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

By Megan Marjorie: For Complete Post, Click Here…

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.”

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?


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