Having lived with PAH for over 12 years, I vowed never to let it control my life.
Our family loves to travel, and I was not about to hold them back. So, I started to look for ways to make travel for me and my "gear' happen.
Where to start? First, you should discuss your travel plans with your PH medical team. Once you have their blessing, let your dreams and planning begin.
Having figured out where you are going, you will need to work the transportation angle. It's not as scary as you might think.
Flying is the trickiest if you need supplemental O2. Check with the airline you have selected to see what kind of POC (Personal Oxygen Concentrator) they permit onboard. Be sure to order one on the airline's approved list from your local O2 supplier. Be sure to get enough batteries for 1.5 times your flight time as this is a requirement for most airlines as some airlines may not permit you to use the AC adapter onboard.
I do not like surprises when travelling, so I take all paper copies of all my required documentation with me. While it is great to have everything on your phone, if it gets wet, lost, stolen or damaged, this could be problematic (it did happen to us once!). I choose to carry the following with me:
Letter of approved travel from my PH Doctor
Complete the medication list, including your dosage
List of medical supplies (IV or SubQ)
Most recent medical report
Medical team contact
Travel Insurance
Travel documentation such as flight, hotel, cruise, train etc
Remember to keep all your medical supplies and medications with you en route to ensure they won't get lost! It may seem trivial, but should any of those supplies or medication be lost during your travel, it could ruin your vacation.
For those using infusion pumps (IV or SubQ), taking an AquaPac or equivalent will give you the freedom to play in the sand, dip your toes in the lake/ocean, or even go swimming if permitted.
While travelling, it is a good idea to stay as close to your regular routine as possible. If you get overtired one day, you won't be up to much the next day and could miss out on activities or sightseeing you wanted to do. Take all your medication even though you might have to adjust to time changes.
I have travelled fairly extensively since being diagnosed. Being on triple therapy, Tadalafil (Adcirca), Macitentan (Opsumit) and Treprostinil (Remodulin), as well as O2 for flying and sleeping, can make travel a little more challenging. But once you have travelled a couple of times, it gets easier.
We have been international many times, and this summer, we did a Northern European and Iceland cruise for 11 days plus a few days in London, England, before the cruise started. It was an amazing trip; the kids came along with us, which added to the total enjoyment of it for us.
As a patient, I prefer to travel by cruise ship. On some of our previous travels, I have found it exhausting packing up after a few days to move to the next city, next hotel etc. and then doing it all over again.
When on a cruise ship, I get to our cabin and unpack. Then I only need to pack again once we are ready to head home, 7-14 days later!
You can visit as many or as few ports/countries as you wish from the ship. There are lots of different dining and entertainment options available. For those who want to relax, there are many areas to play cards, bingo, casino or lounge in the sun. If you like to hit the gym, track or yoga, they can accommodate this too. For the really adventurous, some ships offer a ropes course, waterslides, go-carting, running tracks, games rooms, ping pong or even shuffleboard.
Just because you have been diagnosed with PH and love travel, don't let that stop you! There are many ways to continue to travel and explore as you desire.
For those I haven't had the pleasure to meet yet, I'm the shortest one in the photo taken in front of NCL Prima docked in Bruges, Belgium.