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Travel for me has always been special. From birth, it meant visiting my grandparents in England. These trips became second nature to me whether it was by air or water, or took five or fifteen hours door to door, packing a suitcase had a very special meaning.

As a PWCF, it also meant that I learnt early on to be aware of ordering my medications and making sure I had enough for a trip, or for unforeseen events like an unexpected train strike. Over the years I have travelled, all through the UK, mainland Europe, Eastern Europe, USA and had the trip of a lifetime to the Caribbean. With each destination, as long as I had the correct plug attachment and voltage for my nebuliser, back-up antibiotic and hospital letter confirming my medications, I was ready to go.

My next trip is more extreme than any trip I have taken before. I will aim to summit Kilimanjaro in July as part of a Guinness World Record Attempt in aid of CFI. Alongside me will be Siobhan Brady who hopes record by playing the harp for eighteen minutes at the top, while I recite a poem given to us by President Higgins. This level of endurance activity comes with the possibility of extreme weather conditions which means I have more organisation to do than ever before. So whether you are travelling to Kerry or Kilimanjaro this summer, read on for my top travel tips, along with handy resources, to make any trip a success.

Medication supply…

First question – have you enough medication for your trip? If you are taking a short hop, make sure you bring enough medication to last the time and even consider pre-ordering your next month’s supply before you leave. That way you are good to go when you come home and you won’t find yourself short a few day’s supply when you get back.

But what if you are going for a longer stint? If you are travelling for more than two months, it takes a bit more planning. Your CFTR meds are prescribed via the high-tech hub system and the prescription must be renewed every three months, while most other medications are every 6 months. Chat to your CF Team about practical ways to renew your CFTR medication prescription while you are away (if this applies to you), and once you’ve figured that out, consider how you will get the medication ordered, collected and shipped to you, whichever beach you are on or whichever mountain you are climbing!

Taking your meds with you?

I’d say bring your meds in your carry-on luggage. You don’t want your meds to be knocked about, lost or even frozen in the cargo of a plane. But just in case something does happen, bring copies of your prescription with you and a letter from your CF team detailing what medications you have to take. Not only is this helpful if you need meds while you are away, you might also need it going through security with a bag full of medication in your bag! You could also bring your CF medical ID card for this reason too (available free from CFI)…

For Kilimanjaro, I will be adapting my medications for the climb. I have discussed with my team the meds I definitely have to take on the mountain and which meds I can swap in and out, e.g. two of my nebules can be changed to inhalers shortening my time doing treatments, giving me more time to sleep. I will bring at least two back up antibiotics in case of an emergency.

Nebulisers

Don’t forget to check the voltage and plug requirements of the region you are going to and pay attention to your 220-240 volt box nebulisers. These don’t work on US 120 volt electricity supply, so make sure you arrange a travel nebuliser, source a nebuliser or maybe arrange a nebuliser rental depending on where you are going.

For Kilimanjaro, I will be changing my nebuliser to a battery-operated travel nebuliser which we are hoping will work best on the mountain. I was told batteries have a shorter life at altitude therefore having less medication to nebulise makes more sense as I don’t want to be carrying loads of batteries. I hear you saying “but batteries are light? Surely it wouldn’t be hard to carry!” But like feathers, a tonne is a tonne no matter what it is made up of and we are restricted with weight.

The 'cleaning your nebuliser' decision may be controversial to some, but believe me when I say, I had a long debating discussion with the best microbiologists, weighing up the pros and cons of water quality, even when boiled. We concluded that I do my treatments and seal my neb mask and chamber into a zippy for the period of time on the mountain. Please don’t freak out anyone :)

Hydration

And while we mention water - hydration is, as you know, so important. Don’t forget to pack electrolyte rehydration tables or sachets, such as Dioralyte. You can buy these over the counter in your local pharmacy. Drink plenty of water both on holiday and travelling through airports and on the plane. Air-con is not a friend to hydration.

As the trip in July is an endurance event, I have had to look into best hydration and eating/fuelling for me as a PWCF (I will need to eat and drink more). This wasn’t as daunting for me as you may think as I’ve practiced eating and drinking routines on the bike for M2M so I’m confident I’ll be able to replenish hydration/fuelling on Kilimanjaro. The trick is not to get to the stage of being hungry or thirsty. With CF you don’t always feel thirsty even when your body might crave water due to an impaired thirst response that comes with CF.

Vaccines and Insurance

This one is pretty simple. Make sure your travel vaccinations are up to date and correct for the country you are visiting. If you aren't sure, ask your GP or call the Tropical Medicines Bureau. For my trip, my travel vaccinations have all been arranged now so the last item to sort is travel insurance.

Travel insurance is extremely important for trips, (if you have private health insurance it is easier and cheaper to get travel insurance). I needed to get extra insurance to cover the climb of 6000m and to cover my CF “just in case”. I have also been in touch with an Irish lady who can help me navigate the hospital system in Tanzania and point me in the right direction if required. It’s better to have the information rather than looking for it in an emergency. Within the EU, EEA area or Switzerland you can also apply for your European Health Insurance card. It is free and offers the same access to public healthcare as the citizens of that country with free or minimal costs attached.

Do your homework

Don’t forget to research where you are going, the conditions there that might affect you, what the voltage or electrics of the destination are, any visa requirements you might need and maybe even where the nearest Irish embassy is. If you are going far, don’t forget to register your details on the citizen’s registration with the Department of Foreign Affairs who can help with unforeseen emergencies such as lost passports or family emergencies. And it’s also a good idea to find out where the nearest cystic fibrosis specialist care centre to you will be and keep their details with you, just in case.

CF Team

If in doubt, ask your team about anything – they are best placed to advise on your specific situation. The elephant in the room for me this time is ALTITUDE, I have no control over what will happen at altitude, I’ve discussed with many people and read articles and the bottom line is it seems to come down to luck and maybe Diamox (a diuretic). Everyone, including PWCF who I have spoken to who have attempted/ summitted Kilimanjaro have said it is one of the toughest but most amazing trips of their lives. As I said at the beginning, travel holds a special place in my heart, so I’m more than happy to give this a go knowing I’ve done everything I can to be as prepared as I can.

Have a lovely summer and enjoy the holliers!

Helpful Resources

Travel Tips – available from CF Ireland

Medical ID Card - contact CF Ireland

Request a list of CF Centres around the world

European Health Insurance Card

Irish Embassies around the world

Irish Immigration Service

Department of Foreign Affairs

Tropical Medical Bureau