My recent pulmonary function test results were disappointing
PFT values don't always align with how I'm feeling
Frequent appointments and testing are part of life with idiopathic pulmonary fibrosis (IPF). I’ve been living with IPF for eight years now, but the number of those appointments and tests can still overwhelm me, especially as I’m a young adult trying to prioritize my career.
These visits not only take up a lot of time, but also affect me mentally. Often I feel anxious ahead of pulmonary function tests (PFTs), which measure how well my lungs are working, because few options are available to slow my disease progression.
I currently take Ofev (nintedanib), an anti-fibrotic medication used to treat IPF. There’s only one other anti-fibrotic drug available to me, and I had a negative reaction to it. I worry what will happen if my PFT shows a significant decline in my lung function.
But there’s another difficult aspect of these appointments: when my test results and doctors’ recommendations aren’t what I’d hoped for.
When test results feel invalidating
Following my recent knee surgery, which required anesthesia, I needed PFTs and a follow-up with my pulmonologist. My mobility has been significantly reduced since the surgery, so my doctor wanted to ensure I didn’t have any fluid buildup in my lungs.
At the time of my appointment, I had a slight cough, so I was happy my pulmonologist was taking a look. Thankfully, there wasn’t any fluid in my lungs, and my PFT values hadn’t changed much since my last appointment.
However, the results left me pondering what could be causing my cough if my values hadn’t changed much.
As a rare disease patient, I’ve had to learn to (informally) interpret my test results. I love the line from the movie “Five Feet Apart” where the main character says that cystic fibrosis patients “are practically doctors by the time we’re 12.” It makes me laugh because it’s true.
Because I know how to interpret my PFTs, I reviewed the full results and noticed that a few of the values were lower than normal. I asked my pulmonologist about that, and she explained that doctors, when evaluating a lung function test, use the cumulative average of the two best scores. This average is used to determine a patient’s baseline.
That makes sense for when I’m feeling well, but when my symptoms are better explained by my worst values, having my best ones documented can feel invalidating.
My newfound understanding left me feeling disappointed, as the recorded values didn’t seem to reflect my health status. I look forward to my next post-op follow-up appointment, when doctors will try to determine if my cough is related to the surgery, IPF, or another respiratory issue.
How do you deal with disappointing appointments and medical news? I’d love to hear from you in the comments.
Note: Pulmonary Fibrosis News 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 Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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