A chronology of my medical journey, from a persistent cough to a transplant
Next month will mark five years since my bilateral lung transplant
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Storytelling is a learning tool as old as time. History is made up of eyewitness accounts and recollections of a certain time or place, often augmented by official records. I’ve seen discussions recently on social media and in the Pulmonary Fibrosis News Forums asking for people to describe the timeline of their journey with idiopathic pulmonary fibrosis (IPF), so I’ll attempt to do so in this column. My only caveat is that my journey may resemble someone else’s, but it is uniquely mine.
My path to diagnosis began in the fall of 2016, when a persistent cough concerned both my wife, Susan, and me enough to ask my doctor for a chest X-ray. My doctor initially suspected pneumonia but referred me to a pulmonologist.
I ultimately saw Steven Nathan, MD, the medical director of Inova’s Advanced Lung Disease Program, in January 2017, and was diagnosed with IPF. My persistent cough, clubbed fingers, and shortness of breath, along with the results of a CT scan, made it official. Much has happened since then.
My disease progression for the first two years could be described as stair-stepping. My pulmonary function and six-minute walk tests would remain the same, then decline, then remain the same again. These declines were accompanied by decreases in my oxygen saturation level.
During those two years, I was also diagnosed with obstructive sleep apnea.
In the last half of 2019, I was prescribed supplemental oxygen, initially at a flow rate of 2 liters per minute, primarily for exercise and when I slept. My oxygen at night was delivered via a CPAP machine.
A pandemic, and finally, new lungs
In early 2020, I began the evaluation process for a bilateral lung transplant, with my case being presented to the transplant committee in March. COVID-19 was starting to spread at that time, so the team decided to defer me.
That year, my physical decline accelerated. My pulmonary rehabilitation classes were suspended due to the pandemic, but I was walking every day to be as strong as possible for a potential transplant. A year later, my progression was more apparent at each visit to the clinic.
Given my rate of progression, in consultation with my care team, we agreed that if a single lung became available, we would take that option. We had very candid conversations about the fact that if I didn’t receive a lung transplant, I wasn’t likely to see Christmas in 2021.
On the morning of July 9, 2021, just after 9 a.m., I received the call that lungs were available. We arrived at Inova Fairfax Hospital in Virginia by noon. When my donor lungs arrived, they were assessed by my care team and the surgeon, who determined that they needed to undergo ex vivo lung perfusion, a therapy that makes donated lungs that were previously unsuitable safe for transplant.
At approximately 3 a.m. on July 10, I went into surgery. It went well, and the team in the intensive care unit began waking me up the following afternoon. My post-transplant work began the next day. I needed to demonstrate that I could sit, stand, and walk on my own before I could be discharged. I also had bronchoscopies, swallow tests, and X-rays almost every day.
I was discharged 10 days later. We had leased a nearby apartment because our home was more than 90 minutes away from the hospital, and I had several clinic and pulmonary rehabilitation appointments each week.
The biggest post-transplant issue I had was bronchial stenosis, a narrowing of the bronchi. This required multiple bronchoscopies and the placement of a stent to help keep the bronchi open.
I also have to take post-transplant medications to suppress my immune system. These drugs have a harsh impact on other parts of my body, and I’ve developed stage 3 chronic kidney disease. My decreasing bone density requires me to have daily medication injections. My care team constantly adjusts my medications based on lab results, and as of today, I’ve had 142 such adjustments.
Next month will mark five years since my transplant.
This chronology of milestones provides a glimpse into my journey. I’d love to hear your story in the forums or in the comments below. For me, the best is yet to come in life, and in the meantime, I’ll continue to make 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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