It’s been a pretty lousy week for me, to say the least. What started as a ridiculously annoying cough in the middle of the first week of February eventually resulted in a trip to the emergency room the following Saturday.
“Please don’t say the P-word, please don’t say the P-word,” was the only thought racing through my head as the doctors talked among themselves.
Sure enough, though, after multiple tests, a chest X-ray, and a fever that continuously went up and down, my pulmonologist confirmed that I did have pneumonia. Hey, at least I tested negative for the flu.
Being more prepared
The last time I contracted a bad case of pneumonia was at the tail end of 2009, which was before I even had my Vest airway clearance system. This time around, I increased my daily number of vest and cough assist sessions as soon as I started coughing. While it wasn’t enough to keep me out of the hospital, it did help me get out a significant amount of phlegm. Nevertheless, there was too much secretion in my system for me to recover on my own.
Upon checking into the hospital, my primary objective was to get some antibiotics and cough up as much junk as possible. Once I tested negative for the flu, the fever wasn’t a major concern of mine. I just wanted to stop coughing up this crap!
The hospital stay
I remained in the hospital for three days and two nights, which isn’t bad considering how serious pneumonia is for SMA patients. During that time I did four Vest sessions per day and probably twice as many cough assist sessions, took medications, used a suction machine constantly, tried to eat somewhat normally, drank a lot of fluids and, of course, watched excessive amounts of Netflix.
The most difficult part of the hospital stay was that the room I was in wasn’t big enough to accommodate my bathroom seat. This meant that to urinate I had to use a urinal either in bed or my wheelchair. As you can imagine, both methods are pretty uncomfortable, and it didn’t help that the amount of IV fluids flowing through my system was making me go constantly. By the time Monday came, I couldn’t wait to get home and get on my bathroom seat, and not have an IV tube attached to my arm.
I knew I wouldn’t exactly be feeling great when discharged, but I was good enough for home treatment. At home, I could continue my therapies, and unlike in the hospital, I could actually get some uninterrupted sleep. I was discharged late Monday afternoon and was eager to get back to my own room and my bathroom.
Oh yeah, did I mention that the hospital room they put me in was pink and decorated with Disney princesses on the walls? I can only imagine what an onlooker would think if they saw me in that room that Sunday — watching my copy of “John Wick” on the TV, surrounded by Snow White and Sleeping Beauty.
Recovering at home
It’ll still take some time to be fully rid myself of this pneumonia, but I am steadily recovering. I’m coughing up as much as I can, using the vest and cough assist multiple times a day and taking two giant horse pills every morning and evening. It also helps that I only took a few days off work. My energy still isn’t fantastic, but working helps keep my mind going. If I can just get well enough to see “Black Panther” opening weekend, then I’m good.
This season can be pretty sucky for the SMA community, and I’m just glad my condition didn’t get too bad. To all my SMA brothers and sisters who are either sick, hospitalized, or trying to avoid illnesses, stay strong and may spring come already.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.