How medical PTSD affects me daily, years after my aHUS diagnosis

I stir from my sleep because something doesn’t feel right. I shiver as the fan’s breeze brushes over me. I’m both cool and wet. I try to lift my arm, but it barely rises because my arms are like lead. I rub my eyes to clear my vision, but the room still appears blurry.

I reach to touch the right side of my chest. I feel my port catheter for dialysis. My skin and muscles sting under my fingers. Now my hand is wet. In fact, I realize the entire right side of my chest is wet — with blood.

I call for help, but only a whimper escapes my mouth. The room starts to spin as my vision shrinks to darkness. And then —

I wake up.

That’s the same recurring nightmare I had every night for months after my near-death experience in 2020, when I spent almost two months in intensive care with multiorgan failure. That’s when I learned that I’d developed the rare disease atypical hemolytic uremic syndrome (aHUS). The ordeal created trauma, which led to post-traumatic stress disorder (PTSD).

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After the trauma

Medical PTSD, like mine, can occur after invasive or otherwise traumatic medical ordeals. Its symptoms can include flashbacks or nightmares of the event, as well as intrusive thoughts, sleep problems, avoidance behavior, concentration and focus troubles, or feelings of being overwhelmed.

That last symptom applied when I finally left the hospital, as I faced 17 medications I had to take three to four times a day, weekly chemotherapy infusions, dialysis three times a week, and one to two doctor appointments each week. I was also feeling immense pain from the large liver hematoma I developed when I fell and punctured my liver.

At the time, I didn’t even know medical PTSD was a thing. But based on a recent study, more than a quarter of aHUS patients develop PTSD, and about half of patients develop clinically relevant anxiety. No one prepared me for that when I was diagnosed.

I experience many PTSD symptoms, including anxiety, fear, tension, and unease. There’s the sweat that develops on my brow when nurses have to fish for a vein. The chest pain as my blood pressure spikes whenever I enter a medical facility. Just the thought of upcoming chemotherapy (my Soliris, or eculizumab, infusions) makes my skin crawl, even though infusions are routine and easy for me now.

I think my time in intensive care, my fall when I was initially released, and the three months I spent alone after I left the hospital are the main reasons I developed PTSD. In the first five months of my illness, I almost died three times, blacked out four times, and had my dialysis port catheter fall out (just like in my recurring nightmare). I had dialysis, plasmapheresis, biopsies, immunizations, and chemotherapy. I punctured my liver and had a ministroke, as well as kidney and liver failure. I also witnessed or heard the deaths of three people.

That all sounds crazy when I see it written in black and white. But the old expression of “time heals all wounds” is a little true in my situation: My reactions to medical situations are slowly getting better. I can now walk into the hospital for my infusions or visit friends without having a panic attack (although my blood pressure still spikes). I can relax and make it through blood draws and IV placements without tears.

I’ve come a long way, and I’ll continue trying to take my PTSD symptoms one day at a time.

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.