The Challenge of Traveling with Oxygen

The Challenge of Traveling with Oxygen

Just breathe, passionate help for the PF journey

As a pulmonary fibrosis patient, I try to stay as active as possible. But as my disease has progressed, it has been harder and harder to travel. Just a few days ago, my husband and I traveled 400 miles to see my 94-year-old father whose health is failing. The trip was really hard to do, but seeing my father was worth it. I’m still recovering.

Bringing oxygen

(Photo by Kim Fredrickson)

I use 8 liters per minute of supplemental oxygen. To travel, I need to bring two liquid oxygen tanks in my car. These tanks provide me oxygen to use in the car and allow me to fill my portable oxygen tanks. When I’m at the hotel, I use my oxygen concentrator. The picture to the right shows my backseat with the two tanks, the concentrator, and one of my portable tanks and cart.

Traveling really wears me out and I can only tolerate sitting in the car for four hours at a time. We took two days to drive to see my dad, and two days to get back home, plus some time to visit. While we were there, we also were able to see my sister, our son, and a good friend.

All the details came together, for which I am so grateful. The result is I’m tired — very tired. We’ve been home two days, and I am worn out. I’ve barely left my recliner, and can’t imagine leaving home anytime soon.

(Photo by Kim Fredrickson)

Setting priorities

I pushed myself to see my dad, because I wanted to see him before he passes on, and I didn’t know how much longer I could make a trip like this. I used to be able to fly with a portable oxygen concentrator, which would have made this trip a lot easier. Now that I am using oxygen at such a high level, there are no portable oxygen concentrators that function at high enough elevations for me to be able to fly.

(Photo by Kim Fredrickson)

One option of traveling with oxygen is having your oxygen provider deliver a concentrator and oxygen tanks to you wherever you are staying. That is a good option but makes me nervous. I’ve had spotty success doing this in the past. I prefer to bring what I need with me if possible, but it is a lot of extra work, especially for my husband who had to haul the heavy concentrator in and out of the car every day.

It’s gotten to where I really need to evaluate what type of travel I’m willing to do because it is such an expenditure of my energy. Besides the actual travel, a lot of effort goes into getting ready beforehand and unpacking after. My suitcase still isn’t unpacked.

Last May, I did a fundraiser to hire an air ambulance to take my husband and me to our son’s wedding 2,000 miles away. That was one of the happiest moments of my life, and I am forever grateful to those who gave so I could be there. Here’s a link to a column I wrote about it with all the details and pictures. I’m smiling just thinking about it.

This trip was worth all the effort, and I’m glad I went. I doubt there will be much travel in the future, if at all. My encouragement to you is to really think about any trips you’d like to take, and do them soon if at all possible. Our health can change fast, so seize the moment while you can!

I’d love to hear from you

What are your experiences traveling with oxygen? What are some tips that make traveling easier? What jumped out at you from this post?

Please leave a comment below, and share with those who could benefit via email or on social media.

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Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

32 comments

  1. Sandy says:

    I think that you are very brave. I’m quite a bit older than you and get very stressed riding in a car, hence we don’t travel. I just worry that pushing yourself doesn’t escalate your problems.

    • Dear Sandy,
      Thanks for your comment. It helps that you know how tiring it is to travel by car. So sorry that is so hard for you too. I was concerned it might escalate my problems too. So far so good. I don’t travel too much because of that concern. My Dad’s health s failing, and I wanted to see him one more time. Thanks for sharing.

  2. Marj says:

    Great information, thanks for sharing. I did fine with the little portables when I was at or under 3L but since going up to 7 it’s been a real challenge just getting out to dinner. My husband has had back surgery so hefting all that equipment puts him at risk. Nice to hear of your experiences. Best wishes

    • Thanks for sharing Marj. You are so right, needing high flow O2 (6lpm and over) makes getting out so much harder. I worry about my husband having to lug that concentrator in and out of the car, and he hasn’t had back surgery. Thanks for being happy about my trip 🙂

  3. Jim says:

    The last flight I took was over three years ago. I simply had to give up flying. It’s such a shame because as a retired airline employee I enjoy flight benefits and can fly for free. So what stops me? The number of batteries I need to lug around and the total weight involved. Airlines require that you have enough oxygen for 150% of the published flight time. And, because of security, you need to be at the airport at least an hour before flight time. Also, I need to have a wheelchair and especially at smaller airports, they may not be readily available. My last few flights were out of Memphis, where you have to park in the lot and then call for someone to bring you a wheelchair. There are no telephones in the parking lot. If you have a cell phone, you can call, but I’ve waited up to 45 mins. before a chair arrived. Before I had a cell phone, I had to ask police or total strangers to request a chair. But the simple fact is that you have to lug around so much heavy and bulky equipment. It’s worth noting that not too many years ago, airlines would supply oxygen tanks on request with advance notice. The charge for this service was $100 per segment. But they stopped doing this. For this reason, international travel is out of the question under any circumstances. I shudder at the thought of even calculating how many batteries I might need to go to London (as an example). By the way, for those not in the know, you are not allowed to use liquid oxygen or compressed oxygen tanks aboard aircraft, only portable oxygen concentrators. Bon voyage.

    • Dear Jim,
      I totally know what you mean! I flew with an Inogen G2 (pulse up to 6 lpm) for 2 years, and it was quite a production. I didn’t know they used to provide oxygen on a plane. Boy, what a difference that would mean for all of us. What a shame you are unable to fly with the benefit of being able to fly free. So sorry. Thanks so much for sharing your input on this important topic.

  4. Robin Ives says:

    Hi Kim – what a wonderful thing to be able to visit your Dad – such a blessing. George and I are going to travel for the first time in May. I must admit I am very nervous. We are going to trade in the rented “tanks” for a POC instead of purchasing one. The cost doesn’t seem smart if his needs change and we can no longer use the one we buy. I do need to get in touch with the airlines and get exactly what they need down pat. I am nervous and concerned but at this point since he doesn’t “need” it when he is sitting, I know I should just relax and realize worse comes to worse – he sits, right? These past few months have been exhausting as I worry about him. But it has only been 3 months so I hope soon we will get used to it and have a routine down. It seems to take forever to get where we need to go when heading out. God willing he will stay where he is for quite some time. Wishing you the best, as always….

    • Hi Robin,
      Thanks so much for being happy for my trip to see my Dad. I can see how you are nervous to fly for the first time. You’ll get the hang of it. Here’s the basics: Go to your airline website and print out the form you need to have your doctor sign that states you can fly with a POC. They require you to bring twice the amount of batteries of the flight time. If you have a layover, bring a charger to plug into the wall to recharge the batteries. Your POC needs to go twice as high as he needs when sitting, to offset the effect of the altitude. Most planes are pressurized to 8,000 ft. Since George doesn’t need O2 when sitting, he might need 2 or 3 lpm in the plane. Also get your provider to give you a charger to use in your car. My other idea is to bring money for tips. This is the time to have porters load your luggage and bring it to check in, and help in baggage claim, and then to your car. If you are staying in a hotel, tip them to bring everything to and from your room. I hope this helps a little. Sounds like I need to write a column on this!

      • REBECCA HERRLE says:

        American airlines and others no longer require doctors forms. there is a list of pic on their sites. clearing secuity was no problem with inogen.

        • Rebecca, that is so good to hear. I used to use an Inogen when I could fly, and they patted me down and wiped it to check for explosives. They were always very nice, but it took a little longer. Thanks for sharing.

  5. Jack Shafer says:

    You are fortunate to have provider who offer the 20ltr tanks. Mine does not and I will be forced to use 16 tanks for a move of 1600 mi. Terrible inconvenience by United Medical.

    • Oh Jack, I’m so sorry. That sounds SO HARD. I get so angry at some of these providers for making it so hard for us to get the oxygen we need. Please make sure those tanks are strapped in upright. I so wish you didn’t have to go through this.

  6. BJ Anderson says:

    My almost-70 yr old partner of 27 yrs was just diagnosed with IPF in January. She’s at 6 lpm. We’ve been learning that airlines only allow concentrators up to 5 lpm, so for a trip to Dallas from Chicago in May, we’ve booked an o’nite Amtrak and reserved the larger bedroom of two options. It isn’t cheap, but seemed the most comfortable way to go. Friends who used Amtrak from Baltimore to Florida were frustrated because the aisles were so narrow from the sleeping compartment to the dining car or observation car that a walker wouldn’t fit! So they spent the entire trip in their sleeping room.

    • Hi BJ, I’m so glad that you are able to go on the train. I was able to take two train trips before I went up to 8 lpm. We used the large bedrooms too and it was nice to have. The meals were good, and it was a nice way to travel. Here’s a few hints, having the concentrator in the bedroom puts out a lot of heat in a small space. Bring a small fan, which helps. The bedroom doors lock, but then you can’t get air in to help cool down the room. We left it a little open, but used shoe laces to tie it shut on the inside. I’m sure there are other ways to do this. I would encourage you to bring money to tip the porter to put the concentrator up the steps into the train. Well worth the effort. So sorry your friend had to spend all that time in the sleeping room. They are right, the aisles are pretty narrow, and won’t accomodate a walker. I hope you enjoy your trip. It truly is a pleasant way to travel!

  7. Shavonne Thomas says:

    Hello kim & thanks for sharing , today i just spoke with Dr’s about me flying to new jersey from Florida , to my stepdaughters basketball tournament in april. I was told no i couldn’t go because of the high altitude & the troubles it takes for this process, its sad because their should be a better way without going through the hassles of carrying your own OXYGEN aboard. Anyways last weekend i took a short trip to an event that i was hosting , it was by car _ i am so worn out eith flare ups and major pain
    I guess i will travel locally from now on..this disease sucks …

    • Hi Shavonne,
      So sorry that this disease is stopping you from doing what you want to do. How awful that you can’t go to your stepdaughters basketball tournament. Ugh…you’re right this disease does suck! I encourage you to find some local places to go that brings you joy 🙂

  8. Maureen Lake says:

    Glad you were able to make more memories with your dad & family. I’m planning on going to Ireland in July. Am going with my sister & my niece who are both nurses. I am only on 1-2 liters on exertion, but on the plane I require it continuous. I may have to get either more batteries or another concentrator as my batteries only last 2-3 hours on 3

  9. Mary Palmer Antonelli says:

    Thank for your post and for the photo of the LOX reservoirs in your car. Can you tell me which LOX reservoirs fit in the car? I am told the Liberator 10 is no longer available. The Liberator 20 (21) may be too tall to fit in the car and still be able to fill the high flow stroller portable by placing it on top the Liberator. Also the L 20 is very heavy when full. I believe all the reservoirs are top fill. Is your stroller portable top fill or side fill? I have been trying to find info on this issue and there does not seem to be much available. We live in Calif. and would love to drive for an overnight but need, as you do, 8 lpm. Suggestions most appreciated. Can you also tell me the name of your LOX provider please? Thank you so much.

    • Hi Mary,
      I’d be happy to answer your questions. My provider is Apria. The Liberator 20 is top and side fill. We position the tank so that the place you fill it points toward the door, so it is easy to fill this way. If you look at the picture, you’ll see the metal tube sticking out. That is where you fill it. I bought two strollers myself because the strollers I was being provided weren’t reliable, and I had a few close calls where it said it was full, but wasn’t. Pressure them to give you the L20. I was told they were not ordering anymore of them so I asked my driver to be on the lookout for one. He let me know when one became available, and I was able to get it. Hope that helps 🙂

      • Mary Palmer Antonelli says:

        Hi Kim,

        One more question. Did you buy the side fill Strollers in order to be able to use the side fill Liberator 20 in the car?

        Thank you again,
        Mary

        • Hi Mary, Yes I bought the side fill ones. I took a picture of the big tanks I have at home and e-mailed it to the person who was selling them, and he told me to buy the side fill ones, so I did.

  10. Melinda Rivera says:

    Glad to hear you were able to make the trip to see your dad.
    We have a family cruise planned for May and since my oxygen is 2-3 ltr sitting but 8-10 upon exertion, I cannot fly because my REspironics Simply Go batteries would only last 45 minutes each and they are expensive and I only have 3.
    For the cruise, I will be renting a scooter so I can be on 2 ltr oxygen sitting but I will also have to rent a SeQual Eclipse 5 that has batteries that last 2 hours continuous and get at least 4 or 5 batteries. It gets expensive but I at least want to make this trip. I am on the lung transplant waitlist but you have to keep living.
    I enjoyed reading everyone’s stories.

    • Hi Melinda, So nice to hear from you. Love your plan to do what it takes to go on the cruise. Good for you. You can plug in the SeQual when you use it at night. So glad you are continuing to enjoy life and these precious moments. Have a great time!

  11. Julia says:

    Hi i am new to this site I have just been told I need oxygen to fly I am on 3lt but I don’t know were to start any help will be appriciated

    • Hi Julia,
      Welcome! I would contact your airline to see what is needed. They are all a little different. You should be able to rent a POC form your oxygen provider to use on the flight. My experience is you will need almost twice the O2 in flight that you need when you are sitting at home. When I was at 3-4 lpm, I was able to use my Inogen G2 set on 6 lpm (pulse), and did fine. You want to keep your oxygen level above 90%. Most likely you can ask your oxygen provider to deliver a concentrator to use at the hotel or home where you will be staying. I hope this helps.

  12. Arras says:

    Just flew Delta to Europe and back. I did not need a doc signature, but I did have to submit paper work to Delta. They queried me about sizes and number of batteries for my POC prior to going. I did not have to show anything when boarding my flights. No checking to see that in fact I had the 150% of batteries for the lengthy flight or that I did in fact have the concentrator I had stated I would use. My flights to and from where 4 months apart, and I did not have to do a thing for the return flight. The paperwork I originally did was sufficient for the return flights.
    It seems that the airlines have relaxed considerably about POC use while in flight.

    • Arras, thanks so much for sharing such great up to date information. That is very different from the experiences I had 1+ year ago when I flew last. So glad they are making flying with a POC so much easier. Thanks again for sharing!

  13. Marion says:

    Kim, thank you for sharing. I’m worried about going to my niece’s wedding and we’re driving and staying over. I’m bummed that my 02 provider no longer has the POCs that you plug in and I have 3 refillable little tanks which is a pain in the neck because where am I going to refill them in the middle of a long wedding you know? It is something that I’m thinking about and we will be bringing the home concentrator to the hotel however I’m going to have to rent a plug-in one because that seems to make so much more sense to move myself over to a plug to recharge at the reception. It’s all so much work and time-consuming that I get to the point I don’t want to do anything. I also HAVE RA which caused the pulmonary fibrosis and I have MS so it’s all such a hassle. my husband died at 37 so that help isn’t available. All this is a pain in the neck you know?

    • Hi Marion,
      So sorry you are dealing with so much. That is A LOT! I know it is such a hassle. Sometimes I get overwhelmed too, and just say, “forget it!” I do encourage you to rent the POC to attend your niece’s wedding. Those moments are so precious. I can tell you are very brave. You can do it! Many blessings to you.

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