Working through the trauma of pulmonary function testing

I can still envision it: The top half of the wall was painted a shade of beige, while the bottom half was covered in blue wallpaper with white stripes. That’s how I remember the room where, at some point during my childhood medical appointments, I’d step into a clear box that had a mouthpiece connected to a tube. The tube went through a small hole in the box and connected to a computer, which measured my lung health as part of a pulmonary function test (PFT).

The machines used for PFTs have changed over the years; now they’re often handheld devices or connect to a laptop via Bluetooth. However, the clear box is still the first thing that comes to mind whenever I think about PFTs.

As an adult with cystic fibrosis (CF) — heck, even as a child — I always experience a bit of anxiety before a test. If my breathing has worsened, that could indicate any number of issues, from an underlying lung infection to more mucus in my lungs. It could also mean, as it has at times, that my asthma is getting worse and I need to find a way to combat the issue.

Regardless, I must undergo PFTs, as it’s the best way to measure my lung health.

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My old anxiety resurfaces

During a recent appointment, I got to the office about 20 minutes early, which was a little surprising considering that traveling from New Jersey to New York City is never a breeze. Since I arrived early, I was told that I’d need to do a PFT, even though I’d done one the night before using the home spirometer the Cystic Fibrosis Foundation sent out during the peak of the COVID-19 pandemic.

I was brought into a room that I’d never been in before, with a medical professional I’d never met, and suddenly, I was looking at a setup that was virtually the same as the one I’d dealt with as a child. This time, there was no clear box, but everything else was there.

I became terse and tense, and just wanted to get the whole experience over with. At first I thought it was because I’d done a PFT the night before. These tests are tiresome, and this one was longer and more extensive than the one I’d done at home the previous night.

As I thought about it more on the ride home, though, my annoyance subsided. Overall, the appointment had gone well. My doctor was pleased to see small improvements in my PFT scores after three weeks on Alyftrek (vanzacaftor/tezacaftor/deutivacaftor), the new CFTR modulator.

Somewhere between FDR Drive and the Holland Tunnel, it hit me: The anxiety I’d felt as a child about being enclosed in that box had stayed hidden for years, but was now reemerging. The claustrophobia and stress were now manifesting as anger.

As a child, I tried to hide my anxiety by playing it cool, even nicknaming the box “the spaceship.” But my fear of the box and my PFT results never left me. What child — or adult, for that matter — wants to be locked in a box and forced to breathe hard and fast? It can be terrorizing, even if it’s helping us manage our health. And during my childhood, we were all prisoners to the technology of the late 1990s and early 2000s.

The next day, I called my doctor’s office because I had a question I’d forgotten to ask the day before. Before I hung up, I asked the secretary to let the person who administered my PFT know that I was sorry for being intense during the whole test. She was just trying to do her job while I was working through some of the traumatic memories I’d buried. Those memories can stay in the box.

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, and are intended to spark discussion about issues pertaining to cystic fibrosis.