Hospitals help us heal, but they often don’t help us sleep

4 a.m.: I moan as I squint my eyes and cover them when every bright, overhead light turns on. I’m greeted by a bubbly young phlebotomist who’s here to draw blood. She raises the bed 2 feet, the lift inside making a slow whirling sound as it creeps toward the sky. She has to call another nurse to help. Three jabs later, she’s collected six vials of blood. Lights turn off, and I drift back to sleep.

4:30 a.m.: Whispering from a perky nurse wakes me. “Hi, sorry to wake you. I just need to weigh you and then you can go back to sleep.”

I begrudgingly slide out of bed and stand on the mobile scale, shivering. It’s cold outside my blankets. But I’m done in 30 seconds and climb back to slumber.

5 a.m.: A nurse enters my room with a rolling computer. “Good morning! Morning med time.”

I’d just fallen asleep. I sit up, stick out my hand for the stack of pills, and drink. She smiles and asks, “How are you feeling today?”

“Tired” is all I huff out, as I lie down and throw the blanket over my head. I drift off.

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5:30 a.m.: I hear a loud “knock knock,” and the lights click on.

“Goooood morning, Ms. Jordan!” a loud voice bellows. It’s my lead hematologist. I roll my eyes and drag my weary body into an upright position. He discusses my blood work from 4 a.m. and today’s treatment plans, then asks if I have any questions. Frankly, I can barely process anything he’s said because I’m exhausted. After he leaves, I relax again and slowly sink into the hospital bed.

6:15 a.m.: I wake up to a knock on the door. “Hi! I’m here with transport to take you to dialysis.”

I quit. I haven’t been allowed to do the one thing I’m supposed to be doing in the hospital: resting.

Hitting my limit with limited sleep

I was in my local hospital’s intensive care unit just trying to stay alive. I’d been admitted two weeks earlier with multiorgan failure and missing most of my platelets and red blood cells. I was receiving blood transfusions daily and dialysis every other day. And every single day, no matter how little sleep I’d had, my day started at 4 a.m., awakened to be jabbed with needles, take medications, talk with doctors, and so on. Even when working full time, I didn’t wake up at 4 a.m.

The doctors and I knew I had immune thrombocytopenia, an autoimmune disorder with platelet loss that had been diagnosed in 2018. And my new medical team also saw thrombotic thrombocytopenia, causing tiny blood clots in several organs. But an unknown third component was at work because my red blood cells were being destroyed, which signaled that I had hemolytic anemia and, we soon learned, the ultrarare atypical hemolytic uremic syndrome (aHUS). But I didn’t receive that aHUS diagnosis until week five in the ICU.

One day around four weeks in, my usual morning routine began at 4 a.m. But by the time transport came for dialysis, I’d lost it. I had something like a panic attack, with a racing heart, a blood pressure spike, uncontrollable sobbing, and hyperventilating. The poor guy from transport just stood there like a deer in the headlights. My door window was in front of the nurses’ station, so one of them spotted what was happening.

“I’m just so tired,” I said, sobbing between each heavy breath. “I just want to sleep. I can’t do this anymore.” As I write these words, my chest is getting tight just remembering this day. I was just done. So tired and overwhelmed. So sad and alone. I also deal with mental health issues, which get much worse when I’m overtired. My nurse helped me calm down and called the dialysis lab. She canceled my session for the day and contacted my medical team.

They hung a handmade “Do Not Disturb” sign on my door. No blood draws, no dialysis, no scale, nothing. They kept my lights off and gave me something to help me sleep, and it worked; for the first time in a month, I was able to sleep for more than three hours. Someone finally woke me after 14 hours. It was the best sleep I’d ever had.

After talking with other patients over the years, I’ve learned that many endured similar schedules in hospitals. You expect to rest and heal, but it’s more like a hostage situation. I understand the reasons behind the early wake-up calls. But it makes getting quality rest difficult.

However, the length of time I was in the ICU played a huge role, too. People are always shocked that I spent almost two months there while being diagnosed. ICU delirium, I now believe, was affecting me as well. And even today, almost five years later, I still need lots of rest. And I feel stress when I remember those days when I did without it.

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.