Cold and flu season bring serious risks for those who are immunocompromised
A columnist with aHUS describes how she takes extra precautions
It’s that time of the year again — and not just for approaching holidays and snowy winter weather. It’s also the season for what I hate the most: colds and the flu. As someone with an ultra rare disease that leaves me immunosuppressed, cold and flu season is the scariest time of year for me.
In September 2020, I nearly died. I spent two months in the intensive care unit after going into multiorgan failure due to a rare disease called atypical hemolytic uremic syndrome (aHUS), which was triggered by an asymptomatic bout of COVID-19. That led to kidney and liver failure, destroyed most of my red blood cells (a condition called hemolytic anemia), and permanently damaged my kidneys, liver, heart, and uterus. It was a frightening and surreal experience, to say the least.
Three years later, I’m slowly on the mend. I came off dialysis after five months. I underwent physical therapy to gain back some of my strength. And I had a hysterectomy 10 months into my journey to deal with a wrecked uterus. But the only treatment that keeps me from relapsing is biweekly infusions of a drug called eculizumab (sold under the brand name Soliris).
Eculizumab is a terminal complement inhibitor. In simple terms, it shuts down my immune system so that it won’t attack my blood again. But being immunosuppressed puts me at a much higher risk for getting sick and being unable to fight off illnesses, which is why cold and flu season is so stressful.
Threats on multiple fronts
Developing this disease and being immunosuppressed in a COVID-19 world is terrifying. My body is unable to recover the way a healthy person’s does from common illnesses like colds, the flu, strep throat, and, of course, COVID-19.
Catching COVID-19 with a weakened immune system is awful. This happened to me in January 2022, when I became gravely ill after COVID-19 ran through my children’s school like wildfire. My two boys were sick for fewer then two days, but I had a 103-degree fever for 10 days straight. I lost 25 pounds in the first five days, had no appetite, was delirious, and shook uncontrollably. My symptoms wouldn’t let up. I finally had to receive an emergency injection of sotrovimab, which led to my recovery.
Another concern is that eculizumab puts me at a higher risk of catching meningococcal disease. The U.S. Centers for Disease Control and Prevention says that people taking eculizumab are 1,000-2,000 times more likely to catch meningococcal disease than average healthy people in the United States. So I need to keep my immunizations for this up to date.
These fears led me to make the devastating decision to leave my field of employment. I worked in education for more than 20 years, doing almost everything, including teaching, program development, dean administration for an entire preschool program, and even owning a preschool for five years. I love enriching young minds and seeing the light in their eyes when they get excited about learning.
Before I developed aHUS, I had lupus (and still do), which made me susceptible to common illnesses. So when I worked full time, I was constantly taking antibiotics to fight ear infections, strep throat, bronchitis, the flu, and so on. I was always sick. While I knew back then that being around young children put me at risk of illness, it’s a risk I just can’t take anymore.
Even today I have to be cautious with my own children because they spend each day at school around tons of other kids. While they may easily get over the sniffles or a cough, it could land me in bed for a week or more. With my kidney function well below 25%, I just can’t risk it. So I take precautions with my own kids, too.
I don’t let them snuggle or lie in my bed if one of them doesn’t feel good — a precaution that kills me, but which has definitely saved me from getting sick. I also don’t eat or drink after them during the school year. And I don’t touch my face or mouth when I’m interacting with them. I wash my hands, sanitize surfaces nightly, and mask up when I’m out.
All of this might sound small or insignificant, but thankfully, I haven’t been sick since I had COVID-19 last year. Small changes have made a world of difference for my health. I need to stay healthy so I can be here for my family. Cold and flu season haunts me every year, but at least I’m prepared.
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.