Why it’s important to ask doctors questions about IPF
It makes me a proactive patient, not a difficult one
Living with a chronic illness takes commitment, patience, and endurance. A lot of energy is required to manage your disease, medication schedules, procedures, and medical equipment. For me, equipment management means keeping my oxygen tanks in working order, as I’ve relied on them to breathe since I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016.
IPF is a progressive, life-threatening lung disease that eventually steals your ability to breathe. Unfortunately, few doctors are familiar with it because it’s a rare disease, so patients often have to source credible information themselves. I believe we should ask a lot of questions about our findings.
I’ve learned a lot in the nearly seven years I’ve been living with IPF, and I consider myself a strong advocate for my needs. I question the purpose of medications and weigh their benefits and risks. I want to be aware of any short- and long-term benefits of changes to my oxygen, and I want to understand the purpose of outpatient procedures. While some believe I shouldn’t question everything, I believe it’s important to do so as long as I’m respectful.
Seeking a better understanding of IPF
Back in November, I shared that I was anxious about the cardiopulmonary exercise test (CPET) I had scheduled for early this year. The test would provoke my IPF symptoms to see how my heart and lungs work together during exertion. I finally did the test a few weeks ago, and it was difficult for me to complete.
In addition to the exercise itself, the process involves pulmonary function tests (PFT) before and after the CPET. It makes sense to get a comparative baseline of values, but I found myself asking questions after my seventh PFT.
The technician explained that there were some variances in the PFTs I’d completed after the CPET, which were done immediately after the test, then after two, five, 10, and 15 minutes. Variances made sense, because I was most breathless immediately after the test and assumed my PFTs slowly improved with each interval.
Still, I asked the technician to explain what he was seeing. Thankfully, he was open to that, and I learned that some of the variances were significant.
Curious, I asked how I’d be scored given the different PFT values. The technician said that doctors take the best PFT values from before and after the test, then average them for a final pre- and post-exercise measurement.
I was outraged to learn it’s done this way. How I feel on a regular basis would be better represented by my two worst PFT scores, not my best.
I always assumed treatment for any lung disease would be based on how you feel at your worst. Instead, as I asked more questions, I realized that your best test results determine your baseline and how your disease is managed.
I felt upset as I drove home because this approach doesn’t seem fair to the patient. I knew my PFT result would be better 15 minutes after exercise than immediately afterward, but that doesn’t mean that how I feel right after exertion shouldn’t be addressed proactively. I won’t always have 15 minutes to sit and catch my breath after strenuous daily activities, such as carrying groceries or cleaning the snow off my vehicle.
When I got home, I started writing down questions and how I felt. I look forward to talking with my doctor so that I can better understand the rationale behind this process. I’m confident there is one, and I trust my medical team implicitly. From the patient perspective, though, it just doesn’t feel fair.
I’ll continue to ask questions and seek answers to ensure I’m managing my IPF the best I possibly can.
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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Comments
Kathleen Ryan
The same has been true for me - the best result is what is used to chart my disease. It doesn't make sense to me either,
Gilbert
Thank you for advising to ask questions. Since I'm fairly new at this I wasn't sure what questions to ask. I have recently been diagnosed and scheduled for the pulmonary function test now early March. I now have an idea of what to ask. I just had my second fight with COVID and it seems it's left me feeling more shortness of breath. I rejected Paxlovid because of the side effects listed and that I take medications that don't go well with it. I did take antibiotics and a steroid burst which really helped. I'm not sure if I ll reject next time. Hopefully there is no next time. Thank you.
Steve Dragoo
Hi Charlene,
Ditto. There are so many variances and requirements in western medicine it is difficult to find consistency from country to country. Nonetheless, the tests and the analysis are generally good science but the decision to average a bunch of results in a disease that obviously deteriorates the body hardly seems justified or scientific. It also precludes the doctor from an accurate projection based on your almost 7 years of history. Why they want to handicap themselves and us is beyond understanding.
Stay well...
Steve