My lengthy ICU admission felt like being trapped in a horror movie

The slow, steady beep of my heart monitor echoed like a ticking clock. Sometimes the noise seemed to move farther away, while at other times, it seemed right next to my ear. Every 30 minutes there’d be a loud tick, followed by the hissing of my blood pressure cuff inflating.

As it inflated, I’d feel the tingle of pins and needles in my fingertips. Once it finished, alarms would sound on the blood pressure monitor, as well as the heart monitor I had to wear. My blood pressure had been uncontrolled since I was admitted to the intensive care unit (ICU) a few weeks earlier. It was September 2020, and though I was slowly dying from multiorgan failure, doctors had no idea why. After six weeks, though, I received the crushing diagnosis of atypical hemolytic uremic syndrome (aHUS).

But today’s story is more about my ICU admission than my journey with aHUS.

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An unexplained event from my ICU stay still leaves me wondering

When I arrived at the hospital five years ago, I felt sick but had no idea what awaited me. I’d assumed I had COVID-19 again and would simply get a doctor’s note to stay home from work and rest for a couple days. But no, I was admitted and started emergency dialysis that night. Beyond the birth of my children, I’d never been admitted to a hospital. I didn’t even realize I was in the ICU until a friend visited me a few days later.

Being in the ICU for an extended period of time can cause serious and even permanent issues. One of the first things I experienced was hearing things that weren’t there. According to Johns Hopkins Medicine, 80% of ICU patients experience delirium, or “an altered state of consciousness, characterized by episodes of confusion.”

That was a fun “gift” — as if a rare disease weren’t enough! The auditory hallucinations made me feel like I was losing my mind. Hours and days blended together. Coupled with the cries and moans from other patients, some of whom died, and from their family members, I sometimes felt like I was trapped in a horror movie.

I also shivered uncontrollably and lost muscle mass, which are other common ICU issues. I pushed the staff to let me walk around, as I could practically feel my muscles atrophying. “Intensive care patients can lose 20% of their muscle mass in just 10 days, which can contribute to long-term disability,” University College London News reported in 2018. And I was there for weeks. I grew so weak that I collapsed after trying to step up 4 inches onto a curb.

My ICU experience was definitely strange. The things I saw and heard, real or not, will always be buried in the depths of my mind.

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.