How I deal with brain fog and the daily challenges it brings
I wasn't prepared for the cognitive issues caused by aHUS and chemotherapy
Note: This column describes the author’s own experiences with vitamin D. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy or supplement.
“Oh, my God, Shay! It’s so good to see you! How are you?”
With a feigned smile I leaned in to receive the hug I was being given. “Oh God, I have no idea who this is,” I thought. Her face was familiar, and she clearly knew me, but I had nothing.
“Hi! It’s so good to see you, too! Umm, what have you been up to? How is everyone?” I asked questions strategically, hoping her responses would give me clues as to who she was.
As our casual conversation continued, the woman told me about her children, her church, and a promotion at her job.
Bingo! I’d met her through my best friend. I felt a little better in the moment, but this situation is something I deal with regularly. Memory loss, brain fog, and lack of focus have been daily issues for me since I nearly died from a rare disease.
Cognitive challenges
In late 2020 I was hospitalized in the intensive care unit for nearly two months and almost lost my life. I’d been brushing off symptoms for months, and by the time I finally went to the emergency room, I was in multiorgan failure. I endured testing, biopsies, hundreds of blood draws, dialysis, plasmapheresis, 18 blood transfusions, immunizations, and even chemotherapy, which I still do today.
After five weeks of mystery, I was diagnosed with atypical hemolytic uremic syndrome (aHUS). My medical team slowly prepared me for the future medical possibilities: permanent damage to my kidneys and other organs, uncontrolled hypertension, dialysis, hemolytic anemia, and chemotherapy for the rest of my life.
But there’s been so much more. I was already experiencing symptoms my doctors hadn’t warned me about. Thankfully, I’ve since found Facebook support groups full of other aHUS patients and their families, which are a helpful resource when complications arise.
I quickly learned that this disease can have cognitive effects, such as diminished focus, concentration, and memory. aHUS News notes that brain fog is a common complaint among patients with kidney-related diseases. And since 80% of aHUS patients experience some type of kidney damage, according to the aHUS Alliance, it makes sense that many of us would experience brain fog.
The effects on my concentration and focus are frustrating, but the most concerning cognitive issue for me is memory loss. My short-term memory was affected first. I’ll walk into a room and have no idea why I went in there. Or I’ll receive a code on my phone that I need to enter on another device, but I just can’t remember it. I was even given a memory test at my recent yearly Medicare assessment, and I failed miserably. I’ve also noticed that my chemotherapy treatment makes my brain fog worse.
And now my long-term memory is taking a hit as well. I’m losing memories from large gaps of time. I remember major events, but almost nothing of the surrounding days or months. I don’t remember how I met many of my friends, which can be embarrassing and make it seem like I don’t value our friendship.
Another complication of brain fog is that it can affect employment, school, child care, household chores, driving, and so many other everyday tasks.
Experts offer several recommendations for dealing with brain fog. Personally, I’ve noticed a correlation with my vitamin D levels, which tend to be extremely low. When I take a prescription-strength dose of vitamin D (50,000 IU once weekly), I notice a huge decline in my brain fog.
Unfortunately, my kidneys don’t function well on such a high dose of the vitamin, so I can only take it for a couple months at a time.
Brain fog is a strange ailment that reminds me daily of my age and health struggles. It affects every facet of my life. But it’s nice to know that I can achieve some semblance of normalcy with something as simple as vitamin D supplements.
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.
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