CF and holidays: "We might take a break… but CF doesn’t!"

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School’s out for summer! Lian, mum to Henry, 9, who has cystic fibrosis (CF), shares her experience of planning for a family holiday when your child has CF. We also hear from others in the CF community about their top travel tips. 

Lian, Henry and Emma on holidayPassports? Check! Suncream? Check! Boarding passes? Check! Creon? Check! Dnase and nebulizer? Check (hand luggage or check in?!) Extra-costly holiday insurance? Check! The pre-holiday checks for anyone heading abroad are always fraught with the worry that you’ve probably forgotten something, but travelling with cystic fibrosis (CF) means there are additional things to take into consideration. 

Before even booking our most recent trip abroad, I looked at things like the weather – not to check whether I’d be able to top up my (non-existent) tan, but whether it might be too hot for my 9-year-old son Henry who has CF (would we need salt tablets?). 

Once I had decided on Kos as our destination of choice, next on my to-do list was finding suitable travel insurance to cover Henry’s condition; he’s relatively well at the moment, but as anyone living with CF knows, that’s always subject to change, so I like to get this done as soon as possible. I’ve tended to use the same insurer before, but post-Covid the prices have risen quite a lot, so I shopped around quite a bit this year. 

Next up was packing, not just the usual swimwear, shorts and t-shirts etc, but meds; making sure that I ordered in advance, so the pharmacy had time to get them (not an easy task with the current Creon situation) and that I remembered to get the Dnase from the fridge just before leaving the house at 2am (handy phone reminder needed here!). 

“It’s like an unwanted but ever-present guest - we might not pay for the extra passenger, but it tags along anyway!”

Lian

With physio administered in the car on the way to the airport, our journey was much like anyone else’s (except for that little niggle in my mind every time I heard someone cough on the plane and remembered how one of us always ends up not quite 100% after being in a confined space with so many other people). 

It was nice to have time away from work, school, and all the running around for extra-curricular activities my two children love to do, but just because we’re on holiday, doesn’t mean CF is: mornings still began with physio and a handful of medication; meal times still meant attempting to calculate the fat content of food Henry doesn’t usually eat and we’re unsure of the amount of oil etc used; and evening entertainment didn’t start for us until a second round of physio and evenings meds had been done.

On top of the usual CF routine, I felt like I was constantly asking Henry (a child with CF who doesn’t take a break from football training even in 26+ degree heat) to have a drink or some salty crisps to prevent him from dehydrating. 

Going on holiday with a child with CF can be a stressful experience, but we try to approach it like we approach everything with CF: we give it the time it needs and no more. It’s like an unwanted but ever-present guest - we might not pay for the extra passenger, but it tags along anyway! 

More travel tips from the CF community

  • Keep all meds in one medical bag - and put liquids in clear bags before you leave, so you don’t have to rummage through to sort them again. 
  • Try and fly around CF routine times if possible. 
  • Take a cool bag or ice gel pack to keep Creon cool on days out. 
  • I found it difficult to find snacks for my daughter when she takes Kaftrio, so before your holiday I'd recommend finding some suitable dry snacks to take and enough for the duration of the holiday. 
  • Ice in a bowl in front of a fan at night is like a mini air conditioner.
  • Feet in a bowl of cool water (not ice cold) feels so good and helps to reduce your body temperature. Add a few sprigs of mint, slices of lemon and some Himalayan pink salts and you have a mocktail treat for your feet! 
  • Talk to your CF team to check if a 'fit to fly' test is required
  • Inform the airline of your CF so they can help with any extra requirements you might need. 
  • Pack an extra couple of days worth of meds in case of delay.
  • If flying, ask for meds to go in a fridge (if necessary). 
  • Stay hydrated and walk around if you can. 
  • Remember suncream! Certain antibiotics can make you very sensitive to the sun.  
  • Plan your days so that you can have some rest. 

People with cystic fibrosis (CF) have to do hours of treatments every day, just to stay well.

Taking up to 150 tablets a day. Following special high-calorie diets. Daily exercise and respiratory physio. Plus regular clinic appointments, and weeks in hospital to fight infections. All this day in, day out, because if you don’t, your health could seriously suffer.

People with CF never get a day off.

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