Connect
24/7 oxygen - how to continue travel and enjoying life?
Hello friends! After being diagnosed with stage 4 lung cancer with mets to bone, I have experienced a collapsed and trapped lung which has created a requirement for 24/7 oxygen supplementation at 2LPM.
I have a ROVE6 that I can wear in a backpack and it is very helpful.
My concerns seem to mainly revolve around being afraid I will put myself in a situation that I won’t be able to handle!
Can anyone with experience in this situation share if you have traveled, say by train, car or air with a home oxygen concentrator? Or if you have solely depended on a portable, or brought along air tanks?
Many thanks in advance! Good luck, hugs, and prayers to all who are affected by this dastardly disease!
Like
Helpful
HugInterested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.
Connect
I see that you haven’t had any responses yet, so I thought I would share my father’s experience. He passed away many years ago now and suffered with COPD. When not at home, he used portable oxygen tanks, at the time he wheel it behind him on a luggage type cart, then later in a backpack. Extra tanks in the car trunk. He took many road trips and enjoyed a lot of travel with our families. He did fly on a couple of times, but at that time the portable system was very cumbersome. Advanced arrangements with the airline were necessary. He would take advantage of any accessible features at resorts, hotels or national parks. He didn’t usually use a wheelchair, but at amusement parks with his grandchildren he was the star of the show when he got them to the front of the line.! Importantly they all had a great time, and lasting memories. I would encourage you to do what you can start locally and expand your horizons and take your time doing it. Enjoy life as much as you can.
-
Like -
Helpful -
Hug
2 ReactionsThank you for replying and sharing your father’s experiences. He sounds like a man who knew how to live and enjoy life! I know you and your family enjoy those memories. I need to get busy making my own! “Don’t worry, be happy!”🎶🎶🎶🎶🎶😊
-
Like -
Helpful -
Hug
1 Reaction@curiouskitty, I added your question to the Lung Cancer and the Lung Health support groups as well.
As more tips come in, you may also appreciate the helpful advice shared in this older related discussion:
- Traveling and flying with oxygen https://connect.mayoclinic.org/discussion/flying-with-oxygen/
Hello. I imagine you have now learned the difference between continuous flow and pulse flow and how pulse flow doesn't really give you the same as your home concentrator.
I have a prescription for 2L continuous flow for exertion and sleep.
I get by with my Inogen Rov 6 (set at max) when I go to store or am out walking. And I have flown with it to Florida. I had been tested and the result was that I did not need O2 during flying, but my oximeter told me otherwise! Fortunately, I had my Inogen with me and used that. Airlines want you to come with sufficient batteries when flying
I have Medicare and my provider provided the O2 concentrator for me when I was on vacation in Florida, so I had the stable concentrator for my night sleeping. I would not want to try sleeping with the Inogen portable even though they say you can
@vic83 thank you for sharing your experiences. Yes, I think it would be difficult to use the portable all night. I will have to look into having a home type of concentrator delivered to a vacation or other location. That would help!
@colleenyoung thank you for your help!
-
Like -
Helpful -
Hug
1 Reaction@curiouskitty My provider has an office in Florida so I just need to give them a two week notice. If they have a driver covering the route where one is going to stay, they drop it off. Otherwise one can pick it up from them. I also go to Mayo Rochester and stay overnight several times a year. My provider has an office in Rochester so they deliver to my hotel when I need it. Mayo Clinic also provides Oxygen while one is on their premises, but I haven't tried it.
@vic83 thanks for that info. Is this unit they drop off or you pick up in addition to the concentrator you probably have at your home? A loan?
@curiouskitty . Yes, it is in addition to my Inogen portable and the stable concentrator I plug in at home.
I have original Medicare with a Medigap policy that covers what Medicare does not pay. My local Provider gives me 1) stable concentrator for home - I plug it in and use it for sleeping 2) Inogen portable with battery which I use for going out etc.
For traveling away from home, I call my provider 2 weeks before and tell them where I am going. If it is on their route they will drop a concentrator off where I am staying. When going to Florida I was going to the Keys so I picked up the concentrator at their office which was next to the Miami airport. In Rochester they have an office (Mayo Clinic good business for them!) and they deliver a concentrator to my hotel in Rochester, then they pick it up after. Hotel management in Rochester is used to this as other people also have oxygen dropped off. My provider does not charge extra for the service. But they will not give me extra batteries for travel so I bought my own.
Portable Inogen has a charger for the car, but I have not tried it.
Check out the SOAR bill for oxygen and call your Reps. The Supplemental Oxygen Access Reform (SOAR) Act (S.1406/H.R.2902), reintroduced in April 2025, is a bipartisan piece of federal legislation designed to reform Medicare payment policies for supplemental oxygen
@vic83 I will have to look into this with my provider. I have original Medicare with a supplement as well.
And I will look into the SOAR bill you mention as well. Thanks for all your help!