Siesta sue

[siestasue]

I have been on home oxygen for the past month and have a concentrator machine. I use it as ambulatory, mostly when out and about. I have been issued with 2 self fill bottles, one 1.7litre the other 1 litre. These are not enough for my life style but the hospital refuses to issue any extra. Nor will they give me a private prescription to buy them myself. What is the answer to this?

[Thomac]

Could you maybe be moved onto liquid 02?

[siestasue in reply to Thomac]

I believe because I live in a flat that all options are not available for me but thank you for suggestion

[Thomac in reply to siestasue]

Do you have a secure area outside you could leave the oxygen? We have had the dewar delivered to holiday cottages and it’s been kept outside. It can also be taken up a few stairs via a lifter. May be worth clarifying as it does give you much longer than self fill tanks.

[siestasue in reply to Thomac]

No Thomac there is no secure area of mine or anyone's. This is a block 'over 60s' flats and I live on the 1st floor. I was told at my assessment that as I did not live in a house I could not be considered for this.

Sue

[Jomo46]

How long does your present supply last when out?

I had bottles that lasted 2 hours. I went to the hospital , waited for appointment and then did not have enough for journey home. The hospitals will give you a supply while you are there. I can’t carry 2 bottles.I was on ambulatory at the time. I had to take a taxi home, when I had usually walked to a bus stop, got bus, walked to home. I would need an hour of oxygen for the journey..

I wrote a letter to oxygen team , they assessed me again and I now have an inogen converter on a trolley that lasts me 5hours. I can plug in to charge up the battery.

The team in Liverpool say they try to maintain a lifestyle in terms of oxygen supply.exercise,getting out is good for us.

Are you talking to the right people.the supply people can only give you the oxygen team peoples prescription.

If the oxygen people refuse more, try to document your usage and contact your consultant and then

the patient advisory liaison ( PAL)

Good luck jo

[siestasue in reply to Jomo46]

Thanks Jo for interesting reply. The large bottle lasts 2 hours, the small one 1h 20m. I use half the small one for washing, dressing etc and the other half for preparing my evening meals. I go out with my sister most afternoons using the 2hr bottle which at this time of year just about works. But in the summer I will have a problem because we are out much longer. I was then issued with the long tubing to use at home therefore saving the bottles for when I'm out. But this doesn't work as I use a rollator to help me walk and the tubing just gets tied up in the wheels and makes it impossible to move around. The self fill bottles work for me I just need at the very least one extra. Why is this such a problem? Thank you for the advice as where to take this further.

[siestasue in reply to Jomo46]

Also Jo the bottles fit into the box under the seat on my rollater, it would be impossible for me to have a tank on a trolley becase I could not push that at the same time as pushing my rollater

[Dietrech]

Hi Sue, I use the InogenOne and have a spare battery (I bought myself), if I’m out for a long time. I don’t have a rollater, I wondered how that helps you? I’m considering a wheelchair because even with oxygen I’m struggling to walk when I’m out! I never dreamt I would get this bad as I have never smoked, but been asthmatic all my life! Well done for keeping so active, I really admire you!

[siestasue in reply to Dietrech]

I really feel for you Dietrech I have only myself to blame as an ex smoker. I could not walk any distance without my rollater both indoors and out. It helps support me whilst walking plus it has the seat which I also could not manage without as I use often to catch my breath. At supermarkets I get round by leaning on the trolley. I also have a wheelchair for longer distances. My lovely sister has the joy of pushing me around! My life would be very grim without her support. People who have partners are very lucky even for little things like a cup of tea when you live on your own you don't always have the puff to make it! Is the Inogen1 one of those private concentrators? I was wondering about one of those. I really have to push myself to do things, everything takes such a effort as you know. I could very easily just sit.

[Dietrech]

Yes I know what you mean, it’s easy to just sit and do nothing, that’s the only time I’m comfortable! Smoking was very prevalent years ago, and hindsight is a wonderful thing Sue, so I’m not judging you! Whenever I mention COPD, I’m asked how long I smoked for! My mum was a severe asthmatic who died from it in her early fifties, and I’ve been asthmatic all my life! Yes the InogenOne G3 I have is one you carry as a shoulder bag affair, but it’s too heavy if you’re struggling to breathe, so it’s helpful if I’m just out for coffee, but not if I need to walk anywhere! You could put it on a rollater you have one. I’m glad you have your sister to help you. My sister was disabled with rheumatoid arthritis and Bronchiectasis and had a lot of help or she wouldn’t have been able to get out of the house! Which rollater do you have please? Nice chatting with you. Thanks for your advice.

[Jomo46]

The inogen 1 that I have was supplied by the oxygen team. ie nhs.

Oxygen can be pulse or continuous flow. Continuous, is a nonstop flow. Pulse gives you oxygen as you breathe in. The machine makes a noise and lights up ,as I breathe in. If I don’t breathe properly a red light comes on.I found it a bit difficult to get used to.I'm apparently a mouth breather naturally, and had to teach myself to breath in through nose, out through mouth. You will be on continuous flow. The oxygen team can order a pulse controller for you, (after assessment). This means the tanks last twice as long. I used a pulse controller with the tank for a short while. The inogen 1 is a pulse machine. Some of the other inogen ( and other makes)are pulse or continuous. I had to be clear with the oxygen team that my life was being limited by the short life of the tanks. They bent over backwards to help find the right solution for me. There is no magic solution. The inogen is quite heavy but does the job.

Good luck

[siestasue in reply to Jomo46]

I am due my first assessment after being on o2 in February and they will look into pulse. But was told not everyone copes with it. What do you mean the imogen is heavy? Heavier than my self fills? I thought they'd just adjust the setting on the bottles I have.

[Jomo46]

I don’t know actual weights of either. I find the inogen fine for pulling on trolley, sitting in a supermarket trolley, but lifting it into a car, up a step, or supermarket trolley is getting harder.

Xx

[Jomo46]

If you go onto pulse with your bottles, when I had that it was a gadget about the size of a 20 pack cigarette box. I could change from pulse to continuous or off.

[siestasue in reply to Jomo46]

Hi Jo, I have been offered larger tanks which are not refillable but I could not cope with the weight and size of them. My sister has to lift the ones I have up and into shopping trolleys, etc. I have to rely on the goodwill of people to help me but this could wear thin if everything is so heavy that I can't help alongside them. My occupational therapist understands my problem and is on my case. But I think I'll have to get by till February when I have the first assessment after being on oxygen. I would like to thank you so much for your advice on pulse, where to take this matter further, etc. I am so glad you answered my post. Sue

[siestasue in reply to Jomo46]

Jo I've just looked at a picture of the inogen1g3, is this what you have? I was imagining a big bullet shape tank but it looks like a toaster without the slots at the top.

[siestasue in reply to Jomo46]

Jo, I've just realised that the last comment I sent is so wrong, of course you don't have the imogen I mentioned because you have already said you use a trolley. Sorry.

[Jomo46 in reply to siestasue]

Different inogen have different settings and capabilities, if you decide to buy, remember you will have to pay for servicing. Good luck with it all.

My inogen is an inogen1 g2

X jo