A respiratory illness left me fighting for my life
With SMA, 'getting sick' means a whole lot more than it does for most
As I lay in bed, willing my body to find some energy to write this column, a notification popped up on my phone. According to USA Today, a “quadruple whammy of viruses” had been spreading across the country. All I could do was roll my eyes.
After the past several weeks, I didn’t need a news article to tell me how rampant viruses were in the community. I also didn’t need my anxiety levels to be higher than they already were. Alas, it was the time of year when cold and flu season ruthlessly targeted anyone along its warpath. Unfortunately, I became one of its victims when a nasty cold caught up with me last month.
When living with spinal muscular atrophy (SMA), getting a respiratory illness can be life-threatening because of muscle weakness. Simply put, I’m not strong enough to cough and clear mucus from my lungs. A common cold has landed me in the hospital’s intensive care unit before. A three-letter acronym, RSV, which stands for respiratory syncytial virus, gives me terrible flashbacks. And pneumonia has almost taken my life numerous times.
Given my history, it’s safe to say that my lungs don’t have the best track record when it comes to illness. So when a recent respiratory infection knocked me down for the first time in years, my worst fears came true. I had to desperately fight for my life.
Since my last respiratory infection seven years ago, my body has grown weaker, leaving me with an unsettling feeling about getting sick. I now live with chronic fatigue. I use a nasojejunal feeding tube because I can’t swallow well anymore. My lung capacity has diminished slightly, and my muscles have lost some strength. Amid these slow declines in my health came the intrusive thought that I wouldn’t be strong enough to win the next battle and I’d succumb to the next respiratory virus.
Unfortunately, this possibility is a grim reality for those of us in the SMA community. It’s why I hunker down during germ season, forgo social engagements in the winter, and still wear a mask in public. But despite my greatest efforts, I can’t escape the inevitable forever.
For three weeks, I fought tirelessly alongside my parents, who were a beacon of light during this dark time. They gave me albuterol nebulizers every four hours, with hypertonic saline nebulizers in between. They put me in postural drainage, a position that allows gravity to drain phlegm from my lungs, and performed chest physical therapy every hour. Most importantly, they never left my side and did everything they could to keep me comfortable.
As I sit here in the aftermath, reflecting on what my body has endured, I feel grateful and blessed. I fought in ways I didn’t know I was capable of fighting. On the flip side, however, I’m currently weaker than ever. My body was pushed far beyond its limits, and although it paid off, I now have to do a different kind of healing. And it starts with rest.
Right now, I find myself somewhere between triumph and fragility. Surviving such a harrowing experience has reminded me of my resilience. Yet it’s also left me more acutely aware of my body’s vulnerabilities.
I still have a long way to go until the cold and flu season ends. Until then, I’ll remain vigilant. I’ll remain focused on healing and rebuilding, one breath at a time.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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