With Pulmonary Disease Comes Brain Fog, and It Sucks

Confession: I failed kindergarten. It was open house night and my teacher showed my parents a line of class self-portraits. There were probably some overly large heads and outlandish skin colors, but you’d be able to tell they were drawings of humans. Then my parents saw mine: a tiny, scribbled line. Maybe I was drawing myself as a fetus? Maybe I was ahead of the curve and practicing abstract art? I digress. The “art” was disappointing enough; my parents and teacher held me back.

“Developmental delay,” was the phrase tossed around. Delayed by CF-related malnourishment.

Another confession: In my senior year of college, I went around making fun of my sister by telling people that she was the one who failed, not me. I thought that was the truth. Realizing I was making fun of myself the whole time was humiliating. I’d forgotten a big chunk of my own past. Oh, yeah, brain fog is actually what this post is about. Read on.

A moderately ambitious start

Growing up, I wasn’t the fittest dude. But I could think, and that was precious to me. Tyrion Lannister, who had an undependable body, said: “I have a realistic grasp of my own strengths and weaknesses. My mind is my weapon.”

When I flunked kindergarten, perhaps my subconscious drove me to undo my failure by being the best student possible. I enrolled in all the history and English honors courses and read nonstop. Librarians rarely saw my face — always hidden behind towering stacks of books. In senior year, I was voted “Most Randomly Knowledgeable” for the yearbook — a point of pathetic pride.

College was similar. I split 14-hour days between my journalism and history studies, plus newspaper and magazine jobs. History and journalism were, and are, my “things.” I love memorizing facts, names, and timelines. Recalling little-known tidbits brings me a thrill similar to when a dude watches his favorite football player score a home run or whatever.

Booo, brain, booo

Near the end of college, my mind faltered. Between anxiety, malnourishment, and a low oxygen saturation, thinking became … difficult. Memory escaped like water trickling through cupped fingers. I’d write reminders on my hand but accidentally wash them off without realizing, or I’d read phone alerts and forget them seconds later.

Everything was excused by “oops, brain fog, hahaaa” — most friends knew about my CF. But the excuse wasn’t cute when I struggled to keep up with work and school, and offended people by forgetting things they’d shared with me.

It was devastating. A history buff and journalist with awful memory? Not good.

Maybe I’ll try a brain transplant next

I expected my brain fog to improve once I had my lung transplant in January 2017, but it actually temporarily got worse, thanks to an anti-rejection medication called Prograf (tacrolimus), which severely impairs memory. My “brain fog” excuse became “Prograf brain” — a popular phrase thrown around in the transplant community. By the time I’d read a full sentence, I’d forget what the first half of the sentence said. Not exaggerating. It was that bad.

I trained my brain by memorizing prescription and phone numbers, statistics, and quotes. That strategy helped, but not as rapidly as I wanted. I had panic attacks while applying for jobs because I was so sure I’d goof things up because of my brain fog. Somehow, I bagged an editing gig with the company that owns this website, BioNews Services. I feel my mind steadily strengthening now that I’m putting it to real work. It’s sharp … er.

Despite this recovery in cognitive function, I’m no longer thinking along the lines of Tyrion. I have new strengths and values. I boulder, do yoga, cook, and travel. They give me as much of a thrill as history and journalism do. I only treasured my intelligence so much because my body consistently failed me. Post-transplant life has been amazing, and now my body is strong. While I still value a sharp mind, trading some of that juice for a powerful body is undeniably worth it. A side note that’s actually super important: I now value being loving over intelligence.

What’s the purpose of this piece? I forget. But if you struggle with brain fog or Prograf brain, know that it can get better, whether through a resharpened mind, recovered health, or shifted perspective. Keep training your brain and be patient. (Click here for “brain trainers.”) I also encourage writing. It doesn’t have to be beautiful or smart or shared. Write to exercise your brain while also benefiting from what I call “word vomit therapy.” I began writing regularly in September 2016 and attribute my sanity’s stability to blogging while awaiting transplant. Practicing other art forms can have similar effects.

Not everyone has it in them to write or create, and sometimes we can’t control cognitive decline, for various health and mental reasons. If that’s the case, I hope you can learn to value other parts of your life.

Follow my adventures on my Facebook Page, Adamantium Joy.

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Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.