Navigating my experience with COVID-19 with hope and determination

I’ve been through a lot with SMA, but in April, I faced something different. Early that month, my mom and I both tested positive for COVID-19, something we’d strived for years to avoid.

It started with body aches the night before I tested positive. The next day, chaos enveloped my home for more than two weeks.

I wish I could’ve completely quarantined myself until I wasn’t contagious anymore, but unfortunately, that wasn’t possible. I need medical attention from my nurses every day and night. This is true when I’m well, and even more so when I’m sick.

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What I face on a normal day

A typical respiratory infection can make my breathing dramatically harder. My nurses might be dressing me in bed, for example, and suddenly I’ll be struggling to breathe. The nurses will have to immediately put me on a ventilator with supplemental oxygen. A lung infection can make it harder for me to breathe when I’m lying flat in bed, which is just one scenario my nurses must be prepared for.

They also have to react quickly when I need my airway cleared. This suctioning sometimes is required every hour, whether I’m sick or well. Multiple breathing treatments, including the Vest Airway Clearance System, are also needed throughout the day and night, regardless of my health status.

In short, my nurses always have to be quick on their feet. COVID-19 significantly increased this necessity.

How COVID-19 affected me

At a time when I had COVID-19, and needed my nurses more than ever, four of them got it, despite the precautions taken. These four nurses were no longer an option to take care of me. My mom was all I had left to give me care, besides going to the hospital.

This meant that my mom had to take the nurses’ place while battling her own symptoms. We all know how tired and weak COVID-19 can make you, so imagine having to endure that while delivering constant care so that I didn’t get worse. That’s how amazing my mom is. She will forever be my hero.

While she worked hard on me during the day, I thank the Lord that by some miracle, my nights were covered by nurses who didn’t have COVID-19. It would’ve been impossible for my mom to cover both days and nights.

Nine days later, my mom and I tested negative, but the chaos continued. During the second week, my lungs still felt heavy with congestion. I needed the ventilator almost all the time, both in bed and in my power wheelchair. My mom and the nurses worked vigorously to clear my lungs.

Another thing that made a huge difference was that my pulmonologist, after studying my lab culture report, noticed that I needed two antibiotics. If he hadn’t prescribed me the second one, I’d probably still be fighting congestion.

By the end of April, my mom and I were doing better, and we were able to leave the house for a few hours. We still don’t know how the virus entered our home, but that can be tricky to figure out.

COVID-19 tackled us hard, but we proudly fought back. I credit God for giving us the strength to do so. This type of determination and hope is what helps me soar!

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.