One of the skills a CFer has to learn as they grow up is knowing what their body is telling them. In clinic, they don’t just pay attention to the hard numbers if we are telling them a different story based on abilities or general feeling. This update has found me in the state we call “below baseline.”
I finally ended up calling in about how I was feeling on Tuesday. I had one more day of Levaquin remaining but my cough was increased and was feeling generally junky as detailed earlier. They called back after speaking to the doctor and they decided to not do anything unless I run a fever, so we established what number that is. I am typically 97.9-98.4, so they said to call if I even hit 99.5 for a while and immediately if I hit 100.
With that, I’m supposed to keep calm and stay hydrated and eat or night feed as much as I can. On that note, I did get permission to double up my Prilosec to avoid night feed heartburn but I need to call tomorrow to report in. I’d say it was much better last night.
I’ve had several “bad lung days” where I feel short of breath a lot or weird coughing or just plain tired all day. When I try to do something but I can’t, it’s much like one of my favorite Far Side frames. When the next day is still the same story, all the more so. Also, despite my wife telling me that my anxiety is causing all sorts of odd reactions to situations, I am still no more successful in changing that, so I’ve started taking a micro-mini dose of Xanax to bring me down.
Yesterday was a particularly bad morning, so I decided to take the entire day off to watch DVR and nap. Nana took our toddler and my wife went to the beach. At one point, my heart was still going 120, so it was time to Xanax up.
One recent example is when our toddler opened the cabinet door under the sink and grabbed the drink bottle brush to play with. I lurched and gave him a startling, “No, don’t grab that!” “It’s fine,” she said. “He plays with it all the time. It’s clean.” I thought it would be all nasty from cleaning out the dishes… because when I leave a drink in a bottle too long, I go for gold and it’s usually a science project when I take it to the sink.
The next time he went for the brush, I was in the kitchen catching my breath on the stool and playing a phone game when she yelled, “Jesse! He’s going for the brush!” and started laughing. She’s got an effective method, eh?
On the funnier side, I keep thinking one day I’ll do something entirely ridiculous in public, like in Sunday School and then it will be more like this:
Waiting list update
At some point last week, someone was transplanted. I never did hear any more about it. When I ran the report today, though, someone had moved to the inactive status since yesterday. I’m now competing against 7 other people in the hospital.
One friend on Facebook did point out that if the lungs aren’t local, I’m competing against the region. Our region extends to Louisiana and Georgia. Florida has 14 centers and is more than half the centers in the region. Today, I did some Googling and learned that A type blood can receive organs from either A or O donors. So if there is an O in need, they will most likely get the lungs, but if I’m the closest match for size, then they could come my way. This is all so fascinating to a geek like me.
That’s all, nothing much happening other than waiting and working on my sites.