A 24-hour news cycle, a lack of civil discourse, people who believe their needs are a priority, and the stress of a chronic, progressive disease with no cure: These things, and many more, contribute to the noise that fills my every waking hour. When I was diagnosed with…
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My name is Kylene, and if you haven’t read my column before, my husband, Donnie, was diagnosed with pulmonary fibrosis in late 2022. Right now, it’s 5 a.m., and I’m writing from our hotel room. Twice a year, Donnie and I drive two and a half hours to Barnes-Jewish…
Have you ever woken up in a strange mood and, before your feet hit the floor, found yourself wondering what caused it? I recently experienced that; I was feeling melancholy, and the Dean Lewis song “How Do I Say Goodbye” came to mind. Someone I knew recently passed…
“How can I help you?” When was the last time you heard those five simple words? My next question may be even harder to answer: When was the last time you asked someone how you could help them? When I was diagnosed with idiopathic pulmonary fibrosis in January…
Sometimes when I think about our life after my husband Donnie’s pulmonary fibrosis (PF) diagnosis, I think of the infamous “pivot” scene from the television show “Friends.” Donnie would be playing the part of Chandler, doing his best to navigate all the obstacles and inch the couch up the…
A single decision, likely made in a split second by someone I’d never met, saved my life. On the morning of July 9, 2021, I received a call that donor lungs were available for me, and my future went from impossible to possible. When I was diagnosed on Jan.
Last in a series. Read part one. When the tests to determine if I would be diagnosed with pulmonary fibrosis (PF) finally gave me clarity, I thought the hardest part of my journey was behind me. In reality, the diagnosis marked the beginning of a new chapter…
No one would voluntarily join the pulmonary fibrosis (PF) community. After all, who would want to be a part of the rare disease world? When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, the idea of a disease-specific community seemed elusive. Most people I knew…
Mariners, for as long as their ships are at sea, rely on navigation skills to safely reach their destination. The tools and techniques they use have improved over time. While some ships may still post lookouts on occasion or use a lighthouse to identify hazards, the process of moving a…
My husband, Donnie, has been introducing our youngest daughter to the Marvel universe. Watching the movies together, I told her that she and Donnie are like Tony Stark, also known as Iron Man, because they both need a little mechanical help to keep their bodies working as well as possible.
