Ambulatory oxygen
Posted , 10 users are following.
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
0 likes, 28 replies
Tessa
Posted
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.
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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
Jacee
Posted
Jacee.
Tessa
Posted
Can you get a trolly thing from your oxygen provider or do you just buy a suitable something to move it around in.
Jacee
Posted
Jacee
Van
Posted
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
Jacee
Posted
Jacee
:wink:
Tessa
Posted
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
Guest
Posted
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
Van
Posted
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
Jacee
Posted
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
Van
Posted
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
Jacee
Posted
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
Van
Posted
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
Jacee
Posted
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
Van
Posted