can be done. I will continue with ursodiol, monitor my blood levels, and do an MRI every six months. I have also renewed my efforts to have a squeaky clean diet. I'm not addicted to alcohol, so its no problem for me to switch to sparkling water with lemon or fruit.
I asked if I will need a liver transplant, and the doctor said she didn't know, but if I do need one, she doesn't want me to worry because they work very well and we will cross that bridge if we come to it. She said if I do need a transplant it will be a decade or two from now.
So that's my update. I'll be 38 in November. When I am 58 (my mom's age), there is a good chance that I will need a liver transplant. Until then, I just have to be on the lookout for another episode of hepatic encephalopathy.
I'm a 50 year old male recently diagnosed with stage 3 PBC, my mother has/had it (stage 3 PBC) since 1987 and is still alive today.
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