On my diagnosis journey, I felt like I was moving in slow motion

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in the early days of 2017, it seemed like my world moved in slow motion. Just a few months earlier, as my diagnostic journey began in the fall of 2016, my doctors sensed something was wrong, but no one could give me definitive answers. The uncertainty was unnerving, yet I tried to hold on to normalcy for as long as possible.

I have always loved to cook, and on Christmas Day in 2016, we set out on a vacation that many foodies dream of. When we returned from that trip in early 2017, I had no idea what lay ahead. On Jan. 31, 2017, my IPF diagnosis became definitive. The nine years since then have been a blur, punctuated by moments that seemed to move in slow motion.

For me, the period from my diagnosis to being considered for a lung transplant is best described in a single word: anticipation. I had been diagnosed with a rare disease, and every appointment with my care team and every test result became a milestone. I awaited the results of each, knowing that an adverse finding could alter the path of my journey.

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In March 2020, I was approved for a transplant, but I was deferred because my progression was irregular; it would be stable for a time and then decline. Additionally, COVID-19 was aggressively spreading across the U.S., so my medical directive became isolation at home.

My need for supplemental oxygen increased, and almost a year later, in March 2021, I was listed for transplant.

Anticipation soon gave way to anxiety. Every time the phone rang, my emotions swung between hope — wondering if this was the call announcing available lungs — and frustration when it turned out to be a telemarketer concerned about my vehicle’s extended warranty.

Gratitude became the dominant emotion

A few minutes after 9 a.m. on July 9, 2021, the phone rang, and lungs were available. After praying for my donor and their family, we left for the hospital.

My care team had some concerns about the lungs, but they were not ready to give up. They sent the lungs for ex vivo lung perfusion. Once they were satisfied the lungs were viable, I went into surgery at 3 a.m. on July 10 and received a bilateral lung transplant.

I came out of surgery and was moved to recovery and intensive care around noon that day. My team began waking me up late in the afternoon on July 11. I had been given a new chance at life. I was discharged from the hospital on July 20.

In the days following that life-changing phone call, and through my hospital discharge, my emotions were a blend of anticipation and gratitude. I didn’t realize it then, but that mix would become my new normal.

It has been more than nine years since my diagnostic journey began, and four and a half years since my lung transplant. Today, I still experience periods of anticipation and gratitude, and I don’t expect that to ever change. I have become better at managing both emotions, including the transitions between them.

Some medical tests and procedures still generate anticipation as I await the results. But holding all three of my granddaughters at once is a whole new level of gratitude.

Time is fleeting, and my goal is to make the most of the time I have. I hope the hardest thing you’ll have to do in 2026 is avoid writing 2025 by mistake. The fact that you read Pulmonary Fibrosis News suggests to me that it won’t be the hardest thing you’ll have to do this year. But we can get through the year together while 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.