British Lung Foundation
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Oxygen

Hya, I'm on oxygen 16hrs a day, my question is why is 16 hrs the amount of time to have it on and is it better if is continual?

Also I'm due for my oxygen review in April and I'm worried that they are going to take my portables tanks off me, I feel I need them because when I haven't got my oxygen on and I'm pottering around the house or walkong my oxygen drops to 80 or sometimes under.

I will appreciate any help off you lovely people xx

19 Replies
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They can't take away your portable tanks if you need them (and you obviously do), so just insist on keeping them. Don't know the answer to your other question - just ask about that at your next review. Good luck and all best wishes x

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ThankYou, I will do xx

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Well why would they take your portables back off you ??What makes you feel this way as you certainly are below the required threshold of needing o2 unless there are other factors .. the fact that your 02 drops to 80 is not good ..I'm on o2 24/7 but when I was assessed for ambulatory the nurse only placed the clip on my finger and it read 88 so she made her decision even before I started exerting myself ...so at 1st I was put on 16 hours but never really needed it so never used it but then I went in hospital for 3 weeks with type 'lĺ respiratory failure and on coming out of hospital was back to not needing it ..sadly I'm now needing it 24/7 as my lung disease has progressed although have had it turned down from 2lpmin to 1litre per min xx sorry about the length of my reply ha take care x remember feel free to ask questions

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Hya well I'm asking because last time I had a review tjey mentioned that maybe next review they may stop my portables but surely can't be safe if I'm walking around without it and my level going to 80 or under xx

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Diane,The non scientific answer to your question is that long term oxygen therapy is only considered useful for a minimum of 16/24 hrs per day.some people are prescribed for 24/24 dependant on their conditions and their consultants recommendations,Your ambulatory oxygen should not be removed before you have completed another assessment with the supplementary oxygen team who initially prescribed you oxygen.if you have concerns you will need to discuss this with your medical team.......hope this is of some help.good luck...skis and scruffs x

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Thankyou xx

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When I was first told I needed oxygen, it was for at least 15 hours per day, mostly overnight and portable cylinders during daytime when out walking etc. I had to do oxygen review tests on a regular basis but it was never ever suggested they would be taking the portable cylinders away. Sadly due to the progression of the lung disease, I have to use oxygen 24/7 with a niv machine overnight, which was a nightmare to use at first, but I wouldn't be here now without it. The oxygen technicians probably just want to make sure that you are not using too much oxygen, which is as harmful as not enough.

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Thanks, I'm just abit worries that if taking my portables away it will make me not want to go put the house in case its causing damage thatI cant see, shall see what they say when I go in a few weeks, also I have been having long breaks from my oxygen during the day but making sure I get my full 16hrs, is there too many hours you can go without it? I do check my oxygen level on my phone and without oxygen it's between 84- 89 at rest but high 70s if I'm doing any housework or something.

Hope all this makes sense 😁

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I too was told 15/24 but they reckon 16 is the least ?? Had mine for a few months then they took it all away for a few months now I am back on it again for 15/24. Don't really go out with it as the cylinders are awkward to lift etc.

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Thanks xx

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Most people are told it is for a minimum of 16 hours a day. When I asked my respiratory nurse about this I was told that, years ago, there had been research done which compared no oxygen, 15 hours of oxygen and 24/7 oxygen and the impact this had on life expectancy. They found that those not using oxygen (who needed it) died quicker that those using oxygen but that there was no appreciable difference between those using it for 15 hours and those who used it full time. However, she said this was years ago and the research could not be repeated because it would be unethical to leave some people without, knowing it would reduce their life expectancy. Some now recommend 20 hours as a minimum though.

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Thankyou xx

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Well I was told to use my oxygen 15 hours per day, I have in my house now 2 machines, the one upstairs is for my use overnight but that should be set on 2. The one downstairs is a high flow which I was told to put up to 6 when doing housework, going up down stairs etc. but also set at 2 when resting. I also have 5 portable tanks for use when out shopping etc. I do not think they will take your oxygen away, from what I have been told that only happens if people are not using their oxygen. Of course you should not over use the oxygen, unless told to

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Thank you xx

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I sleep with mine on. During the day when sitting I switch it off and I do the same when travelling in the car. It is on while I am walking round the house and when shopping and walking about outdoors. This was agreed with a hospital specialist nurse. I do check my levels from time to time to make sure they don't go to less than 88. You will soon get used to it.

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Thanks You, I do that when I go in the car, shopping walking around outside but not at home because my machine is upstairs so it would mean going upstairs alot to keep turning on and off xx

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Maybe you'll be given a concentrator. I've just been given one and find it way better than the cylinders. I now have a large concentrator for home use, a small one for use when out and about and some tanks for taking to cinema etc as the concentrator is rather noisy. Must admit it was a a battle to get this combination but by keeping on and on and on I got what I wanted and it's given me a better way of life. I use oxygen whilst mobile, not whilst seated, including driving and not at night. I've never been told I should use it for a certain number of hours. I use 4lpm. If I feel ok I don't use it if sob I use it more. Joy.

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Thanks xx

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Does this help Diane

blf.org.uk/support-for-you/...

PollyP

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