A PH advocate finds hope in new research, anxiety at the airport

As someone living with pulmonary hypertension (PH), I am dedicated to advocating for the needs of the rare disease community. My advocacy efforts span various platforms: patients, healthcare professionals, and the broader public.

My work includes continuing my education and collecting resources for everyone in the rare disease community. Some of it is conducted through patient groups and by attending conferences. Building connections with others and establishing a supportive network and community is important.

I recently attended the Pulmonary Hypertension Association‘s (PHA) PHPN Symposium, which took place Sept. 18-20, in Seattle.

Conferences are an excellent way to grow a community, learn, and discover valuable resources. I enjoy the people and places, but not so much the actual traveling. Long travel days can lead to significant fluctuations in my ability to function.

I don’t travel much anymore, unless I’m attending a conference or an advocacy event. These events can be pretty intense. A full day of activities on Capitol Hill requires me to be attentive to my health to avoid any downturns. I’m on hyper-alert when I’m alone anywhere.

Living with exercise-induced PH means even minor physical exertion can rapidly decrease my oxygen levels. This ongoing challenge underscores the importance of being mindful of my medication schedule, as the timing can help or hinder my symptoms.

I usually choose accommodations at the conference venue, which typically offers discounted rates, and my son usually accompanies me, but I have traveled alone to PHA events. The understanding and readiness of fellow attendees to provide support for one another make me feel comfortable going by myself.

Recommended Reading

January 25, 2024 Columns by Anna Jeter

Understanding the terminology of PH is key for better advocacy

Off to the symposium — on my own

I traveled alone to this event and, as I packed my bags to head out, I had to calm my nerves and remind myself that it’s a PHA event — the place would be wall-to-wall PH doctors and nurses.

The trip went smoothly, with minimal jet lag. When I first arrived, I helped out here and there, and then did a bit of exploring. Everything seemed to happen at lightning speed, but I rested when I needed to and took time out for self-care.

Dusk in Seattle outside the Pike Place Market. The city recently hosted the Pulmonary Hypertension Association’s PHPN Symposium. (Photo by Jolie Lizana)

The symposium was informative, engaging, and well organized. The people there were eager to learn from one another and share their resources. The posters for studies were intense. The research being done is remarkable.

Medications are being developed and tested on pigs. A patch is expected to enter human studies soon, which is very interesting to me. Having more forms of treatment means more people can be helped who might have adverse side effects from a single form of the same medication.

Studies are being conducted to help physicians determine the best way to assess whether their patients are exercising enough to achieve a specific breathing pattern that yields positive results from pulmonary rehab.

There’s much going on in the pulmonary hypertension space, and I want you all to know this! It is a great thing, but we should all reach out to Congress to help protect research funding. I worry that things will change with rare disease research before the year is up. On a positive note, there was no shortage of brain cells at the affair, and when there’s a will, there’s a way.

I loved the symposium and the people, and I was fortunate to have dinner with some ladies from the PHA advocacy team. The view was gorgeous, although I was a bit sad there were no orca sightings.

A moment of panic at the end

I was excited to head home, so I took some extra medication to help reduce the fluid retention I had from walking and recharged my batteries on the last day.

I was overwhelmed by the long check-in line at the airport — probably 125 people deep. Panic set in. I wondered if I could stand long enough or if I’d need to sit on my luggage. Was that even possible? Alone and scared for the first time on my trip, I approached a security guard, hoping for help.

After explaining my condition, I was kindly allowed into the express lane — just eight people ahead of me. I could have been asked for documentation, but I think the panic on my face said enough. I don’t know how I would’ve fared in that long line, but the anxiety in that moment was tremendous — and they made it disappear. I’m deeply grateful to the Seattle-Tacoma International Airport. They see us!

Please share your experiences in the comments if you’ve attended a PH conference or encountered any issues at the airport. Follow me on Instagram at BreathtakingAwareness.

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.