Traveling with Pulmonary Fibrosis

[Michael]

If car travel is not a possibility, then consider a charter flight. They are LESS expensive than they once were. Then a couple tanks that someone else lifts and a couple hours and done.
Just a thought. Good luck and let us know what you do.

[Christie Patient]

Hi Lavanya, I am not a doctor, nor am I someone who has experience traveling on oxygen, but from everything I have read, this seems like a risky idea considering her needs. The average oxygenation of an airplane is similar to the oxygen you would find at 8000 feet elevation. If she is using 4-10 lpm at what is basically sea level, her needs will be much more at elevation, and she may become hypoxic. You are supposed to carry 150% of what you would normally need–both batteries, and oxygen I believe–for the time period on which you will be traveling, in case of delays. There’s more information here, but I think asking her doctor is the best way to go about this. See if they can do an altitude simulation test to see how she responds to the deficit in oxygen. It may be wiser for you to fly to Dallas and rent a car to drive her to your home if you can swing it.

[Deleted User]

I was wondering the same thing for my husband. He uses E tanks and about 4 – 5 liters while at rest. We are considering living in Florida, but I don’t know how we would make the trip.

[Nancy Adams]

When I traveled to Florida I was told to have 2 times the time of the flight worth of oxygen.  I used portable oxygen and carried an extra battery and it was approved by the airline.

[Lavanya]

Thank you for all the answers. The Doctor has informed that she cannot fly given her oxygen requirements. Driving from Dallas to San Jose, CA would not be possible since she requires lot more oxygen cylinders. I guess we have to let her stay in Dallas and provide long term care for now. Thank you again for your help.

[Christie Patient]

Dang, that’s too bad. Thank you for sharing her doctor’s advice though, that will be helpful for others. I have a colleague over at PH news who moved by car with oxygen from Texas to LA, but I am not sure what her oxygen needs were at that time. I can ask her if you’d like to connect with someone who has made a similar drive while considering these limitations.

[Bruce F.]

I have been looking into whether I can rent an RV that could produce enough power to run my home concentrator while driving. The idea would be to drive relying on the concentrator rather than on tanks, and to sleep at hotels along the way where you could move the concentrator inside for the evening.

I do not know if this idea is viable, but it might open the possibility of getting your mom to California.

I just started working on this today, and would appreciate any advice people can provide.

Many thanks, and best of luck —

[Charlene Marshall]

Hi Bruce,

I’d be really interested in hearing how you make out with this planning! In sounds like a doable option in theory; I suppose it could depend on the RV hook up and that it can supply the 02 concentrator enough but I would imagine it would. This certainly would be an option as the concentrator would always be powered and then the tanks at night. You could also plug in the POC at night likely at a hotel. I flew to California using my Respironics SimplyGO in 2022 as my 02 needs were lower then and I could manage. From there, we drove around the coast with it plugged into my friends car so I would imagine this plan would work. Let us know as you continue to develop it!

Char.

[diabenleo]

Charlene I’ve been struggling with this same travel problem for 9 months or so since my O2 needs jumped to 8l/min at rest. At one point I was thinking about the RV rental and I believe that’s doable but I recently learned that Toyota has equipped a package in its 2024 Sienna minivan that includes a 1500 watt inverter that will run a concentrator plugged in as you go. My 10l concentrator only needs 650 watts. I wonder if someone could rent one for a long distance trip. It’s thought, let me know what you think.

[Bruce F.]

Interesting to know that the Toyota Sienna’s inverter has that much capacity . . . I will investigate! At the moment I may be able to squeak by with a high-output POC that can be powered with the 100 watt outlets that come in most vehicles. The Sienna options is good to look into, though. Good luck and many thanks.

[Bruce F.]

Thank you, Charlene! Still researching . . .

[James]

I am a frequent flyer.  I average for to eight flights a week.  I have flown all but three weeks since January 2, 2022. I have flown virtually every week since the pandemic started and many many weeks before… years actually.

I was diagnosed IPF mid 2017 and given the usual 5 to 7 year prognosis. I was placed on oxygen and I managed to get hold of a portable oxygen concentrator (POC). I also have all sixes of tanks which I use in emergencies.

Back to the point.  No airline allows tanks.  None that I am aware of or fly, but all allow the POC. Rules are mostly the same:  you need 150% of your flight time in battery reserve, an 8 hour flight will need a 12 hour battery  or the equivalent in time.  I carry a 10 hour on the unit and a 10 hour reserve battery.

The POC I use is a pulsed unit, on demand when you breath.  It learns your breathing patterns. As it is a demand sensor you cannot piggy back or run the units tandem. maybe some other constant unit like the gigantic one in my office which I have routed through my house might do that.

My doctor has me using 2 ltrs at all time of the flight and I can change the demand based on how I feel, but changing the demand effects battery life.  You cannot use the power plugs on the aircraft as a supply… just not allowed.

These things are not cheap, some costing 4 thousand dollars.  Batteries cost too.

All in all,  they are not the end of all things good, but they do help.

 

James

[Gloria M Wheeler]

I do use power plugs on AK airlines without problems or questions. I have not flown other airlines.

[Randy]

Lavanya. I would look into getting a Inogen 5. That is what I have It does go up to 6. You can run it 24/7. In the car, take the battery off and plug it in. About connecting 2 together, I wouldn’t know about. I am 6 on the Inogen and my home concentrator. I cannot do much anymore and I am out of oxygen and also with my heart problem, my heart goes nuts. We are going to try and do a trip to Washington this fall. Depend on how my force test goes. I will also take a tank with me because I can get it up to 10 when the Inogen isn’t doing it for any mountains. Side note, I cannot fly either. I was told that after I was discharged from the hospital. Good luck  however you go.

[Sally]

Just an FYI….NO Inogen POC’s go up to 6LPM..  They are settings and not LPM.  I have and Eclipse and it goes to 9 LPM on pulse and 3 LPM on continuous.  It is heavy but works for me now so that I can travel.  I am going to attempt Maui in June.  I have two extra batteries and it can plug in if needed, so hopefully OK.  I am on 4-5 pulse for walking but not that much sitting.  I had an exacerbation in September, and before that I used the Inogen 3 with no problem on the plane.  I wasn’t on any oxygen other than that.  Here is the comparison chart for POCs.  Unfortunately, not all companies tell the truth on the phone !!

https://www.pulmonarypaper.org/portable-oxygen-concentrators-comparison-chart-2021/

 

[M Harris]

An inogen 6 (I own one) does NOT go up to 6 lpm. And leading you to believe that it does is horribly unethical. I believe the max lpm on any Inogen is 2.6 lpm. . Please reD the Oxygen Mankfesto part 2. Y Dr. Noah Greenspan to get an idea of the limitations of POCs.

[Bill Kelly]

Yes you are nuts – if your mother really needs 10 LPM. Don’t believe ANYONE who tells you that Inogen will supply 6LPM. You cannot take cylinders on a plane. Google to find companies that rent for flying eg Oxygen to Go. They can give you definitive info on flying. You may get good tips on this board but don’t put your faith in them.

[Anne]

I have radiation induced pulmonary fibrosis. I have been flying for the last 5 years. I need 2LPM for riding in my scooter or electric wheel chair or sleeping. I use 8LPM when walking, showering, or pottying. When I’m out, I use a 5 when walking, pottying etc. I huff and puff and I go down to between 78 to 84 pulse ox for a minute or 3 or 4. Then my pulse ox goes back to normal 94. I take 1 1/2 the required batteries with me when flying. I have even gone to Europe with my O2 condensor. I have used the Respironics condenser that goes to 5LPN. I have read about the Imogen going up to 6LPN

I take arthritic exercises in a therapeutic 93 degree pool. I use a handicapped chair to lower me into the pool and out. I park my scooter right by the chair to get to it using only two or three steps. I float my O2 condenser and the 7 foot canula to the side of the pool using 3 kick boards turned into a catamaran (PT taught me this). The condenser rests on the side of the pool and I can kick and turn with the rest of the crowd and have no problem with my O2. Once I’m seated in the shower, I huff and puff with only using a 5LPN, but get over it. It only takes about 10 minutes and well worth being uncomfortable for 10 to 15 minutes for showering and dressing.

I hope your mom doesn’t make her disease keep her at home. Take her to the movies, to museums, out to lunch and shopping. Using a scooter or electric wheelchair (I use both) so she can get around. Handicapped busses come and get you. I have a minivan with a lift for my scooter. I use the handicapped bus sometimes with my wheelchair to go play bridge.

You can purchase a condsenser or medicare will buy one for her if they believe it will work for your mom. Her pulmonologist has to request one for her. She should be able to rent a portable one–again with doctor’s request.

Anne

[Gloria M Wheeler]

I believe airline requirement is 2x flight length of battery life. Not 2 times amount of oxygen. I have used two INOGEN’s to increase O2 supply utilizing two nasal cannulas. Both would have to have twice the length of flight worth of batteries.   Car travel would be more doable and think you could set up respite care in a city half way in between travel cities to give you both a break. You would need two machines with a power source—or O2 tanks which if purchased thru nation wide provider could be exchanged as needed enroute. Planning would be nightmarish but doable.   Personally, I’d arrange tank exchanges as needed ahead of time, a respite stop mid journey.  I’d use inogen and tank (extends tank life)  with two nasal cannula’s utilizing cars power source while traveling.  My ideal mode of operating would be two INOGEN’s both with their own cannulae with a tank for back up.  I would pick a route with the least elevation. Again, Respite set up midway.  I find using two cannulae to be quite comfortable.  I’d then write up plan and submit to her primary physician.    I think it is doable; and, while labor intensive, a wonderful opportunity to spend one on one time with her.

[William Giese]

If possible driving would be best. Rent or have a vehicle with a power inverter installed (1000 watts min) and take home oxygen concentrator to ensure the required flow.
Good luck and God bless.

[Lavanya]

Thank you all. For now, we have dropped the idea of flying or driving her out of Dallas, TX. Finding ways to make her comfortable where she is now. Thanks again for taking time to answer.

[Adelaide Campbell]

I can’t add anything to this thread, except:

I’ve just returned from the UK, I live in Ontario, canada.

I took the OxyGoFit POC, with a back up battery.
Neither there nor back did I need it, though I used it a bit for boarding, and disembarking.

No change in my O2 levels at any time.

But in on 2l for exertion, not needed at rest.
Before travelling (this is all new to me.  I’m 78 and up till now physically and mentally very active, and I have ILD PF) I learned lots and lots from the different forums, but much of it was incorrect.

Now I’ve done it.  Maybe I’ll do it again, depending ……… each day is different.

however, I think you’ve made the right choice for your mother.  I’m not very far along the ILD path, yet.

Addie

 

[Doug]

I took my last and final airplane flight last December; it was just too difficult and frustrating a process to continue anymore.  It was a 5 hour flight form Honolulu to our home area in Sacramento.  We have a couple of time shares and during our retirement years have flown numerous times going to timeshares and cruise ports.  Once I needed O2 my provider issued me a Simply Go Mini (SGM), which I mainly used in a backpack which I loved, and a large continuous flow home use machine. When we flew I used my SGM and a rented Simply Go (SG) which I needed at night; the mini does not have continuous flow but the SG does.  As is common this damnable IPF progressed to the point that the limit of 5lpm pulse of the SGM was no longer sufficient for most of my activities. My Medicare assigned O2 provider would have put me on O2 tanks if I informed them the SGM was no longer sufficient.  After a lot of contemplation and research I purchased a Caire Eclipse 5 that goes up to a 9lpm pulse and 3lmp continuous.  It hurt financially but was worth it, though I have had some issues with the 5.  As a result I would take both machines when I would fly.  To fly any distance at all required I by two extra SGM extended life batteries and one Eclipse 5 extra battery. Costs were close to $1,000. I would use the SGM while on the plane as 5lpm would keep my O2 in the 90s as I wasn’t active.  I would place the Eclipse 5 in the overhead bin.  The main problem was getting to the airport, checking in a waiting at the gate before getting on the plane. It was worse was we arrived where we were going as the distance from the gate to baggage was considerable.  Getting to the rental car was much fun either.  This last flight I was wheel chaired from check in to the gate and once there, wheel chaired to baggage. This last flight was direct but still quite difficult though I’m glad we did it.  (When we had flights where there was a change of planes it was quite difficult.)  Not too long after the December flight I switched to tanks. Some other time I’ll share my experience and recommendations about taking long car trips.

[julian]

For batteries and POC’s check Amazon. I bought Inogen 16 cell Li-ion batteries from Amazon for $300 each. Inogen sells them for $600 a pop! I don’t know if anyone makes a 10 l/min POC. My InogenOne G5 only goes to 6 l/min. Paralleling pulsed units would not work. I wouldn’t attempt to parallel anything without the approval of the manufacturer. I doubt if the doctors would even attempt to answer this question. The idea of renting an RV and a concentrator might be your best bet. If so you could stay at commercial camp grounds with hook-ups and electricity vs dragging a bulky concentrator into hotels.

I am also on a CPAP at night and they will not work with the pulsed concentrators, so my travel days are over unless I can drag the boat-anchor continuous pressure generator with me or rent one where I sleep!