I learn a hard lesson about traveling with pulmonary hypertension
I took a trip to advocate for others, but was reminded to self-advocate, too
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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.
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.
Carol Volckmann
Jolie, thank you for sharing your very scary story and why it is so important to prepare for the worse.
I also have Sclaraderma and PAH , and a number of organ complications. The biggest think I have learned is to ask for help and/or know the nearest PH Center hospital.
Julie, you are one very lucky women. Thank you again for reminding all of us to be prepared and ask for help.
And, thank you for all you do as an advocate and volunteer!!
Warmest wishes,
Carol
Jolie Lizana
Hi Carol,
Thank you for your kind message. It's encouraging to know the column is helping others learn from my experience rather than endure a similar ordeal. I am grateful nothing bad happened and am focused on moving forward. This experience reminded me that while I often act as though I can do anything, some days are harder. PH has a great deal of control over patients, and that's hard to accept at times.
As far as advocacy, I'm happy to advocate. There was a time when I was too sick to do so, and I had to appreciate those who could for what they did. It's my turn to do this for others. All the best! - Jolie
Holly Hannula
Hi there. I have PH but after reading your newsletter, I am now for the first time understanding what has been happening to me. You see, I have Systemic Lupus, Antipohsolipid Syndrome (APS),Atherosclerosis, PAD, A-Fib, and stenosis of the mesenteric artery, which is causing severe weight loss and diarrhea constantly amongst other things. First timesaver the Doctor decided to do a NT-proBNP test last week and was 2,268 pg/mL.My symptoms were/are being blamed on all the other things I have, such as extreme fatigue, out of reality (detached feelings)suddenly fall asleep, (similar to narcolepsy) extreme difficulty in breathing, severe dizziness and balance (similar to being on a floating dock)and chest pressure almost constantly. Not on meds because with the other issues mentioned, I also have kidney, liver disease, thyroid disease. I have most of these contribute to the high # of the NT-proBNP test. I'm assuming you are on a medication. Did the medication help your symptoms?
Jolie Lizana
Hi Holly,
Thank you for your comment. I'm sorry to hear about your experiences and difficulties. Are you seeing a pulmonary hypertension specialist? It sounds as though you are not. I highly recommend that you see one. Physicians who are specialized in the condition are best trained to understand its nuances and treat PH patients. The PHA has a list of accredited care centers in the U.S. This is the link: https://phassociation.org/pulmonary-hypertension/find-expert-care/
My second recommendation would be to write down your symptoms as they occur. Make sure your current care team and the PH physician are made aware of all of your symptoms.
Lastly, I recommend that you purchase a pulse oximeter and record your pulse and oxygen saturation on the symptom list for your care team and pulmonary hypertension specialist. Another important step you can do is track your weight. Write your weight down daily.
If you gain 5 pounds in a day or 10 over a week's time, notify your care team.
While I cannot give you medical advice, I can say that the best thing you can do is keep you care team informed of all of your symptoms, including changes in weight and oxygen saturation.
My PH physician has me on max dose of three PH medications. Without them, my body would not get the oxygen it needs. They help me greatly. Wishing you the best!
Janice
I was diagnosed with PH several years ago but didn't have noticeable symptoms. Now I have bothersome symptoms and am reading to learn more about my condition. I've been referred to a Pulmanary Hypertension Clinic but haven't been seen there yet. Thank you for these articles to help me!
Jolie Lizana
I cannot tell you how much I appreciate you telling me that these articles are helping you. That's what Bionews (Pulmonary Hypertension News) is all about.
Please come back to the forum with any questions or comments you have after you visit with the PH specialist.
This is an informative column. Have you read this?
https://pulmonaryhypertensionnews.com/columns/how-explain-complexities-pulmonary-hypertension-others/
Also, I'm one of the hosts of the Pulmonary Hypertension Association's podcast, PH Insights. There is a great deal of information here:
https://phassociation.org/events-and-resources/online-education/ph-insights-podcast/
Specifically, the Partnering with Your Care Team: Advocacy in PH – Part 1 & II will be helpful to listen to before your doctor's appointment.
Here are 4 website pages that will be a huge help for your journey:
Breathtaking Awareness (My website): https://breathtakingawareness.com/
Pulmonary Hypertension News: https://pulmonaryhypertensionnews.com/pulmonary-hypertension-overview/
Pulmonary Hypertension Association: https://phassociation.org/events-and-resources/online-education/classroom/?paged=1&category=living-with-ph
PhAware: https://www.phaware.global/podcast
I do not mean to overwhelm you. I put them in an order that I would consider following. I cannot say that is the best course for you, but this is the order I recommend.
Make the most of your appointment with the PH specialist by checking your weight daily and your oxygen saturation (O2 sat.) periodically throughout the day (and noting what you are doing when your O2 sat. changes). If your weight and oxygen saturation do not change, you can simply note that.
Lastly, on the paper with the weight and O2 sats. also begin writing down all your symptoms, when they occur (what are you doing when they occur), and any questions you have for your physician. It's easy to forget things when we are focused on what the doctors are telling us.
I hope this helps. Wishing you all the best!