Navigating Immunosuppression in a World Full of Germs
COVID-19, the flu, a simple cold — the threats are everywhere
I can’t think of a worse personal fear then having two autoimmune diseases during a pandemic. Every cough I hear in public sends me into a panic. I hold my breath while walking past someone wiping their nose on their sleeve. I’m filled with anxiety when someone behind me in line coughs. This is what my life has been like since 2020.
I already had lupus when the world learned about COVID-19. I was “healthy” but often caught colds, strep throat, or the flu. So I was wearing a mask in public before wearing masks was even a thing (which prompted strange looks, of course).
Regardless, my family still caught COVID-19, and while I had a mild case, I didn’t realize it would trigger an extreme immune response in my body. After declining in health for months, I ended up in the ICU for nearly two months with multiorgan failure.
I was diagnosed with atypical hemolytic uremic syndrome (aHUS), and the only treatment for this rare disease is immunosuppression via one of two chemotherapy drugs — Soliris (eculizumab) or Ultomiris (ravulizumab-cwvz). aHUS causes my immune system to attack my blood, so I currently take Soliris.
Waging war on germs
This all began during the height of COVID-19. I have two young children who often carry germs and constantly have the sniffles. I also worked with children as an assistant director at a preschool. I already had issues with getting sick from time to time, but now getting sick could be a death sentence!
For many, aHUS is triggered by a major medical event that stresses the body and causes the initial attack. At any point, a medical event could trigger another attack. Thankfully, chemo keeps my immune system nonexistent, which greatly reduces the chance of this happening again.
But with no immune system, I’m at risk for every type of common illness — COVID-19, a cold, strep throat, the flu, pneumonia, stomach bugs, and more. I’ve had to deal with all of this since my diagnosis. My children might catch something and be sick for a couple of days, but it’ll take me a week or more to recover.
This happened when they caught COVID-19 a second time last January. The virus that causes COVID-19 ran through their school like wildfire. The school was short-staffed, so they shut it down for four days. My boys were very ill but bounced back after three days. I caught it by day three and was gravely ill for 10 days. I ran a 103-degree fever and was delirious and confused the entire time. I lost 25 pounds in six days.
My body had no means to fight the disease. Plus, I had to battle red tape to get the emergency monoclonal antibody infusion sotrovimab, which took nine days to be approved. It was one of the scariest things I’ve experienced during my medical journey. This round of COVID-19 made me feel sicker and weaker than when I was dying in the ICU.
My boys were recently sick with the flu, but thankfully I didn’t catch it. Over the years, I’ve learned a few tricks to lower the chances of catching their crud. For example:
- I don’t eat or drink after them.
- They’ve been taught to cover their mouths when they sneeze or cough.
- I sanitize constantly.
- I don’t touch my face or mouth unless I’ve washed my hands.
- We stay out of doctor’s offices and hospitals at all cost.
- We constantly wash our hands.
- Sadly, no snuggling in my bed if they’re sick.
That last one is hard, but it’s one of the most important rules when they’re sick.
How it affects my children
I feel guilty about how my immunosuppression affects my children’s lives. Before I was diagnosed, festivals, trampoline parks, birthday parties, hands-on museums, and pools were part of our routine. But now with the risk of illness, I find myself keeping us at home often. And my boys definitely notice that we don’t go out much. But my oldest says he understands that I “could get sick again and die.”
The mom guilt is huge. They’re missing social experiences. They deserve to be kids and have fun. We do fun things at home and at parks, but I can’t help feeling like this affects their social and emotional growth.
It’s hard not to live my life in fear, and aHUS has taken so much from me already. But I try to tell myself that my children are learning from these major life adjustments.
They’re learning compassion and empathy for others — which is one of the hardest and most important things to teach. And they’re learning how to care for someone else, along with healthy habits and how germs work.
Immunosuppression, autoimmune diseases, and chronic illness in general can be terrifying during a pandemic and cold and flu season. But I continue to follow my safety protocols and take things one day at a time. I’ve made it this far. And having survived what I have is nothing short of walking on water.
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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