My IPF diagnostic journey began with a cough that wouldn’t go away
My diagnosis only took three to four months, but many take longer
My journey to a diagnosis of idiopathic pulmonary fibrosis (IPF) began in the fall of 2016, when I was 59. It all started with a persistent cough.
While the cough was annoying, especially to my wife, Susan, it wasn’t limiting my day-to-day activities. After seeing a radiologist’s report, my primary care physician of more than 25 years, Louise Reynolds, MD, told me I didn’t have cancer. She wasn’t sure what it was, but cancer was ruled out. She referred me to a local pulmonologist, who referred me to Steven Nathan, MD.
The path to my diagnosis began almost nine years ago, but from that X-ray to a formal diagnosis only took about three to four months. During that time, I had a high-resolution CT scan without contrast and a spirometry test. My cough, shortness of breath, and clubbed fingers led to the diagnosis, and I feel fortunate it went relatively quickly compared with what others have experienced.
IPF is a rare disease, after all, so it’s not unusual for some medical professionals to not be aware of it or how it presents. Reynolds had never encountered it in her 23 years in medicine before me, but shortly after she initiated my diagnostic journey, she saw another patient who was ultimately also diagnosed with IPF. On subsequent visits, with my permission, she invited other doctors in her practice to view my clubbed fingers and listen to the crackle in my lungs.
Diagnostic journeys can be short or long
The time to diagnosis can vary widely among patients with interstitial lung disease. That’s according to the INTENSITY survey, published in 2018 in BMC Pulmonary Medicine, which examined barriers to a diagnosis in 600 respondents, 279 of whom had IPF. Among those with IPF, 18 were diagnosed in less than six months, and 17 required more than 10 years. The largest cluster — 93 respondents — took two to five years to diagnose.
IPF is a diagnosis of exclusion. As part of my diagnostic journey, Nathan worked to eliminate known causes of pulmonary fibrosis, such as asbestos, silica, coal dust, or radiation to the chest.
Just because it looks like pulmonary fibrosis doesn’t mean it is. Of the 600 survey respondents, 55% reported at least one misdiagnosis, and 38% had at least two. My friend Sharon Eon was diagnosed with IPF and, after more than 18 months, learned it likely wasn’t that. That seems like a perfect storm of relief and anger.
Along with this column, I’m a moderator for the PF News Forums. I recently started a discussion, asking members to share their experience obtaining a diagnosis. I invite my readers to join that discussion to share their own stories and read others.
For me, that X-ray in 2016 was the start of my diagnostic journey and the beginning of my commitment to making every breath count.
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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