Sleep
I had trouble sleeping right after my liver transplant. I was in the hospital for over a month, and would fall asleep all the time throughout the day, making sleep harder at night. My body was exhausted and rebuilding itself at the same time—there was a lot going on physically requiring energy I didn’t know I was using. And the transplant medications Prograf and CellCept are known to cause sleep problems. One night, after I had been moved out of the ICU and to a floor with less supervision, one of the nurses confronted me, saying he was worried I wasn’t sleeping. But what can you do to make yourself sleep, or want to sleep?
My liver transplant went very well, and while I had some physical problems that were difficult and took a long time to deal with, rejection wasn’t one of them. My hepatologist was able to reduce my rejection meds pretty quickly, and after six months or so I was down to 1.5 mg of Prograf a day, and the rest of my pills were supplements. I was sleeping fine. I was in dialysis two or three times a week, and felt completely wiped out all the time. I could nap for a few hours in the afternoon and still be out by 9:00 and could sleep through the night.
I was in my liver transplant support group just before my kidney transplant, and the topic of sleep came up. Several people talked about how they couldn’t sleep and things they had tried. I didn’t have the problem at the time, and didn’t think I would.
After my kidney transplant I was on steroids every day for the first time. I was on 20 mg a day and felt wired all the time. I would go into rages for no reason, and didn’t feel good. Most of the day I was fine, but usually in the evening the prednisone would hit me all of a sudden and I would go a little bonkers. I don’t think I was mean to anyone, but my mind told me to go, go, go.
After a few weeks the doctors brought me down to 15 mg, then to 10, and I was at 5 mg a day when I started to have a kidney rejection. I remember that I was starting to feel better at the time, and then that better feeling turned into a crummy, sick feeling. That’s when I was called back into the hospital for a series of Thymoglobulin infusions to suppress my immune system and stop the rejection. Before each infusion, the nurse would give me an infusion of Benadryl and one of steroids. 500 mg of methylprednisolone the first day, 250 the second, and then down from there for the rest of the infusions, and then back to the original 20 mg of prednisone a day. My bones felt like they were going to break through my skin even with a high does of Benadryl. I would often pass out and then wake up to the aches and pains. After the Benadryl wore off and the infusion was done, I’d be left with the achy feeling of the steroids, and sleep wasn’t going to happen.
I’m six weeks out of the hospital from the rejection intervention, back home, and I’m feeling so much stronger and better in general. I’ve been tapering down my prednisone, and as of today I’m down to 5 mg a day again. At the same time, I’m still having a lot of trouble sleeping, and I’m trying to find the best solution. Currently I’m doing nothing—watching TV or reading or listening to something. I’ve tried melatonin and ZzzQuil (which is just Benadryl, I know now), and both help me fall asleep, but then I’m useless most of the following day. My head never really wakes up and I drag myself through the day. Gummies sort of work, but THC doesn’t really affect me the way it used to. I don’t drink anymore, and I didn’t like the way that made me feel the next day either. I’ve never taken Ambien, but I’ve seen people who take it and think they’ve gone to sleep but are just awake and don’t know it, doing things around the house and having snacks and conversations they won’t remember, which doesn’t sound very helpful. So I think being open to having trouble sleeping at night is just my current situation.