A month ago my consultant said I needed to be on oxygen 15/7 to protect my vital organs due to low sats at rest. I had an assessment and was surprised to be immediately given an oxygen stationary concentrator which was set for 3Lpm. The engineer brought a very noisy machine which obviously couldn't reside in our bedroom. He started talking about tacking tubing all round the house, upstairs and down, drilling through walls and ceilings ..... wooo slow down!!!
I had it put in the spare room and trail tubing to my bedroom - not ideal but I need to think.
Now I am to be assessed for ambulatory oxygen, on Friday. If I am to have it, I suspect they will want me to make a decision (do I get to choose on the NHS?) then and there. My problem is, I want to cover so many variables - night continuous, upstairs and down, quiet, ambulatory for day trips, something I can take with me on holiday in Britain. My supplier only allows me to use their equipment within their region. They will arrange delivery elsewhere but what about getting there? Also we are planning a trip north to visit family and friends staying a night or two here and there. The supplier says 4 weeks notice is needed but we like to leave at the last minute as I never know how I will be feeling.
Will I be given choice of machines? Could I ask for time to consider my options?
Thank you for 'listening'. I am new to the forum. x
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happyfeet59
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My continuous oxygen at 2lpm has recently been increased from 8 hrs overnight to 15hours. Ambulatory oxygen 6lpm pulse. I managed to successfully arrange for my oxygen concentrator to be swapped to a smaller version iGo last year (it was just about the time the new contracts were being taken up by the new suppliers. mine changed to Air Liquide. I had a bit of a struggle but got there in the end. I felt I needed the flexibility that the smaller machine gave me to go away from home overnight at the last minute (i.e. when I felt well enough to do it). My family live 100 miles away & I wanted to be able to visit without having to make arrangements way in advance.
The iGo is not only smaller than my previous machine (which was about the size of a bedside cabinet) but is also quieter. It comes with a case that has a retractable handle and wheels attached like cabin size suitcase. At home it lives in the study and I trail the tubing across the landing, so with the study door shut there is no noise at all. However at my son's house and on holiday we have had it in our bedroom and not been bothered by the noise at all. During the day when I have to use oxygen (to get my 15 hours in) I drop the tubing over the bannister and trail it around after me - amazing how quickly you get used to it (know now what my children felt like as toddlers wearing reigns!!!)
For ambulatory oxygen I use 300 cylinders ( the 400 size are too heavy for my bad back). I tend only to use this when I am away from the house. When walking about the house without oxygen my SATS do drop but I tend to stop and get my breath back and then carry on.
Hope this helps and you manage to get the equipment you need.
Thank you all for your replies. Stone, I am with Air Products and have a booklet showing their 'wares'. I know I need to wait and see what my abulatory needs are, and what litreage will be recommended. Just wanted to get some info from experienced users. Please come back to me when you have had your assessment. Your experience will be welcome.
Maggie, I am on 15hrs a day. At the moment I am trying to fit it mainly into night . Its quite difficult but I do get breakfast in bed while I get some oxy hours in!
I am interested to read that you have an iGo AND cylinders. I thought it might be either/or.
Air Products do a Sequal Eclipse which sounds the same as the iGo. Can I ask why you don't take the machine downstairs to use it rather than trail tubing - is it just personal preference or is there a particular reason eg weight?
One last question. What do you do if you want to take your iGo/cylinders out of your providers region? x
Breakfast in bed sounds a good idea - wonder if I can work on that one!! I suppose I could take the iGo downstairs but really no trouble just dropping the long tubing down into the hall and work from there. If I took the machine downstairs I suppose I would plug it in in the hall and then trail the tubing after me from there so very little difference.
I usually put the oxygen on about 8.30-9.30pm. I tire as the evening progresses so am often quite glad of it then, even though sitting. The tubing then comes upstairs with me when I go up to bed (using my stair chair). Next morning I briefly take the oxygen off while I am actually in the shower, but find having it on helps me with what is becoming increasingly more strenuous- getting washed & dressed. Then piping and I go downstairs for breakfast etc. Oxygen off about 11.30-12.30 depending on start time night before.
There is no issue in taking my iGo with me if I go away(out of the region). Being portable is one of its main qualities and the reason I asked for it.
First discussion with nurse, about your activity and needs. You can also find out what's on offer.
I can use continuouse and pulse both at 2 lpm.
I was offered a poc inogen 2 , as this weighs 7lb I declined.
I was offered liquid oxygen, was not sure about suitability , so declined will look at in 6 months?
So I have decided to retain the cylinders with conserver will give me 7 hours. Per cylinder .
The test was a six minute walk over a distance of ten metres,
Walking to the gym no oxygen my sats fell to 83.
On 2lpm walking they remained at 91/92' checked every minute.
I only did 3 minutes about 100 metres.
You only do what you feel you can do .
At rest my sats quickly rose to 94/95.
Acceptable levels at rest are between 88/92
When moving they like 91/92.
My next assessment is in six months.
Maggie44 as got a good system which may work for you.
We are governed by the equipment available with our suppliers , they all seem different ,
BLF do a travel pack with loads of information on oxygen , airlines, airports worth asking for.
The only issue when you are outside your suppliers area is, you have to remember to fetch back any empties that belong to your supplier, and leave or arrange pick up of any empties if you have used a different supplier at you holiday destination,
Hi and welcome happyfeet59. I'm with BOC and they are good. When I was given a concentrator I was given the option of making the tubing permanent or loose. I opted for loose so I can wander around the house if I need to. When I visit places for a few days they contact the suppliers for that area and sort it for me before I arrive.
Hi Maggie. I am on 3Lpm continuous for 15hrs a day. I am fortunate at the mo to be able to walk around the house, climb stairs (breathlessness variable!) and wash/dress without oxygen. My sats were dropping over the past year and are currently at 88% at rest (down from 92% last Sept). Because I have my machine upstairs I am marooned there when on oxygen. The piping isn't long enough to reach downstairs and into kitchen/lounge. I am assuming that any ambulatory time will count towards my 15hrs.
It sounds sensible that you can take the machine with you. My engineer said 'what if you had a problem with it?' I suppose I could take my big cylinder for emergencies.
Puff. We like to just decide, book and go now we are retired. Air Products will sort it for me but they require 4 weeks notice! Also we often go to cottages where it will be difficult to arrange for someone to be there for collection.
Sounds like the Sequal plus 300 cylinders would work for me - providing my literage etc suits this on Friday.
My original concentrator (the large one) was installed by Air Products who were then my suppliers. The tubing was long enough to reach all over the house. In fact I am still using the same tubing now, even though I have changed supplier and concentrator model.
Like you, my argument for the iGo was to give me flexibility to go away on holiday or to family at the last moment. I have had to cancel several holidays in the last few years because I was too ill to go. Also I cannot expect members of my family with their busy lives to be at home to receive and facilitate collection of oxygen machines each time I visit. Like you we often hire holiday cottages and delivery and collection of machines could cause difficulties.
I am sure it is not beyond the wit of the oxygen companies to have some sort of arrangement to facilitate emergency supplies for each other's clients if a concentrator should fail. With well maintained machines this should be a rare event.
Air Liquide accepted my reasons for wanting the iGo to support me achieving flexibility and the best quality of life possible. It is important that we make the most of life while we can. We know only too well that time to get out and about may be limited.
Sounds like the sequal , long tubing, and cylinders would suit you.
Exactly Maggie! I've been thinking the Sequal might be for me - just the fact that I'd have to walk around with it when out at shops etc. The cylinders would be easier. If I can get both.....
My understanding is that it is my Resp nurse I have to convince , not the suppliers, as she is the one who makes the decision and gets the consultant to sign off the HOOF form.
How often do you have cylinders delivered and how many at a time?
Yes you are right - it is the oxygen nurse who will write the HOOF that you must convince. I have 6 x 300 cylinders. Because I am on 6 lpm - even when on demand, they don't last that long. I have not been going out much lately - been unwell so have not got through too many. just ring up when I have one full one left and they deliver 5 the next day. Obviously they do not deliver at weekends so need to take account of this. The cost for the NHS is for the delivery charge rather than the number of cylinders according to my nurse. When i had 400 cylinders I had 4.
I am new as well. I have a concentrator in the house but only get 0.5l as very thin due to weight loss and I just sit due to very low oxygen levels on the least bit of exertion. This has come on me suddenly since September with four spells in hospital. I was very active and I did love my holidays abroad.I am now trying to get a portable concentrator to enable me to drive ect and go on trips
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