Still trying to get used to my 02 thankful to have it but feeling so restricted I was given 4 small bottles for use when out and about I also need to use 1 to go up and down the stairs with. I am almost finished my 3rd bottle so 1 left for a trip out if I need. I was wondering how much others use as I will have to order on Monday more bottles is there a limit to how much they supply in any 1 month. I would like to potter around the garden and get into my green house at some stage. I was told not to overdo usage so I am using for about 4 hours most days and that's just the boring stuff housework meal preparing so keep having to remember how long I have had it on for I was told to set it on number 4. Think when it warms up again I am going to want to do some light work in the garden itching to get out there that will be my next challenge. Have been looking at the mobile concentrators they look a lot more friendly to use but of course not on the NHS early days yet but think that is the route to go maybe there are rent to buy offers ? Feeling frustrated.
Any advice would be welcome
Pauline x
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I'm new here so I can't advise but I just wanted to say I'm in awe. Your determination is and positivity is inspiring .
Thankyou for the compliment other than always out of breath haha I suppose I am lucky not to have other complications severe emphysema is enough, but when at rest as cheerful as they come. I think we have to not let COPD get the better of us manage IT rather than the other way round. Welcome to the forum lots of good advice from friendly people here so always ask away and someone will come up with an answer for you. Look forward to hearing how you are doing.
I use Ambulitory oxygen on 4lpm, I have four large size cylinders with a conserver, a conserver gives a pulse dose of oxygen each breath which means the cylinder last twice as long. Depending on level and duration of excertion I sometimes drop to 2lpm.
Walking to kitchen to make a brew I use 2lpm simply because I can rest waiting for kettle.
Around the home it's about knowing your limitations as regards desaturation, after a period of use you will find what works best for you.
Don't forget they don't deliver on bank holidays and weekends unless emergency.
Yes think I need to get used to it all, I mostly use the stationary concentrator in the house one upstairs and one down strange as it is trailing a 5 metre hose around but at least I am more comfortable so far as breathing goes. Trial and error no doubt as you say will find what suits soon. Thanks P
There shouldn't be a limit. I have the smaller cylinders as they are easier for me to carry and I am supplied with 12, replaced whenever I let them know I am running low. I usually reorder when I break into the 10th.
Thanks Mrs mummy I shall ask if I can have more bottles when the chappy comes, mine last about one and a half hours weigh about 3kg so wouldn't want to carry longer than up the stairs usually fit them on my stroller for shopping they just do the 1 hour trip round the supermarket. Will order tomorrow thank you.
I am on ambulatory 02 at 2ltrs per min constant. I can have 6 tanks a week and each tank lasts about three hours. I also have a Respironics SimplyGo which runs on a battery pack and electricity but the battery pack only lasts me 3/4 hour so I mainly use this indoors or visiting and the tanks when I go out. Both tanks and machine are supplied by my local NHS.
Have you spoken to your respiratory nurse about upping your tanks and explained what you need then for as they are very keen to get us exercising
Thanks for your input All new to me, I think when the nurse comes will ask her more questions think it's maybe because I am running on 4lpm that my bottles don't last long so need more bottles keen to get moving. I didn't have much idea was just told oxygen would be provided for me at home and she would visit end of May to see how I was getting on. Of course I have contact numbers to phone if worried about anything but find the forum here quick with the answers and people know first hand what they are talking about. Good to hear how others are working with it.
Hi Pauline I keep 8 of the smaller cylinders and have 7 empties replaced every week so far I can manage but think I may need more in the Summer. I am on ambulatory at 4lts and also have a concentrator for home use.
Thanks polly looks like I deffinately need more And it looks like we are all different they obviously gave me just the four to see how I go good to know there doesn't seem to be a limit. Thank you 😊
Hi Pauline I was initially given 4 bottles home, but I was using them in 7 days so my Respiratory nurse upgraded my machine at home so I could fill my own bottles. The only draw back is the portable bottles are not constant flow but I'm using less with it only been on intake of breath and I can fill them at home, I love the freedom this machine has given me.
Are you reffering to liquid oxygen this would be new to me, also do not know enough about constant flow and pulse. I think when the nurse follows up with a home visit I must make some notes and find out what's what that being about three weeks away so shall muddle on for now. Thanks for your feedback every bit helps to educate me I'll get there in the end.😊
Nope its not Liquid oxygen its ambulatory oxygen this machine makes its own. Constant flow is just as it reads constant where as Pulse is like a squirt of oxygen when you breath in through your nose so it conserves your tanks making them last a lot longer no oxygen been wasted.
Thank You now I understand abit better, I am on constant flow then. Will have to see what else may be on offer, but deffinately enjoying being out of the chair more for a change . 🙂
Didn't anyone assess how much oxygen you're likely to need? I have 8 Freedom-400 cylinders, twice a week plus the concentrators for overnight... I have a standing order with my supplier, but you should be able to phone to get more cylinders: you need to phone when you open the last but one cylinder, for a next day delivery.
I did buy a concentrator (being fortunate enough to be able to afford it!), but really, you shouldn't have to do that... Ask your prescriber to sort out something more reasonable in terms of your usage!
Thanks for your reply, I am sure we all vary as far as the amounts we use no doubt they just gave me four cylinders for the time being. I have ordered again this morning four replacements they said it would be delivered tomorrow so that's pretty good I just didn't have much idea myself how quickly I would use I think deffinately need to up my prescription as on good days weather wise will be out in the garden pottering so early days. I shall ask about a portable concentrator for out and about but know the Inogen and Phillips are about £3.000 to £4.000 I am sure the NHS don't stretch to that, shall ask what's available. Thanks again
I have LTOT (16+ hours' overnight oxygen), hence the concentrators. I doubt you'll get one of those (thank heavens!) . I did buy a SeQual Equinox - the latest around but the only one which fills my needs! Actually -- Baywater DO have portables. I suppose it depends on your supplier...
Ah yes I suppose suppliers vary also I am with Air Liquide , but all good info I am on ambulatory so my needs are for about 4 hrs a day depending how lively I feel I was told not to overdo my usage so all abit of a test just now. 🙂
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