Six years into my aHUS journey, being rare is not what I thought it would be

This month marks the six-year anniversary of my life completely changing due to an ultra-rare disease called atypical hemolytic uremic syndrome (aHUS).

Six years ago, I was blissfully ignorant about just how severe chronic illness can be — the struggles, the unknowns, the inconveniences, the setbacks, and even the little victories. I live with two other autoimmune diseases — immune thrombocytopenia and lupus — as well as hypermobile Ehlers-Danlos syndrome, a connective tissue disease, but those aren’t as dangerous to me as aHUS is.

In September 2020, I went to the emergency room because I’d been sick off and on for weeks. I brought my children with me, assuming I’d get some IV fluids and be sent on my merry way with a doctor’s note for missing work. Boy, was I wrong!

A quick ER trip turned into nearly two months in the intensive care unit (ICU). I walked in thinking I had COVID-19 or the flu, but it turned out that I was dying. My blood pressure was 245/165, my platelets were nearly nonexistent, my hemoglobin was below 5 gm/dL, and I was in kidney failure, liver failure and heart failure. I remember the lead nephrologist telling me, “I don’t know how you drove yourself and walked in here with two kids.”

Ultimately, I endured 18 blood transfusions, multiorgan failure, dialysis, plasmapheresis, countless vaccines and blood draws, a kidney biopsy, a hysterectomy nine months later, and days when I was too weak to eat or walk. It was the worst of times.

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A changed understanding

I saw and heard things in the hospital I wasn’t prepared for. Death lurked around like a fog settling in a valley, and as the only mobile person in the ICU, I saw and heard more than I should have. When I tell people I was hospitalized for almost two months, they’re always shocked. I have friends who had open heart surgery and were in way less time. So seeing others’ reactions is always funny.

I underestimated what leaving the hospital would be like. For starters, I didn’t realize how weak I would be, even though I pestered my nurses every day to let me walk. It’s actually common for patients to lose 20% or more of muscle mass after only 10 days in the ICU. I’d lost nearly 30% of my muscle mass. I was too weak to even step onto a curb.

I left the hospital with 17 medication prescriptions, a dialysis port catheter hanging out of my chest for continued dialysis, nearly two dozen comorbidities, biweekly treatment with side effects, a massive liver hematoma, and permanent multiorgan damage that will follow me the rest of my life.

aHUS has completely changed my views about chronic illness. With the complications, the setbacks, the lifestyle changes, the constant treatments, and even the network of new friends and colleagues that I’ve gained from the rare and chronic disease community, being rare is not what I thought it would be. The bad and good things are all part of my continued journey.

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.