Ambulatory oxygen

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While attending my final session of pulmonary rehab yesterday, the respiratory nurse took me aside to say that she had made an appointment for Friday to discuss and look into the possibility of my going onto oxygen.

As my sats are generally OK at rest, but dip quickly and seriously with even mild exertion, she is recommending 'ambulatory' oxygen use. I must say I am really excited by this as I have been so worried at times when my fingertip oxymeter has shown O2 at 80 just for putting my coat on or when I make a cup of coffee. Even more scary is walking uphill to my front door with sats dipping to 72 and my pulse at 130 plus!

Anyhow, I am hoping that \" ambulatory\" oxygen will mean the liquid kind where you can fill small flasks from the larger reservoir, as then I will be able to get out and about so much more! I keep telling myself not to count my chickens before they hatch but I cant help imagining myself cleaning the windows, going for cliff path walks and so on!

I will keep you all posted on what happens as it happens so that future visitors in similar circumstances can see what to expect.

Please could those of you with experience of oxygen let me know what kind you have and your opinions of it?

Yours impatiently and excitedly! Vanessa smile

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  • Posted

    Vanessa, that sounds really exciting and I can imagine how you feel when you see yourself doing all those things.

    I have had the large tanks for 6 years and I thought if I had the ambulatory oxygen I would be able to walk and do this and that. Got myself all excited. When it was delivered it was a lot smaller but way to heavy for me to carry. They did say they did a smaller one for children and frail people but it is such a performance this end trying to get them to change it.

    ,

    Now if you have a concentrator I believe the canisters are much smaller. Keeping my fingers crossed that you get your oxygen soon. It must be scary when your sats drop so low. Actually mine do the same, I'm so breathless by the time I have got dressed. It will open up a new life for you.

    Tessa

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  • Posted

    Hi Vanessalee, I use the ambulatory stuff for work. I have cylinders of oxygen (not in liquid form) and like Tessa I initially found them heavy to carry when full. However, the smaller tanks for frail people and children are difficult to get and don't last very long when in use. I recommend the bigger tank (which is not too big) and you can get a trolley type thing (like a small wheeled suitcase) to help get about with it. I tend to use ambulatory oxygen mainly when in my car, so leave a tank in there. For getting around otherwise I use other people's muscles. For example, if I am meeting someone for lunch, they will always carry the tank for me. If I am shopping, a man will usually be kind enough to put it into a shopping trolley for me, etc. Even my hairdresser knows to come and meet me at the car and take my tank in for me!! Good luck.

    Jacee.

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  • Posted

    Jaycee,

    Can you get a trolly thing from your oxygen provider or do you just buy a suitable something to move it around in.

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  • Posted

    Hi Tessa, they do supply them. However, they also charge quite highly. My (wonderful) nurse offered to contact the oxygen company and try to get me a freebie (she has done this for others, saying they will not otherwise get out) but I did not bother with it. You can get a cheap weekend sized wheeled case and this would do fine and also hold your bits and pieces whilst out and about (purse, phone, keys). Handy really.

    Jacee

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  • Posted

    Hi folks. Feeling pretty down and weepy this weekend. Had got so excited about getting some oxygen sorted out so was devastated when the hospital rang to postpone my appointment for another month. The machine that analyzes the blood gases has broken down and apparently its the only one in the whole of Cornwall so there's nothing I can do but wait.

    To add salt to the wound I have found out I won't be able to have the liquid oxygen as the streets in Polperro are too narrow for most cars let alone tankers delivering liquid oxygen refills. So it looks like I will have to have the other type and remain practically housebound!

    The problem is I don't have a car so will have to carry/wheel it everywhere. There's no way I will be getting up to the top of my lane even like that as I live partway up the cliff side , which already has my O2 sat's in the low 70's each time I leave the house. Not to mention the three quarter mile walk to the bus stop. Even if I had a car I would have to park it at the outskirts of the village.

    Anyhow, having mulled over my circumstances these past few weeks, I have decided that I must move if I am to have any decent quality of life. I know this is a beautiful fishing village, but for the sick or infirm it does nothing but raise obstacles. I have decided to apply for one of those little council bungalows that they have for the elderly, disabled or chronically ill.

    I will wait for one that is in one of the towns so I will have better access to hospitals, breath easy groups, gym's, swimming baths and so on. I'm sick of being tired and lonely.

    I am also applying to see if I can get DLA mobility allowance as that would help our impoverished circumstances. I am trying to reorganize my life not just for now, but so that I can stay as independent as possible in the future too. Two years from now my daughter will be away at university and I will be home alone. It will probably take most of the year to sort all these things out but I really look forward to having a fuller life at the end of it. Vanessa

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  • Posted

    Vanessalee, have a good cry..........then kick yourself up the butt! You have had it tough recently but don't despair. The tanks are not that heavy and I can carry one if I have to (my oxygen level was down to about 79/80 before I used it and I am NOT very strong), its the getting it onto your shoulders that is difficult rather then carrying the thing. Also, the little wheeled trolley/case would eliminate this difficulty and would not prevent you getting out. However, given your circumstances, looking at a move to somewhere which gives you more access to services and resources makes sense. Have you enquired about a free travel pass? With your mobility difficulties you would get a free bus pass here but I am not sure this is national. Also look at applying for a Blue Badge, then if others transport you they can park close to where you need to be. Then think of the lovely council tax band reduction for oxygen storage (clever you)!!! And have you applied for DLA? The mobility component of this can fund the purchase of a car and some of the running costs (eg insurance and servicing). Sorry if I am telling you things you lready know. DO keep smiling Vanessa, I need you.

    Jacee

    :wink:

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  • Posted

    Oh Vanessa I am so sorry you feel down. You can use our shoulders to have a good cry on. It is awful when you are excited and geared up for something and then it is postponed or worse cancelled.

    Where you live throws up a lot of problems. But as Jaycee said, have the medium size tanks and buy a shopper on wheels. You say you have a narrow street, but my oxygen is delivered in a small van or sometimes a car.

    It is a good idea to apply for DLA and if you can, get the Citizens Advice Bureau to help you fill the forms in. If you can get that you can lease a car from Motability and get the blue badge for parking.

    It will take a lot of your time, arranging moving, applying for DLA but it will be worth it.

    I hope you feel better soon.

    I need both of you

    Tessa

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  • Posted

    Hi Vanessa

    Sorry to hear about your oxygen problems.

    Just wanted to let you know I've had liquid oxygen at home for the last year, I did have some teething problems. I used to get small portable cylinders delivered 3 times a week, sometimes i'd wait in all day waiting for the delivery. They change the liquid oxygen tank over every two weeks now and i just refill the portable whenever i'm going out.

    Hope this info is helpfull for you.

    Take care and good luck..

    Gerry x x

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  • Posted

    Hi Gerryscot,

    Thank you for your kind words . Funnily enough I'm off to the hospital this morning for my Arterial Blood Gas test etc. I haven't slept a wink all night for thinking about it (excitement not worry!). I'm still hoping I'll get liquid ox too, though the way I feel lately anything will do just so long as they don't say no.

    Do drop by again and let us know how you are -- I notice you posted at 2.30 in the morning , so I hope you got a decent amount of sleep eventually!

    Best wishes Vanessa x

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  • Posted

    Hello,

    I saw my nurse yesterday and asked about the very lightweight oxygen cylinder they have for children and frail adults. I use a concentrator and ambulatory cylinders of oxygen usually but the ambulatory one is far too heavy for me to carry and it is whilst I am ambulatory that I particularly need it. My nurse was reluctant for me to have a concentrator, the normal cylinders and a lightweight one also (which only lasts for about 2 hours anyway) so she is discussing with my oxygen supplier whether or not I should have liquid oxygen so I can have a smaller tank and refill it as needed. If anyone uses ambulatory liquid oxygen I would like to hear of your experiences with it - the positives and the drawbacks and anything to watch out for. Thanks (Now I know what ABGs are vanessalee).

    Jacee

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  • Posted

    Wow! Jacee the liquid ox is the one to get! I've just been using it at the hospital. It's a large stainless steel 'mother tank', that stores it, and then you use a rectangular plastic portable thing -- simiiar size and look as the Airsep portable., and you wear it like a shoulder bag. Can't remember how long a refill lasts though, but can look it up later. The brand is Helios. They said I should get it roughly mid next week and I will be on 2 LPM, but just for ambulatory use - they said we will assume 6 hours use a day on average, and see how it goes over next 4 weeks and adjust if required. I just hope the 02 company doesn't overrule his recommendations as the mother tank will be hard to deliver to me up here.

    So, in short, pleased re the 02, and had a super lovely DR. but felt a bit down as he was saying that regardless of my smoking history I shouldn't be this ill this young. They didn't bother with ABG's, just pulse oxymeter and test walk. I already knew I was OK at 90 - 94 resting, and they confirmed that. I really persevered on the walk and managed 120 metres at my own pace until I couldn't do more. SATS showed 64% without 02, and 80% with it at two litres.

    He was angry that I only got diagnosed this year, particularly as I had had annual bouts of bronchitis and also severe sinus infection and been complaining to GP of exhaustion, unexplained weight gain etc.

    He has ordered another ECG, some sort of lung scan to check for small clots, and a heart scan. Oh, and he took blood for Alpha1 Anti trypsin test

    too. He was the most thorough Doc I have ever seen and this was just at the local 'cottage hospital'. Just wish they hadn't weighed me though -- I am now just 1 stone six pounds away from being exactly DOUBLE my usual weight. I have got to start seriously shifting it! Well, I'll finish for now as desperate for a cuppa :tea: Luv Vanessa x

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  • Posted

    Hi Vanessa, I am SO pleased you have got your O2. See, we will all be Airheads - or should that be liquid heads? Maybe water babies? :roll: - needs more thought.

    Whatever - I started on 2 litres per minute also but this has now reduced to 1. The ambulatory use will stop the big drop in your O2 when you are active and as your levels are okay at rest this should be enough.

    I was also told I was young (NOT very often I hear this these days!!) for the severity of my condition. Maybe we are pioneers and are changing all the stats? Maybe not. I am glad you got the liquid cos now I can rely on you to do all the research stuff and explain it to me in simple terms!!!!!!!

    It's funny (or not?) that our stories match so well. I also had numerous bouts of bronchitis, frequent chest infections, etc. for years and no COPD diagnosis or order for further tests from my GP.

    If I get the liquid oxygen I am not sure where I can store a tank, the garage can't even take a car it is that full of lawn mowers, power drills, bike bits, etc. Don't forget - if this is in your house, stick it in a spare bedroom and claim the reduction in council tax!

    You Doc sounds like a good one - and there are few of those in my experience. Hope he sticks around for you for a while.

    I will now have my morning :coffee: before going to the supermarket (a job I hate but I won't order on line as I like to pick my own stuff).

    Speak later

    Jacee

    xx

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  • Posted

    'Morning Jacee, re the tank size ------ Do you remember those spin dryers a lot of of our mums had back in the 50's and 60's? Well its like a slightly taller / fatter one of thoe and lovely gleaming stainless steel / chrome.

    I think at 1 LPM your 'shoulder bag' will last a full day as 2LPM is about 8 hours I think, but I can be more accurate on Wednesday when I get it. I ordered an exercise bike off Amazon last night as I know from when I was at Rehab that I can manage at least two minutes on one. Plan to do what I can at intervals repeated throughout the day. Will start serious diet and exercise routine next week. Planning it over this weekend --- hope to shift roughly a stone first month then half stone per month thereafter. Go into more detail later but really should get dressed now! Love Van xx

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  • Posted

    Hiya Van, I can't remember my mum having a spin dryer - or maybe I just never noticed it? Anyway, it does not help me visualise the size. And, do you know how heavy the shoulder bag is? I know I am being impatient and should at least wait until you have taken delivery of yours but I am a bit worried - I am used to what I've got and am quite happy with it except for the weight of the ambulatory cylinders. On the other hand, I don't know yet if they are going to change it over so maybe all my fussing will be for nothing!

    I remember you saying you do not see the ads down the side of the page, Well, the good news is that the offensive one (promising a \"cure\" for emphysema) has gone but I have noticed something - that they follow the pattern of our conversations. For example, when we discuss oxygen the ads include oxy tanks, O2 in a can, oxy masks, etc. When we talk of hospital the ads include ones for volunteers for clinical trials and use of the word ambulatory brings out ads for mobility products and bathing aids. Remember me mentioning water babies? This produced an ad for harvesting rain water!! So.........pantechnicon - let's see what they make of that one! :wink:

    Jacee

    xx

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  • Posted

    Hi Jacee, another insomniac I see! I can't say exact weight, but it felt no more than, say, a 2 pints of milk and bag of sugar, roughly speaking. I think it can vary slightly depending on brand etc, but most I think use what I tried, the Helios. I do remember someone saying it was slightly lighter than the Airsep we all so covet! Also, when I carried 'mine' I had just filled it (they were showing me how it worked) so it was at its fullest weight. They said some folks carry it like a shoulder bag, or handbag or on their back like a rucksack. It is the lightest and most portable form of 02 their is untill someone invents something else. Go for it Gal! Van x
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