Desperate plea for help: We are due to... - Lung Conditions C...

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Desperate plea for help

xb3ckyx13 profile image
35 Replies

We are due to be flying from the UK to Rhodes next Wednesday, however the hospital delayed my sons (12) fit to fly test and they have only just told me he needs to fly with oxygen 1l/min.

I have tried everything possible to source a portable oxygen concentrator. The requirements are that it is FAA approved and can last for 150% of the duration (flight is 4 hours and 10 minutes). It also needs to be a continuous flow.

We have had this holiday booked for 18 months, and was supposed to be our one and only family holiday.

If anyone has one to sell, or knows where i can rent or buy one from before Wednesday next week, i would be so grateful.

We live in Sutton, London, but i am willing to travel as far as i need to to pick one up this weekend. My son has been through an awful lot, and needs this holiday.

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xb3ckyx13 profile image
xb3ckyx13
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35 Replies
knitter profile image
knitter

Can you contact the ALUK helpline ?

Best of luck with your search .

xb3ckyx13 profile image
xb3ckyx13 in reply to knitter

I have tried, they recommended me to this forum

sassy59 profile image
sassy59

Can the hospital not help at all? I really hope you can get what your son needs and you all enjoy a wonderful holiday. Good luck xxx❤️

xb3ckyx13 profile image
xb3ckyx13 in reply to sassy59

They have been trying to help, but are hitting a brick wall just like me. They have no other suggestions.

They are trying to get a last minute fit to fly with cpap in hope we could use that instead on the flight, but they don’t think this will work as it’s the oxygen he needs. Thank you xx

sassy59 profile image
sassy59 in reply to xb3ckyx13

Wishing you all the very best xxx

Issy22 profile image
Issy22

Hi I hope you can locate one soon for your son. I had a quick look on eBay there is one available in London. All the best.

xb3ckyx13 profile image
xb3ckyx13 in reply to Issy22

Thank you for messaging.

I have seen one which is pulse only.

Another one I have seen doesn’t specify so I have contacted them but I’m yet to receive a response

Issy22 profile image
Issy22 in reply to xb3ckyx13

Hi I see this one but I don’t know if it’s what you’re looking for. Hope you find one.

Oxygen
Ern007 profile image
Ern007

What a let dow - You should have been told what you need, much earlier.

A cpap I would not use - No oxygen output and it forces air into the lungs.

Could you not push your holiday to a two week future date, to give you time to get sorted.

I hope for your and your son, something is worked out.

xb3ckyx13 profile image
xb3ckyx13 in reply to Ern007

The hotel is fully booked, and he starts his new specialist school on 6th September so we wouldn’t be able to amend it, only cancel.

I have managed to agree with the airline to take 4 portable cylinders, but they have strict requirements so could still turn these away at the airport.

Ern007 profile image
Ern007 in reply to xb3ckyx13

I hope it works out for you, to say no to 4 portable cylinders that are needed would be crass.

I was told at last minute I could not go on a flight with my wife, due to chronic illness, was so dissapointing .

Fingers crossed you are able to fly to Rhodes. - I loved all the Greek Islands bar Corfu.

Patk1 profile image
Patk1

Id contact special assistance associated with yr flight company

Paulo1976 profile image
Paulo1976

Hi, Sorry to hear of this predicament.

Apologies if you are already aware but from research, this model is FAA approved.

portableoxygen.co.uk/pre-ow...

Possibly claim back VAT?

I am not sure of the delivery though.

Fingers crossed for you and your family

Paul

x

TG58 profile image
TG58 in reply to Paulo1976

I'm guessing that probably costs more than the holiday.

PaulineHM profile image
PaulineHM

Hello, so sorry to learn of your situation. You must be incredibly disappointed.

I sorry to tell you that I know of no portable oxygen concentrator ( back pack ) which will give continuous flow.

You could try this company and ask if they have anything which they can offer to help your son. An Eclipse 5 would give 1lt/min continuous flow but not sure if it takes a spare battery.

healthoxygen.com/oxygen-equ...

Hope you make your holiday.

Go well

Pauline

TDM2023 profile image
TDM2023

Hello! Why don't you try emailing/phoning etc bbc/itv/Sky morning TV and radio news outlining your poor son's situation? They may do it as a human interest story. It's a long shot but gives you instant national coverage. Good luck.

MoyB profile image
MoyB in reply to TDM2023

Sounds like a good idea!

Hope you get something sorted and are able to go. xx Moy

MoosterMoo profile image
MoosterMoo

oxygen-concentrators.co.uk/...

These guys are based in Staffordshire. They require 2 weeks notice to hire but will try to accommodate you in they have them in stock. Good luck! I really hope you get sorted.

Thinkhealthy profile image
Thinkhealthy

if you look on line there are quite a few companies - my mum used air liquide. Here are some

Text
Pippydo profile image
Pippydo

sorry I can’t help you but wanted to say that I hope you manage to sort something out and get to enjoy your Greek holiday. Best wishes.

gardenalan profile image
gardenalan

make sure you check with airline as some airlines don’t allow oxygen in the cabin best of luck and have a lovely holiday

Collie4 profile image
Collie4

I hope you get something sorted soon and manage to have a good holiday with your son.

lvd29 profile image
lvd29

I've hired mine from Pure O2 its a Manchester company.Good luck.

Walkonthewildside profile image
Walkonthewildside

Sorry I can’t help but I just wanted to wish you and your family all the best and I hope your holiday can go ahead xx

Izb1 profile image
Izb1

I really hope that you manage to get something sorted out, please let us know how you get on x

MaminaElsie profile image
MaminaElsie

praying for you that you can find one and you all have a wonderful holiday.

Musicalways profile image
Musicalways

So sorry about this. There is a telephone number on the link to call and speak to someone. Hope they can help

theoxygenstore.com/new-inog...

TG58 profile image
TG58

Also just make sure that, whoever your flying with, accepts the machine you choose, most airlines have a list of what is approved, and if yours is not on the list, I would contact the airline, to make sure it's ok, as again not something you want to find out at the last minute.

leo60 profile image
leo60

Good luck xx

Numptybrain profile image
Numptybrain

Really hoping you source this and have a fantastic holiday. Good luck

Take care

Wendy xx

bazcranleigh profile image
bazcranleigh

Hello, I have travelled extensively by air using oxygen but have always been able to manage with pulsed oxygen. I wonder whether the 1L/min could be substituted with a higher pulsed rate. I have an Inogen G5 with plenty of batteries that you could borrow if it would do - can you check with you respiratory team? It may be worth doing that today. The G5 delivers up to 6 L/min pulsed. It may be sufficient. I live in Cranleigh.

xb3ckyx13 profile image
xb3ckyx13 in reply to bazcranleigh

Thank you for your message! I will speak to the respiratory team and see if this would be an option!

Thank you so much for offering to loan us the machine.

I have managed to find a second hand Sequal eclipse we are going to see first thing tomorrow morning in Southend, however the advert seems a bit suspect and I’m worried it won’t be what it says.

If we have no luck with that one, and respiratory say it’s ok, would it be possible to take you up on the offer? I would happily pay to borrow it, and give you all my personal details so you know who I am and where I live.

Cranleigh is showing an hour from me, I live in Sutton.

My number is 07850519320. Please could you send me a message and I can let you know tomorrow morning either way if that’s ok?

Would you be around for us to collect it this weekend?

Thank you,

Becky x

cazza34 profile image
cazza34

Hello can you not hire one? you cant take NHS equipment out of the country. Oxygen assessment can advise on private hire. I've just found this online. I'm in a similar position as I I need continuous flow, I'm pretty sure there are handbag style portable concentrator that do up to 2L continus flow, beyond that it is pulse only. Good luck and hope you all get your holiday.

Black text on white
strongmouse profile image
strongmouse

There are some on the Gumtree website for sale, but not sure if they are suitable.

Patk1 profile image
Patk1

I hope you've been able to follow up some leads and are able to source what u require.special assistance will advise what documents u require eg drs letter and will give u additional free hand luggage.id ring them ASAP. Gd luck x

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