When we share our experiences with IPF, it’s not a competition

We’re not all the same. When I share details about my journey with idiopathic pulmonary fibrosis (IPF), I don’t want to give the impression that I’m setting a standard. My goal in writing this column is to share my experiences, which may or may not be similar to others.

When Steven Nathan, MD, diagnosed me with IPF in January 2017, it was the culmination of a process that began during my annual physical in October 2016.

When I saw Louise Reynolds, my primary care physician, that fall, my nonproductive cough had become an issue in both my professional and personal life. A chest X-ray was performed on the same day as my physical. That led to a CT scan, and those results — along with my nonproductive cough, clubbed fingers, and other symptoms — resulted in my diagnosis.

For me, the process took about four months, but for others in the IPF community, it can take much longer.

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Once diagnosed, my future took a different turn than I’d imagined. I soon began taking Esbriet (pirfenidone), one of the two approved anti-fibrotic drugs available to IPF patients in the U.S. Others may have taken Ofev (nintedanib). My care team explained the side effects of both medications, and I elected to take Esbriet.

I worked for another eight months before I could no longer perform essential job functions, resulting in my departure from the workforce on disability. My employee benefits package offered disability income that I was qualified to receive, though I understand not everyone has that option. My focus, my priority, was my health.

In late 2019 and early 2020, I underwent a battery of tests and procedures to determine if I was a good candidate for a lung transplant. I was approved, but deferred. A candidate must be sick enough to require the transplant, but healthy enough to endure the rigor of the surgery. I made it another year before I needed to be listed in March 2021. Not everyone will qualify for a lung transplant or elect to pursue one.

I received a bilateral lung transplant in July 2021 and stayed in the hospital for 10 days until my care team felt I was well enough to function at home. Others who’ve had a lung transplant may have been in the hospital for weeks or even months. The number of days we spend in the hospital is not a competition. Each of us has different needs that dictate the length of our stay.

In the three and a half years since my transplant, I’ve had two hospital stays for treatment. I also required the placement of a stent in my bronchial stem and have had 127 medication changes.

Each of our journeys is unique, and we’re not competing to see whose experience has been the hardest or the easiest. In my view, it’s far more important to connect over similar experiences, despite the individual differences.

Sharing my unique journey allows me to make every breath count.

When your experience is different, I encourage you to share it in the comments or at the PF News Forums.

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.