Travelling with lupus and oxygen!!!

[dawnbeaven]

I have lupus non active emphysema on oxygen 24/7 and Cpap at night and also sticky blood as well as other illnesses has anyone been on holiday with all these illnesses especially the oxygen. Just wondered it’s on my bucket list!

[AgedCrone]

Hi dawnbeaven...........If you intend to fly you would have to speak to the airline you travel with, some airlines do allow therapeutic oxygen cylinders on board, but they have to be of an approved type,& be authorised before travel. You can't just turn up with any old oxygen cylinder!

Airlines do carry small cylinders of oxygen for emergencies......but these are usually only available as a short term measure.....not for 100% of the flight.

I would think you would also need on arrival to stay where suitable medical help would be readily available....not out in the boondocks miles from medical aid.

Unless you were thinking of long haul travel, why not investigate taking a ferry, then onward by car or train?

Don't forget travel insurance too. You will need to contact one of the specialist insurers who cover your situation.

It might take a bit of planning, but I'm sure if you are determined it would be possible...but if we are going to get summers like this one...why not explore parts in the UK you haven't been to ?

Happy travelling!!

[Paul_Howard Partner LUPUS UK]

Hi dawnbeaven ,

If you haven't seen it previously, our blog article about going on holiday with lupus may be helpful because it has a lot of information and advice. It doesn't specifically discuss travelling with oxygen, but a lot of what it says may be useful. lupusuk.org.uk/going-on-hol...

[PasSukiClarke]

Hi there Dawn.

In 2016 I travelled to Sunny Barbados with all but One of my SLE medications because my carer inadvertently left it on my bed. Due to that omission, I spent the entire holiday, sick and breathless in bed. Even lost consciousness. I would advise careful planning and medical advice before embarking on any trips away from home. Good luck and enjoy your holiday. Sukie

[Maureenpearl]

Hi dawnbeaven,

I went to Jamaica at the beginning of May with oxygen. My diagnosis is Mixed Connective Tissue Disorder which has damaged my lungs (Pulmonary Fibrosis). I also have lots of other add ons.

I first had an appointment at my Respiratory Centre for the fit to fly test. The test showed I needed 2 litres per minute of oxygen during the flight. I then went to my local travel agent to book the holiday to Jamaica. The travel did all the phoning for me. They rang the airline to see if they would have me on the flight (it was TUI and they can have two people needing oxygen). I did not have to pay for the oxygen as some airlines do charge.

I had already had my own oxygen concentrator which I bought to use when I go on cruises (usually from Southampton). You cannot take the one or any oxygen cylinders that the NHS supply. If you are going to buy a concentrator make sure it will give you the amount of oxygen that you will need and buy a spare battery.

I think if it's a short flight or you are going on a American airline you will have to supply your own ie a concentrator.

You have to have the fit to fly certificate dated about thirty days before your flight so I had to have two test done, the first to show me how much oxygen I would need and the second to show the airline if asked. My Gp also supplied me with a letter with all the medication i was currently taking because I was going to put my medication in my hand luggage.

Please also remember that the insurance could be higher than the cost of the holiday.

Hope this is helpful and I pray you will be able to go and have a great holiday.

Blessings

[dawnbeaven]

Maureen thanks ever so much for your reply I do t even go to my mums who is 90 miles away but was interested to know if anyone had travelled I have seven illnesses including emphysema am also on 2litres I’m hoping to get a lung transplant as I’m only a young 57 !! Thanks for your answer though I was in a coma for a month two years ago it would be finding someone to go with me lol! Best regards and thanks dawn

[Maureenpearl]

You're welcome Dawn.

You could go to your mom and have the oxygen deliver to her address, you just need to give the oxygen provider about two weeks notice.

I am so happy for you that you will be having a lung transplant. I did enquire a few years ago if I would be suitable because of the lupus and was told yes but I didn't or wasn't ready to go with it. Now I'm told that because of the acid reflux that occurs a lot I wouldn't be considered now (some of the acid does go down to my lungs).

I will pray that you are successful in getting the lung transplant and you will also get to go on holiday.

Remain blessed.

God bless

Maureen x