Top tips for travelling with cystic fibrosis

If you or your child has cystic fibrosis, the chances are that you or they will be taking several different medicines. That on its own can make travelling a challenge – but with a little advanced planning, it’s definitely possible.

My Top Tips

• Do some research into the best destinations for you before you book. For instance, you may be more prone to dehydration in hot countries than other people. And high-altitude holidays may not be appropriate, because of low oxygen levels.
  
  
• Think carefully before you book a holiday in a remote location, and certainly don’t book a holiday which could leave you in the position of not being able to access urgent medical help.
  
  
• It’s worth considering destinations which are within striking distance of a CF centre – your CF clinic can provide you with a list of centres worldwide.
  
  
• Check with your CF team before you go whether you need a ‘fit to fly’ test. This will confirm whether you’ll need oxygen on the flight, where oxygen concentration and air pressure are reduced. Your CF team can do this test for you if you need it.
  
  
• Ask your team for a new fit to fly test even if you’ve needed one before. This is because your blood oxygen levels can change over time, so you need one before each flight.
  
  
• Ask your CF clinic well in advance for a letter detailing your medications, equipment and conditions. Keep this with you all the time you’re travelling, in case of issues with security etc.
  
  
• Contact your airline in advance if you need assistance with transfers.
  
  
• If you have medication which needs to be kept refrigerated, take a cool bag or vacuum flask. Contact your hotel before you arrive to make sure they can provide safe access to refrigeration, ideally in your hotel room. Remember that enzymes are unstable in heat.

• Look up details of local amenities, such as leisure or theme parks, before you go. Many will have facilities in place for people with conditions which affect mobility. They will usually have a first aid room, and if you need a physiotherapy session during your visit, they can often make this available to you with enough notice.
  
  
• You’ll need to continue with your nebuliser treatment while you’re away. Portable nebulisers are more convenient. Don’t forget that different countries use different voltage settings. Your CF clinic can often lend you a portable nebuliser or one with the right pump voltage. The same applies to oxygen concentrators in terms of voltages.
  
  
• If you’re going to need oxygen on the flight, check with your airline before you book whether they will provide it. Some airlines provide this free, while others charge for it. Some airlines let you take your own oxygen equipment on board, while others insist you use theirs. This service can be costly, so it’s worth shopping around.
  
  
• You may be able to arrange an oxygen concentrator at your destination, to use during your holiday. Your CF clinic can advise – note that there may be a charge for this.
  
  
• If you need regular courses of antibiotics for chest infections, your CF clinic may be able to provide them for you. If you do need them, do seek medical help while you’re away if you don’t feel better within 2-3 days and do inform your clinic when you get back so they can review you.
  
  
• It’s essential to avoid dehydration if you have CF, so take precautions while you’re away:
  • Avoid too much alcohol or caffeine.
  • Keep your non-alcoholic fluid intake up, especially in hot weather – but remember that you’ll need to replace your salts as well.
  • Speak to your CF clinic before you go about getting a supply of rehydration powder or salt tablets.
  • Seek medical help if you develop a tummy bug and your symptoms are severe or don’t clear within a day or two.
    
    
• The sun can carry extra risks if you have CF. Along with the risk of dehydration, you may be taking antibiotics which can make your skin extra sensitive to the sun. If this is the case (your CF clinic or pharmacist can advise), you’ll need to cover up with long-sleeved clothes and a hat, wear Factor 50 sunblock and avoid direct sunlight.
  
  
• Always make sure you have comprehensive travel insurance from a specialist provider, to make sure you’re covered for every eventuality. This is essential even if you’re travelling in Europe.