My IPF Journey Has Taught Me to ‘Make Every Breath Count’

Welcome to my new column, “Make Every Breath Count.” Before I started writing it, I thought about what readers might want to know about me and why I’m writing this column. What details would make them want to continue reading?

It all started with a cough. In the fall of 2016, I was bothered by a lingering cough that had gotten worse and wouldn’t go away. However, I just attributed it to allergies. A chest X-ray indicated an interstitial lung issue that concerned my primary care physician enough to refer me to a pulmonologist in her practice.

After reviewing my high-resolution computed tomography scan, the pulmonologist walked into the exam room and saw my hands. My fingers were clubbed. Coupled with the scan and the cough, he immediately suspected pulmonary fibrosis.

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He referred me to the lung transplant center at Inova Fairfax Hospital in Falls Church, Virginia. On Jan. 31, 2017, I was diagnosed with idiopathic pulmonary fibrosis (IPF), the official beginning of the journey I want to share with you. My resolve to make every breath count was born.

The journey with IPF, like many other interstitial lung diseases, is completely unpredictable. I remained relatively stable amid a slow, steady progression over the next three years. As the pace of progression picked up, I went on oxygen in the fall of 2019, and began the final tests for transplant when the time came.

I was approved for transplant but deferred in March 2020 due to the COVID-19 pandemic. In consultation with my care team, we made a joint decision to keep my native lungs while closely monitoring my progression.

Almost a year later, on March 19, I was listed for a bilateral lung transplant. My downward progression had accelerated, and my care team recommended I accept a single lung if it became available. I needed more and more supplemental oxygen on a 24/7 basis.

On July 9, my phone rang at about 9 a.m. The voice of an angel said, “Hi, Sam. We have a lung offer for you.” Time stopped as my brain processed those nine words.

I arrived at the hospital around noon, and was prepped for surgery. The lungs needed to undergo some rehabilitation due to gases that concerned the surgical team. They employed a process called ex vivo lung perfusion to repair and prepare the donor lungs.

In the early hours of July 10, I went into surgery and received a bilateral lung transplant. I was brought to the intensive care unit around noon that day to begin recovery. At around 5 p.m. on July 11, I was extubated and took my first breath with my new lungs.

My IPF journey, which began with the lead-up to my diagnosis, continues today. I am passionate about sharing that journey to increase awareness, promote advocacy, promote research toward new treatments and a cure, and encourage others on their own journey.

“Make Every Breath Count” isn’t just the name of this column, it’s my mantra!

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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.