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Copd & foreign travel

siestasue profile image

I am on 24 oxygen and a niv machine at night. I would dearly love to visit benidorm once again before I die. Is this feasible? I feel too frightened to go.

42 Replies

blf.org.uk/support-for-you/... so I've just googled and found this link for you to look at, you would need to have the money to pay for oxygen abroad as UK specialists don't allow equipment outside of uk, so you need to organise that in the country and pay. And if you need oxygen while flying you need to complete a fitness test or something. It maybe worth ringing your consultant for advice. Also the insurance company to cover medical and equipment I guess?

Thanks for link but giving up idea, not as simple as I thought.

As mylungshateme says you'll need to go through the hoops. Aside from the additional expense, you will have to get a fitness to fly letter from your consultant otherwise go for it if that's what you want to do.. I can understand your fear but on the basis you have your oxygen at all times and niv machine at night, what is there to fear? I wish you well.😍

Giving up the idea sparky, too complicated and stressful for me to deal with. But thanks for reply.

At least you've given the idea more than a thought. It's not meant to be. There;s much i would like to do but have to accept that I cannot. I have Emphasema stage 3. I thank the Lord that in the past I have been able to travel, sometimes to far off places and at least I have the memories.😙

Good morning siestasue. If you are on Facebook and some Benidorm groups. You will get advice on this from members on there. Hope this helps and you get to your happy place again. Perhaps think about taking someone with you for reassurance. Brian

siestasue profile image
siestasue in reply to Bingo88

Morning Brian, having read the other replies I've realised that it's far too complicated so giving up that idea!!

Bingo88 profile image
Bingo88 in reply to siestasue

I feel so sorry for you. I also love the area and have been going for 35 years since my parents 1st took me. My Dad wanted to go back 1 last time after being diagnosed with terminal cancer but wouldn't go without the insurance. I will see what information I can find out for you. Hope you have a good weekend

Hi siestasue, as mylungshateme said providing you are medically fit to fly, as determined by your Respiratory Specialist you will be able to go, wether you can afford it financially is a different matter, you will have factor in the cost of your oxygen for getting to and from the airport and the oxygen for holiday itself.

The real stupidity of the situation with regards to the oxygen is, you are not allowed to take your NHS oxygen outside the United Kingdom, but your NIV machine you can take anywhere in the world, because you are on oxygen 24/7 under the old EHIC EU rules you would have been eligible for free oxygen for your holiday in resort, you would just need to provide the oxygen for in flight and to and from the airport both ways, so would just have to hire a Personal Oxygen Concentrator for that part of the journey.

I was in a similar situation in March 2020, we had booked for Gran Canaria I already have my own POC so I only needed oxygen for the holiday resort itself, I think from memory I was quoted about €400 for the week through a Spanish supplier, unfortunately then the Pandemic happened and the holiday was cancelled.

For the POC oxygen on your flight you have to allow one and a half times your flight for battery life on your POC, not forgetting the time it takes getting to and from the airport, so you will probably need a spare battery, the hire of a POC is about £500 per week here is a company in Manchester who hire holiday oxygen: healthoxygen.com

And finally there is the holiday insurance you will require.

I hope I have been some help.

Ian.

siestasue profile image
siestasue in reply to Ian1967

Thank you Ian for your very interesting information. We'll that's that, it's far too complicated it's back to looking for English seaside resorts on the flat!! But once again thank you for spending the time to send me such detailed info.

What about trying to get a cruise that will take you there. You wouldn’t have the problem of oxygen. I don’t know if they do go there. It’s like they say. If you fly you’ve got to have a fitness test to fly. I believe you can take your oxygen on there but see your Dr first. I would love to go on a cruise one last time but I’m sure if I did I would want to go again.

siestasue profile image
siestasue in reply to Mavary

Looked into cruising but since covid a lot of companies won't take people on oxygen and even if they did you have always had to pay for private oxygen. Plus the insurance if you can get it (being out at sea) is horrendous. Like you I loved cruising.

Mavary profile image
Mavary in reply to Mavary

That’s a shame. Your only chance then is if an airline will take you. I’m sure I can remember when my Husband had IPF that there were a couple of people who had oxygen and had it on the plane. You do need your Drs or Consultants permission first.

Bob207 profile image
Bob207 in reply to Mavary

Easy jet allow two small portable compressed oxygen cylinders.

Hello. I don't think that it is adviceable.

siestasue profile image
siestasue in reply to 0282749m

No, with information received I agree. More complicated than I thought.

The NIV maybe problematic in that after use infection control no one can enter the room for at least 1 hour after now with covid so some people are bit twitchy as they dont understand how NIV works and not invasive. But if it's your wish dont be put of at the first hurdle speak to your respiratory nurse or consultant they may provide you with everything you need to know. Or maybe ring the BLF or whatever it's called now helpline mon for advice? Good luck. X

Hi I don’t know if this is feasible but because I have COPD I now go by train! I have travelled through France/Spain and their rail system is reliable and fast. After going on Eurostar, yes you would have to change stations but I’m a great believer in going all out to do that one thing you want to do before we go. I’d willingly be your tour operator! Look at:

seat61.com/Spain.htm#london...

siestasue profile image
siestasue in reply to Jillybaby

Love the idea jilly but unfortunately I can't walk very far for changing trains, etc. I use a walker or wheelchair. My only family is my tiny 5ft sister who helps as much as she can but this would be too much for her and very stressful for me which then makes me breathless. So I would need to hire a strong male carer to do all the donkey work!

Jillybaby profile image
Jillybaby in reply to siestasue

Sietasue. You can borrow my 6ft 7in son! I can’t think of a plan B but if I win the lottery you will be the first on my private jet or yacht! I hope you get your staycation and enjoy one of our lovely seaside resorts!

siestasue profile image
siestasue in reply to Jillybaby

Your son sounds exactly what I need! Thanks for making me laugh!In the meantime I will carry on looking for new staycation areas on the flat and level. Cheers.

I feel for you. Been going benidorm 2 to 3 times a year for years. Since being on oxygen for pulmonary hypertension not been allowed to fly. The small portable oxygen machines only go to 6 litres. I need a lot more then that. If you are on less I'm sure you could sort it. I'm absolutely gutted that I'll never go again. Good luck. The small inogen that goes up to 6 litres can be used 24 7 and can be hired.

Ian1967 profile image
Ian1967 in reply to Kate124

Hi Kate124, I have the Inogen One G5 you are talking about, I have that machine supplied by the NHS and as you say can be used 24/7 at a push, but it can't be connected to an NIV machine to supply supplimentary oxygen at bedtime, the problem is the G5 and all other Inogen Portable Oxygen Concentrators are Pulse Dose machines and they are not suitable for sleeping with, because Pulse Dose is not guarenteed to trigger during sleep, for that you need a continuous flow machine or bottle.

Ian.

Kate124 profile image
Kate124 in reply to Ian1967

I have done one overnight with my inogen. I used a mask to be sure. It was fine. But like you say not suitable nighttime for you.

Hello yes I'm on oxygen 24 and on NIV machine at night as well but when on holiday for 4 weeks and back before flying you would need to do fit to fly test and on your best health go and come back make sure you have inogen G5 with and extra battery as well it's possible you can just have to believe in yourself and have everything organized for you it's easy these days everything you can from your phone if you need advice please let me know would be happy to help take care foxy79

Hi Siestasue please don’t be put off heading away or at least traveling closer to home. I’m not sure if you drive and have access to a car? I’m currently in Ireland my first main trip away since the pandemic. Ferry company were great organising a secluded area to minimise contact with others as much as possible and I had my daughter help share the driving load. By going via car I packed everything I needed with me and as the uk don’t allow us to use their oxygen supplies the oxy company in Scotland sorted out the oxygen company in Ireland for me. I’ve no idea about cost (if any) but can get back to you once I find out the total bill. All was very well organised. I’m way to nervous about flying due to potential covid risk and all the mitigations being reduced, so coming to ireland via the ferry and car was my next best option. A change of scenery is as good as a rest but by staying local we can’t always guarantee the beautiful weather so a little compromise might be needed. Hope you get something sorted x

Thanks for advice but I normally have a UK holiday every year, I was just wondering about going abroad again. But not a good idea now given my health.

Seaberg profile image
Seaberg in reply to siestasue

I am so sorry to hear about your problems. Apart from all the logistical obstacles the additional expense involved is frightening. I hope you can find a holiday destination that will offer some pleasure.Best wishes.

siestasue profile image
siestasue in reply to Seaberg

Thank you for your kind comments

Like Seaberg I'm sorry you feel there are too many difficulties about going abroad. i hope you can find somewhere nice nearer home and that the weather is good. xx

siestasue profile image
siestasue in reply to Alberta56

As you say it's too stressful, arrangements and travelling whilst wondering if all equipment is in place isn't worth it. I think if I had a larger family who could help me would have made the difference. But I'll have to deal with everything and I'm not up to it.

Alberta56 profile image
Alberta56 in reply to siestasue

I sympathise. I'm in a similar position, except I don't have to manage oxygen. Organising things takes a lot out of you.

You really would need to check with the airline I was on a plane not long ago and because a lady on the flight had to get off again I felt so sorry for her but I overheard her say she had flown not long before with a different airline with no problem sorry I can’t remember but it was either Ryanair or EasyJet good luck x

Good evening, Sue. I am in much the same situation as you, with oxygen and walking problems. Please don't give up yet. One possibly more simple thought. Have you considered a coach holiday? Door to door pickup, taken to your luxury coach then off to Benidorm! An appropriately named company called Siesta Holidays ( Tel: +44(0) 1642 257920) go to Benidorm, but that involves overnight coach travel, which we are not keen on. I love travel and really want one more trip, in my case to Switzerland. Flying is out of the question so we have booked with Shearings Coach Holidays, with an overnight stop in Belgium in both directions. The coach stops every couple of hours for snacks and/or toilets. Dolby Vivisol (0800 917 9840), my home oxygen suppliers, do cater for oxygen travel requirements (for a fee) and are extremely knowledgeable and helpful. I have my own POC with sufficient battery power and Shearings have no problem with that.

I wish you luck!

Thank you for your interesting reply, I will get back to in a while

Sorry for delay in responding but I have been poorly with another chest infection. I don't know that I could cope with getting on and off coaches any more, I don't have the puff, which is why my sister and I travel in her car. I don't have a POC, I use a concentrator and Dolby arrange for one to be in place wherever we are going in the UK. It sounds as if you have alot more energy than me! But above all I think my fears are based on the fact that I would have to deal with everything, my sister being a very meek and mild soul, the only family I have now. Also I fear that something would go wrong abroad and I will die. I think if I had a strong capable person with me I'd have more faith. Out of interest what would Dolby do in regards travel abroad? Thank you so much for taking the trouble to give me such a informative answer, but not sure if it was a good idea.

I am sorry to hear that you aren't likely to fulfil your dream and get to Benidorm again. As I understand it, anything that Dolby can do in the UK they can do abroad. My (younger) wife and I last went on a coach trip pre-Covid and am hoping that the drivers will get me to the hotel and then I can choose which of the included trip I go on, spending the rest of the time with a good book by the lakeside. I agree that there is a considerable amount of walking involved at the stops (coach parking is not often close to restaurants or toilets) and that is beginning to concern me, as is the drop-off to the hotels. I am hoping that my POC will see me through! Another problem is insurance. I have let mine lapse and a short hospitalisation last year for a touch of pneumonia has meant that premiums quoted are in excess of £2000 for the 2 of us - for 9 days! There is a EU card which we can still use, which gives us treatment in Switzerland and the EU for the same price as a local would pay, so I may rely on that for my fibrosis, although, with my rescue kit, we should manage for 9 days. I think that, bearing in mind your lack of support, that you have made the right decision but just wanted to point out the option.

Stay well.

Hi Baz, sorry so long in replying but have been in hospital once again. I'm not doing well this year, 4 chest infections and 2 hospital admissions and it's only June! Normally one a year and admission once every 2 years.Anyway I am so interested in your holiday plans to Switzerland I would love it if you could let me know how you get on.

Also I would value your opinion on POCs, how exactly do they work? I know the basics but no more. Whenever I bring the subject up at the hospital they try to talk me out it. The expense of servicing and reliability, etc. Cheers Sue

Hello Sue,

Sorry to hear that this year has been a bit of a struggle for you. Time is no real friend in our situations. I had a surprising bout of pneumonia just a year ago (surprising because I had always believed that it was a winter disease) but so far this year nothing.....touch wood. I am gradually trying to build up for the holiday after being virtually housebound (through choice) for what seems like years. We went to Eastbourne for a days tennis earlier in the week (watching not playing!) and have tickets for Wimbledon next week. Eastbourne was almost a disaster as I almost ran out of oxygen from my cylinder and we had to leave early. Still, lesson learned.

We leave for Switzerland on July 16th for 8 nights. Quite glad not to be flying!

POCs

One thing to remember is that they are all pulsed devices and they pump air through filters to remove nitrogen and the O2 concentration is increased from 20% to over 90%. The sort that you can carry around with a shoulder strap or a back pack will provide up to 6L/min maximum. I came across the following which may explain the advantages.

1.What is a Portable Oxygen Concentrator?

Portable oxygen concentrators (POCs) are devices used to provide oxygen therapy for patients in need of more oxygen than is available in ambient air. These devices work by filtering the oxygen from the air to provide supplemental oxygen as needed. Portable oxygen concentrators are smaller and lighter than home oxygen concentrators and are designed to be easily carried while on the go. Portable oxygen concentrators can be plugged into an AC outlet at home, in a DC outlet in the car, or cord-free with a battery.

2.Advantages of Portable Oxygen Concentrator

Portable oxygen concentrators are far less dangerous than traditional oxygen concentrators, which can rupture. The main benefit of a portable oxygen concentrator is that it makes its own air, so you do not have to worry about replacing an oxygen tank. This increased mobility means that just because you need oxygen, you are not forced to cart around an oxygen tank. Portability, lightweight, and easy to use, portable oxygen concentrators are quickly replacing the dated oxygen tank models. And, as they continue to become smaller and smaller, they are gaining more and more popularity.

3.What is the Delivery Mechanisms of Portable Oxygen Concentrator?

Pulse Dose: Settings deliver oxygen only when the patient inhales and stop when the patient exhales. This allows for less effort on your portable oxygen concentrator, thus reducing battery usage compared to the continuous flow mode. This pulse dose option is not available in home oxygen concentrators but is available in all portable O2 concentrators. Smaller POCs tend to be pulse dose-only.

I have seen one for £395 which produces 6L/min and weighs less than 2 Kg. The ones supplied by the NHS for use within the UK cost £2000-£3000 though so I wouldn't necessarily go for the cheap one if you wanted one for travelling abroad. I have an Inogen One G-5 which suits me fine at present. I bought mine from eBay, which is a good way of disposing of them should you need an upgrade (to one on wheels which you can use at home). These usually provide continuous O2 up to 15L/min or so but are heavy brutes.

Servicing is not cheap, assume £100+ for a full authorised service. Spare Lithium batteries are also expensive, but, if you go abroad, necessary. Think around £200-£300.

I hope that this is useful,

All best wishes, Barrie.

I have been using ambulatory oxygen since 2013 and I usually go on cruises. I use to order the oxygen cylinders and they would be delivered to the ship and I have it taken to my room when needed or just straight to my room (I had to pay for the cylinders). I then bought a Portable Oxygen Concentrator and a spare battery, one that you can take on an aircraft.

2018 I decided to go with my family to Jamaica and I had a fit to fly test done in the respiratory department so I would know how much oxygen I would need in flight. I was told I needed 2 LPM. Because it was a long haul flight the airline supplied the oxygen for flying. They had small cylinders and I just need to exchange empty for full there and back. The travel insurance was very expensive.

I am going on another cruise next month, it’s a cruise I should have been on in 2020. We are going to the Med and I have just bought insurance for the cruise as I don’t intend to travel outside the UK in the near future. I will also be taking a mobility scooter as the ship is very large and I have difficulty getting around.

I do hope this is useful siestasue. Why not get someone to help you with the arrangements or even go with you if you’re on your own.

Take care

God bless

Interesting. Will speak later, busy at miment

siestasue profile image
siestasue in reply to siestasue

Hi Maureen, sorry for delay in replying but I've been in hospital.I have always loved cruising but as far as I know they are not taking people on oxygen, but you seem to have managed it!! Also I dread to think how much insurance would be given a recent hospital admission

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