Packing PH lessons for my next trip around the sun

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 lucky, every birthday starts us on a fresh trip around the sun. Something about this year, however, feels different, like I’ve packed my suitcase and it feels heavier than usual. Am I traveling with more baggage now?

Forty marks the first time that I’m kicking off a decade knowing I have pulmonary hypertension. My previous decades were full of confusing and scary symptoms, surprise hospitalizations, a HAPE hat trick, and one medevac helicopter ride.

Even though I experienced multiple health scares in my 20s and 30s, the notion that any of them were associated with PH was beyond me. I didn’t know about the disease at the time, and none of my doctors had uttered its name. It felt like all loose ends and no answers, until the hospitalization in 2016 that would lead to my diagnosis.

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I spent my 30s learning to adapt

In my early 30s, I still felt like I had the whole world in front of me. I had relocated from California to Washington, D.C., finished my graduate program, and worked in the U.S. House of Representatives. All of a sudden, the universe wound up and threw me a massive curveball.

At 32, I was lying on a hospital bed, cannula in my nose, hooked up to supplemental oxygen and listening to a pulmonologist tell me about PH, a rare disease that affects the heart and lungs. I’d been walking around with a sort of low-grade heart failure that left me gasping for breath, but now I had a name for the condition, a diagnosis, and a treatment plan.

I spent the next seven years — the majority of my 30s — figuring out how to adapt to living with PH. A chronic illness can alter your life in countless ways big and small, from juggling multiple doctor and specialist appointments to dealing with pharmacies and insurance companies to ensure you can afford to manage your shifting health. Shortness of breath, one of the PH symptoms I experience regularly, can make it harder to do everyday tasks like showering, doing chores around the house, or commuting to work and putting in a full day on the job.

PH patients are often told to prepare for a “new normal” after diagnosis. I’ve written previously about my stubbornness on this topic, to the point where I’ve stretched myself too thin. How I tried to shoehorn my diagnosis into my current routines rather than reimagine how I’ve structured my life from whole cloth. Sometimes we have to learn to choose what’s best for us, especially when it comes to our health. This includes choosing to adapt to the realities of a PH diagnosis, a lesson I revisit often.

Life expectancy and long-term PHighters

A PH diagnosis hasn’t stopped me from anticipating future trips around the sun, but I have tussled with my perspective on life expectancy. In the early days after my diagnosis, I acted like a sponge, soaking up as much information as I could find about what the future looks like for people with PH. Do they live long? I remember breaking down in tears more than a few times, overwhelmed by the uncertainty of how many years PH would slice off my life. At the time, I don’t know if I truly believed I would see another decade.

While a new year is never fully guaranteed for anyone, my anxiety about life expectancy with this disease became acute. It’s nearly impossible to ever fully shake off that feeling.

Thankfully, I’ve met long-term survivors in the patient community who have shown me what it means to manage PH for over a decade (and counting) and maintain a good quality of life. It’s encouraging to hear from those patients who were diagnosed before the availability of the vital medications and drug treatments that we rely on today. They remind me that this journey is more of a marathon than a sprint.

Choosing me (and PH) this decade

I might be traveling with more baggage at the start of this decade, but I’m no longer fumbling around in the dark, unsure of why shortness of breath, chest pains, and exhaustion are happening. With knowledge of PH and my experience managing the disease, I have the tools to live this next decade on my terms. I’m ready to choose me, my health, and whatever lessons I learn along the way.

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.