I Try to Ignore CF But It Won’t Let Me

I have enjoyed pretty good health, so I have tried to keep my cystic fibrosis on the back burner while I pursue my passions. Sometimes, though, CF intrudes, reminding me that it’s still here.

July 27, 2023 | 9 min read
A headshot of Erik Stinnett smiling
Erik Stinnett
Erik Stinnett smiling and standing in front of a waterfall with his camera

When I was in seventh grade I started having health issues. I was losing a lot of weight no matter how many calorie supplements I took or how much food I ate. I had all-night coughing fits that kept me from sleeping and left my chest and stomach aching, and I was generally extremely fatigued. We ended up at the Arkansas Children’s Hospital after many unsuccessful attempts at diagnosing me with something, and it was there that I got diagnosed with cystic fibrosis.

The irony was that I had done a research project on CF for a science class just weeks before. I remember thinking “huh, this sounds familiar,” when looking at signs and symptoms of the disease. I also vividly remember being shocked at the life expectancy of people with cystic fibrosis. So, as expected, 13-year-old me did not take the news very well when the doctors came in with the results of my sweat test. I was shocked: my vision went blurry, my hearing was muted — a very movie-esque reaction. Everything I had researched about CF only weeks before came rushing back.

The doctor told me to please not Google anything since the internet was not great with case-by-case situations. Uh, too late! My care team and the hospital were great and were immensely helpful in educating me about my newly identified condition and helping me get healthy and — after two weeks in the hospital — I was discharged. 

The years since have been relatively normal. I finished junior high, graduated high school, and am now only one semester away from graduating college with a bachelor’s degree in computer science. I’ve made friends, mostly kept my condition in check, and picked up new hobbies. 

One such hobby, astrophotography, has taken up much of my time (and wallet) in the four years I’ve been doing it. Now, I’ve always been into astronomy. In fact, for the longest time, I dreamed about being an astronaut. In 2019, I used an old telescope I got for Christmas when I was a little kid to attempt to — with some success — take photos of the moon by pressing my iPhone camera against the eyepiece. The results, at least in my mind, were great! The photos were blurry and out of focus but hey, moon photos! That night started the astrophotography journey for me. The years after that have been spent learning about, investing in, and practicing astrophotography.

Astrophotography provided a great escape from the daily routines and struggles during COVID-19. I often spent all night outside alone with my telescope. I loved sitting in the quiet with just the stars, away from everything wrong in the world. I soon picked up a DSLR camera and fell in love with Milky Way photography. I loved — and still love — traveling around Arkansas in the dead of night, setting up a camera and tripod, and shooting the Milky Way: just me, the stars, and that (hopefully) possum a few feet away.

However, in February 2021 I experienced my first “real” challenge with cystic fibrosis. I was minding my own business when I felt a sharp pain in my chest. I didn’t realize it at the time — it felt like a pulled muscle, but after three days I went to my college’s student health center and, lo and behold, they told me my lung had collapsed. Four days in the hospital and a chest tube later, I was good as new!

Or at least I thought. 

A month later, while jumping rope, I felt the same pain. I couldn’t tell you how many expletives I thought as I made my way to the emergency room. The doctors recommended a surgery so that this wouldn’t happen again. I, however, was adamantly opposed to the procedure (partly because the part of the college semester I was in was intense). So, after another half-week and a chest tube, I was able to return home and finish my semester. I didn’t express how I felt to other people very well. I acted nonchalant about it and I often joked about how I’m “only a few scars away from having a constellation of chest tube scars on my side.” Though, in truth, these back-to-back experiences were scary. I was terrified of doing anything too strenuous for fear that my lung would collapse again. However, I learned to trust that these events wouldn’t repeat and, gradually, I got back into exercising, exploring, and enjoying challenging myself.

On the topic of challenging myself, I picked up another hobby: caving! In spring 2022 I was on a field trip to the Buffalo National River with my college class. While there, the now president of the Cave Research Foundation (CRF), Dr. Kayla Sapkota, told us all about the caves in Arkansas. Everyone else was appalled: who wants to spend all day underground in tight spaces with bats and mud and the dark? Well … me, apparently! I mean, I already spend a lot of time in the dark, why not add tight squeeze to the resume? 

I was able to join Kayla and her group on the next caving trip where we spent all weekend bushwhacking around the woods and counting all the wildlife we found in the caves. I loved every minute of it. The hours spent hiking, climbing, crawling, and exploring the Ozarks and the caves beneath it was exhilarating and felt like a real challenge. 

Unfortunately, my body apparently did not agree with my enthusiasm. Driving home that night I felt the familiar pain in my chest. Ol’ righty really did not want to stay inflated, apparently. Cue hospital visit number three. This time, I wasn’t given much of a choice about the surgery. I spent two weeks in the hospital, mostly in recovery after the surgery.

I again lost faith that my body could keep up with what I wanted to do. I mean, I thought I was in good shape: I ran, lifted weights, and kept up with my calories and blood sugar, and yet I still felt extremely limited by my CF. For once, I really felt like CF defined me. Thankfully the doctors told me that my lung would not collapse again thanks to the surgery, but I still did not trust it to cooperate. Even though I loved my time spent caving with the CRF, I did not cave for a year, in fear of a recurring incident.
 

After three pneumothoraxes, I was finally confident in my body again in February 2023 when I rejoined the CRF in their monthly caving expedition, exactly two years after my first lung scare … and it went great! It felt amazing to be back out in the wilderness with other like-minded people. I’ve been caving almost every month since February, for a total of six trips underground, some lasting more than 12 hours. I finally feel as if my body is cooperating with me and I enjoy testing my limits, squeezing into caves, and exploring parts of the world that most people don’t know about. 

I want to keep CF in the background of my life as much as possible. I don’t tell many people about my condition because — as I suspect many CFers can relate — the moment you tell someone about it their whole demeanor can shift. Suddenly you’re fragile, sick, and in need of help. I don’t want to be defined by my condition. I don’t want to be known as “the dude with cystic fibrosis.” I want to keep that in the background and be known as the “caver” or the “astrophotographer” or hell, even “that crazy guy who likes the dark and tight spaces.” I love what I do; they’re not just my passions but they’re also escapes from the daily struggle, either into the stars or beneath the ground. 

Life with cystic fibrosis is not easy. Anything out of the ordinary, from a dip in weight or lung function to even a day when your breathing isn’t as free as usual, can send off alarm bells in your mind and is a constant reminder of your condition. However, as hard as it is, I try to not let this define who I am, not to myself nor to others. I want to be known — not by my condition — but for what I love to do, and I want control over what I’m known as: caver by day, photographer by night. 

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Topics
CF-Related Complications
A headshot of Erik Stinnett smiling

Erik is a senior computer science student at the University of Central Arkansas. When he’s not in school, he often can be found outdoors, taking photos of the Milky Way and our universe by night or underground, caving by day. An avid photographer of all things natural, Erik tries to photograph his adventures as seen in his photo gallery. When not outdoors, Erik is often with his friends playing video games, working on programming projects, or planning his next adventure.

Recent Community Posts
Cycling Across America
Blog | 5 min read
Reflecting on 50 Years of Volunteering
Blog | 5 min read
How My Brother Inspired Me to Give Back
Blog | 7 min read