Sometimes, laughing with PH patients is the best medicine

If you were fixin’ to connect with pulmonary hypertension (PH) patients in June, you would’ve found a whole contingent of us camped out in Dallas.

The PH community took the Lone Star State by storm for the Pulmonary Hypertension Association’s biennial International PH Conference and Scientific Sessions. Alongside patients were caregivers, families, researchers, medical professionals, drug manufacturers, and many other voices.

Finding a lifeline amid isolation

It’s nearly impossible to prepare for how much a chronic illness diagnosis will change your life. After getting diagnosed in 2016, I did what I could to turn the many unknowns into as many knowns as possible. I ordered my prescriptions, scheduled follow-up appointments, and figured out the recovery time before resuming daily activities like taking the bus to get groceries or returning to work. I tried to adjust to a three-times-a-day medication schedule and to come to terms with this new normal unfolding before me.

What was unknown to me at the time were the feelings of loneliness and being misunderstood that followed the expected physical symptoms and medication side effects. In those early days, even with my partner, family, and friends around me, I felt like I was alone on an island. I didn’t know what my life expectancy looked like, and I certainly didn’t know anybody else diagnosed with PH, let alone others who knew about this life-threatening disease affecting the heart and lungs.

I got my act together and decided to seek out stories about other patients, folks who were living more than three to five years post-diagnosis. That led me to the Pulmonary Hypertension Association (PHA) and my first conference.

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Magic in an Orlando ballroom

Years before Dallas, in 2018, I attended my first PHA conference in Orlando, Florida. It was like I had landed on another planet. I spoke the same language as everyone else, saw other people wearing portable oxygen concentrators, and everyone was friendly and welcoming. Seeing other patients for the first time is an experience I will never forget.

My mom joined me for that first conference. She attended breakout sessions for caregivers, and I explored opportunities for newly diagnosed patients and ways to advocate for policy changes to improve patient quality of life. We both visited the research room — a highlight of every conference — to have our blood drawn and contribute to the next phase of research into new medications and, ultimately, a cure.

The highlight of that first conference was the breakfast session on the last day. My mom and I sat at a table where two women were chatting and enjoying their food. We eventually introduced ourselves and were amazed to learn that one of the women had been living with PH for four decades. Not only was that reassuring to learn at that stage in my journey, but these women became friends whom I’ve reunited with at nearly every conference since. Perhaps magic in Orlando isn’t limited to the city’s professional basketball team.

Lots of laughs and yee-haws

The power of the PHA conference lies in the connections that people make with other attendees. It’s the “you are not alone” sentiment brought to life through shared stories and relatable struggles, such as managing side effects or getting stuck on a phone merry-go-round with insurance companies, pharmacies, and your provider when you’re just trying to refill a monthly prescription. It’s hearing from patients who found new grit inside themselves to persevere and live their best PH life, and laughing so much that I had to use my portable oxygen concentrator.

Since it’s rare to have so many PH community members in one place, I spent as much time as possible in Dallas catching up with old friends and connecting with new people. I met some patients who were attending their first PHA conference, including a few who live somewhat near me in the Washington, D.C. region. (Yes, we’ve already exchanged emails and checked in on one another since returning home.) I love meeting first-time attendees to hear about what brought them to the conference and learn more about their experience living with PH. I even met fellow Pulmonary Hypertension News columnist Jolie Lizana IRL, as the kids say!

Showing PH pride

The PHA conference also evokes a sense of pride, as we’re among fierce patients, dedicated caregivers, and the medical professionals and researchers blazing the trail for the next generation of PH treatments. I also appreciate how PHA makes space for those of us in the LGBTQ+ community to celebrate Pride Month when it aligns with the conference.

Here’s to making many more connections at the next PHA conference in Columbus, Ohio!

Follow Mike Naple 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.