Why I still worry about COVID-19 continuing to make the rounds
Because of aHUS treatment, I'm an immunocompromised, high-risk patient
When I opened my eyes, all I could focus on was how much they were burning. They were watering, but that provided no relief because my tears were hot. No matter which position I lay in, I was uncomfortable. My skin was crawling and my mind was racing. My thoughts were disoriented, and it felt like bugs were scurrying around inside my head. I was burning up yet shivering uncontrollably.
The thermometer under my tongue began to beep.
“It’s all done, Mommy,” my son, who was 6 at the time (this happened in January 2022), said as he sat on the bed taking care of me. He knew that if I didn’t feel well, I’d stay in bed for a long time, which meant unlimited screen time for him as he snuggled in bed with me.
“It says your temperature is 11 o’clock,” he said with a concerned look on his face. God bless him, he had no idea how to read a thermometer. I reached for it. “That can’t be right,” I thought. I rubbed my eyes and looked again: 104.3 F.
COVID-19 is still a threat
It was official: I was sick with COVID-19. As I mentioned, this happened in January 2022, but I’ve been thinking about it a lot lately, because COVID-19 is still circulating, particularly at our local schools. I’m immunocompromised from the treatment I receive for atypical hemolytic uremic syndrome (aHUS), a rare disease that almost killed me. This gives my body few means to fight infections.
In September 2020, I was in the intensive care unit at a hospital for two months, nearly dying from multiorgan failure. An asymptomatic bout of COVID-19 had triggered aHUS in me. Now my immune system attacks my blood and organs, so I have to be immunosuppressed to keep it mostly inactive.
Oddly enough, since my initial near-death experience, I haven’t been sick very much. But in early 2022, I was reminded of my weakened immune system when both of my children caught COVID-19. While they were sick for less than three days, I’d already become ill by then.
My fever eventually dropped to 103.7 F, but it remained there for 10 straight days. I lost 25 pounds in the first five days, experienced short-term memory issues and confusion, and was too weak to sit up.
Looking back, I think I felt sicker and weaker during that experience than when I was dying in the hospital two years earlier. In the ICU, I was weak and tired but disoriented only for the first couple of days. Once the staff began implementing lifesaving measures, I was alert and cognizant. But not during my subsequent COVID-19 ordeal later.
Back in 2022, I tried unsuccessfully to call my primary doctor. I didn’t know it at the time, but the office was closed because most of the staff had COVID-19, too. So for the first six days of my illness, I couldn’t reach them.
My nurse at the lab where I receive aHUS treatment encouraged me to try my primary care physician one more time. This time, my doctor answered. And he was freaking out. He knew how dangerous COVID-19 could be for me.
I told him I was scared. “You should be scared,” he replied, “because you’re high risk.”
He recommended I be treated with sotrovimab, which hadn’t been approved by the U.S. Food and Drug Administration (FDA), but the agency did briefly issue an Emergency Use Authorization for it for some patients, including me. It took three days to get me approved for it.
Thankfully, I eventually received the treatment, which worked so well that I felt better within six hours. By the 24-hour mark, I felt like I hadn’t even been sick.
I’m telling this story today because COVID-19 still worries me, and it might always be that way. Every cold and flu season, and anytime my children come home with the sniffles, I worry about getting sick myself. Even though I constantly take measures to reduce the risk of infection, I’ll always worry about COVID-19.
Note: aHUS News 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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