10 tips for traveling with a lung disease

Admiring the view of Eilean Donan Castle in Dornie, Scotland

We’ve been on the road for over 8 months! Even though we’re still figuring things out as we go, there are things that I’ve learned help us travel easier and better since I have this really annoying lung disease called LAM. Hope these tips for traveling with a lung disease (or possibly any chronic illness) are helpful.

1. Research all accomodations to ensure they have elevators or a manageable amount of stairs

This includes reading reviews to see if there are pesky hills hiding somewhere. And it’s easy to email people on Airbnb with this question before booking.

2. Take the extra time to look for elevators or escalators at public transportation stops…

…or bridges… or pretty much anywhere there are stairs. This is something I really hate doing but Justin always convinces me it’s for the best and I’m always grateful.
Elevator, Stockholm, Sweden There could be an elevator hiding around that corner when you least expect it!

3. Relish naps, especially after flights

Post-flight naps were actually prescribed by my doctor and I am very compliant! I also take a good nap a few times a month. When you have a chronic illness, listening to your body when it’s tired – especially while traveling when you will probably be tempted to push it – is really important.

4. Pack light

Do you really want to expend your precious energy carrying your suitcase (or make your husband carry it for you)? Disclaimer: still working on this one, but my packing skills have definitely improved! 

5. Arrive at airports extra early

This is especially important if you have a portable oxygen concentrator (POC) like me. Some airlines don’t let people with special medical needs check in online ahead of time, which means longer lines. And more often than not, the POC is examined and tested by the security officers. For me, it’s not possible to run through an airport for more than about 10 seconds, so I try to not put myself in the position to have to do so.

6. Ensure paperwork for POC is in order and that you remember all POC-related accessories

From personal experience (which involved Justin convincing a cab to speed back and forth from LGA to our apartment and us barely making our flight), airports typically do not have oxygen cannulas hanging around in a back room somewhere. And I try to bring several copies of all forms.
Flying with my portable oxygen concentrator

7. Make time for exercise during your trip

Even if you walk a lot while sightseeing, that’s most likely a leisurely walk and it’s important to get your heart rate up on occasion. It’s great to stay in accommodations with gyms, but when that’s not available, I have used my POC to power walk around parks or have done sit-ups and push-ups inside our room/apartment.
An Corran beach, Staffin, Isle of Skye, Scotland

8. In the words of Kurt Vonnegut, “wear sunscreen”

Of course, this is good advice for everyone, but for those of us who get super tired at the end of busy days, if you’re burned, you’ll be down and out come sunset.

9. Keep hydrated

See above but replaced “burned” with “dehydrated.” We always carry a bottle of water with us wherever we go. Although, disclaimer: I’m still working on actually drinking it!

10. Enjoy!

And be grateful for every minute you are seeing and doing new amazing things in this world. And seriously, pack light!

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10 tips for traveling with a lung disease from someone who has traveled the world with one

9 Replies to “10 tips for traveling with a lung disease”

  1. great post on how to travel with a rare disease xx

  2. shared on my blog 3sistersabroad.wordpress .com cheers Sarah – Bree

  3. great tips! Especially the sunscreen tip. Those of us on certain drugs like rapamune are more sun sensitive as a result. Even after transplant it’s important to have these because of energy levels & how we respond to our drug regimens can vary. The naps might take on more importance there too. Some drugs have a side effect of drowsiness as well.

  4. I do love the “hiss” signs for elevators in Sweden! Great post!

    1. Sarah and Justin says: Reply

      Aren’t they great!? Glad you enjoyed the post.

  5. Wow a very fascinating post! I agree with every tip, definately with the napping and packing light aspect. What would you say is packing light for say a 1 month trip? The last couple trips I did involved two large pieces of luggage (around 50 pounds each) and/or a duffle bag. It was very tough.

    1. Sarah and Justin says: Reply

      Thanks Amber. We packed much more strategically for this journey than shorter trips, but I’ll take what I learned for the future. We each have 1 rolling duffel that weighs between 14-16 kg depending on the day and how well I pack them! We also have to carry the portable oxygen concentrator and then have 1 other backpack. I recommend using packing cubes for your clothes. Makes everything more compact. We do laundry about 1x per week so pack about 1 weeks worth of clothes (with a little extra for buffer and variety). Hope all that’s helpful!

  6. How great that you are able to do so much traveling! I am traveling to Italy in the winter, and, despite some chronic illnesses, I’m really looking forward to it. It’s been three years since I last took a trip overseas from the U.S. I always seem to have more energy when abroad; the joy of travel, the lesiurely meals, and all of the walking do wonders for me. This time, I’m feeling a little more challenged thinking of the physical aspects of traveling, but I wouldn’t miss it for the world. It’s so great to learn from others how they accommodate any physical issues while traveling. Your article has some great suggestions. Number one is to remind myself not to be either embarrassed or discouraged if I have to seek out elevators and if I have to rest.

    1. Sarah and Justin says: Reply

      I’m glad you found this post helpful! Italy is such a beautiful country with the most amazing food! Have the best time and take it all at your own pace so you can enjoy it. Who cares what anyone else thinks! (Took me a while to get to that point, and I still struggle with it sometimes, but it’s good to have it as a mantra!)

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