Isolated, Oxygen User

[Jyoti_Smith_1]

Hi Guys,

My name is Jyoti i'm 28 with pulmonary fiborsis, which is now terminal and i require ambulatory oxygen (oxygen user 2015.

After my double lung transplant rejection i decided that i wanted to travel, however i am aware that some places don't like portable oxygen cyclinders, as i have progressed from using a inogen one to a cyclinders it does scare me a little, i love history and arts, and i love to travel yet im scared to and don't no where to start... i don't have many friends so I'm a loner at heart. So what can i do by myself?

Any advice or suggestions will be greatfully appreciated.

[stone-UK]

Hi

If in the U.K. any were you can go, your oxygen can go with you.

Just be aware of any naked flames, candles etc

If using public transport confirm with various companies if any special precautions are required.

If you have a local breath easy group they may do outings.

I have seen lots of people using taxis and buses using oxygen.

Further information

verywell.com/traveling-with...

[Jyoti_Smith_1 in reply to stone-UK]

Thank you 😊

[sassy59]

Hi Jyoti, just want to say welcome to you and hope you find a safe way to travel around. You’re one great lady. Take care and good luck to you. Xxxxx

[Jyoti_Smith_1 in reply to sassy59]

Thank you that means alot ♡, You are great too x

[Hidden]

Try a cruise maybe Spain rome Naples xx

[Caspiana]

Hello Jyoti_Smith_1 .

Welcome to the forum. I can't really make any good suggestions as I am in a similar position but I wanted to give you a big *HUG*.

I hope you get some helpful information.

Cas xx 🌹

[casper99]

Hi Jyoti. I'm so sorry to hear of your prognosis at such a young age.

I can't suggest anything to keep you occupied but, just wanted to welcome you aboard. xx

[Jyoti_Smith_1 in reply to casper99]

Thank you Casper99 ☺ x

[Fionab67]

Hi Jyoti! Had you thought about a coach trip? That might be the answer as it might be a little easier to travel with oxygen. I wish you all the very best o your travels and it would be great if you could keep up updated! X

[Jyoti_Smith_1 in reply to Fionab67]

I have, but i read somewhere some companies are bit iffy when it comes to oxygen cyclinders 😣

[Fionab67 in reply to Jyoti_Smith_1]

It's so awful that we are penalised for an illness that we can't help!

[Fennella02]

Hi Jyoti

I have recently been dealing with a company who organise holidays for people with disabilities of any kind. They are happy to tailor make the trips (UK and abroad) and we are now all on first name terms! I can PM you the name of the company if you'd like.

I admire you for travelling - I'm such a nervous sole traveller. Take care, Clare x

[Jyoti_Smith_1 in reply to Fennella02]

That would be great thanks 😊

[karenjenna1146 in reply to Fennella02]

Hi Clareb, could you please give me contact information for the company you have been dealing with for trips in UK and abroad? This will be the first trip I have taken abroad since being on oxygen (I have pulmonary fibrosis and have been turned down for a lung transplant due to esophageal problems). Thanks for your help, regards Karen B

[Fennella02 in reply to karenjenna1146]

You need to make sure that they are fully aware of al, your needs or they will interpret your silence as not needing to make adjustments.

(edited by moderator)

[karenjenna1146 in reply to Fennella02]

Hi Clareb, thanks for the information. I will get in touch with them. Regards

KarenB

[Kelda]

Hi jyoti,

I also am on oxygen, but 24/7 and love to travel, but find it hard. I am in my 40s now and have emphesema and bronchiectasis. However most oxygen companies will provide canisters at your destination if you let them know in advance in the UK and I have heard that they can be provide abroad, although I have not been brave enough to try yet. ( hopefully next year) I completely understand your frustration, I hate having to carry oxygen wherever I go, always wondering if I have enough and worrying that I will run out. It takes a lot of planning to go anywhere, but it can be done! I even managed to go camping for a few days in the summer.

I too feel isolated as my husband died just over a year ago and most of my friends and family do not live near me. However I joined my local breathe easy group and have found a lot of caring people who have similar conditions and know what it's like coping with COPD.

A cruise sounds like a good idea, although expensive, it's something I would like to try.

All I can say is be brave and plan well. This is a great site to get advise and support. Good lucand warm wishes. I hope you get to travel soon.

[Jyoti_Smith_1 in reply to Kelda]

Thank you ♡

Cruise does sound like a great idea, I've enquired at some hotels about having portable oxygen. Just waiting on emails back

[Kelda in reply to Jyoti_Smith_1]

That sounds positive jyoti . Good luck with it all. I hope you get to go somewhere nice, have a great time And meet some nice people. X

[sunnyday22]

I am sorry that your body has rejected the transplant. I am on the waiting list and looking for information all the time. How long ago did you have your transplant. If you can drive have you through of hiring a camper van to get you around and book the oxygen. You could always advertise for someone to go with you. I have not been a Cruise but I have been told that people who have lung condition are well looked after on them.

[Jyoti_Smith_1 in reply to sunnyday22]

Hey i was refused the transplant due to esophogusal dialation. And wont be offered one again, i hope you get your lungs soon much love ♡

[Carnival567]

Cruises are great. The staff are really helpful and kind. I haven't travelled with oxygen yet but I have with a scooter. The company I went with always saved front seats on the coach for outings. Cruises seem expensive but when you realise that it is all-in they're good value. Trips are quite expensive. Given you are so young a family orientated one would probably be a better choice as the average age on the one we went on seemed to be about 90! We were quite youngsters! Good luck with your courageous travel plans xx