Tips for travelling with Cystic Fibrosis.

When CF graced us with it’s presence there were lots of things we had to change in order to accommodate it; however, my love of travel was not something I was prepared to compromise on. Don’t get me wrong it’s not as straightforward as it was before CF came along, but it’s not been impossible.

Having travelled a fair bit with my boys, both abroad and also road tripping within the UK, I thought I would share some of the tips I have picked up along the way.  It really doesn’t have to be daunting.

1. The first and most important thing for me is insurance, mainly because CF can be so unpredictable. I suggest always getting a quote before booking! Last thing you need is to get your holiday booked and then get an extortionate quote for insurance that you can’t afford. Also worthy to note that sometimes an annual policy works out cheaper than single trip depending on your plan for the year.

2. Once you are booked you’ll need to kiss goodbye to travelling light. All meds and nebulisers should be carried as hand luggage. My cute hand luggage suitcase now resembles a pharmacy and I travel with that many bags I swear the entire Imelda Marcos shoe collection could fit in the bags we take.

Enough for two weeks! 

3. Make sure you know the area you are going to. I personally like to carry out a full military recce of the area I am travelling to, googling hospitals and local respiratory centres and I often find myself hunting through the patient comments like I’m reading a review on trip advisor.

4. It is also beneficial to know the place you are going to be staying at, whether it be a hotel or an apartment, a fridge is a must for those still on liquid Meds and kettle pretty important, well for us on advance formula, it’s also good to view any potential hazards such as jacuzzi’s or sandpits. A browse through trip advisor never does any harm to check cleanliness.

5. When travelling abroad with a nappy wearing little one, make room in your baggage for nappies, this will save you getting rinsed of cash in the local supermarket especially with the amount a CFer goes through! I remember once paying 23€ for a pack of nappies.

6. If flying make sure you have your fit to fly from your CF team with all the meds listed and always allow plenty of time at security. It can take a while because they often test all the meds. I have got used to the people behind in the queue impatiently tapping their feet while I take endless bottles of Meds out of the case.

7. Don’t be afraid to ask for assistance at the airport. I ask to be last on and first off the plane to limit the time Chester is confined in the plane, this is always great when your plane arrives at the arrivals terminal and the pilot tells everyone to remain seated to allow you to disembark; cue the looks of death.

8. Don’t forget different countries offer up different complications and risks and I would always speak to my CF team before choosing a holiday destination. Some countries have more risks than are worth taking when it comes to your child’s health, specific bacteria that can cause infection for example. The CF trust website provides details of places to avoid.

9. These things aside the most important thing about travelling is to have fun, take in the culture, relax and make memories and don’t let CF get in your way.


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