‘Blow, Nicole, Blow’: My Journey With PFTs

Nicole Kohr avatar

by Nicole Kohr |

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“Are you ready for your pulmonary function test, Nicole?” the respiratory therapist (RT) would ask. My answer was always no, I was never ready for the test. In fact, I’d panic over it for at least a week, clinging to the possibility that my lung function somehow had gone up despite my increased cough.

What is a PFT?

Simply put, pulmonary function tests, or PFTs, measure my lung volume and are performed at every cystic fibrosis and transplant clinic to determine if my lungs are improved, stable, or worse. I blow as hard as I can into the mouthpiece, and the test is complete when I’m able to blow three successful rounds.

The respiratory therapist and I usually make small talk as I nervously hack up a lung. Next, I attempt to reinflate my lungs while the therapist preps me with words of encouragement.

“Let’s begin with slow, steady breaths,” the therapist says.

I do so, envisioning a tall mountain, as instructed. That’s when my nerves kick in.

“Now, deep breath in, and … blow, Nicole, blow!”

Then, I blow as hard as I can. Sometimes it works out. Most times it doesn’t. The point being that I must accept the results.

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Tricks and rituals

I tried every trick in the book when I was younger to boost my FEV1, or forced expiratory volume over the first second of exhalation. I’d chug a soda before taking my test. I’d do extra therapy the morning of my PFTs. I’d practice blowing into a toilet paper tube the night before, trying to minimize my throat’s collapse.

Sometimes, while taking the test, I’d push so hard that I’d pee myself. I’ve also fainted, broken into tears, and broken the mouthpiece. In summary, I’d do anything to fool the test because a lower FEV1 meant consequences, such as a hospital admission.

The worst was back in 2007. I was nominated for a Perry Award, better known as the Tony Awards of New Jersey Theater. I struggled the week before my clinic appointment because I had a feeling my PFTs would not go smoothly, and I didn’t want the results to affect my Perry Awards attendance.

I blew as hard as I could at that clinic appointment. Despite my efforts, my lung function had dropped by over 10%. I fell into Lillian, my respiratory therapist, and cried. I was admitted to the hospital later that day.

On the night of the Perry Awards, my doctor gave me a pass to leave the hospital for a few hours to attend the event. I was mad at my doctor for admitting me. The admission couldn’t wait one week? My IVs bloated me, leaving little room in my tight-fitting dress, and mom had to disguise my PICC line with a shawl.

“Why didn’t I blow harder?” I asked myself, as Mom attempted to zip me in my dress. “Why didn’t I bump up to five treatments per day?”

Lessons learned

In my youth, PFTs were just a gateway to bad news. While they’re technically noninvasive, they’d invade my thoughts days before the test. My anxiety has lessened with time. I’ve realized that certain parts of my cystic fibrosis care are out of my control, and my rituals were just an attempt at regaining control. Chugging a soda before a PFT, for example, calmed my nerves but likely skewed my numbers. Post-transplant, allowing my lung function to speak for itself is important.

There is no way to study for PFTs, nor do I “fail” the test if my lung function is down. Transparency between my care team and me has ensured long-term success, even if I require IVs or two-week tuneups in the hospital to receive antibiotics in the short term.

My PFT results seem sporadic, but they’re not. It’s frustrating when my FEV1 unexpectedly goes up and down because I want to believe I can always tell how my lungs are doing. The reality is that a drug like Trikafta (elexacaftor, tezacaftor, and ivacaftor) may boost my numbers without resolving an underlying problem, or I may have a brewing infection.

A revival of “Anything Goes” starring Sutton Foster had a limited run this year in London. One of my favorite songs, “Blow, Gabriel, Blow,” reminds me of PFTs. The first line always makes me laugh: “Brothers and sisters, we are here tonight to fight the devil.” That’s how I used to feel when I started a PFT, like I was going into battle. The character who sings the song explains to the audience that she’d been naughty, but has been saved. This represents me now — I respect the PFT results instead of fearing them.

Next time I step onto the battlefield to perform a PFT, I won’t panic. I’ll just smile and whisper, “Blow, Nicole, blow!”

***

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.

Steven Evoy avatar

Steven Evoy

This article really hit home.. Our daughter experienced the same emotions, fear and anger that you described. She would start worrying about PFTs several days before an appointment.

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Will Jackson avatar

Will Jackson

Thank you Nicole. This article provides a powerful insight for us parents to help in how to support our children. This feels particularly important as they become adults and start to share the burden of care, and the challenge of how to balance life events, with the ups and downs of managing CF.

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