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Well, it finally happened. I got COVID-19. I am high risk and on multiple forms of immune suppression, so I worked very hard over the last 3 years to protect myself. With having a refractory form of myasthenia gravis (MG) and chronic respiratory failure, the thought of contracting COVID-19 has been a constant source of stress. Those of us who are high-risk have had to go to great lengths to protect ourselves.

The pandemic has been a difficult ride, as I’m sure many other rare disease patients would also attest to. I’m homebound so I already live in isolation, but I’ve had to live in even more isolation over the last 3 years. My husband and my family have had to do their part to help keep me protected, and I’ve had to try to limit my time in public to only medical appointments. 

Every time I go in public, I am putting myself at risk. I have had 5 doses of the COVID-19 vaccine. But because I’m on such high doses of immunosuppressants, there’s no way to know if my body was able to make any antibodies. Many others live with that same uncertainty. I knew if I caught COVID-19, my life could be at risk.

I started feeling sick during the 3 days of my intravenous immunoglobulin (IVIG) infusions, and I brushed it off as allergies. But within a few days, I had body aches, chills, fever, congestion, and an extremely high heart rate. I took a COVID-19 test, and the line turned bright red when I put the swab in. I stared in disbelief. I went to urgent care and got a prescription for Paxlovid. I had asked my neuromuscular specialist last year what I would need to do if I ever contracted COVID-19, and she said to get the antiviral right away. It was good to have a plan. That helped assuage my anxiety. I quarantined in my bedroom for 6 days and rested in bed to get through it. 

Comorbidities with MG

My symptoms were not mild but staying in bed and resting helped. My cat stayed with me the whole time; I was grateful for her company. My husband thankfully never tested positive. He is my caregiver, so it was very complicated for us to keep him protected. He is also fully vaccinated, and I think that helped him never test positive. I had to delay one of my infusion treatments because it’s an immunosuppressive treatment, but thankfully that was the only major treatment change I had to make while I was sick.

It’s been three weeks since my first symptoms, and I still have a persistent cough and more fatigue, and my tachycardia has been worse. I also have postural orthostatic tachycardia syndrome (POTS), and COVID-19 took quite a toll on my autonomic symptoms. It can be hard to know in the vast constellation of many symptoms what will be triggered by a virus.

Since my respiratory muscles are so weak, it is difficult for me to cough successfully. I am always at a high risk of pneumonia. I have been using a lung agitator device I was given before my thymectomy surgery. It helps me clear my lungs more successfully, and that has helped. It’s good to have devices like that to help avoid pneumonia.

I am really glad that I had already discussed a plan with my MG specialist beforehand. That helped me know exactly what to do. I am relieved my husband and I were able to come up with a plan and managed to make sure he never caught it. I am grateful I never ended up in the hospital, and I continue to recover. I am grateful an antiviral is now available for high-risk patients like me. I had to give up so much and live in intense isolation for the last 3 years, and after contracting COVID-19 I now know that it was the right choice to make. This was a reminder the pandemic, unfortunately, still isn’t over for those of us who are in a high-risk category.