I learn a hard lesson about traveling with pulmonary hypertension

I live with both idiopathic pulmonary hypertension (PH) and scleroderma, and earlier this month, I was taught a lesson in how quickly things can unravel when you’re with people who are well-versed in one condition while you’re dealing with symptoms of the other.

I traveled to Washington, D.C., to advocate with the Coalition of Skin Diseases for those affected by scleroderma, but the people I was with didn’t have much background on PH, and didn’t recognize hypoxia.

The first day was an orientation and reception, during which we planned our strategy for the next day’s meetings. I enjoyed meeting everybody, and though I went to bed early, sleep eluded me. The next morning, we took a short bus ride to a house near the Capitol that would serve as our base. After breakfast and a group photo, we split up for meetings. With time before the first one, we returned to the house, and I immediately fell asleep — my body’s first warning sign. Still, I was determined not to miss out.

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Pushing through

I spoke little during the first meeting. By the second, my thoughts were muddled, and I struggled to form sentences. My group lead took over as I focused on staying upright. In the final meeting I attended, I could barely speak at all.

A PH crash isn’t just tiredness; it’s when my oxygen drops so low my body diverts energy to basic survival. Thinking clearly is impossible, and safety is a real concern. I was physically present, but unable to make safe decisions for myself.

At lunch, I decided I’d rest at the house and get my phone, but even writing a message on a Post-it note to my group lead was difficult. I could only manage a few words before losing focus.

Jolie Lizana stands next to the steps of the U.S. Capitol during a recent trip to Washington D.C., to lobby on behalf of scleroderma patients. (Courtesy of Jolie Lizana)

Suddenly, I found myself outside on a busy street and realized I’d walked out through the Senate building. I didn’t know how to get to the house and had no phone; my memory of landmarks was spotty. I tried to orient myself by recalling the directions from the Capitol, noting the construction and a busy intersection, but everything seemed far away. I had no choice but to keep moving, scanning for something familiar.

Just as I was about to turn back, a sticker on the sidewalk triggered a memory; I was on the right street. A little farther, I saw a street of homes that ran diagonally to the Capitol and I recognized a unique birdhouse that marked the turn. I couldn’t remember the color of the house, but I recalled its doormat. I walked down the street, checking doormats until I found the right one. Exhausted, I stumbled inside the house and passed out for hours.

When I woke, I still felt awful, but the fear of getting worse pushed me to make a dash for the airport. I tried to find the nearest Metro station, but was confused. At a street corner, I saw only a large metal box where my map said the Metro should be. I watched people approach the box and disappear.

I remember thinking, “What the heck? Is that some kind of magic box?” That’s how low my oxygen was. It took me a while to realize it was actually an elevator down to the Metro. My thinking had become so impaired.

I don’t recall much about getting to my gate. I lay my head on my luggage and slept for hours in the noisy terminal. My flight was canceled due to bad weather, so I had to find a hotel.

I finally made it home the next day. I slept through the flight and for most of the next three days. My oxygen remained low, and the thought of how dangerously low it must have been during my ordeal still frightens me.

What I want others to learn

As I look back on what happened, I realize the people I was with didn’t know me or what hypoxia looked like, and I never asked for help. I was so focused on making it through the meetings that I didn’t have enough functioning cognition to recognize how badly I needed medical attention.

If you live with PH or any unpredictable condition, please keep my experience in mind. Always prepare for the unexpected, make emergency backup plans, and remember that your well-being matters far more than any meeting or event.

I went to Capitol Hill to advocate for others, but I came home reminded that I must also advocate for myself.

Follow me for more insights on Instagram at BreathtakingAwareness or Facebook at Breathtaking Awareness.

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.