I Want to Feel Comfortable Going to the Clinic Again

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by Kristin Entler |

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Because of the COVID-19 pandemic, I’ve never met my current pulmonary care provider in person, and I keep putting off my face-to-face appointment.

I moved from Alabama to Arkansas for graduate school in the summer of 2020. It was the first time I lived outside my home state. I’d researched the best cystic fibrosis (CF) care center by using the clinic finder of the Cystic Fibrosis Foundation (CFF) and asking patients about their experiences on online forums. I learned there was a CFF-approved clinic affiliated with the state’s largest research hospital.

My first appointment was scheduled for just before the semester started. At the time, the default mode of meetings was virtual. My clinic sent me a link to a patient portal video session, and I talked with the doctor about how I was doing.

I’d been on Trikafta (elexacaftor/tezacaftor/ivacaftor) for roughly six months when I moved to Arkansas, and for the first time in my life, I swore I could feel the bottom lobes of my lungs. I feel fortunate beyond measure to say my lungs still feel clearer than they ever felt pre-Trikafta. The ship feels like it’s holding; there’s air in the hull instead of water.

But I’m still unable to fully appreciate this miracle by experiencing life the way I always dreamed. To continue the body-as-ship metaphor, I’m stuck docked in the harbor because there are near-invisible mines waiting to blow me up if I leave port.

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It’s Not Inevitable That Everyone Will Get COVID-19

Throughout this pandemic, many nondisabled people have talked about the loss of their freedoms, as if enforcing mask mandates and safety measures is somehow taking something away from the general public.

The other week, my phone chimed with the all-too-familiar reminder text from my pulmonary clinic letting me know my scheduled appointment was coming up. The new omicron subvariant of COVID-19, BA.5, was just starting to be reported, and we were still deep in the wave of BA.4.

I responded with a “1” to confirm cancelation and sent my clinic coordinator an email letting her know I still didn’t feel safe coming in, considering I’d have to take my mask off to do my pulmonary function test. She kindly put me on the schedule for the next available appointment, in October.

From what I’ve seen online, this has been a common experience among many vulnerable people in the disabled community. While much of the world returns to its idealized “normal,” we continue to delay important medical appointments that are either urgent or, like mine, a routine visit to make sure I’m doing as OK as I feel.

Because even though I feel OK, it doesn’t mean there isn’t an underlying infection brewing in the background. Sometimes, it’s important to pull boats out of the water and make sure there aren’t invasive and problematic growths underneath.

Going into the clinic is inherently risky for me, and I don’t want to take that risk unless it’s necessary. I can’t personally justify risking a deadly viral infection by taking off my mask — the only protection I can rely on anymore, since many others took theirs off when mask mandates ended. Hospitals are notorious hotbeds for germs to spread and grow, and since my doctors specialize in the lungs and are on call on the pulmonary floor, they inevitably come into contact with COVID-19.

The way things have been going, including the recent rise in monkeypox cases, I don’t expect to be able to leave the safety of my corner of the world anytime soon, though I’m trying not to lose hope.

Some U.S. counties are planning to bring back mask mandates, and I hope more follow suit. But the problem with time, and with unraveling scientific disasters, I’m learning, is that we only ever know what we know in this moment. There’s no way to know what will be happening in October, or even a month from now.

All I can do is remind myself to take a deep breath. I’m safe at home. I can focus on making it to tomorrow, and tomorrow, and tomorrow. I can remind myself of the thing that’s remained true about every pandemic so far: It ended eventually.

Note: Cystic Fibrosis 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 Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.


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