When I Had No Choice But to Go to the Hospital During COVID-19 for My Rare Disease

·4 min read
photo of intensive care unit of modern hospital, unfocused background.
photo of intensive care unit of modern hospital, unfocused background.

Rare diseases never take a break — even during a pandemic.

Hospitals, instead of homes for healing, have become “houses of horror” for many patients like me.

There are times when I’m in desperate need for medical care, but terrified to go because I am immunosuppressed. This puts me at an increased risk of catching and likely not surviving COVID-19, a coronavirus that can cause severe respiratory infection as well as a variety of other symptoms.

But it was on a night full of fear, coughing and wheezing, my lungs felt like they were being gripped by an anaconda, where I definitely gained an even greater appreciation for those who are on the front line of this pandemic.

For a couple of weeks, my lungs had been struggling. And it seemed as though on that day I just couldn’t catch my breath, or catch a break.

Even with cough medications, inhalers and nebulizers, I had nonstop coughing and a growing tightness in my chest that just wouldn’t let up. Even when I was laying down, I felt like I just couldn’t breathe. It was the worst asthma symptoms I’ve had in years. It got to the point where I literally googled “what to do when the nebulizer doesn’t help.” The response? “Go straight to the hospital.”

Related:Download The Mighty app to connect in real time with people who can relate to what you're going through.

However, my immune suppression and combined variable immune deficiency (CVID) has made going to the hospital a scary experience for me. I catch pneumonia and respiratory illnesses quicker than people catch the common cold. Still, I wondered if the hospital would even treat me with the current protocols and COVID-19 crisis. Would I be turned away at the door?

I couldn’t just spend the night letting my symptoms increase, so I ended up going to the hospital. I learned that when it comes to health care workers and the oath they take to heal, that when one hospital door is closed, a drive through is open. Because of my symptoms that night, I went through a drive through ER. They had me call when I got there, and a nurse came to me fully gowned. I slipped my mask on too. As he took my vitals, it once again hit my mind: what if I had COVID-19? I know he has a small family. He has kids. And still he is here, willing to risk his health to help others. The same goes with the doctor who saw me tonight, and everyone at that hospital. I live in such a small town, and have been to that hospital so often I could probably tell you the names of some of their kids and grandchildren.

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Each and every person who takes that oath to help and heal others takes it so seriously, they are willing to risk their life for it. Tonight at the drive through ER, that fact alone filled me with overwhelming gratitude. Thankfully, I was right, and tonight was just an exacerbation of my asthma. The ER doc is pretty well versed in my connective tissue issues, and gave me a new cough pill to try, some antibiotics, and a steroid increase. I’m just going to try to give my body a whole lot of rest.

All of this made me realize that if I do, at some point, get COVID-19, as long as I have doctors and nurses who care, like the ones in my home town do, maybe I’ll have a fighting chance.

They won’t just see me as someone they should “give up” on — some sick person with horrible odds, and pass the vent to someone with “a better chance.”

Related:The Hardest Parts of Rare Disease Life During COVID-19

I know at least in my home town, and with some of my amazing specialists up north, they would fight for me just as hard as I fight for myself. They would fight for me when I’m too weak to fight for myself.

So, to all the fantastic health care workers out there, I can’t thank you enough for fighting every day and being willing to risk your lives to help others.

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