The day you’re diagnosed with a chronic illness is generally a day you won’t forget. The words from my doctor, Steven Nathan, made sense in the moment. They also became a collection of sound bites. They fall into three distinct categories: 1) you have, 2) you can expect, and…
Indulge me for one minute and think of some of the firsts you’ve experienced. What comes to mind? Is it the first time you tied your shoes? The first time you held your firstborn? The first time you drove a stick shift? If you flawlessly executed that last…
Did you ever play Pac-Man? The bright yellow Pac-Man would wander through the maze, happily munching down the blinking dots. That’s how I feel about my energy levels as a pulmonary fibrosis advocate. I pursue advocacy with a passion fed by all the opportunities that arise — my own…
Following my diagnosis of idiopathic pulmonary fibrosis (IPF) in January 2017, I knew the disease would diminish my quality of life. For about three years, my IPF progression stair-stepped — that is, I’d remain stable for a period, and then I’d experience a decline in lung function and…
Summer is here in the Northern Hemisphere. Where I live, in the mid-Atlantic region of the United States, there are three key indicators that summer has arrived: heat, humidity, and thunderstorms. It’s also a popular time for vacations and getaways. My wife, Susan, and I have always loved to travel,…
Do you recall the first time you were allowed to stay home alone? Perhaps your parents had a date night. Maybe they had to work late. Whatever the reason, it was a sign you were considered responsible if you were trusted enough to be home alone. You knew that you…
Prior to my diagnosis of idiopathic pulmonary fibrosis in 2017, my day started the same way almost every morning. I’d pick up my smartphone and see how the markets performed overnight. Then I’d look for an expected opening, based on the overseas markets. Since my diagnosis, I no longer…
Almost 30 hours after my bilateral lung transplant, it was time for me to be extubated and take my first solo breath with my new lungs. My wife, Susan, was at my bedside, along with several nurses. In a video of that day last July, you can hear Susan ask…
This time a year ago was very different for my wife, Susan, and me. My idiopathic pulmonary fibrosis (IPF) was no longer stable, but progressing. Susan was confident I wouldn’t make it to Christmas. Upon exertion, I needed over 7 liters per minute (lpm) of supplemental oxygen. Exertion…
Carrying the weight of the world on your shoulders can be exhausting. Those of us touched by rare disease — whether as a patient, caregiver, loved one, or friend — understand that anxiety can be triggered by almost any activity. Examples might include anticipating a medical procedure, awaiting test results…
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