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

11 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!)

  7. I have IPF and carry a portable oxygen concentrator (POC – InogenOne G3). Your prior post re different airline requirements for POC’s was helpful in anticipating the requirements of different airlines in Asia.

    Our experience (Oct.2017) on United, AirAsia (Indonesia), Scoot, AirVietnam, LaoAir and China Air could not have been easier. United requires its preflight authorization form (signed by MD), and its helpful with ChinaAir, but with my separate MD letter and the fact everyone knows and accepts InogenOne G3s, I felt we could have approached any of the airline’s special service counters and after quick inspection of the POC, assurances of adequate batteries (InogenOne dedicated), and our MD ltr, would have received boarding passes. We had no prior approval from LaoAir, and possibly AirAsia, but each was fully aware of the POC need, and the device and moved us through courteously and quickly (for the most part). The airline world in Asia at least, is comfortable with POCs. Especially if your are courteous and assertive of your knowledge of the device and the issue. Few airline personnel are, but someone with authority is quick to approve.

    What your post has not said is that with an MD letter than includes reference to need for wheelchair assistance at the airport, one using a POC can have wheelchair assistance provided (with some airline, at no cost and others a nominal — $25USD cost), preboarding at the gate so no lines to stand in, and even “extra legroom” coach seats at no added cost (at least on United our last 2 international trips).

    I was reluctant to consider wheelchair help until we were stuck in Mexico City for several hours before a connecting flight and my POC batteries were very low. Mexico City is about 7,300 ft elevation, higher than the pressurization of planes which require use of the POC. And we had to walk quite a ways between terminals. Ever since, I have relied on wheelchair assistance and been whisked through airports faster than I could have ever run through airports.

    The only downside to relying on wheelchair assistance is that with a wheelchair, you and the wheelchair can’t have all the advantages of TSA precheck because the wheelchair must go through x-ray screening. So while you are usually taken through a different, shorter TSA line, you must take out things from your pocket, POC, oxymeter, etc. and are slowed down. Also, sometimes your belongings are separated so you must take greater care to get everything before proceeding on to the gate in your wheelchair.

    But using a wheelchair and taking full advantage of the extras airlines give to help those with diminished capacity to walk great distances or stand in lines makes international air travel even more exilerating than it was before my current health issues.

    1. Sarah and Justin says: Reply

      Thank you very much for sharing your personal experiences traveling with a POC and wheelchair assistance. I’m particularly glad that you had such positive experiences in Asia and couldn’t agree more that knowing everything there is to know as a traveler – and being kind and courteous! – makes the process easier. You make some great points about wheelchair assistance. And of course now I’m curious about your time in Mexico City! Did you stay there long? It’s on our bucket list mainly because of the food but I’ve been hesitatant given its high elevation. I’ve never spent extended periods of time traveling at high altitude.

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