It’s weird not being able to breathe. I mean, I CAN breathe, but if I have to move around move at all, then I can’t breathe. Like, going to the bathroom to go pee, which is a few feet from my bed, leaves me completely out of breath. It basically sucks. We’re working on getting what appears to be a shitty company called Quest to get me some oxygen at home but because they’re taking for-fucking-ever to get around to it, I’m borrowing a tank from #bestdocever’s office. Having an oxygen tank helps a TON.
On Monday, I had my HLA platelets. Over the weekend, they’d dropped to 20K. After the infusion, they’d gone up to the 40s. Whopdiedoo. Oh, and it turned out that my hematocrit was 19, which is also fucking low. So, I had a transfusion, 2 bags of blood. I haven’t seen the results after the transfusion, so I’m not sure how much the transfusion helped. Last time, it raised my hematocrit from 20 into the 30’s, so let’s hope we see a similar result.
This whole thing sucks. It just does. It sucks that I can’t breathe. It sucks that not being able to breathe keeps me in bed, It sucks that the progress that I’d made cognitively is now sliding backwards because I’m so tired, my brain isn’t functioning right. It sucks that I slept all day at the hospital during my transfusion. It sucks seeing the terror in J’s eyes every time I gasp for air. It just fucking sucks.
Today we’re hoping to have an answer about what to do about my goddamn lung—maybe a stent in there to open up my lung a bit, so I can breathe more? Maybe something else?
This disease fucking sucks.
UPDATE: As of 12:30PM today, I have an oxygen compressor, as well as some portable bottles to take to doctor appointments. Yay!!! Holy cow, does oxygen make me feel better. More human, my brain actually functioning, not coughing so much…it’s seriously the bomb. O2, I love you.