I'M STILL TRAUMATIZED FROM BEING ON A VENTILATOR... SO PLEASE AVOID COVID-19

BY KELLY BOYD

Being on a ventilator ranks as one of the worst experiences of my life. The thought of having to rely on one again, should I contract COVID-19, has strongly deterred me from leaving my home. I've lived with severe rheumatoid arthritis (RA) for more than 37 years – since I was a toddler. Having RA and taking medications that suppress my immune system mean I'm at especially high-risk for severe complications from COVID-19, should I contract it.

The United States was unprepared for the high demand for ventilators. But now that they are seemingly in production and hopefully becoming more widely available, people shouldn't feel relieved. Instead, they should hope they never, ever need one. I've never experienced such a sense of helplessness as when a tube was placed in my mouth and threaded down into my airway to help me breathe during neck surgery I needed due to major issues caused by arthritis. I couldn't communicate and it was scary to be that sick and helpless. There is no way to call for help other than the call button that you hope you can reach. Obviously, you can't eat or get up, and if you are lucky enough to get off the ventilator, the removal process is awful, too. 

Adding to the worry is the news one of the drugs used to sedate patients in need of ventilation is now in short supply. When I was diagnosed with juvenile rheumatoid arthritis in the early eighties, there really weren't any beneficial treatments for young children and, consequently, I have a lot of permanent joint damage. I began using a wheelchair and a walker in elementary school and I still do today. Getting out and about on a good day is more challenging for me than the average person, let alone right now. That's why I did not want to risk my health, or frankly, my life, to deal in-person with insurance paperwork that was required  last week, when my health insurer unexpectedly informed me that a daily medication I've taken for years was no longer covered.

After so many decades living with a chronic disease, I'm accustomed to fighting for everything I need—from medical supplies to equality as a disability patient. But, after five days, numerous phone calls to the prescription drug company, and still being denied the medication, I told the representative I would not leave my home to go to my doctor's office to collect a prior authorization letter. In this scenario, other patients could potentially have the coronavirus and put my health in jeopardy. Even with that letter in hand, I knew COVID-19 from an email communication that it would take anywhere from 72 hours (in emergent cases) to 10 days for a decision to be made. When I told the representative that I could die if I got the virus as well as if I didn't get my medication, she responded by saying the medication isn't lifesaving. I was taken aback since she has no knowledge of my treatment plan. Growing more upset, I asked her if she'd be the one to tell my parents that when I ended up in the hospital.

Luckily my persistence paid off and I have my medicine in hand. But that doesn't mean I can stop being vigilant about reducing my risk for COVID-19 and possibly needing to be hospitalized and on a ventilator. I am taking extreme precautions, even for me.

Fortunately, I am able to work from home right now and I'm remaining inside as much as possible. While I need outside caregivers to assist me with my daily routine, we're being very careful. My personal care attendants wear gloves and masks, but I do worry about their health. One has already taken leave to care for her own family, making me rely on my mother to fill her shift. We're constantly washing our hands and disinfecting surfaces. When I need education about COVID-19 or even just social engagement, I visit with my friends digitally via the Global Healthy Living Foundation's social media channels and websites. Next, I'm doing my best to protect myself and my loved ones from the ugliness and fears that the complications of this virus can cause. We can all be part of the solution. The virus only travels when people move it around. Please stay home to protect yourself, your loved ones and those people at the highest risk for severe complications from COVID-19. •

ABOUT THE AUTHOR:

Kelly Boyd is a New Jersey resident and volunteer advocate for the Global Healthy Living Foundation.