Travelling the world with Cystic Fibrosis – Tips!

It’s less than a week untilI take off on my 3 month world wide trip! I’m nervous and excited and I can’t believe it’s come around so quickly! (How are we nearly 2 whole months into 2017 already?)

When I first shared the idea of travelling with my CF team, they were so excited for me and really encouraging. They were so eager for me to do it because it really is an amazing thing. Then I told other people my age who have CF and they were amazed. They had questions – how was I going to travel to the other side of the world for 3 months with that much medication and how would I manage being that far away from my local CF centre? At first, I was a little worried about these things too, but with a lot of organisation it has all become possible!

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Last year, I spoke to Trunki creator Rob Law for my dissertation project and he told me all about the places he’s travelled and worked – including New York, Taiwan and Australia. He’s a great example of how CF doesn’t need to hold you back. Travelling the world is possible – Rob did it, I’m doing it, and anyone else with CF can do it too, so here’s some advice on how you can make it happen:

Check your health

I’m so against the idea of letting this condition stop anyone from doing anything, but you do have to be realistic. If you’re health is in a bad place right now, perhaps it’s not the right time to travel the world. Luckily, my health has been stable and I haven’t needed any hospital stays for around 5 years. I’ve been to university in this time, where I was living away from home and about 50 miles away any CF team. I also stretched out the time between clinic appointments so I didn’t have to travel home all the time and it worked out okay, so I know I can go a couple of months without seeing the CF team.

If these situations were different, travelling for 3 months to the other side of the world wouldn’t be as much of a good idea. But right now, I’m healthy and stable so I’m taking my opportunity while I can! I don’t want to miss my chance to see the world!

If your health isn’t too good right now but you do want to go travelling, do what you can to get better and then take the trip when it’s a better time.  If you’re pretty stable or perhaps the healthiest you’ve ever been, then there isn’t a better time. Start a conversation with your CF Team and work out the logistics from there – they’ll support you all the way!

Medication

Taking 8-10 different medications abroad is slightly daunting, especially when it needs to be a 3 month supply… Thankfully, my CF team has allowed me to leave a couple at home. Be sensible and only do this if your CF team agree! The ones I’ve missing include a nebuliser that I don’t take as often as I should in the first place! Make sure you order your prescription enough in advance so you have enough time to count them out and organise them to take up as little space as possible! Have a conversation about any extra ones that you might need too – depending on the climates you’re heading to. It’s a good idea to take an pack of extra antibiotics with you too, just incase you start to feel unwell during your trip.

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Insurance

It’s important that you tell your travel insurance provider that you have CF, because if you haven’t declared it and something happens then they can refuse to cover the costs. I’ll admit that I haven’t always declared it – when I’ve gone on week long holidays in Europe I’ve left it off because I know I’ll be able to head home early or just wait until the end of the week to get treatment. But a lot can change in 3 months so it was essential that I declare CF for this trip. When searching price comparison websites I was either being quoted over £2000, or I wasn’t finding a company that would insure me at all. During my search I spoke to people with a variety of conditions, who suggested a couple of companies that cater specifically for people with long term health conditions. In the end I used insurancewith.com, where I got 3 months cover at a much more reasonable price! Other recommended companies were avantitravelinsurance.co.uk/pre-existing-medical-conditions-travel-insurance and miatravelinsurance.co.uk.

While away

If you think you might need treatment or a check-up when you’re away, have a conversation with your CF team about getting care at CF centre abroad. If you’re travelling through big cities with large hospitals, there might be an opportunity to get checked out and prescribed any extra medications if you feel unwell.

Keeping your CF team up to date with plans is important. Make sure you can contact them while you are away, just in case anything happens or you feel like you need advice. They’ll also tell you what activities you should stay way from – for example, I asked about the typical, extreme Australian activities like sky-diving, bungee jumping and scuba diving at Great Barrier Reef. We haven’t planned to do these things but in case they came up, I wanted to be informed. The only one I could  realistically do is bungee jumping – deep diving and jumping out of a plane might have too much of a negative effect on my lungs!

So there’s my advice. Travelling IS possible. I’ve always wanted to go to Australia, now I’m actually doing it and seeing Thailand and New Zealand and a bunch of places in between too – don’t let CF stop you from doing what you want to do! As for heaving around a huge and heavy rucksack… I’ll let you know how that goes! Stay tuned – I’ll be keeping my blog up to date with travel stories as I go!

// Beth

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