When you struggle to breathe, yet fail to understand why, it can feel like you’ve lost your way in a dark wilderness. It’s scary and isolating, and you have nary a map, flashlight, or proper diagnosis to help find a lighted path out of the woods. I saw my…
PHighting Words - a Column by Mike Naple
While I take a fair amount of medication to manage my pulmonary hypertension (PH), sometimes the hardest pill to swallow is admitting when I fall short with my treatment plan. Earlier this month, I was at a restaurant sharing a meal with an old friend I hadn’t seen…
Do you have trouble relaxing? That might seem like a silly question given that summer vacations are in full swing. But I’m asking because of my own ongoing quest to better relax as part of my treatment plan for pulmonary hypertension (PH). Long before my PH diagnosis…
I’ve said it before, and I’ll say it again (and again): Elected leaders in the United States need to hear from their constituents, which include many of us in the pulmonary hypertension (PH) community. The doldrums of August is the perfect time to connect with your members…
I can see the marks on my face most mornings when I look in the mirror. In my mind, the reddish lines and indentations look like well-worn train tracks. Lately, two small circular markings have made themselves known on each side of my nostrils. Those marks are from the straps…
Last month, Father Time strapped me to a rocket ship and shot me clear into the wild blue yonder of my fifth decade. That’s right: This geriatric millennial recently turned 40. I’m launching into a new decade and taking my pulmonary hypertension (PH) diagnosis with me. If we’re…
When the doctor used the phrase “your deformity,” I immediately braced myself for the remainder of the appointment. I compartmentalized the comment for the moment and would deal with how I felt about it at a later date. I’d raised the possibility of my getting a lung transplant, which…
Do you use supplemental oxygen or know someone who does? We all need oxygen to breathe and to function. But most people breathe without giving it much thought. Yet some in the chronic illness and disability communities need a little extra help to ensure that oxygen flows throughout their…
I never finished reading Ron Chernow’s biography of Alexander Hamilton. Maybe you’ve read it. Perhaps you’ve seen Lin-Manuel Miranda’s musical based on the book, or heard the music. I’d be surprised to learn, however, if the book was in your hospital discharge bag, as it was in mine after…
Thirty-eight thousand, seven hundred, and ten feet. That’s the length of about 107.5 football fields, including their end zones. It’s also a ballpark estimate of the distance I’ve walked during six-minute walk tests since I was diagnosed with pulmonary hypertension (PH) in 2016. What a journey! A six-minute walk…
Some people might describe me as the type of person who regularly says no to something before coming around to a yes. This might apply to support groups, as I usually don’t join them. Don’t get me wrong, I’m glad they exist for people with rare diseases like…
It’s officially spring! Flowers bloom, rain falls, and allergies flare as we begin to emerge from our collective hibernation. Before formally springing forward, I took a vacation to Florida where I spent a week visiting different amusement parks, and my comfort level with asking for and using disability accommodations reached…
