Oxygen

[Pammorris]

I have a concentrator at home on it for most of the time but have been told I can't have a portable one for going out I now stay in as I can't get around without it what can I do

[Ian1967]

Hi Pam,

Are you based in the UK, if you are speak to your respiratory nurse, they should be able to sort a portable oxygen concentrator, with your local supplier, I got supplied with a Inogen one G2 by AirLiquide, I was originally given oxygen bottles for when I went out, but I found them cumbersome to carry around.

What oxygen level do you use when you are out and about? Most portable concentrators only go up to 5 litres, the Inogen one G2 does go up to 6 litres, but that does seem to be being phased out now.

I hope I have been of some help.

Ian.

[mikeadams51]

I would speak to your oxygen nurse and state your case. However they are obliged to supply you with portable cylinders as they can’t trap you inside. I don’t have a portable concentrator purely on the grounds there is none that can supply the level of oxygen needed. Good luck

[stone-UK]

Hi

You say for most of the time. Are you on LTOT long term oxygen therapy or are on Ambulitory oxygen therapy for exercise and moving around.

If LTOT then you need to speak to your respitory team for a oxygen review. Who will check your oxygen desaturation when moving around, and order suitable equipment for you.

If on Ambulitory oxygen therapy, then again speak to your respitory team to discuss suitable equipment for use at home and using out and about.

They don’t normally allow two pieces of equipment for the same therapy, unless impractical not too.

If you have static concentrator for in home use, then you can have back up cylinder in case of breakdown plus equipment for using out and about.

If you have cylinders for using in home, then you can’t have a secondary equipment for out and about.

[Pammorris in reply to stone-UK]

I'm on long term I have a concentrator I've had my left lung removed and I've been told my lung function is 38%with copd at stage four

[stone-UK in reply to Pammorris]

Hi

Speak to respitory team, once assessed for Ambulitory oxygen you should have no problems, unless your requirements are to high for the available equipment.

[Pammorris in reply to stone-UK]

OK thankyou I will but I find that you get pushed from pillar to post no-one wants to commit to saying I can have it

[barbs47 in reply to stone-UK]

Hi Stone I think you are mistaken. I have cylinders at home and I have a portable oxygen concentrator for use when I go out Barbs

[stone-UK in reply to barbs47]

Hi

I did mention, if impractical to do so.

Cylinders with a conserver last longer and are lighter than the POC supplied inogen one G2 weighs nearly 5kg. Unless you have the later inogen one G3.

Which as not be rolled out nationally.

[annienell]

Hi Pam, this seems very unreasonable, as even with a high oxygen requirement you should be able to get out and about in a wheelchair, with oxygen cylinders. If you're in the UK I suggest you call the BLF helpline tomorrow (03000 030 555 office hours) and talk to them about this. They will be able to suggest what you could be asking your respiratory team in order to get the result you want.

Let us know how you get on with this - with spring coming (I hope!) you want to be able to get out in the fresh air.

Best wishes, Annie

[Pammorris in reply to annienell]

Thankyou I will ring them tomorrow and I will let you know it helps just to talk as it can get pretty lonely x

[Joy123]

I’ve a home concentrator and a small portable one for when out and about. I also have the large backup cylinder, in case of power cut etc, and 4 small cylinders in case I need them. Tell the person that arranges your oxygen what you want to enable you to have a little bit of normality to your life. You’ll have to be firm as they’ll try telling you what they think you need. Stand your ground and hopefully you’ll get what’s needed to get out and about. I was told the portable concentrator would be too heavy for me. Nearly a year on I wouldn’t be without it! Good luck. Also, as others have said it does depend on your requirements as to what equipment can be supplied. Joy x

[Pammorris in reply to Joy123]

Thankyou going to make some phone calls today hope I get some where x

[Spacecat1]

I have the small oxygen bottles which aren't to heavy I only ever need one when out that last well. The small canister bottle is put into a wheelchair bag with no problems

[Pammorris in reply to Spacecat1]

It's not that it's the fact that I have a concentrator at home I'm on 24 hrs but they won't give me portable one to go out which means I can't get out even to do any shopping or walking

[Grayjay in reply to Spacecat1]

Hi Spacecat

I'm being assessed for Ambulatory oxygen on Friday 22 March. Just wondering how long do the portable bottles last? And how heavy are they?

Thanks in advance.

[Spacecat1]

I dont use concentrator when out. I have small canister bottles which I use with the cannula for nose and a bag with a little box I get iut to press for on. Bag goes on back of wheelchair or can be carried in bag on wheels. I only ever take out one cannister out with me. When out having a meal or coffee I tend to take cannula out easier I do have turn off while when out otherwise you get a beeping noise.but once cannula back just press to switch on have a chat with respiratory nurse. I get around with wheelchair and bottle no problems

[Pammorris]

Problem is I've been told I can't have both portable and concentrator but I can't go out if I can't have oxygen it's all wrong if you ask me how can I get on with my life if I can't go out