What is plasmapheresis? How the once unknown word became common to me

Plasmapheresis is a word I’d never heard before October 2020. I’d heard of people donating plasma; in fact, I had a cousin who did it for money when I was growing up. But I had no idea what plasma was used for. Little did I know it’d play a large role in saving my life.

I learned a lot of new and complicated words as I traversed my medical ordeal, which began that April when my family had COVID-19. Things peaked by September, when I almost died from what we later learned was atypical hemolytic uremic syndrome (aHUS).

A month later, with 18 blood transfusions, dialysis sessions, and multiple tests behind me, my lead nephrologist arrived in the middle of the night. It was about 1 a.m., and I was in the intensive care unit, awake and playing on my phone, when I heard a commotion at the nurses’ station. A few seconds later, the nephrologist, Dr. Prakash Prabhu, was storming into my room, followed by my two nurses.

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Wearing navy blue pinstriped pajamas and a long robe, he paced back and forth, rambling medical words I’d never heard. Basically, he’d had a breakthrough in my medical mystery. His guess was that I had aHUS, but it would take over a week for the test to confirm it. Until then, he wanted me to start plasmapheresis.

“Call Red Cross. They can bring us the machine to do her plasmapheresis,” he ordered the head nurse.

“It’s almost 1 a.m.,” she meekly said in a soft and nervous voice.

“I’ll call them myself,” he said as he left to grab his phone. He was ready for me to start plasmapheresis, which separates bad plasma from blood before replacing it as a way to remove troubling antibodies, abnormal proteins, or other harmful substances.

Within an hour, a young man from the Red Cross arrived with a huge machine that looked like the Dalek aliens from “Dr. Who,” complete with lights, spinning knobs, dials, and tubing. What had I gotten myself into? Luckily, the machine could access my dialysis port (venous catheter), which simplified the process.

Since my doctor suspected I had aHUS, he wanted me to start plasmapheresis to clean out the antibodies that were destroying my blood. I was a little nervous because I had no idea what to expect. Compared with what I’d been through, this process seemed pretty simple. Boy, was I wrong.

He fired up the machine. I could see my blood in a tube, being pulled out of my body so the machine could clean it. The process seemed similar to dialysis, which I’d been doing every other day. But I noticed I felt cold much faster with plasmapheresis. (Blood being removed from your body makes most people feel cold.)

I began to shiver and my teeth chattered, so I pulled my blankets up to my chin. My nurse noticed, so she got me a heating pad. Once I warmed up, I began to relax. Then I had a strange symptom I didn’t expect: hallucinations, which are not a normal side effect of plasmapheresis.

In my case, the technician said I might’ve been hallucinating because I was much more medically fragile than most people undergoing plasmapheresis. Later, as the technician and two nurses chatted among themselves about why I was seeing things, I remained on my own magical ride.

I felt like I was moving forward quickly, as if I were on a roller coaster. The hallucination was so vivid that I felt like the hair framing my face was blowing in the wind and brushing my cheeks. I began to see swirls of neon lights; green, orange, pink, and purple swirled around me, as if I were rolling through a light-filled tunnel.

I knew I was hallucinating, but I couldn’t pull myself from the fantasy. Then without warning, my ears got hot and my scope of vision began to shrink. I forced my eyes to open wider, thinking that would fix it, but my scope got smaller. I looked over at the technician, who already looked concerned, and said, “I don’t feel good.”

Just as I spoke, my heart monitor around my neck began setting off alarms because my blood pressure dropped below 60/25. A drop in blood pressure is a normal symptom of plasmapheresis, but maybe not this low. The technician jumped to his feet and began shutting down the machine.

Shortly after the machine stopped, my blood pressure went up.

That session was definitely a wild ride, but it was the first of several. I alternated dialysis and plasmapheresis each day for just over a week, until my aHUS diagnosis came back and I began chemotherapy.

Plasmapheresis truly played a role in saving my life. Removing those bad antibodies from my blood gave my body the break it needed from this awful disease. I think it helped my kidneys rest and heal, too, enough to get off dialysis four months later.

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.