“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 know my answer. Sildenafil is one of three medications I take to keep my pulmonary hypertension…
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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When did you last speak to somebody on the phone? I don’t mean communication via email, text messages, Slack, Signal, Instagram, or other digital platforms. People today tend to opt for the more casual text- or chat-based connections. I imagine, though, that if you have pulmonary hypertension (PH) or…
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 to the basement to Pulmonary Diagnostics. I couldn’t shake the sense that I had left something…
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 ever-present in my life; like the shadow cast imposingly from the bag that carries my oxygen…
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 few trips to the doctor’s office for dreaded shots. A child’s focus never wanders beyond the…
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 its name. When I was in my teens and early 20s, I loved the rush of…
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 at the urging of loved ones. At this point, in May 2016, I was a little…
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. As I began adjusting to life with PH, vigorously searching for stories of other people facing…
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 joined the fight to find a cure in some advocacy or research capacity. Whoever you are…
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