I’m doing my best at being a smart patient. My life will probably depend on it.

I’ve been experiencing more pain around my gallbladder. For years I’ve known, that according to health reports based on my DNA from 23andMe, I am likely to have two major autoimmune disorders.

One is called scleroderma. It’s also known as systemic sclerosis.

The other is called primary biliary cholangitis, or PBC. It is also known as primary biliary cirrosis, though cirrosis only develops in the later stages of the disease.

I’ve been hunting for a doctor, a specialist who can help me, since most doctors have been shockingly nonchalant about these, despite providing the genetic reports from 23andMe and having many symptoms.

I have had these gallbladder attacks for more than a decade now. Every year I have an attack where my white blood cell count skyrockets. It lasts about a week and I just sleep most of the time because I am so exhausted.

A few months back, during the winter, there was a new development. My joints, elbows and knees, were so inflamed and painful that it was hard to walk around. I was constantly out of breath. That joint pain has returned too, unfortunately.

Are they related? Wouldn’t surprise me.

In my search for information, I found a doctor at Swedish in Seattle who specializes in cholangitis and other liver diseases. He has written many studies and given many lectures on it. I found his email address and sent him a plea for help. 

Initially, he replied with a question, if I had ever been diagnosed, which I haven’t, despite the pain and the genetic testing. He stopped communicating after confirming that I don’t have an official diagnosis. I don’t want to harass the man, but I need help. So I have sent him another plea.

While researching him and the specialized liver unit at Swedish, I came across another condition, something I’d never seen mentioned before. It’s called primary sclerosing cholangitis, or PSC. It’s a condition where the bile duct becomes damaged over time. This is what my paternal grandmother had in the 1950s.

She was having pain around her gallbladder and the kids, including my father, convinced her to have it removed. When it was, the doctors discovered a shriveled up, diseased bile duct.

One of the key words that I find curious is sclerosing. This is the same root word as scleroderma and sclerosis.

It’s obvious that there’s much the medical professionals don’t know, which has been disturbing. So I just have to be dogged in my pursuit of answers and solutions. I have to be determined, because so often the doctors are not. I intend on being polite but persistent. My life very well could depend on it.

I picked up a book the other day. It’s titled You: The Smart Patient. One of the authors is TV’s Dr. Oz. I’m not really a fan, but I need help wherever it can be found. I am going through the book, looking for advice on how to deal with doctors.

ajh

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