Shortly after my diagnosis of idiopathic pulmonary fibrosis (IPF) in January 2017, I spoke with my pulmonologist, Dr. Steven Nathan, about participating in research. One of the first projects I joined was the Pulmonary Fibrosis Foundation (PFF) Patient Registry. The PFF Patient Registry began following patients in 2016,…
One of the more difficult parts of my journey has been remembering those I’ve met or learned of who’ve passed away from pulmonary fibrosis (PF). There are so many. It’s why we must all move forward in pursuit of treatments and a cure. The pulmonary fibrosis community must…
During my pulmonary fibrosis journey, I learned that one of the best things I could do for myself was to become an active voice on my care team. As a patient diagnosed with idiopathic pulmonary fibrosis (IPF) more than five years ago, I wanted to know more about this…
If you have spent any time on the internet, you have likely found some incredibly useful, accurate information. At the same time, you likely have encountered misleading claims, missed an opportunity to have large sums of money transferred to you, and received some bad advice. The ability to exchange information…
My 2017 diagnosis of idiopathic pulmonary fibrosis changed all our plans. Over the course of our journey, my wife, Susan, found herself responsible for many tasks I’d normally take on inside and outside of our home. Susan has told many people over time that if she asked me…
When I see an adult acting out in public, I find it annoying. If a front-line healthcare worker asks you to properly wear a mask in a clinical setting, please adjust your mask. Complaining about the rules and overreach of the U.S. Centers for Disease Control and Prevention (CDC)…
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…
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