I Almost Didn’t Write This Column About My COVID-19 Experience

“I wish I could help you. I know how tough pulmonary hypertension is and what you’re going through — there just isn’t enough supply of the antibodies treatment.” That was the gist of what a doctor told me while I was isolating in a California hotel room in January.

I contracted COVID-19 at the height of the omicron surge. I was on the West Coast visiting my family for the holidays, and I had taken a COVID-19 test in preparation to fly back to D.C.

But the virus grounded me, and the experience wasn’t exactly Eloise at The Plaza.

COVID-19 or PH flare-up?

I asked that amorphous question many times over the past two years. I imagine other chronically ill and immunocompromised people have been asking themselves similar questions.

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Shortness of breath, chest pain, fatigue, and muscle weakness are symptoms all too common with pulmonary hypertension (PH). If I walk up a few flights of stairs without my oxygen concentrator, I will become out of breath, my heart rate will spike, and I’ll experience chest pain.

As a result, it can be difficult to parse out the root cause of very similar symptoms. The coincidence isn’t lost on me that mimicking symptoms can also be what delays a proper diagnosis of pulmonary hypertension. I have been there before.

But my symptoms before testing positive — sore throat, congestion, runny nose, headache, shortness of breath, and fatigue — only persisted. I was grateful my oxygen numbers recovered and remained stable at rest, that I didn’t have a fever, and that I retained my sense of smell and taste.

There’s nothing mild about COVID-19

I recognize that many others who contracted the coronavirus were dealt a worse hand. More than 960,000 people in the U.S. have died from COVID-19, and others have endured incredibly difficult hospitalizations and recoveries.

That’s why it was difficult to hear so much talk in the news media about how many of the COVID-19 cases were mild during the omicron surge. Then and now, people were still contracting and dying from the virus, including those who were vaccinated and boosted. Describing cases as mild, even if the cases didn’t result in hospitalizations or death, like mine, seemed to frame this stage of the pandemic through an ableist lens that ignored how disabled, chronically ill, and immunocompromised people were managing their daily lives.

I dedicated a hefty amount of brainpower to not thinking about how much worse my COVID-19 case could’ve been if I wasn’t properly vaccinated. I almost didn’t write this column for that very reason. Every now and again, I push away these morbid notions that cross my mind and instead consider when it’s time for me to get another booster shot.

‘No. I don’t feel like a superhero. I feel angry.’

After two years spent mostly quarantining and limiting my social interactions to avoid contracting the coronavirus, I had finally tested positive. A friend asked me if I felt like a superhero. “No. I don’t feel like a superhero. I feel angry,” I responded.

Feelings of anger and shame swirled while I rode out my symptoms. After so much vigilance, perhaps I had let my guard down, or maybe these feelings were misplaced. I was also angry with how government officials had failed to respond adequately to the pandemic early on, and the political polarization around common sense public health protections like vaccines and masking.

Knowing that the available antibody therapies were prioritized for willfully unvaccinated individuals fueled a certain level of frustration. I felt as though I had done everything I was supposed to, yet all I had to hold on to was the reassurance that thankfully my oxygen saturation didn’t dip too low.

Some peace of mind thanks to PH

Contracting a life-threatening virus is scary for anybody, and the pandemic has forced many more people to interact with the U.S. healthcare system than usual. However, those of us with chronic illnesses and rare diseases can’t avoid those regular interactions.

Living with PH did give me an unexpected sense of preparedness. I was ready to monitor my oxygen levels, already owned a pulse oximeter, and had oxygen on hand. I contacted my pulmonary care team immediately, and they provided a doctor in California with a detailed explanation of my health history. My side effects didn’t dissipate any quicker, but having these resources at my disposal did provide some peace of mind.

Recovery and moving forward

While I feel better, I still manage some related brain fog, fatigue, and shortness of breath. I notice the brain fog most with memory and spelling. My experience only reinforces my hope that this pandemic moment forces significant improvements in our healthcare system. Change begins with our stories — that’s why I’m sharing mine.

Follow Mike on Twitter: @mnaple.

Note: Pulmonary Hypertension News 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 Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.