The Challenges of Traveling With Chronic Illness
When we hear the question “Did you pack everything but the kitchen sink?” my family’s answer has always leaned toward “Yes.”
Since being diagnosed with pulmonary hypertension (PH) in 1999, my family has never been able to travel lightly. But the efforts we’ve put into traveling have always outweighed the option of not traveling at all.
In the early years, the greatest challenge was my IV drug Flolan (epoprostenol GM), which required refrigeration at all times. This meant that my family would appear at the airport check-in with a cooler in tow.
Other medical necessities included my pillbox, with sufficient excess supply in case travel plans fell apart, mixing kits, and dressing change kits for my central line. My mother liked to pack other things that might be needed, like a baggy of paper towels and hand soap. Ultimately, we always felt that overpacking was the safest move. If there was a chance we would need something, it came with us.
When I was in high school, my doctors recommended I use oxygen when flying. Not long after that, they prescribed it for sleeping as well. We quickly familiarized ourselves with a flight-friendly portable oxygen concentrator and obtained written permission from my doctor to bring it on board the aircraft, both of which were quickly added to our travel supply list.
The other major component that was always considered when traveling was our access to healthcare. My parents always made sure we traveled only to locations with an English-speaking hospital within a reasonable distance, and where airlifting was an option.
Until my heart and lung transplant, I was afforded the opportunity to travel to many wonderful places. From Whistler, Canada, to Mexico, and several U.S. states in between, I never felt like I was missing out.
Unfortunately, we never trekked overseas, which always seemed a bit too daunting. But I have witnessed other PH families successfully negotiate their way to Europe and beyond. Ultimately, in my 19 years of living with PH, I learned that you can get yourself anywhere you wish to go with enough planning and research.
This is a lesson I have tried to hold on to following transplant. My list of required meds and equipment has grown quite long and a bit more complex. While sensitive IV meds have been left behind, I now require a tracheostomy and an overnight ventilator. I also need oxygen full time, which I consider to be one of the greatest barriers to travel.
With all of this in mind, travel has seemed far away and unrealistic. But trapped in a haze of endless COVID-19 isolation, my family finally decided to attempt a trip to the northern shores of Minnesota at the end of August.
A quick five-hour drive from our home, we have traveled there countless times in my life, so it felt like a safe place to try to get to. In a worst-case scenario, we would simply pack up and drive home. So, on a Saturday morning, we loaded up two cars with a ventilator, an oxygen concentrator, an oxygen tank filler, and countless bins of medical supplies.
It was a lot of effort — more than we have ever had to give before. But we were able to enjoy five full days as a family in one of our favorite places, something I truly doubted would ever happen again. And somehow, we didn’t forget a single thing!
I don’t know what my future looks like in terms of traveling. I always imagined I would be quite the jet-setter after transplant, and it has been one of the hardest dreams to grieve. Our trip up north was lovely in so many ways, but it also affirmed how difficult it is for me to spend even one night away from home.
Part of my struggle is a lack of resources. The PH community offered so much conversation about how to achieve things like traveling, something I now find myself lacking with my mixed bag of diagnoses. Certainly there are people in the world who use ventilators and oxygen, and who also have managed more than a road trip. Perhaps there’s just not enough of them for a rule book to be written yet.
I hope to continue figuring it out and sharing how it can all be made possible. And truthfully, if I only get to go to the northern shore for the time that remains, I don’t think I would put up too much of a fuss. Even this slight change of scenery felt like a great mercy and a wonderful relief.
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.