*The problem with having a chronic illness is…..everything.

*You want to live in denial. At least, I did. I first was told about my possible liver disease in Summer 2005. When I saw my hepatologist the first time, she showed me a full-sized model of a liver. First side was a normal liver; the other liver had lumpy fibroses all over it. I turned the liver back to the normal side and announced, “I don’t like the other side.”

I stayed in denial until February 2008 when I had a massive internal bleed and nearly died from it. Then I got it. It was real.

*With any liver disease (mine is an autoimmune disorder, PSC-Primary Sclerosing Cholangitis), there is muscle wasting which just gets worse over time. That means weakness. That really pisses me off. It also means serious loss of weight. I started out at 140 pounds, in really good shape, when I was diagnosed. Now I’m lucky if I weigh over 112. Hate it. And hate now being able to open little packages or bottles.

*Waiting for transplant is agonizing. I’ve been waitlisted since 2008 – eight years now. I finally went to Cleveland Clinic so I could be multi-listed. My chances are much higher for getting a transplant much sooner. At Cleveland I only have to have a MELD score of 20 (Model Endstage Liver Disease). At Univ. of Colorado I had to have a MELD of 27-32, and oh by the way, that means I would also have cancer – hepatocarcinoma or cholangiocarcinoma, a really deadly form of cancer. Thanks very much, but I think I’ll skip that.

*I now have to take medications on a very strict schedule. When cholestyramine was added because of what feels like terminal itching, I have to take pills and then wait an hour to take the cholestyramine. THEN I have to wait four hours before my next pills, et cetera ad nausea. I take three packets of chole. a day, so that stretches it out to ten to twelve hours to get all my meds down. I’m owned by my alarm on my iPhone. When I first take my pills, I set up the schedule on the alarms. Really and truly sucks big time.

*I glow in the dark now because of getting double-contrast CT scans every six months, and usually when I’m admitted to the hospital. Then there are ERCPs (endoscopic retrograde cholangiopancreatography). I’ve had 24 of them now. But I can’t have stents anymore placed in my constricted bile ducts because they migrate in less than 24 hours, causing narcotic-sized pain, and I’ve sometimes been hospitalized for the pain. But my best endoscopist ever (and I’ve fired two of them) can schedule it and get it done in just five days. He totally rocks, Dr. Gus Attwell.

That’s about it or all I can think of now. Or I’m just back in my usual denial.

 

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