Consultant Recommends Ambulatory Oxygen!!!

The whole idea of using oxygen for my advanced respiratory condition depresses me somewhat. My consultant's opinion is for ambulatory oxygen and use how and when I need it.

The big question is how long some of you have been using ambulatory oxygen, is it beneficial, and what type of lightweight, portable concentrator you would recommend.

I realise I need this but I am totally disappointed for various reasons....embarrassment, inconvenience, deterioration of health etc.........Robbo

11 Replies

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  • Hi

    Firstly you need to know the amount of oxygen you require in terms of litres per minute, then what delivery system you can use continuous or pulse.

    Then subject to home environment, your choices are.

    Cylinder with bag and trolley weight approx 3.3 kg plus conserver if suitable.

    Liquid oxygen comes with Dewar main container with refillable flask, ( self fill) weight of flask 2.2. / 3.4 depending on make.

    Portable oxygen concentrater Imogen G2 weight approx 4 kg comes with bag and trolley.

    Without knowing the LPM it's difficult to advise.

    I am 4Lpm I have four cylinders with conserver.

    As I live in a first floor flat, I decided to purchase my own portable concentrater Imogen G3 only weighed 2.2 kg, as yet not available on NHS,

    Although there are being trialled, may be in the future

    No need to be embarrassed treat it just like any other medication, I have no problems in fact people can be quiet helpful.

    .

  • Hi rarchie, Im sorry its come to your needing the oxygen but please don't be depressed. Basically if you need it, you need it - you will get used to it and you should be able to do more and keep fitter.

    In my experience as ambulatory oxygen user, you usually get given cylinders rather than a concentrator. If you are fairly active you can ask to be given paediatric cylinders which weigh less and you can carry them on your back. I only use ambulatory O2 after having had an infection while my alveoli get back to normal but that's been several months each time so I can tell you that Ive found the paediatric ones really useful and have been able to walk, and even dance and bike with the cylinder in a back pack.

    You often have to make a case for having these ones as they are more expensive than the standard adult ones. However if you can be more active with them you will keep yourself fitter which in the end is likely to cost the NHS less. Good luck.

  • Agree with Stone that if you have cylinders, then you need to ask for a conserver as this makes the cylinder last much longer.

  • If your needs allow you to use a conserver. I can completely understand your feeling depressed about this. It is very common but most folk are able to gradually trade that off against the extra freedom that breathing more freely brings them.

    Kind regards, Rib

  • Yes, correct about the conserver Rib.

  • verywell.com/the-benefits-o...

    I've been on ambulatory oxygen for nearly four years and I have improved my stamina a little, don't get so fatigued as I did before. Haven't had a cold or infection for over two years now. It takes a little getting used to, I have the light weight bottles and a concentrator at 3ltres per min.

    Hope you find it is an improvement in your day to day, wishing you all the best, huff x

  • I couldn't leave the house without my ambulatory oxygen so it is very much a life enhancing experience. I don't give a damn what I look like, leave those with small minds to worry about that. Disability and the ageing process render vanity and dignity redundant.

  • I leave it to others to give you the technical stuff. I was gobsmacked when I was told that I needed ambulatory oxygen, some ten years ago, and went through the whole gamut of emotions. Still, in the end, it had to be.

    My goodness - it gave me a whole new lease of life and either people didn't notice the tubes up my nose, or they were incredibly helpful. Without it, I'd be dead.

    That was a long time ago: I'm now on L-TOT (long term oxygen therapy) and went through it all again... but the bottom line is, I'm still alive, doing a lot of the things I have always done (although spiral staircases in castles are rather more challenging now!) albeit more slowly and with my friend the backpack in tow.

    I bought a SeQual Equinox because it is the only one which gives 3 litres free-flow, which I need for overnight use; it also gives me 4 litres ambulatory on pulse and it was very expensive. Your supplier should tell you what is available.

    One tip, though: if you let someone else carry your backpack, do make sure that they won't run off, as my husband did when he ran after our puppy who was rolling in a cow pat. There I was, trying to run after him, being dragged by my nose and ears... one was _not_ amused!!

    Catnip

  • Thanks Catnip.....just the sort of reply I need.....positive and reassuring. Interesting you used ambulatory for ten years though. And thanks for equipment information, I am now building a positive picture of a future with this type of treatment...........Robbo

  • Thanks to you all taking the time to respond......I am becoming more reassured of the benefits with this type of treatment......I only wish my clinicians had been so helpful and understanding.....Robbo

  • I had my 6 monthly lung function tests and saw my consultant back in September ,,,he said that due to the drop in my fev levels, he wanted to try me on supplymetary oxygen ,,,,as they had dropped quite a lot since my last test ,I was shocked as since 2008 my aim has been that I will never be in that position,,,, I explained that I had been unable to exersise due to bowel and bladder prolapse and that that health problem had now been resolved ,I asked him to give me 6 months to get my fitness levels up and then my fev numbers will be up ,, he said I had until December,so back to the gym I went and told the trainer my dilemma (They know me well at the gym as I've been going twice a week since 2008 until the last health problem ) he said ok I'll set you a program that you come here 4/5 times a week but just for 30/40 minutes each day ,so your recovery after exersise is quicker, and do sit down exercise at home other days ,,, this I did , And on the 22nd December I saw consultant again ,, with fingers crossed,, ,,,,and yes he was shocked to see test results showed my fev had gone up from 63 to 75 so no need for oxygen ,,,,,, (for now he said ) so now I am keeping up with the program to keep my numbers up ,

    If you haven't been referred to PULMARY rehab can I suggest you ask your GOP to refer you ,you won't regret it ,best wishes

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