I had a 2 week follow-up with Dr. K. concerning the lung GvHD and as far as she's concerned, things are headed in the right direction. She said my lungs sound better, which is a very good thing.
I am suffering from side effects from steroids, which is not such a good thing. I have tremors in my extremities, skin thinning, and if I stand for too long, my entire body shakes. The good news in all of this is that I've managed to restrain the ravenous urge to eat everything in sight that comes with high-dose oral steroids. If I can't stand it, I'll have a piece of fruit or a bottle of water. It's a poor substitute for the extra-large deep dish pizza I want to inhale in one sitting, but it will do for now. My skin is so thin you can see my veins and if I'm not careful, a light tap will leave a bruise.
I'm also not sleeping. Steroids wreck your adrenal glands. I've spent the better part of a month existing on 3 to 4 hours of nonconsecutive sleep per night. I'm so jittery during the day that I can't nap. I've been working with both my MDA and my local team to figure it out. Ativan gets me 3 hours of sleep if I'm lucky. My local prescribed 15 mg of restoril. It gave me 3 hours just like the Ativan. He bumped it up to 30 mg and ironically, it gave me 2 hours of sleep before I popped wide awake for the rest of the day. Nice, right? I can't take ambien because it leaves me feeling sick and disoriented the following day. Benadryl left me drowsy, jittery, and awake. ZzzQuil gave me a whopping 4 hours of nonconsecutive sleep.
As a leukemia patient, I used to get a compounded prescription for a nausea medicine called ABH. It contains Ativan, Benadryl, and haldol. Would knock me out every time, so they started giving it to me the first time I had to be on steroids to help with sleep. Chris suggested it to Dr. K., and given that I was on the verge of a psychotic episode due to lack of sleep and out of control mood swings due to steroids, she was willing to try it. I slept for 7 hours after taking one. Dr. K. also wrote a prescription for Lunesta. My insurance company wants everyone to jump through flaming hoops while singing the Star Spangled Banner backward before approving it, so I can't report on its effectiveness since I can't get my hot little hands on it just yet.
Needless to say, my overall mood is improved thanks to a few days of near normal sleep.
I have another appointment next week. It's an annual that had to be deferred since I was in the hospital in July. The following week I'll follow-up on the lung GvHD with Dr. K. and the pulmonary specialist, as well as my endocrinologist who's currently monitoring me for steroid induced diabetes. I've managed to control my diet well enough that it hasn't become an issue. I did become diabetic the last time I was on steroids and so they are being cautious. I'll also see my head and neck surgeon for a check-up on the whole squamous cell carcinoma of the tongue thing. I was supposed the see her the same week I ended up hospitalized and so that 3 month follow up was also deferred.
I'll update as things occur. For now, my breathing continues to improve. I haven't needed supplemental oxygen in almost 2 weeks. I still get tired easily, but it is improving. And people still tell me that I don't look sick. Go figure.