A Patient’s Perspective on the 2022 PHA Conference in Atlanta
Before my diagnosis, pulmonary hypertension (PH) was a mystery to me. I’d never met anybody who had the disease. Sometimes finding another person with PH is just as rare as the progressive disease itself. That’s exactly why I went to Atlanta last month to attend the International PH Conference and Scientific Sessions of the Pulmonary Hypertension Association (PHA).
PHA hosts the conference every two years. This gathering brings together people from all parts of the greater PH community — patients, caregivers, physicians, nurses, scientists, researchers, and advocates — for an energizing few days of breakout sessions, networking events, award presentations, support groups, and social activities.
This year’s conference theme was “PHacing the Future Together,” a nod to the power of community to sustain and support one another and to work side by side to build the future we know is possible. The COVID-19 pandemic reminds us all just how much uncertainty the future holds, but by working together, we can keep our community healthy, safe, vaccinated, and prepared for whatever comes down the pike.
I attended my first conference in 2018, two years after my diagnosis. I’d connected with some other PH patients online and through my writing, but I hadn’t made any connections IRL (as the kids say, or otherwise “in real life”).
Whether I’m canceling plans with friends due to low energy and fatigue or simply keeping my thoughts inside my head because chronic illness and disability can make others uncomfortable, PH is incredibly isolating at times. I’d learned much about the disease, read other people’s stories, and even begun to tell my own — yet still I craved that in-person connection with somebody who could relate on the same level.
Meeting people is one highlight of attending the conference. We might not all be at the same place in our lives, but through the disease we form a common bond that allows us to be vulnerable and share our experiences with one another.
At the closing breakfast of my first conference, my mom and I sat at a table and introduced myself to two strangers — both PH patients and long-term survivors. They were funny, warm, and welcoming, and we had a great conversation over eggs and coffee. As a newly diagnosed patient, I can’t fully put into words the affirmation I received from meeting somebody who’s survived for 40 years and more.
Following this year’s opening lunch, I reconnected with my friends from 2018 and introduced them to my partner. Swapping stories and sharing frustrations about the cost of PH prescriptions and issues with medication deliveries felt satisfying, like the nourishment you get from eating a good meal. I look forward to when we can safely share that experience and spend time together again.
I also reconnected with a respiratory nurse from my initial care team post-diagnosis. She’s since transferred to another hospital system in the greater Washington, D.C., area to help establish a pulmonary rehabilitation program. One conference breakout session focusing on exercise touched on the value of people with PH participating in pulmonary rehab programs.
Informed by my own experience, I raised the concern of patients accessing these programs due to high demand and waitlists, as well as the availability of programs in some communities. I was glad, very glad, to hear of efforts to try to lower these barriers to access.
You couldn’t move from one area of the conference to another without hearing people talk about advocacy. The discussion topics included advocating for yourself in the doctor’s office or in a workplace or academic setting, and advocating for proper self-care and greater awareness about PH.
Conference attendees also sent 500 messages to federal lawmakers advocating for passage of the Safe Step Act, legislation to ensure PH patients can access the right therapies and medications without unnecessary delays.
Putting my health first
The conference provides space for support groups. Through my partner attending the caregiver support group, we met a couple who shared their tips for traveling with oxygen concentrators for overnight sleeping. For prior travel, especially long trips during the holidays, I never took the steps necessary to ensure I would have an oxygen concentrator. I would feel more sluggish and tired during those trips as a result.
For a trip to California last month, I booked an oxygen concentrator ahead of time to be delivered to the hotel. While it was somewhat expensive, I’m glad that I made the extra effort to prioritize my health. I know this wouldn’t have happened if not for those conversations at the conference.
The conference acts like a salve for the creeping feelings of isolation this disease brings. There is magic that happens when our community comes together. I hope to see more PHighters at the 2024 conference in Indianapolis!
Follow Mike 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.