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…
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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…
Last month I struggled with my mental health more than usual. My anxiety was out of control. I recognized that I needed more help and went to see a psychiatrist my primary care physician had suggested a few times. She ordered a few medications at a low dose. But…
For all of you Ms. and Mr. Hospital Corners out there, I see you! No, I don’t see or care how you made your bed today, but I do care about how you’re holding up as caregivers. Due to rapid decline from pulmonary hypertension (PH), my son Cullen…
I know what I’m about to say will make some of you roll your eyes, but it’s so important. Drink water every day! I’m reminding you because a scary dehydration event recently reminded me. Last Wednesday, my dog woke me at 5:30 in the morning. Standing next to my…
When I was 8 or 9 years old, the alarm of my IV pump went off in the middle of dance class. When you’re placed on an IV medication for pulmonary hypertension (PH), you are heavily educated on its short half-life and the reality that any pause in medication…
After my bloodwork a few weeks ago, I stopped by a local 7-Eleven to grab an iced coffee. I parked and went in. An older man came in behind me and said, “Do you know you’re parked in handicapped? You’ll get a ticket.” I turned around, oxygen cannula and all,…
