I remember aHUS, 6 weeks in the ICU, and 17 new medications

There I was five years ago, sitting in my car much longer than I should have. Just the thought of walking to the pharmacy was daunting, nearly panic-inducing. The longer I stared at the Walmart entrance, the farther away it got. I just wanted to go home, bathe, and get in bed.

But I had to pick up my 17 new prescriptions.

I’d just been released from the intensive care unit (ICU) an hour earlier after spending almost six weeks nearly dying from a rare disease called atypical hemolytic uremic syndrome (aHUS), along with a few other rare diseases. My immune system had gone crazy and was attacking each element of my blood production. Tiny blood clots in my vital organs nearly destroyed my kidneys, liver, and uterus. The last six weeks had been very difficult.

I was weak and exhausted. I didn’t know ICU patients could lose 20% of their muscle mass in just 10 days. I’d been there for more than 40 days, and had even fallen once during that time, so I knew walking into Walmart, standing in line at the pharmacy, and going back to the car was going to be an ordeal.

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But I did it. I picked up my new meds and made it home. I was so proud and felt like I’d accomplished so much. That is, until I dumped out all 17 of my new medications. I just stared at the pile of pills like a deer in the headlights. I knew I’d have a lot to take, because I’d been taking most of them in the hospital. But in the ICU, someone brings you your medications, timed to perfection, each time you need them. I was someone who rarely took medicine at all and now here I was, tethered to 17 of them, plus dialysis and a monoclonal antibody infusion with chemotherapy-like side effects.

I quickly felt overwhelmed. I had to figure out a way to organize and remember the morning meds, lunchtime meds, evening meds, and bedtime meds. Plus, these were all wrecking my gut health, so I knew I’d need some kind of probiotic and prebiotic, too. But what’s one more medication? I thought to myself then.

The words of one of my nurses rang through my head like a big, fat “I told you so.” She had tried to talk me out of leaving the hospital. She asked me hard questions: “How are you going to keep up with your meds?” “Do you have help at home to get up your stairs?” “Do you have any help getting to and from appointments?” I had no plans and no support, but I truly thought I could manage. But one trip to the pharmacy, followed by crawling up my stairs to my house absolutely humbled me. I should’ve stayed in the hospital longer.

The next day, an issue with dialysis and missing my medications led to another fall that punctured my liver and landed me right back in the ICU.

I was devastated about the setback, but deep down, I was jumping up and down with joy, almost excited to be back because I knew people would take care of me and keep track of my medications for me.

That was five years ago.

These days, I take nine medications, instead of 17. A huge difference, much more manageable and less confusing. I even found a local pharmacy that puts most of my medications inside a sealed organizer. There’s little boxes for each time of day, and the corresponding medications are labeled and inside each packet. What a godsend.

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.