How Hamilton and I ‘wrote our way out’ for World PH Day
A columnist recalls his first World PH Day after diagnosis
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 I was diagnosed with pulmonary hypertension.
Pulmonary hypertension (PH), a chronic and progressive disease with no cure, affects the heart and lungs. It can be notoriously difficult to diagnose. According to Mayo Clinic, PH is often missed because it is “not often detected during a routine physical exam.” Some symptoms of PH — shortness of breath, chest pain, or cough — mimic those of other conditions like asthma. PH diagnoses can be delayed for long periods of time.
Before my diagnosis, unanswered questions about why my health was declining left me frustrated and angry. I visited my primary care doctor in 2015 after multiple episodes of shortness of breath while walking from the metro station to my office. The doctor referred me to a pulmonary specialist, who started to treat me for asthma.
A bevy of tests, scans, medications, and therapies followed when my symptoms didn’t improve. Throughout that year, my health worsened to the point where I needed to check myself into urgent care in March 2016.
A little reading between hospital transfers
I’m always thankful for the moment I chose to put myself and my health first by going to urgent care. That decision resulted in a hospital admission. I learned that I had been walking around with low-grade heart failure. While that sounded terrifying (and still does!), it also made sense given how I felt. It wasn’t immediately clear how long I would have to be in the hospital.
I tried to pass the time with Chernow’s Hamilton biography. I purchased the book because I wanted to read it before my partner and I saw the musical on Broadway. We had memorized the lyrics to many of the songs, but I wanted to learn more about the backstory and Hamilton’s life.
Reading is not only a favorite pastime for me, it also provided some amount of escapism from the reason I was in the hospital. So when I had the energy in between tests and blood draws, I would crack open the tome and devour a few pages.
When the need for more specialized care required a hospital transfer, the book came with me. Even though I can’t recall exactly how much or how little I read during that two-week hospitalization, looking back now, that Hamilton book was one of the few non-family constants in an ever-evolving situation that turned my world upside down.
At discharge time, I gathered up my clothes and belongings, and headed home with a PH diagnosis and the book.
Picking up the pen for World PH Day
In early 2017, with chapters of Hamilton’s biography still unread, I did get to see the musical on Broadway at the Richard Rodgers Theatre. I hold a special place for the music from the show, because I listened to it, perhaps obsessively, during that newly diagnosed period of my life.
I spent the first year after diagnosis feeling myriad emotions, learning everything I could about PH, adjusting to a daily pill schedule, and attending pulmonary rehab. I wondered if it would be possible to balance all my personal and professional obligations — and my health — as part of my “new normal.”
Around the one-year anniversary of my diagnosis, a spark ignited inside me to write about my experience. It had been a challenging year to say the least. Exhausted from talking to people about the disease, I thought I could better communicate my reality through the written word. In the back of my head, I could hear the Hamilton song, “Hurricane,” where he talks about writing his way out of a difficult situation. I didn’t think I could write my way out, necessarily, but perhaps through and forward.
My first piece about PH coincided with my first World PH Day. I wanted to raise awareness and spread the word about this terrible disease that still felt new and strange to me. I’m grateful for that piece, because it led to the creation of this column. In writing “PHighting Words,” I’ve been able to tackle the highs and lows of a PH patient, explore my disability identity, and advocate for the broader network of patients, caregivers, medical professionals, and others.
I hope to continue writing my way through for many World PH Days to come, and I’m ready to see how our community marks the day on May 5!
Follow Mike Naple on Twitter: @mnaple.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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