An Update from Barry

I haven’t written for this site in months. Some kind of whirligig of hard and soft tissue has grown onto a joint on my pinky finger. It has affected my entire left hand, making it impossible to use the keyboard in any meaningful way. I have seen a hand surgeon, but nobody wants to operate on me for anything other than an emergency since my liver transplant. It’s the anti-rejection drugs I take. They work by wiping out white blood cells, which  puts me at risk for infection, and lethal sepsis. I’ve been using one finger on my right hand on iPhone for any typing. Fortunately, I have predictive text, so I type more words than letters. I don’t have it on the computer where I really need it. Mainly, the bad left hand cramps during guitar practice. After playing for over 50 years, the noise coming out of the amplifier sounds like that of a beginner not a blues veteran, but hey, I am fortunate to be alive, have a family who loves me, and have retained the ability to get to and from dialysis. I lost my kidneys while waiting for a new liver. Those two organs tend to fail at the same timed, due to the positive feedback loop that exists between them.

Dialysis. If you have ever tried the old medicine for hepatitis C, interferon, then you know what dialysis feels like. Otherwise, if you haven’t any interferon experience, take ten milligrams of Ambien then have someone you know hit you in the head with a tire iron. That’s probably close enough to what a session of dialysis it like. In some patients, like me and twenty percent of all people getting the procedure, dialysis causes small muscle proteins to break down unused, which makes it impossible in some to add muscle mass. Also, it is known to cause muscle wasting. In my case that means exercise-induced muscle failure. Instead of adding muscle mass, I must take care how much I walk. First to go are the abdominals, which prevent me from standing up straight. I’ve always slouched. I remember my teachers yelling at me to stand up straight. Now I walk around the house, bent nearly in half, like Quasimodo in the bell tower. Nobody yells at Quasimodo. Out in public, I’m likely seen as gimpy. I know because people get out of my way and hold doors open for me. “Here comes that happy gimp.” I must admit, after three years into recovery from transplant surgery, I’m as happy as I’ve ever been, look forward to the dawn of each new day, and love to spend time with my wife, doing anything she wants to do. Mostly, we’re movie addicts. Between On Demand, Netflix, and Amazon, and a big screen TV, we never need to go to the movie theater anymore. Besides, the popcorn tastes better at home.

There is hope on the horizon. I’m changing nephrologists. My old doctor never had the time of day for me, but my new nephrologist is a very sweet and compassionate guy, who likes to talk. Doctors like him are as rare as mermaids in the Sahara. I had been interested in getting a new kidney, but with Medicare a year-and-a-half away, and the risk of infection, nobody at these transplant centers is returning my calls. I’m now looking into dialysis at home. Reading over this update, it may look like life is a bowl of rotten cherries, but I honestly don’t feel that way. I was born with the optimism gene, always looking for what’s around the next corner.

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