Returning to the Clinic Means Lung Test Anxiety Again

Kristin Entler avatar

by Kristin Entler |

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Through the sliding glass doors and down the stairs of the medical plaza, the midday news played — muted, but with captions running — on the TV mounted across from the reception desk. The water fountain hummed.

Where I live, case numbers from the COVID-19 pandemic remain high, and medical facilities are overwhelmed. My doctors regularly work shifts on the COVID-19 floor, as needed. My clinic is still using telehealth to reduce the risk of exposure to the virus, with patients coming in a few days before their scheduled appointment to perform their spirometry test, which measures pulmonary function.

Clinic visits and hospital stays are routine for most, if not every, cystic fibrosis patient. But as with so much else, the pandemic has changed how we access care. One thing I didn’t fully anticipate about returning to an in-person setting was remembering how to manage clinic anxiety and stress from the pulmonary function test (PFT).

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I’ve been seeing my new care provider via telehealth to check in since moving two states away last year. While a home spirometer that I got when I was still going to my children’s hospital died a long time ago, my doctor and I didn’t think it was necessary to meet in person after I started Trikafta (elexacaftor/tezacaftor/ivacaftor) treatment and began to show improvement.

But the world has been slowly getting back to normal in the nine months the COVID-19 vaccine has been in circulation, so it was time for me to get back on the horse — and back to the clinic.

Pulmonary function blues

I have always had what I consider to be a sort of performance anxiety when it comes to completing a PFT. The clinical number has not always reflected how I’m doing personally. I am easily tipped off balance, and the results of my PFTs often felt like chance more than substance.

This depends on the context, of course. While the test doesn’t always feel right, I have learned over the decades those times when it does reflect how I’m doing. I know my signs of a flare-up and how they coordinate with a low PFT. Or if my PFT is uncharacteristically low, I take it as a sign that I need a tuneup or an adjustment in my treatment plan.

Over the years, I’ve started thinking of the PFT as a puzzle piece that helps provide a complete image of my overall health. This is different from the clinical view, which grants the PFT the top spot in the hierarchy of indicators. That’s even how I used to think of it myself. Yet I still can’t shake the feeling that I have to get a good enough number on the lung function test.

In the waiting room, I tried to think about anything but the PFT that I was waiting for. A sign read “Terminal B” with an arrow that pointed farther up the hallway. It made me think about the design of buildings, how hospitals so often feel like mazes, or airports without departures. And yet, there are arrivals in the maternity ward.

At the end of the day, my first-second forced expiratory volume result was lower than I had hoped for. As I walked into the parking lot, I felt the fall in the air and reminded myself that the ragweed has begun to bloom. I’m walking 3 miles a day without much of a cough, something I once believed was impossible. I can feel air touch the deeper pockets in my lungs. The PFT is just one number in a slew of factors. I am healthier than I have ever been.

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

Comments

Paul avatar

Paul

Well written! I have not been doing PFT in hospital for years now, I must admit. I simply refuse to, and my home pft machine is good enough for me. It produces great files with all the data and graphs, and I can send in to my doc in pdf-form. We are both very satisfied with this. They don't cost the world (about $ 150) and it saved me a lot of driving up and down hospital. I agree, PFT's are only a small part of the whole picture medically speaking. Hospitals however gain a lot of income by tests like this, so it's also a business case. Patients have to be vigilant and only comply to what they want.

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Judy Moreland avatar

Judy Moreland

Kristin,

I loved this! States how I feel pre-clinic visit, and especially waiting for the PFT. My CF clinic has appts on Mondays and Tuesdays; the weekend before is my "worry weekend." There was a worry week last week.

I was supposed to go to clinic last Monday, the 4th. Just felt too stressed. (It's been a tough year. In addition to covid, my husband has a lot of arthritic pain, and our dog has turminal cancer.) So I got a postponement until 10/26. I don't usually do this, so my CF nurse, a lovely person and very capable nurse, agreed to 10/26. I hope I will feel less stressed the weekend before this new date.

Thanks for sharing, Kristin.

Jude

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