Ambulatory Oxygen Too Heavy

[Difficul]

The only provided options I have seen for ambulatory oxygen involve carrying on a shoulder strap. The weight involved (6-8 lb) is a lot for those with back problems or general frailty.

Is this something ALUK should investigate or even challenge?

[leo60]

I agree. The cylinders are heavy, even the paediatric ones. I gave the rechargeable compressor thing back as it was heavy and the shape of it made it even less portable! I do have a trolley from my oxygen supplier but it is very unwieldy (steps, cars etc ).

However, I am unsure what ALUK can do. . . . . . . xx

[O2Trees]

The heavy adult cylinders are hard for frail people and those with back or other painful conditions. However there are alternatives.

1. You can ask for a paediatric cyclinder - half the weight and many with copd etc have these. I do and I certainly couldnt manage a full weight adult cyclinder on my back.

2. There are trolleys to carry the full size cylinder which you can pull along. My experience with this was that pulling it is obviously from one side and the fact that it was not symetrical for my body caused me pain. But I think these trolleys work for many.

If you can manage it, carrying a paediatric cyclinder rucksack style which spreads the weight evenly over your back may work best. It's the best solution Ive found but may not work for everyone.

They should not just have left you with the heavy cylinder without checking whether it works for you and how you would manage it. It is their job to provide something helps you exercise. Having O2 to support your organs is one thing, but exercise is essential to keep up your quality of life and to help slow down progression. A respiratory physiotherapist should be able to help with this. Pulmonary rehab may be helpful for you which your GP should be able to refer you to. It is your medical team's responsibility to find what works best for you.

[peege]

My neighbour has hers on a little trolley she pushes along in front of her. Akso at my Pulmonary Rehabilitation course participants used the same. It would drive me nuts not to have my hands free and if I ever have to use O2 I'll try O2trees method.

[pegbl]

I have ambulatory oxygen mine is a little pull along on wheels I find it quite easy to handle. When I go to the supermarket I just put it in the front of my shopping trolly … no problem xx

[MoosterMoo]

I was given a large holdall type bag which can be used as a rucksack or shoulder strap, however, I suffer from back pain so it was hard to use for a long while. I asked my respiratory team if they had anything easier and they gave me a trolley with wheels. It's great for exercising as it leaves my hands free but hard work when using stairs.

[Donniebrasco]

Yes i have one with a small rucksac affair, but getting the thing on my back is enough to make me wheeze!When the 02 guy showed up he had a much smaller one, size of a big aerosol, i said it was too small but am now regretting that.

My point being there are smaller options out there.x

[Brikel]

I have a portable trolley, it looks like a small suitcase but very easy to use.

Ask your oxygen provider for one

[PaulineHM]

I so agree with you. I can’t carry those bottles either and I hate with a vengeance those little trolley things too. They limited my mobility in such a BIG way.

I really value the large LOX dewar which is delivered to me, stored in the conservatory and from which I fill the smaller flasks which are much easier to use in a backpack.

One of these flasks lasts me around 4 hours of constant use at 4-5 litres per minute.

I recall being told that only AirLiquide will now permit these LOX dewars to be placed in people’s homes. Apparently other 02 suppliers will not supply them unless they can be stored outside - not sure though how accurate that is. Perhaps someone can let me know ?

Go well,

Pauline

[garshe]

My Respiratory team have ordered an Inogen portable oxygen with rechargeable battery from Baywater. Much lighter and smarter. Xx.Sheila

Imogen oxygen concentrator for outdoors

[_9carole in reply to garshe]

Please could BOC do this for anyone? Yours seems a lot better. Who do I contact about this? Thank you .

[Difficul in reply to _9carole]

Ask your oxygen team to prescribe one.

[garshe in reply to _9carole]

My oxygen nurse from my Respiratory team has contacted my oxygen supplier to supply me with an Inogen. It's because he says it is because I am only tiny and find the portable cylinders too heavy for me. .xx.Sheila

[Ian1967 in reply to _9carole]

Hi _9carole, to get a POC like Shiela’s you will first need to contact your Oxygen Nurse, they will then have to check if your able to use a Pulse Dose POC, Pulse Dose Oxygen is different from your Home Cocentrator and Oxygen Bottles, they use Continuous Flow Oxygen which will just keep giving you oxygen until you turn it off or remove your Oxygen Cannula, whereas Pulse Dose is triggered by your normal breathing, some people can’t trigger Pulse Dose Oxygen, but your Oxygen Nurse will determine that by testing you using the POC whilst walking.

You can also get Continuous Flow POC’s, but they are very heavy and have much lower Flow Rates, I think they only go up to 3 Litres, the battery life is also much shorter than Pulse Dose POC’s.

If you are able to use a Pulse Dose POC your Oxygen Nurse will give your Supplier BOC a Prescription and they will then supply you with a POC for you to keep, you can take the POC on holidays within the UK Only, but not Abroad then you have to source your own Oxygen supplies unfortunately.

I hope I have been some help.

Ian.

[_9carole in reply to Ian1967]

Thank you so much for advice. I was on pulse. But as I am getting worse. Find it hard to breathe deep enough for it to work. Again thank you .

[BreatheasyBe]

Hi

Totally get where you are coming from. I have hello marathon and hi flow stroller. Helios came with a bag that can be worn as a back pack or shoulder strap. The hi flow stroller which weighs so much more than the Helios had shoulder strap only. I questioned why there’s not a back pack style and was told if someone was to fall that could cause terrible injury’s. I made my own back pack for it from buying clips and straps off Amazon.

What I’d really really like is not to have to put the damn thing on and off to alter the flow depending on the incline I’m on while out walking. I hate wasting a drop of it as it severely impacts how long I can go out for.

Surely there’s engineers out there that can update the design.

[_9carole in reply to BreatheasyBe]

I totally agree with you! Plus the main machine in house! To read the meter reading is so small. Perhaps they could help with this as well

[BreatheasyBe in reply to _9carole]

The person delivering the oxygen who also services my machines takes the meter reading for me.

[garshe in reply to BreatheasyBe]

So does mine xx.Sheila

[garshe in reply to BreatheasyBe]

So does mine xx.Sheila

[LissacFrance]

No experience of these, but do remember that anything containing gas under pressure has to meet strict safety standards, i.e. pressure resistance. You could, in theory, have the oxygen in a ballon, albeit a bit bug, which would make it difficult to get through doors. Hopefuly some of the other members might have better ideas for you. Good luck, and take care, Chris.

[Tykelady]

When I first had oxygen three years ago I managed quite well as I need a walker and my son was able to adapt the handle to support the cylinder. I no longer care what I look like as I am so grateful for being prescribed the oxygen. A smaller cylinder would be no use to me as I am on 4ltrs resting and 8 litres mobile which does not last as long as my original prescription of 2 and 4.

[Patk1]

U cld do a search as ths has been discussed before.i recall someone using a shopping bag on wheels.a thought - it may be worth asking aluk to do a survey on portable 02 + difficulties and ask gor suggestions to try make ambulant use easier + even possible

[Patk1]

I have shared Yr post + comments to Admin to try enable a survey,difficulties,suggestions etc with a view to making life easier.watcj this space x

[Difficul]

Dear All

Many thanks for your replies. It seems we have uncovered quite a variation in the level and type of service received. I think this is another area worthy of exploration.

leo60 I am sorry you have found it so difficult to get a suitable way of using ambulatory oxygen.

O2trees I'm glad you have found something that works for you. I can assure you that pulmonary rehab did not fix the problem with my back.

I initially declined the offer of ambulatory oxygen due to the perceived weight of the equipment. Two years on, however, and I at least need something for my clinic visits where the long corridors and unventilated rooms make me too breathless. I don't know yet about social use but that may come. I did use a cylinder at pulmonary rehab, tried out but didn't like a rollator (difficult to manoeuvre & uses both hands) so used an NHS trolley. I took my cylinder and a trolley to my most recent appointment, and wore myself out getting it from the car and through the hospital, probably more breathless than just walking slowly without.

I was initially given cylinders, a carry case and scrounged an NHS trolley. More recently, I was offered a trial of an Inogen One 5 which I accepted. I know they are expensive and appreciated the offer. However, this only has a shoulder strap and is quite difficult to even pick up otherwise. The BOC man told me it is the only version they offer. Only supplied with the larger battery, this Inogen weighs 6lb which is a slight improvement on the 8lb oxygen cylinder. Ideally it could have come with both batteries, so that a lighter set up could be used for shorter outings. According to the internet, there is another Inogen that weighs 3.3 lb, which might be even better for me. BOC do not appear to offer the Inogen trolley or backpack case. I have yet to discover if they can provide a 12v charger for use in the car.

I have been quite clear throughout that my back condition doesn't suit lifting or carrying any sort of load. My oxygen nurse told me to buy my own trolley or rollator if I didn't like the one supplied. I am in process of buying an Inogen trolley but it seems to weigh much the same as the NHS one when I ideally I would have a very lightweight aluminium one.

I hope others will continue to tell their own stories about ambulatory oxygen use, problems and suggestions.

[Difficul in reply to Difficul]

PS Forgot to say that when the cylinders were initially delivered I noticed that BOC listed one a smaller size. I asked about this but was told I would need too many deliveries if I had them!

You can't easily use a shopping trolley with an Inogen as it has three areas that take air in and out which must be left clear.

[EC35557 in reply to Difficul]

Hi Difficul,

Just to let you know that you can get an incar charger for the Inogen One 5. Baywater supplied me with a G3 charger which works perfectly.

Hope this assists

Best Regards

[Difficul in reply to EC35557]

Thank you, EC3557. I found out yesterday that I can get a car charger by asking BOC.

[cazza34]

Hello DifficulI am also on ambulatory oxygen , yes they are heavy to carry. I have the standard backpack and sometimes it's just to much. I now have a walker which has a seat and a basket I use this when I'm out and about, much easier.

[Difficul in reply to cazza34]

Thank you cassa34. I am trying to avoid the walker option, even though having a seat can be appealing. Do you lift it in and out of the car yourself? How heavy is it? How do you get on with tasks like opening doors?

[cazza34 in reply to Difficul]

Hi yes I lift it in and out of the car myself, I've got osteoporosis of the spine so cannot really carry the canister for long. I'm also clumsy 🙈 so would be no good pulling one of their single trolleys...I would definitely trip over it. You just manage it it's got swivel wheels at the front so easy to move to the side to open a door. On another note the pediatric canister are smaller and worth having, they will deliver to you as often as you need them, dont let anyone tell you otherwise. I get standard canisters x 7 delivered monday wed and fri, sometimes I need all 7 sometimes only 4 depends on how I am that week. Your oxygen assessment unit is the one to have conversations with as its them who write ur prescription.

[Tawny10]

I have been challenging my oxygen nurse & BOC for some time on this subject.

Using ambulatory oxygen needs to be made more user friendly. I managed to source a backpack for the Inogen on the internet (not branded but with ventilation). I also have the Helios Marathon for liquid oxygen & was fortunate that the driver had a used back pack on the van from Air Liquide Homecare.

I do believe the o2 companies could be a bit more helpful for those of us trying to stay active for as long as possible… being mobile & having both hands free is so important. I also think Oxygen Nurses should have to spend a day using the equipment (obviously without o2) so they understand properly what we are up against…. Oh & with a peg on their noses 😂

[Difficul in reply to Tawny10]

Thank you. This does seem to confirm that there is a wider spread issue here.

Also how did you manage to get a Helios and an Inogen please?

[Tawny10]

Prescribed by oxygen nurse. I had the inogen first but needed higher flow for pulmonary rehab so she got me the Helios as well. I begged to keep both & its working well as sometimes the Helios is difficult to fill!