Smooth Sailing

I’ve been feeling pretty good for the last several weeks. My last kidney rejection wasn’t too bad, but I had a very slow climb back up to feeling more consistent. They were able to treat it with medications, but it really took a lot out of me. Currently, besides being very tired off and on, my lower back hurts like I’m an old, run-down athlete, and my feet hurt. They’ve recently started to hurt less, though the back pain has stayed around.

After going through my nephrology team to find out that my back pain shouldn’t be from my medications, I’m now set up to try physical therapy this week. My lower back has been bad since I had my liver transplant, but I was on dialysis after that and so anemic I could barely walk, so it’s been a long time without any activity. I met with a therapist at the hospital last year a few months before my kidney transplant, and she was wonderful. I was not able to really help myself very much at the time because of all my medical issues, but I did get ideas of small things I could do to keep myself sane, like work on the muscles in my hands and fingers.

I met with my nephrologist last week. She’s happy that my numbers are finally stable, and usually she would lower my meds some more at this point, but because my numbers go out of whack every time she’s tried before, she wants to wait another two or three months before trying. But after our appointment my next set of numbers showed my immune system is too low, so I’m now taking two Myfortic 180 mg twice a day instead of three twice a day. Eventually, they may introduce Belatacept for a couple of months and then start lowering the other meds once my body has adjusted. I think they eventually need to lower my meds somehow.

I try to enjoy these times when I’m feeling better. Today I went to three nurseries looking for a plant to give to a friend as a gift. I didn’t get anything, but it was nice to be outside and to drive around on a nice day. I sometimes feel silly loving simple things like poking around for a couple hours without a plan. But when I have the strength and ability to get out, I do, even if it’s for nothing important. I need to try to do things when I can. A few days ago I would have been stuck in bed, hardly able to walk because of my back and feet, and a stomach that can barely handle water.

With no immune system, I can easily pick things up, and I think that’s what happened. I didn’t tell my doctors, and I got a little admonished when I eventually did, but that would likely have meant a trip to the hospital, pooping in a plastic container, and being poked a lot for my blood. Then they would tell me I had something, but there was nothing they could do because of my immune system. If it was something worse or went on longer I would have reached out to her.

I hate staying in the “one day at a time” state of mind, but I can’t really help it. A couple of days ago I couldn’t get out of bed, and so I stayed there and slept all day. And I was still tired. Sleeping still felt great. It wasn’t that feeling that I had overslept and felt groggy and overdone. When you have days like that thrown at you, all you really can do is roll with it. It wasn’t bad. I didn’t hurt. It was still a good day.