What I’ve learned in the decade since my pulmonary hypertension diagnosis

A decade later, I still remember standing in the kitchen on a phone call that would change my life. On that morning in March 2016, I left my apartment and returned nearly two weeks later with a pulmonary hypertension (PH) diagnosis.

I never thought I’d reach this milestone: living 10 years with a chronic illness that affects the heart and lungs. If PH were my spouse, I’d be getting them the traditional 10-year gift of tin or aluminum. While I’m not celebrating a marriage, the gift feels appropriate for this diagnosis-versary. Tin and aluminum are known for their strength and resilience, symbolizing the durability needed to navigate a life-threatening disease.

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An illness can change everything

The days following my hospitalization were tough. Everything was changing, and I had little control and even less of an understanding of what PH was doing to my body. Fear and confusion churned up a tsunami of questions about my future, leaving me awash in a sea of unknowns. I had new doctors to see, medications to take, and medical equipment to accept. My partner and I had been together for a little over a year at that point, and PH was throwing us a medical curveball early in our relationship.

I’m a big fan of developing routines and knowing what’s ahead. Change has always been tough for me to handle. But when life presents a challenge, you can either succumb to it or adapt to it. I’m grateful I chose the latter. I had to figure out how to adjust to PH — the shortness of breath, fatigue, and fluctuating energy levels. Typically, I would ignore my body’s signals to power through tasks and fulfill my obligations, but life post-diagnosis taught me the importance of listening to my body.

In an effort to retain some semblance of my active, work-centric life, I returned to my job on Capitol Hill and did my best to balance a pulmonary rehabilitation exercise program with the demands of a fast-moving workplace. For both personal and professional growth reasons, I eventually switched jobs, and I feel fortunate to still be able to work today. I’ve heard from other PH patients who had to cut their careers short, leave the job they loved, or significantly cut back on their work. That can be a difficult adjustment in a culture where work is so closely connected to feelings of self-worth, and I know I will be forced to make the same kind of choice one day.

Learning to preserve my ‘spoons’ and my strength

Whether it’s surprises at the pharmacy counter, navigating the maze of health insurance companies, establishing fresh boundaries, or protecting your energy levels, you’re always learning something new when you live with an illness like PH.

One of my light-bulb moments came from the “spoon theory,” which I wrote about early in my journey with PH. The theory, created by blogger and lupus advocate Christine Miserandino, recognizes that a person with a chronic illness or disability has a finite amount of energy — or a certain number of “spoons” — on any given day. Each task costs one or more spoons, meaning you can only accomplish so many things in a day.

While I’m the first to admit that I end too many days on “borrowed” spoons, the theory has helped me learn how to live with PH. I’ve previously shared that I struggle with the stigmas around wearing oxygen in public and have resisted regular use of a CPAP machine. It took longer than it should have for my perspective to evolve. To realize that the more I use the medical devices that keep my body oxygenated and strong, the more spoons I have for the activities that deserve my energy and the moments that matter.

Finding strength in community

In many ways, the last decade has been a nonstop roller-coaster ride, with dips, dives, and many loud screams. But here’s the thing: I’m not on that roller coaster alone, and I have found strength in my family, my friends, and the broader PH community.

I was lucky enough to return to Capitol Hill this month to advocate with the Pulmonary Hypertension Association for federal legislation that would improve the quality of life for PH patients. It was a full-circle moment that recalled my hospitalizations and struggles over the last decade, as well as the strength and resilience I’ve developed along the way.

Here’s to another 10 years. Perhaps I’ll give myself the gift of an aluminum spoon!

Follow me on X @mnaple or Bluesky at @mnaple.bksy.social.

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.