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My family has grieved the passing of many people over the years. Some died peacefully from natural causes, too many were taken by pulmonary hypertension (PH) and other diseases, and a few left this world both suddenly and tragically. Ages have ranged from the very young to the very…

As I debated what to write this week, I struggled for days. Continuous brain fog makes the decision difficult more often than not. My brain fog presents as lapses in memory, in which I forget what I was saying or other simple tasks. The icing on the cake is…

When the technician leaves the room following my echocardiogram to ensure that all of the proper images have been collected, my mom and I pick up the game quickly. Looking at the mural that spans the wall across from us, we each count the number of cars, people in…

As we trade swimsuits for sweaters in preparation for the fall season, many of us look forward to the premiere of new television shows and the return of our old favorites. Growing up, I would devour entertainment magazines dedicated to previewing the fall television and film lineups like popcorn. I…

In 2008, my then 8-year-old son, Cullen, was diagnosed with pulmonary arterial hypertension (PAH) following a right heart catheterization procedure. I spent much of that night researching, taking notes, and writing questions and concerns about this rare and incurable disease, which I’d never heard of until that day. The…

When I describe my pulmonary hypertension (PH) as stable, many think it means that I’m in remission. They don’t comprehend that, while my numbers may be stable, I still have PH. I continue to experience symptoms, require oxygen, and PHight daily. Those of us with rare, chronic illnesses celebrate when…

A yellow raincoat hangs in an office window on the same floor as my office. The full-length coat with simple, black buttons looks as though its fibers have never absorbed a single drop of rain. I first noticed it almost a year ago, when my company moved to a new…

Answer: resilience. Randolph Reynolds is geared up and ready to fly an F-105 in 1978. (Courtesy of Randolph Reynolds) Randolph Reynolds, 81, had an amazing career as a jet fighter and instructor pilot in the United States Air Force, flying magnificent aircraft like the F-105 Thunderchief and F-4D Phantom…

My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). Like it or not, his health and treatments became a common topic of conversation with family and friends. Although not ordinarily superstitious, we became cautious about reacting too excitedly when asked if his PH treatments…

School might already be in session for students in some classrooms across the country, but summer recess for members of Congress is just heating up! Every August, members of Congress leave the sweltering swamp of Washington to spend time in their home districts meeting with constituents, advocacy groups, and other…

PH parents are busy people. Making time for each other isn’t easy, and neither is trusting someone to care for their medically frail child when they do. My husband, Brian, and I have been married for 27 years, and we raised two sons, Aidan, 21, and Cullen, 22. Cullen was…

It happens often — probably more than I’d like to admit. In a moment of daydreaming, I’ll picture myself doing something both ordinary and unimaginable. On a crisp morning, perhaps, I awake and throw a sweater over my pajamas. I meander downstairs, stopping in the kitchen only long enough to…