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‘Wota’ a 02 week!

PaulineHM profile image
21 Replies

Anyone else having issues with oxygen delivery ?

This week I ordered a LOX Dewar on Tuesday for delivery Wednesday. The oxygen duly arrived on Wednesday. I usually check that I get oxygen out of it before the technician leave the house but as I haven’t had issues for a long time with it, I didn’t bother (s*ds law) !

Went to fill the 02 flask and couldn’t get anything from the dewar. Phoned the company Thursday first thing. They can’t come out as they have no technician available - short of staff. I tell them this unacceptable . They say they will supply as an emergency that evening.

An hour later on the Thursday an 02 technician knocks at the door to help me out. He, young, 6ft tall probably a healthy weight, manages to fill the two flasks..but I still can’t extract any 02 from the big tank. ( Weakling ) We arrange for a replacement tank for Friday.

Hmmmm,that means I will have to miss my exercise class so if I can eke out the 02 in the flasks perhaps I can go shopping and just make the exercise class?

I postpone the delivery of the replacement from Friday to Saturday. Made the class… had a cuppa with friends and await the new tank here today.

Go well.

Pauline

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PaulineHM profile image
PaulineHM
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21 Replies
pepparuby1 profile image
pepparuby1

that’s very frustrating - I’m not at that place yet - it’s a big fear but thanks for sharing and glad you got to your exercise class

PaulineHM profile image
PaulineHM in reply topepparuby1

Thank you- its a good place to share and vent!

PaulineHM profile image
PaulineHM in reply topepparuby1

Awwww thanks for the empathy. Not everyone gets to need oxygen, so hope that it is, how it will be for you.

Go well.

Pauline

Timberman profile image
Timberman

Hi - first time I have heard or read about this system. What rate of O2 are you one and is it 24x7?

PaulineHM profile image
PaulineHM in reply toTimberman

Hi there,

Ok, on ambulatory 02 for the last 7 years. First 5 years managed with a POC Inogen one G3 and travelled widely with a machine of my own, Spains for winters and US too.

Two years ago the POC was no longer able to meet my oxygen need, so had to switch to liquid oxygen and a static concentrator. Flow rate now is 4-5 plm.- continuous flow rather than pulse.

Still only needing ambulatory though! Started off with bottles and the static. The bottles drove me bonkers as I had to use the little trolley to take them around.

Changed to the LOX dewar ( Usually lasts me a month ) from which I fill a flask which lasts me up to 4 hours. Have two flasks which even if I fill and don't use then will exhaust themselves within 24 hours. Flask is carried on a small backpack -a system which really works for me. Walking, shopping, exercising in a class, meetings, etc.

Will post a picture for you later. Have to help if you have anymore questions.

How well,

Pauline

Timberman profile image
Timberman in reply toPaulineHM

Very interesting. I started out on a POC which I still use. Now up top 3 lpm. I bought my own Inogen like you for mobile use. As you say, pulse being different it runs much of the time at 4-5. So I bought another with longer battery life and up to 6 lpm pulsed - I reckon that will be good for another couple of years. Given I am 80 that may well be long enough! ()Joke - don't [panic.)

I find I have to be on most of the day, as my sats will drop to low 80s on any exertion - even a busy dinner table chat will cause me to check the lpm rate!

I have some heart issues overlaying the COPD so it gets a bit complicated.

Anyway, I shall discuss the LOX dewar idea with my team. Does the dewar get very cold during transfer?

PaulineHM profile image
PaulineHM in reply toTimberman

Hi Timberman,

You sound as if you are doing well with the 02.

The LOX Dewar supplies compressed liquid oxygen which can only be used via continuous flow ( different from pulse ) flasks, which yes do get cold. They have to be filled 30 minutes or more before use.

Not all the oxygen companies will place a LOX Dewar in the home. Many will only place it outside in a storage area citing safety as the reason. The one I have is in then conservatory.

They are mixed blessing, though for me I can still get out and about, exercise in a class, shop, walk etc.

Picture of Dewar and flask attached.

Go well.

Pauline

LOX Dewar and flask attached ready to fill.
Timberman profile image
Timberman in reply toPaulineHM

Thank you so much for your help. I live in a flat so it sounds as if my chances of using a dewar are low. I have an emergency O2 tank but it is only a 16 hour stop-gap- so low pressure and content. We use BOC - who supplies you?

And yes, at my age I am managing pretty well but the steady decline can be depressing. But, as I always say when asked: "Well, I woke up this morning so that's good..."

Nula2 profile image
Nula2

Oh what a worry! Surely they must realise you rely on your oxygen. Really hope the next delivery is OK 🤞🤞. (pleased you made the class & saw your friends) 🙂.Take care xxx

PaulineHM profile image
PaulineHM in reply toNula2

Thank you for your support Nula2.

Alberta56 profile image
Alberta56

How nerve racking. Thank goodness it worked out in the end.

PaulineHM profile image
PaulineHM in reply toAlberta56

Thank you. New tank delivered yesterday!

Turnipgirl profile image
Turnipgirl

That's great to hear you enjoyed your exercise class after all that!

PaulineHM profile image
PaulineHM in reply toTurnipgirl

Thank you.

BreatheasyBe profile image
BreatheasyBe

Hi Pauline

I’m ambulatory oxygen user via the liquid dewar and recently I’ve had a couple of issues…

First dewar completely emptied on first use. Second dewar I couldn’t press the button to check the volume in the dewar without the circular lock disk tilting into the machine meaning it was a task that required two hands, one to stop it tilting while using the other to press the button to get the volume indicator lights to glow. Thirdly a flask I was given to fill the oxygen didn’t close the shut of valve properly and the oxygen dispersed continuously.

Thankfully I have back up gas cylinders… I don’t get long with these though so am restricted to what I can do and where I can go unless on the liquid oxygen. I did find that the company was very good when raising the issues and quick to resolve the matters.

The downsides of liquid oxygen as you’ve already mentioned is the natural dispersion of the oxygen so you can’t refill a day or two in advance as there’ll be next to nothing left in it. I find it quite inconvenient that the flask has to rest for 30-40 mins after filling before being able to use it. Although I’ve recently acquired a flask that can be used straight away after filling but this is temperamental and so easy to overfill. I only use this in emergencies (I look after elderly disabled parents) I have to assist carers at times (lots of different carers, some unfamiliar with my parents particular needs) and carers arrival times can vary even as early as 7:30am ans as late as 11:30 and they don’t have time for the liquid oxygen to settle before I guide them.

The positives outway these. I can get out for so much longer. I am using a higher flow rate that meets my needs. The flasks are lighter than the cylinders. The new emergency flask allows me the flow rate I need to show carers how to do task related to my dad’s personal care, without holding the carers back as their time is restricted with each client.

Hope you enjoyed your exercise classes and have continued success with the dewar filling process x

PaulineHM profile image
PaulineHM in reply toBreatheasyBe

Thanks BreatheasyBe for sharing that comprehensive list of the issues you have with using a LOX Dewar and flasks.

Frustrating business sometimes isn’t it managing this equipment? Are you in the U.K. and would you be happy to share who is your 02 supplier ?

I wasn’t aware that there is an instant ‘fill and go’ flask. That sounds very useful. Each company seems to have slightly different equipment.

I don’t have portable cylinders as back up as I don’t get in with them either. They drive me bonkers dragging them around.

Locally agreed new contracts may be responsible for some the issues here where I am with shortage staff resulting in some failed deliveries. I would like to try to go away again this year but don’t have a lot of confidence in the companies to supply my prescription.

Keep in touch won’t you and happy to hear of any more issues you have.

Go well.

Pauline

BreatheasyBe profile image
BreatheasyBe

Hi Pauline yes I’m in uk Scotland supplier is vivisol previously know as Dolby vivisol.

Regarding holidays:

I have found the holiday oxygen team fantastic for local wee trips away and for organising ambulatory oxygen although it’s only gas cylinders they supply in Southern Ireland. I need to give the holiday team at least three weeks notice. Everything is delivered before I arrive. Just make sure you have notified the hotel before hand and seek permission to have it stored in their premises … all hotels that I’ve been to (Scotland) have been very accommodating so far.

Happy holidays when they come.

PaulineHM profile image
PaulineHM in reply toBreatheasyBe

Oh thank you, that sounds encouraging ! I went to Pembrokeshire last year. The local supplier Baywater originally agreed to supply a Dewar etc to a Travelodge room ( Hotel was happy too.) Came the morning to leave home to travel there Baywater called me to say they wouldn't deliver the Dewar to the room! A bit frustrating!! They did replace the empty bottles every 3 days for me.

So pleased to read that you were able to travel with the gas cylinders/bottles, that's great. When you travelled to Ireland was that a private arrangement you made with them ? Assuming it wasn't with the NHS ?

When I was using a POC I used to drive to Spain every winter... but not been able to try that with my current prescription.

Thanks for your support with this - it is very helpful.

Go well.

Pauline

BreatheasyBe profile image
BreatheasyBe

Hi Pauline

I was allowed to travel on the ferry Scotland - Northern Ireland with uk supplied sequi 5 concentrator and a couple of gas cylinders as back up. Uk equipment hasn’t to be used outside uk so holiday oxygen team organised static concentrator and gas bottles with Irish company. The Irish engineer contacted me directly to communicate where was best to leave equipment and for me to make arrangements to get more gas bottles dropped off as needed subject to prescription left by uk team. I don’t know why I can’t get the liquid oxygen in Ireland maybe it’s not supplied for holidays or maybe it’s not available in the region I holiday in.

First time holidaying with the oxygen I was anticipating all sorts of nightmares. Now I’ve experienced it myself I’d highly recommend.

Next step is sorting something out further afield but I’d need a flight test for that and not quite ready to take that leap post covid!

PaulineHM profile image
PaulineHM in reply toBreatheasyBe

Hi, it seems that the organisation of the oxygen for your trip was really good. What a relief for you and that good organisation makes all the difference doesn’t it ?

Yes, I am aware that NHS equipment can’t be taken out of U.K. and I had my own POC to use in Spain which made travelling very possible. Am not too sure if I could use a Sequi 5 because of my prescription being what it is these days.

Given your experience I will look into travelling abroad at some time in the future. I know I can no longer fly either because cylinders are not permitted on aircraft - for very good reasons of course. Although if your hypoxic challenge test stands up and the POC will meet your oxygen needs then it surely would be possible for you.

Thank you for sharing your experience with me BreatheasyBe. It has been very helpful.

Go well,

Pauline

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murphy53

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