Make Every Breath Count
— Samuel Kirton

This has been quite the week. I can sum it up in one word: grief, which must be one of the most unpredictable emotions we experience. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I made a conscious decision to “be positive in all…

“You’ll Never Walk Alone” was written by Richard Rodgers and Oscar Hammerstein II for the 1945 musical “Carousel.” Many others have performed the song over the years, and it’s even become the anthem for Liverpool Football Club in England. Most recently, I’ve enjoyed the version by…

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2017, I soon learned the cause and cure were mysteries yet to be solved. I know firsthand how difficult it can be to solve a mystery. Difficult, but seldom impossible. I worked my first career as a special…

The arrival of spring here in Virginia is both a blessing and a curse. Despite the improved weather, I think of it as pollen and mold season. As a longtime sufferer of seasonal allergies, I don’t need the gentle yellow-green tint on vehicles and patio furniture to remind me to…

Are you angry? If so, who are you angry with and why? I follow a number of social media groups associated with different rare disease communities. Lately, it seems that people are angry with the very groups advocating on their behalf. I must admit, that intrigues me a bit. When…

“It is only because of your generous gift of life that I am here. This is the hardest letter I have ever composed. Trying to capture the full range of emotions in a single letter to say thank you is more difficult than I imagined.” These are the words that…

In last week’s column, I wrote about the preparations required for my first international vacation since 2019. Since I was diagnosed with idiopathic pulmonary fibrosis in January 2017 and received a bilateral lung transplant in July 2021, many aspects of my life have changed. The most…

My wife, Susan, and I have traveled around the world by trains, planes, ships, and automobiles finding new adventures. We are now in Amsterdam — our first international trip since 2019. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, my care team encouraged me…

Do you have pets? If so, have they been good companions? Following my diagnosis of idiopathic pulmonary fibrosis (IPF) in January 2017, I faced periods of loneliness and isolation. That was especially true during the COVID-19 pandemic. My wife, Susan, has always been a cat person, while…

Solutions are seldom permanent. I want you to let that marinate for a minute. When I learned I had idiopathic pulmonary fibrosis (IPF) in January 2017, I was several months into my diagnostic journey. As I learned more about IPF and patient experiences, I concluded that there wasn’t…

The journey of a pulmonary fibrosis patient and a post-transplant patient have one big thing in common: We must take the correct dose of the proper medications at the appropriate time. So what happens when much of the pharmacy infrastructure fails on a random weekday? Medication management is…

For many years, my relationship to the rare disease community was that I had stepsiblings with ataxia, a neurological condition without a cure or effective therapy. Little did I know I’d one day have my own rare disease. In January 2017, I was diagnosed with idiopathic pulmonary…