Flying high with Oxygen

….I wish I could just book a flight and jump straight on that plane….

Those of us who travel with any kind of an illness have to pay time and thought to the whole packing process.

How many meds do we use, how many might we need on our worst days, how many extras should we pack, and have we got the all important documentation to allow us to break the 100ml rule?

Well I do all of the above in a rather extreme version-I have a whole carry on medication suitcase that the airline waive as I am a Special Needs passenger, plus I have the hassle of arranging Holiday Oxygen and Airline Oxygen just in order to be able to fly.

All my drugs require documentation form the Hospital which needs to be rewritten every 6 months!

I have known for 3 years that I desaturate in the airline cabin far worse than I do on the ground. Usually I am functioning on about 92% SATS and this drops into the 80s if I am more mobile than stationary, so, gardening, vacuuming, or indeed,swimming. I can cope, sort of, but I am prescribed supplementary O2 at home or when out and about.

I used to wear my O2 everyday at school until they got me my little scootie and I now whizz around far less breathless and without my O2 on. So, a little blue here and there, a bit puffier than I should be lungwise and I can generally sit down rest a bit and recover, albeit to about 95% with time.

This is not the case on a plane. I require 3L of constant Oxygen, unlike the pulse dose set up that I use when on terra firma. I have to arrange for all of this through my Doctors, through the airline medical desk, and in the case of Holiday Oxygen, through my oxygen provider here and in California. This all adds so much stress to booking and flying on any plane. We only ever fly United as I have found that they look after my needs the best-some airlines only provide pulse dose O2 some only provide a certain flow rate etc, plus I have been a life long UA frequent flier and we use their miles a lot

The process goes something like this:

Ring United-book flights but notify them of my needs-ie, requires airline oxygen and a wheelchair.

((NB: Regardless of what seats you book you will always be put in 8A+B in BC and 20 A+B in EP!))

Download Oxygen request form. (And soon I will also need to download the Request to use a POC form)

About 6 weeks before we fly, fill in the form with my GPs requests and leave with GP for signing and stamping. (This is usually where she loses it, as in the case of April 2010!)

About a week before we fly, collect form from GP and pay for her signature!

Give form to J to fax from his office to the UA medical desk. (In my previous experiences, most Doctor’s receptionists do not a) know how to fax overseas and b) actually do not know how to fax!)

Then WAIT! If I haven’t heard form the UA Medical desk within a day or so I’ll ring them in which case they have to plough through the faxes to find mine to tell me it is all approved and set up. Also, I will generally receive several phone calls reminding me that the airline O2 has to paid for per leg-great that’s $125 per plane and we get 3 planes a trip. This always feels like discrimination against disabled people or persons requiring O2 just to live a normal life. Aargh!

So All Set? Nope!

Upon check-in, remember to check with the desk clerk that the O2 has been ordered and is all in place. It takes about 90 mins for them to set it up. So no late checking in here!

Then: Arrange pre-boarding, ie I can board with the crew so J can set me up with the O2 and stow our baggage seeing as the airline O2 is two enormous cylinders which take up the 2 overhead bins above our seats. He then can talk to the Purser about me and arrange for my being able to neb during take off and during the flight. Take off  is when the planes suck in the very worst air.

I guess then once I am plugged in with my own cannula (as the UA ones are really stiff and hurt my nose on an eleven hour flight) then we are all set!

Incidentally: Seeing as I am always wearing O2 when we leave  home, as I cannot walk those airport distances etc without it, I have  to arrange to leave my tank at Red Carpet Club. This has become our routine now and something that AirProducts do for me.

I have not yet arranged for AirProducts to bring me a tank to the airport at LAX though as although I feel absolutely dreadful when I get off the plane, I can usually  hold out until we get to Palm Springs, where my big brother has collected them and brought them to the hotel for us. This routine works for me in my situation. However it will be changing slightly possibly next flight in August as I am now going to increase to 4L on the plane and may also be getting a POC, in which case a lot of hassle will be saved by not requiring the services of AirProducts at either end. Apparently California are stopping supplying gaseous oxygen and everybody is being switched to LOX. I have never used liquid oxygen and in the heat etc I don’t know how I will be with it so I’d rather skip that process and get a POC instead!

It’s all such a stress that does feel more than a tad unfair when we hit some spanner in the works somewhere along the line!

….See, I said I could never just ‘jump’ on a plane. What a rigmarole!….


5 Responses to Flying high with Oxygen

  1. Elisheva says:

    Is that the same O2 that comes down in those masks when the cabin pressure drops? (See? I pay attention to the videos.) I see you’re flying first class. Is this thing only available in first class? Does it cost more?

    I was looking thru your “About Me” and noticed your asthma only got that severe fairly recently – in 2005. I’d be interested in seeing a post about that. How old were you then? How long did you have asthma before that? How severe was it? Did it get worse all at once or gradually? Does anyone know why?


    • It was BC not 1st. The tanks are put in the overhead bins above certain seats. No it isn’t the same as the emergency oxygen bags that drop down. This is medical oxygen at 100%. No it doesn’t cost more but the seats in the different cabins cost more! 😉

      I’ve always had atopy- eczema. asthma, allergies. I’ve had periods of my life when my asthma has been very bad. Late teens, mid 20s and now since 2005. I used to think it was cyclic, but this time I had a pneumonia that caused lung scarring as it went untreated for a period of time and then a virus that affected my lungs. Apart form that, it is one of the modern medical mysteries. Some people therefore refer to me as Late Onset Adult, which is a trifle silly as I had asthma as a child.

      I’ll bear that in mind that you’d like a post on said topic at some time too!

      Hugs xx

  2. mommato2beauties says:

    makes my little question about whether or not the neb and the O2 monitor will count against my carry on total seem silly.

    I am glad, though, that even if it takes a ton of effort, you are able to fly places. Are you an American living in England, or is your family English, living in The States?

    (what is POC? personal oxygen canisters?)

  3. You should still tell the airline/security that you are carrying important medical equipment. They will swab them for explosives and will know they’re bona fide!

    POC…Portable Oxygen Concentrator.
    I’m getting the Airsep Freestyle.
    We’re English living in England and the US – I lived in California when I was a child! We travel to the States several times a year. My lungs are happiest in the SoCal desert heat!

  4. MC says:

    Wow, I didn’t know that you could travel with in planes with this much medical equipment. I’ve been learning the last few months how to ‘break'(make sure you have prescription labels on them :D) the rule on how much liquid is allowed in cary on luggage when I fly to and from school with my asthma meds… I don’t have a problem with nebules and other bottles of liquids with a rx on them, but I’ve been wondering what airport security thinks in regards to inhalers not in the ziplock bag that don’t have a rx on them (like Kerri’s).

    How do you do with jetlag when traveling between England and California?

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