The hallway felt cold despite the extra blanket the transfer specialist gave me before moving me in my hospital bed. We headed to another wing of the building for yet another test. I waited in a dimly lit hallway for 45 minutes or so, counting the minutes, hours, and days…
PHighting Words — Mike Naple
Mike Naple (he/him) lives in Washington, D.C., but calls San Diego, California, home. Mike was diagnosed with pulmonary hypertension in 2016. He also manages living with interstitial lung disease, sleep apnea, scoliosis, and a stutter. These chronic conditions are mostly invisible except for when Mike uses oxygen therapy while engaged in rigor exercise or activity. Mike is a public affairs and communications professional who still works full time. He is excited for readers to join him as he navigates the intersections of disability, chronic illness, rare disease, public policy advocacy, and living with PH.
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There’s a sentiment that a book finds you at the right time in your life. Sometimes, when you have a chronic illness like pulmonary hypertension (PH), that book finds you when you’re sitting on a bench outside of a hospital. Recently, that book for me was “Famesick,”…
“I wish I could help you. I know how tough pulmonary hypertension is and what you’re going through — there just isn’t enough supply of the antibodies treatment.” That was the gist of what a doctor told me while I was isolating in a California hotel room in January. I…
When I checked into urgent care in 2016, I was supposed to be preparing a member of Congress for a summit at the White House. But instead of going to work the next day, I sat in the hospital for nearly two weeks and left with a pulmonary hypertension diagnosis.
The pandemic has been especially hard on people with disabilities, chronic illness, and rare diseases. Our community has faced ongoing ableist attitudes toward safety measures and protocols meant to keep disabled, immunocompromised, and other high-risk individuals protected from a pandemic with a death toll in the United States…
It turns out that National Cat Herders Day is an occasion people celebrate. Observed on Dec. 15, it’s a day to recognize people who achieve the impossible as part of their jobs or positions, and do work that requires incredible feats of willpower and organization, and a…
The tightness creeps up in my lungs just as I’m about to make up the bed with a second clean sheet. I pause to catch my breath and wonder how unfolding a piece of fabric can make me feel like I just sprinted up a flight of stairs.
Something unexpected happened while scheduling my next quarterly checkup: I was told my lung specialist is leaving and will no longer be part of my care team for pulmonary hypertension (PH). This caught me a bit off guard. I had gotten to know this particular doctor over the last 20…
I’m grabbing the megaphone to raise awareness and advocate for pulmonary hypertension (PH). And I invite you to join me. Through advocacy, we’re able to make changes in the United States’ democratic system of governance. I believe change begins with the advocates and the storytellers who share their lived experience…
I’ve always considered myself an “on” person, somebody who says yes to the boss or co-worker, friend or relative, thing or event asking for my attention and energy. I’m like a faucet running all the time, never slowing down to make time for myself. Being on all the time fills…
What is better than the smell and taste of a freshly brewed cup of coffee? Maybe a second cup of coffee? Maybe like me, you find comfort in the simple routine of your morning coffee before work, school, taking care of a loved one, or whatever is on your to-do…
Have you ever seen the view from the top of the Lincoln Memorial in Washington, D.C.? Maybe you saw the monument during a family or school trip, or perhaps a visit to the National Mall is still on your bucket list? Living in D.C., I sometimes forget how close the…
I haven’t always identified as disabled, even though I lived with disability long before my initial pulmonary hypertension diagnosis in 2016. Adjusting to life with a chronic illness that affects breathing awakened a connection inside me to disability as part of my identity — one I felt had been…
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