It’s called primary biliary cholangitis, but some older doctors and websites call it primary biliary cirrhosis. I have it. They say I am within the final stage of it.
When I was first diagnosed, the doctors didn’t tell me. Although I am a complete teetotaler, instead, they would ask me—every time I came in, wondering why I was always feeling sick, weak, etc.—how much I drank. I told them, of course, that I didn’t, but sometimes, they would send various medical personnel to ask me again.
One time, they sent three student doctors in to ask me. Again, I said I didn’t drink. The little snot agates burst into boisterous laughter and left, laughing all the way down the hall.
Now, I am a very patient woman, but after about three years of all that, I finally became angry and demanded that my regular doctor tell me why they kept asking. He finally answered that I had PBC and (at that time), I had 6 months to 20 years from diagnosis to live. That was in 1991—obviously, 27 years ago, with the year of diagnosis actually being around 1988. Nice of them to keep it from me for three years, don’t ya’ think? So I have lived 10 years past my death sentence.
Lately things have gotten worse. I live much of my time in bed. I can’t eat most fruit—anything with seeds—except for bananas and some avocadoes.
While the number of those with PBC is growing by the proverbial “leaps and bounds,” it is still rare. If one has PBC, it is important to get a sure diagnosis, so that they can start being diligent about taking care of themselves. Regardless, doctors—even specialists (and there are very few)—disagree on both treatment and self-care.
Most say PBC passes through families; a few say it does not. Looking back at Father, I believe he had it, but he lived a long life, dying at the age of 87 because of being hit by a tractor-trailer. But I think some of his siblings had it; it just was not diagnosed in their days.
One thing to look for, that is common among those with PBC, is that their skin darkens. They can look like they have a great tan, but some parts of their bodies can be very dark. This is documented in papers about PBC.
Another thing that seems (to me) to be common among those with PBC, is little pockets of what looks like fat under the skin around the eyes. These are often documented.
Other than these, the one with PBC initially just feels a bit sick, weak, and certain foods will bother them—a general unwellness and exhaustion. I spent nearly a year in bed, until I figured out that fruit was keeping me sick. Later, I spent much of a few months in bed until I figured out that such “vegetables” as tomatoes, squash, cucumbers, zucchini, etc. were making me sick.
Did any of my doctors tell me this could happen? NO! Amazing. They have, to this moment, told me basically nothing, even though I sought out doctors, and changed doctors, hoping for better care.
Unexplained, nearly constant itching will also occur.
When I was first diagnosed, they offered me prescription medication. I asked, “Will this help?” They replied that they weren’t sure, but it may. It was extremely expensive. I chose not to take it. Remember, I am still living 30 years (instead of just a few years) later.
If you have questions, I certainly will be happy to answer, but your best information will come through your own research. Also, what I’ve done is (somewhat) working for me; that is no guarantee that it will work for anyone else.
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