Fitting Your PH Carry-On in the Overhead
One holiday season a few years ago, I was sprinting through the Atlanta airport desperately trying to make a flight home to San Diego. I ran right up to the gate and…
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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How PH taught me the importance of listening to my body
The pain caused my right knee to seize with every step. As I moved through the Indianapolis hotel room that morning, the day’s busy schedule simmering in the back of my mind, I knew…
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Are Endorphins Part of a PH-Balanced Breakfast?
At the start of pulmonary rehabilitation, I was asked to write out a goal to work toward throughout the three months of sessions. Without realizing how unrealistic it sounded, I jotted down…
I’ll Take Life-saving Treatments for $1,600, Alex
“If you’re paying out-of-pocket, Mr. Naple, that will be $1,600 for the one month of sildenafil. Is that something you will want to pay today?” the pharmacist inquired over the phone. You probably…
The Value of Perspective and a Good Appointment
Going back to the hospital in Fairfax, Virginia, felt in some ways like returning to the scene of a crime. I walked by the gift shop, toward the elevators that would take me down…
Side Effect, Thy Name Is Exhaustion
I’m tired just from typing these words. A rare disease like pulmonary hypertension doesn’t operate in a vacuum — side effects run aplenty. One of them is a feeling of chronic fatigue. Exhaustion seems…
I Can’t Afford Not to Think About Affordable Care
When we’re growing up, I imagine many of us are not thinking about the costs of healthcare. For many kids, healthcare means a Band-Aid with disinfectant and a kiss on the knee, and a…
A HAPE Hat Trick or PH?
Sometimes when I think about the symptoms of pulmonary hypertension — dizziness, shortness of breath, dry cough, and chest pain — I wonder if my diagnosis had just been waiting a decade to hear…
Listening for That Other Shoe to Drop
The office looked like an Ikea showroom. I didn’t know what I was going to say, or how he would respond. It was my first time seeing a therapist and I found myself there…
Representation and the Need for More PHighters on Screen
I didn’t know what pulmonary hypertension was before my diagnosis. When I would tell friends and family about the disease, almost all of them learned about it for the first time through those conversations.
PHighting Words: A Column by Mike Naple
Greetings! If you’re reading this post you most likely are: Living with pulmonary hypertension; have a loved one, family member or friend who is fighting this rare disease; a healthcare provider; or have…
