Top Tips for Travelling with Cystic Fibrosis

Travelling with cystic fibrosis requires thoughtful preparation and planning to ensure a safe and enjoyable experience. This guide aims to provide practical tips and advice for individuals with cystic fibrosis who wish to explore new destinations while effectively managing their condition.

From organising medication to maintaining a hygienic environment, these tips are designed to empower travellers to embark on their journeys with confidence and peace of mind, ensuring that the adventure remains both fulfilling and stress-free.

What is Cystic Fibrosis?

Cystic fibrosis is a genetic condition that primarily affects the lungs and digestive system. It is caused by a faulty gene that leads to the production of thick, sticky mucus, which can clog the airways and trap bacteria, leading to recurrent lung infections and breathing difficulties.

The condition also affects the pancreas by obstructing the release of digestive enzymes, which are essential for breaking down food and absorbing nutrients. Although there is currently no cure for cystic fibrosis, treatment options have significantly advanced, improving the quality of life and life expectancy for those affected.

My Top Travel Tips for Cystic Fibrosis Patients

Heading away on holiday with Cystic Fibrosis (CF) can be difficult, as managing the condition requires attention to medications, treatments, and overall health. However, with careful preparation and planning, you can still have a great holiday away, making wonderful memories to last a lifetime.

Here are my top tips to help you prepare for your holiday:

Research Destinations: 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.

Avoid Remote Locations: 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.

Proximity to CF Centres: 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.

Fit to Fly Test: 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.

READ MORE: Fit-to-Fly Certificates

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.

Medical Documentation: 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.

READ MORE: Travelling with Medications

Airline Assistance: Contact your airline in advance if you need assistance with transfers.

Medication Storage: 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.

Local Amenities: 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.

Nebuliser Treatment: 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.

Oxygen Arrangements: 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.

Antibiotics: 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.

Avoid Dehydration: 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.

Sun Safety: 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.

READ MORE: Sun Safety

Travel Insurance: 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.

READ MORE: Pre-Existing Condition Travel Insurance

With careful planning and preparation, travelling with cystic fibrosis can be a rewarding and enjoyable experience. By selecting suitable destinations, ensuring access to medical support, and adhering to your treatment regimen, you can manage your condition effectively while exploring the world.

Remember, the key to a successful trip lies in anticipating potential challenges and being proactive in addressing them. By partnering closely with your CF healthcare team and staying informed about your specific needs, you can embark on your journey with confidence and peace of mind.