kayray.org

Yesterday was so awful, just so awful in so many ways. Besides EVERYTHING ELSE I’ve had Constipation From Hell since Monday. I blame severe dehydration caused by a combo of diuretics and not being allowed to drink anything for… 12? 18? hours. Not sure how long it was but I was so parched I could scarcely speak.

Also on top of THAT we tried titrating up my Remodulin dose, which always causes a couple weeks of severe side effects. So those started up last night and were so bad I pled to go back to my regular dose, which they ok’d. We’ll try again when I’ve been home a while and my general discomfort is less severe.

Anyway. Today has been better. Constipation is easing. Allowed to eat and drink at will. Heart behaving. Lungs less janky. I’m off the horrible high-flow oxygen machine and back to a regular nasal cannula, and I’m only needing 7 lpm. At home I use 3-4 lpm.

And best of all a lovely doc said they could unhook all the monitors and even the bp cuff and pulse/ox. See, last night I had kind of an Episode of Awful (see: titration) and I summoned them immediately to tell them I needed more o2 and my heart was racing. So I think they trust that I will tell them if things go wrong.

He said something like, when they watch the numbers too closely in an unusual patient like me, they might try to fix stuff that isn’t broken because what’s normal for me is abnormal for everyone else.

This is the BEST HOSPITAL. Staff is uniformly excellent. They let me wear my own (filthy) clothing. They didn’t confiscate my Bag of Meds. The food is pretty darn great. This was the first day I was able to eat breakfast and I had cream of wheat and a fruit-yogurt-granola parfait. So fresh, and everything is obviously made to order.

I’m supposed to eat small bites of lots of different foods to help my poor belly so last night I asked for two slices of multigrain bread, two slices of jack cheese, and a side each of spinach, peas, and rice. Nothing frozen, all high-quality. Not disgusting grocery store bread. I could only eat a few bites of each thing but I kept working on it all night long.

It’s frustrating that I could move around if I wanted, but I’m too exhausted to do anything but lie here and nap. I did manage some gentle stretches this morning. That’s better than nothing.