10 PM Stem Cell Replacement Blog: Learning, growing, coming to understand how this is likely to go.

Ironically, last night was the first night I haven’t slept in a long time. It was also the night for my sleep study. Trying to understand why my sleep apnea has become so difficult to manage. I wasn’t able to complete it. I need to get that done. I’m having difficulty in breathing at night when I’m sleeping and don’t know why. I don’t know how to get this done. The symptoms of the graft versus host disease got in the way and made my so uncomfortable that I was unable to sleep.

I’ve become sick and very uncomfortable in the last couple of days with skin problems and other uncomfortable symptoms. These manifestations will only become more extreme unless the correct counter measures are taken. We’re in the process of discovering the best ways to do that. I know that I need to work harder at this if I want to avoid the worst of the problems.

On an almost daily basis, I find myself getting stronger. I’m gaining a little bit of weight on a continuing basis as well. Even though these are small changes, they are encouraging.

I’ve been discouraged lately. I have to get that under control. Otherwise, I’m going to make my life much more difficult than it needs to be. It’s already difficult enough without creating any additional difficulties for myself.

One of the nicest things about the transplant experience is the place where we’re living right now. This building was built prior to electricity and indoor plumbing. It’s interesting to see how they’ve resolved this issue. Almost all of the wiring is external (or on top of) the walls. They accomplished this very elegantly and it’s hardly noticeable. The plumbing must have been another matter. Don’t know how they did it.

When the doctors were checking my various medication levels, they discovered that the drug to prevent graft versus host disease was being given in inadequate levels. It was causing many of the symptoms that were bothering me and causing me to feel sick. As soon as that was corrected, I began to feel considerably better. The medication change made everything bearable again. So, I can handle it again.

More tomorrow.

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