I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, at age 59, and received a bilateral lung transplant in July 2021. During a visit last week, my adult daughter Heather asked me a perplexing question: “Is the IPF gone now that you have new lungs?”…
When idiopathic pulmonary fibrosis (IPF) patients experience a worsening of symptoms, it’s often called an exacerbation. I didn’t know it at the time, but my diagnosis with IPF in January 2017 started me on an educational journey. My vocabulary was going to expand to include new…
There’s an Instagram account called “iwastodayyearsold_” (I was today years old) dedicated to sharing unusual discoveries people cannot believe they missed until now. Some of the information is insightful and makes me think, “How could I not have known that?” What if there were a similar resource for…
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…
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