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  • Traveling long distances

    Posted by allan-reinap on May 1, 2022 at 2:17 pm

    I signed up for this group about 1.5 years ago when first diagnosed with IPF.  My O2 level was always OK up until about a month ago with my last PFT.  Now, I use oxygen for sleeping (set at 1.5L) and I only use it during the day when my O2 level is down, usually winded from working outside or some other form of activity.  Most of the day I don’t need it.  Here’s my question:  my wife and I would like to go to Europe for a 15 day river cruise.  Has anyone in about the same “stage” I’m in with the disease, done a trip overseas? Being on the west coast (Reno,NV) would make for a long flight to get there.  I’ve already done a domestic flight with my POC (SimplyGo) with extra battery.  All went fine. I’m looking for anyone’s experience with traveling long distances without having to be on oxygen 24/7.  I am aware of the fact that things could change for me rather quickly, or, it could be this way for a while.  Thanks.

    christie replied 1 year, 6 months ago 9 Members · 12 Replies
  • 12 Replies
  • jacqui

    May 3, 2022 at 8:07 am

    Hello, Allan,

    I see I am the first one to reply. I am not a patient, but my mom, who has IPF, is about to embark on an overseas trip. She and my dad live in the U.S. and they are coming next week to visit us in England.

    At the moment, her oxygen use sounds similar to yours, if not more often (she does not use it 24/7). I know they’ve had to organize extra batteries and rent a portable oxygen concentrator so she can use it on board the long flight as needed (for some reason they won’t rent her only the batteries, so she can’t bring her usual POC). She has not needed to use it on a shorter flight previously.

    This is all new to us, but I’ll be happy to report back on her experience! Obviously, as you know, the extent of activities she’ll be able to do depend on how tired she is in general and specifically from the long trip. But like you, my mom and dad really want to do this now. She feels “okay” now, and they have had to postpone this trip since 2020 because of the pandemic.

    Good for you for planning this trip with your wife. A European river cruise sounds wonderful.

  • dougpys

    May 3, 2022 at 12:56 pm

    A couple of things to know.  1.  The air pressure in an airplane is set and 8,000 feet so you may need O2 on the plane but not in your home area. 2.  The airlines require at least 1.5 times the flight time in battery life for any flight.  You would also need to consider the time rushing around the airport before and after the flight as you may need oxygen then.  On my last two flights I was wheelchaired to the plane and to the baggage section as the walking was just too much.

    I can no longer fly as I’m now on tanks;  I recommend you  fly and vacation as much as you can as you never know how long you can use a concentrator as you can’t fly with tanks.   The advantage of the Simply Go, is that it can be plugged in and used continuously so it would work for sleeping.  If you google batteries you will find numerous source for the Simply Go batteries.  They sure aren’t cheap, but that’s the way it is.  Your provider may rent batteries and I’d look into that possibility.  Some airlines have 110v, but on the airline I flew on  didn’t produce enough power  to run/charge my portable concentrator.

    Check on the airlines web site as they may have forms to fill out to use your machine.

  • carroll-quin

    May 3, 2022 at 2:17 pm

    Up until 2020 we travel to europe 6 times for 4-6 weeks at a time.  My lPM was 2-3 and I was successful with carrying a POC for the plane trip and traveling. I also carries a 0-5 concentrator from Inogen as a carry on. While in my room I used it with a 25 foot hose and also used with my CPAP. It is very doable and fun.  Need to be careful if on a field trip and hike up hills.  I would say do it but discuss with your doctor in case there are conditions I do not know about. See as much as you can while you can. In my case I had COVID in 2021 so now I can no longer fly. Enjoy, Enjoy and Enjoy

  • thomas-johnson

    May 3, 2022 at 5:46 pm

    Hi Allan,

    I’m in about the same condition as you (I think).  We went to London, Paris, Venice, and Rome for two weeks. Flying wasn’t a problem for me, although I requested wheelchair assistance both ways through airports.  We’re going to Hawaii in a few months and I have no concerns unless I suffer a significant decline.  I use an Inogen G4.

    Good luck and have fun!



    • carroll-quin

      May 3, 2022 at 6:41 pm

      You are so correct.  I used wheelchairs at both ends. It seems I always leave something out

      Have a great day





  • sally-williams

    May 3, 2022 at 7:05 pm

    Allen, I believe that since you live at a fairly high elevation and a river cruise will be at sea level, you should be fine without supplemental oxygen.  I live at a slightly lower elevation and always feel fantastic at sea level.  I say don’t worry about the flight.  I fly fine without oxygen, although my longest flight has only been 4 hours.  Enjoy life while you can, that’s my mantra.

  • christie

    May 4, 2022 at 1:57 am

    Hi Allan, I don’t have much advice here but I just wanted to say hi to a fellow Reno-ite. 🙂 I grew up in Truckee and lived in Reno for 6 years while I went to school. I don’t think we’ve connected here before. Are you a patient at UCSF? My mom (3 years post bilateral lung transplant at UCSF) is still in Truckee.

    As for flying, like I said I don’t have much advice, but you do have the benefit of already living at a high elevation, so you can make a more accurate guess at how you’d feel flying with/without POC. Planes are pressurized to feel like 8000 feet elevation.

    • allan-reinap

      May 6, 2022 at 7:52 am

      Thanks, Christie.  I’m a patient of a local doc here in Reno.  After being seen by IPF doc at UC Davis in Sacramento, the local doc has ties to him and was recommended.  Much more convenient.  Still navigating my current condition and how trips overseas should be handled.

  • allan-reinap

    May 6, 2022 at 7:54 am

    Thanks to everyone for responding to my questions about traveling overseas.  I’m still navigating the whole process here and I’m looking forward to traveling as much as we can.

  • tom-hartigan

    May 11, 2022 at 1:11 pm

    My pulmonologist had me take a High Altitude Stress Test to determine if I could fly without supplemental oxygen before my first cross country trip.  I was cleared to fly without and I just felt better knowing.

  • phil-ryan

    May 12, 2022 at 9:02 pm

    It’s interesting to hear from the folks in Reno area.  I live in San Francisco and have been on supplemental oxygen for over a year.  My sister lives in Carson City (elevation about 5,000′) and when I last visited her (pre-Covid) and drove over the Sierras I really felt the difference in breathing.   A couple days in Carson City and I was more than ready to head back to sea level.   Also, if you’re thinking about a Europe trip don’t forget that there are cruise liners that regularly make the round trip; I think it’s about 5 days from NY to London, and it could be quite enjoyable.  We get too used to flying, and forget there are other ways of getting around.

    • christie

      May 13, 2022 at 3:03 am

      That is true! Though I don’t know if I would risk taking a trans-oceanic (or any) cruise while COVID is still a big issue. Hopefully, vaccination numbers continue to rise and future variants prove to be weaker/less infectious than they have been… Always hoping. But Cruise ships are basically floating Petri dishes in my opinion. I’ll pass.

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