Shortage of Portable Oxygen

[mary1956]

Hi I am on 24/7 oxygen. I have a concentrator for at home, and cylinders for being out and about. I am only allowed 8 cylinders because of fire risk. I have 2 large back up cylinders in case there is a power cut, so I can only have 6 portable. I now need 10-12 litres when walking, so a cylinder does not last long. The problem is that my supplier often runs short. Today they could only leave 2. I had a hospital appointment earlier and used 3, so I now only have 3 until Monday. ( no deliveries at weekends). I’ve ordered more forMonday, and hope I get a full amount as I need them on Tuesday, for another hospital appointment, a 2 hour drive away. Do others have these restrictions?

[CDPO16]

Hi Mary, I don't need the quantity of ambulatory oxygen that you need but had 3 cylinders delivered a week ago and my supplier made no mention of a shortage. Of course things could have changed since then but if so I'm not aware of it. I'm in NW England. I hope you get your problem sorted soon, it must be very worrying for you. Carole.

[mary1956 in reply to CDPO16]

Yes, I will see what they deliver on Monday and accept It.

[Tykelady in reply to CDPO16]

I have never had any trouble getting next day replacements even if I haven't used my allowance of 6. I always try to keep 2 in reserve in case of emergency. On a flow of 2 my cylinders last three and a half hours.

[CDPO16 in reply to Tykelady]

Perhaps you intended this reply for mary1956.

[Tykelady in reply to CDPO16]

Yes, I'm a bit of a klutz. xx

[CDPO16 in reply to Tykelady]

Not at all. It's easily done xx

[Biofreak]

Yes my husband could only have a maximum of 8 cylinders and he was on oxygen 24/7. Whilst we had 2 concentrators at home if he needed to visit hospital or anywhere else the ambulatory oxygen cylinders were quickly used up. Fortunately there was no shortage then and it must be very worrying for you if that there are supply problems. My husband's oxygen supplier didn't deliver at weekends either and that was a problem sometimes. I was constantly checking his supply and tried to organise a delivery to arrive on a Friday. It didn't always work out that way though. Did the company say why there was an issue?

[mary1956 in reply to Biofreak]

No, they said there wasn’t, except high demand on Fridays! Thanks for your reply

[skischool]

Could you possibly arrange hospital transport for your appointment thus saving you having to use your valuable supply of oxygen as the hospital transfer service could supply the oxygen that you need for the visit and the hospital itself could supply oxygen whilst you undergo your treatment or consultation?

[mary1956 in reply to skischool]

Excellent idea. I didn’t realise hospital transport provided oxygen. Thank you.

[Carnival567 in reply to mary1956]

I have no problem getting ambulance transport for the oxygen. I am on 4-6 litres depending on what I am doing. I also have a large cylinder at the hospice which they organise for me. I think you should state clearly what you need because they should be providing it for you. My journey is 30-45 minutes so that would use one complete cylinder each way. It makes life easier and much more secure. All the best x

[mary1956 in reply to Carnival567]

I will certainly check out hospital transport. Thank you

[Dedalus in reply to skischool]

When I got hospital transportation (ambulance) they said they couldn't give me any of 'their' oxygen (it was a private company contracted by the NHS)

[skischool in reply to Dedalus]

Did you mention you required oxygen when you actually booked the transport?if you did then they where breaching their contract with the Nhs,but it is quite possible that somebody at the ambulance station dispatching the vehicle just didn't read the notes.Certainly Mary would need to mention the large amount of litres per minute she uses as that is probably more than they are used to dealing with?

🙃

[Dedalus in reply to skischool]

My first time booking patient transport - I didn't think to mention it beforehand (doh!). A good lesson learned 🤭

[Thomac]

Perhaps you could switch to liquid oxygen? The flasks last longer than the portable cylinders

[mary1956 in reply to Thomac]

I did have liquid, but the amount only went to 5 litres so didn’t last long. They also said I couldn’t have liquid and a concentrator, and I do need the concentrator. Thanks for the idea.

[Thomac in reply to mary1956]

How strange, my husband liquid 02 flasks go up to 15lts and he has 2 high flow concentrators in the house, on 24/7 O2 plus a liquid oxygen Dewer. His supplier is Dolby vivisol perhaps different suppliers have different rules.

[mary1956 in reply to mary1956]

That’s interesting. I will check out the liquid again. Thanks

[Millyboo710]

I am on oxygen 24/7 and have two concentrators at home plus 6 small cylinders and 2 large back up ones. I use hospital transport for appointments to the Royal Brompton as it is two hours away from me and the drivers have cylinders. We also invested in a portable concentrator for when I am out locally. It plugs into the car and recharged as we drive. It was a real boon when we have a three hour drive to go to family. I think the NHS does lend them sometimes or keep an eye out to see if you can get one secondhand. Good luck.

[mary1956 in reply to Millyboo710]

Than you. I’m 2 hours away from Harefield so that is well worth thinking about. Many thanks.

[Joy123]

Hi Mary1956, juggling cylinders/concentrator both static and portable is an on going battle for me. Can I suggest you ask for hospital transport for your hospital appointments as, because you’re on 24/7 oxygen (like myself) they’ll send a vehicle which is equipped with oxygen cylinders in order to transport you? Much easier/safer than constantly being in fear of running out. Good luck. Joy x. Just read what others have written and somebody else has suggested this. Also, I think your oxygen supplier has to deliver the amount of cylinders that your consultant requests for you. I was told I couldn’t have more than 4 baby ones but prescription was altered on Wednesday and 3 more arrived on Thursday. X

[Beachballs]

Hi Mary ,

I am also on oxygen 24-7 and on 10 Lts of liquid oxygen when on the move . The problem with these high numbers is that the oxygen only lasts 90mins when on the move , my nurse did look at cylinders for me , but said it wouldn’t work, but you seem to be doing ok time wise on them. Can I just ask , how far can you walk on 10lts ? and do your numbers drop whilst walking?

[mary1956 in reply to Beachballs]

Hi, yes my numbers drop as soon as I stand up. I can walk slowly to the bathroom but my numbers on 10 litres drop from 90 to 70, very quickly. Recovery can take 5-10 minutes which is the hard part. Sometimes they drop to 55, but there is no pattern. I try to stay calm, but that is getting harder. Luckily they usually stay up if I’m sitting, although this can change.

[Beachballs in reply to mary1956]

It’s the same for me Mary , whilst at rest tend to stay at 90/91 , but on the move I.e. the loo , they drop to low 80s - 78 - 74 have to wait for them to come back up , before I can head back , then providing I don’t fath about , sit down and wait for them to come back up again. I don’t think the liquid oxygen would be helpful for you as you seem to get more time with the cylinders . It’s useful to know about patient transport. Good luck with your next trip . Have you done lung functions yet on these high levels? Just wonder how that works ?

[mary1956 in reply to Beachballs]

No lung function yet. At my last appointment I could only do some of the lung function tests. Got a VQ scan on Tuesday to measure the air and blood flow of each lung so they know exactly which of the 2 lungs is worse, as they both look equally scarred. Having it done so they will know which lung to replace first.

[Beachballs in reply to mary1956]

Ahh ! Good luck with that , sounds like things are progressing nicely for you now. I wish you all the very best . 🙏🌷

[Bingo88]

I am sorry to hear about your condition and the extra worry you have of running out of Oxygen. This can't be right and shouldn't be allowed to happen. Have you spoken to your doctor about this. Because someone should be having a word with someone. Take care and hope you get it sorted soon. Brian

[mary1956 in reply to Bingo88]

Thanks Brian, Luckily I will only run out if I go out. As I have a concentrator at home then I have oxygen. They haven’t provided me with enough to leave the house. We are going to use one of the large back up cylinders to get me to hospital, and they will have replace that. It’s too late to arrange hospital transport, but we will inform the oxygen supplier that if they cannot provide enough small cylinders then we will need to use the large. These are meant to be saved for power cuts, if we can’t use the concentrator, but needs must.

[Bingo88 in reply to mary1956]

Yes such a worry that you shouldn't have really love. Hope it gets sorted soon

[BreatheasyBe]

Hi Mary dolby vivisol deliver my supplies and on one occasion there was a week before they could get a delivery to me. This was a week or two before Christmas. Usually they drop off with less notice. I think on this particular occasion they were suffering staff shortages through covid isolation and obviously condensing deliveries over a shorter time frame for festive holidays etc I had my dewar and refillable but thankfully still had a gas cylinder left. I prefer to keep these for hospital app first thing in the morning as the liquid oxygen disperses quite a bit if I fill it anytime before hand, they are also temperamental sometimes they get stuck on the dewar and sometimes they release the liquid mist from the bottom of the chamber and end up emptying. It’s always good to have a portable back up.

[HighGables]

Yes Mary, like you I am only allowed 6 small and I’m with Air Liquide. I’m fortunate that I have two concentrators, one up one down, so two 10L. I’ve used one of those when the deliveries go pear shaped. Not ideal but it sure helped.

[Sharp5Flat13]

You can’t get a portable O2 concentrator?

[mary1956 in reply to Sharp5Flat13]

No, the portable only goes to 5 litres. I do have enough O2. We have 2 big concentrator joined together so could have 16 litres if needed. Plus we have some cylinders for going out. The shortage a few weeks ago was temporary and we used the large reserves we have. All been ok since.