CF Journey

CF Treatments

Albuterol(Ventolin)-2-4 puffs as needed
Aquadeck Vitamin-1 per day
Azithromycin-500mg-1 tab mon,wed,fri
Creon Enzymes-24,000 UNT-5 caps w/meals, 3 caps w/snacks
Hypertonic Saline-6%-twice per day
Nexium-40mg-2 per day

Somac-  -1 per day
Pulmozyme-2.5 mg-twice per day
Symbicort-160/4.5 mcg-2 puffs twice per day

Iron-  – 1 per day

Calcium-  – 1 per day

Vitamin D – 1 per day

Magnesium- 2 per day

 

Inhaled antibiotics: Tobi twice a day

Airway Clearance:
Pep nebuliser with Hypertonic 6%

Manual Chest PT-20 min session-1times per day

 

Travel Tips and CF

So, you have decided to go out into the world and discover yourself, it’s a wonderful plan with the potential for adventure and new experiences. Travelling broadens your view of the world and the people in it, it allows you to try new things and to push you boundaries. It can be an amazing adventure or hard work if you become unwell or need hospitalisation in another country; the key is all in the planning, a bit like life really!

Planning

  • Research your destination(s) early, including its climate, air quality, visa requirements and other documents required.
  • Travel when you are well; consider a tune-up before you leave.
  • Talk to your CF team, preferably before you book, they can be a good source of information regarding your individual circumstances.
  • If you are travelling between time-zones factor in rest time, you may also need to make adjustments to your medication and physio schedule.
  • Consider a stop over. When I have traveled to Europe I always plan a stop over in Singapore or Dubai, this allows me to get rest, eat a meal perhaps even take in some of the local sights- I can also fit in some physio and exercise!
  • Consider your tolerance for heat, physical activity and foreign foods before you finalise your trip.
  • Are you OK to travel alone or do you need to travel with a friend.
  • Visit a travel clinic and get all the necessary vaccinations before you go. If you have had a transplant, you should not receive live vaccines; talk to your treating team to discuss alternatives.
  • Make sure you have a clear plan for your health care if you become unwell.
  • Smart Traveller is a government website with general advice on travelling abroad. https://smartraveller.gov.au/

Insurance

There are many things you will need to think about when obtaining travel insurance. Basic travel insurance is not a problem, however you will also need cover for “a pre-existing medical condition” so that you are covered for CF treatment whilst you are away should you need it.

The Cystic Fibrosis NSW site offers some great advice on obtaining travel insurance, link: http://www.cysticfibrosis.org.au/nsw/travelling

Medication

  • Talk to your team about your medications, are they the best fit for your trip, oral VS nebulizer, salt tablets for hot destinations etc.
  • Take a copy of your prescriptions, a letter from your CF clinic explaining your diagnosis, medicine list and equipment including compressors, drawing up needles, insulin etc.
  • A “fit to fly” letter from your doctor should you require oxygen on the flight.
  • Your CF clinic’s contact information.
  • Separate your medication so that you have some in your carry on luggage and some in your case, that way if your luggage gets lost you still have a reserve until your luggage turns up.
  • Consider access to refrigeration for your medications when you are booking your accommodation and travelling between destinations.
  • Bear in mind also that Creon enzymes need to be refrigerated if you are going to a hot climate, as the enzymes lose their potency above 25 degrees.
  • Don’t forget to organize a cool pack for medication that needs to be kept at a low temperature on flight. i.e DNase and Tobi,
  • Take spare medication just in case of illness or loss.
  • I take a small bowl to clean my nebulisers and use boiled water.

Air Travel

Flying is not ideal for someone with a lung condition, as the dry air in the cabin can really dry out the delicate lungs and sinuses. Oxygen is also in short supply in a pressurised cabin (in a commercial airliner the oxygen concentration is approximately 15% at 8,000 feet compared to 21% on the ground. This can reduce the blood oxygen saturation by 5% even in a healthy person.

  • Lower oxygen may be a problem for people with decreased lung function. Consider asking your doctor about an altitude test before you book your flight and destinations.
  • If you are affected you may have to take oxygen with you on the flight. It is best to contact the airline prior to booking your flight as each airline has its own policy regarding oxygen supply.
  • CFV hire portable oxygen compressors & travel pumps for short-term loans. Please contact Support Services for more detail.
  • The CASA website also has good information on item that maybe restricted on flight, i.e. scissors, liquids etc. Civil Aviation Safety Authority (CASA) casa.gov.au

On the Plane

Airplanes are dry, sometime cold and always germy; think a small long metal tube, 450 passengers, recycled air, 12 toilets and bad food for 15+hours.

  • I always carry a light jacket (polar fleece) or pashmina, tissues, hand sanitizer, moisturiser, cough lollies and face wipes.
  • Take all travel documents including you medical documents in your carry on luggage, as you will need these at customs.
  • Drink plenty of water (most Airlines supply free bottled water), remember alcohol can dehydrate you fast, so I treat myself to one glass of champagne only and then its water and fruit juice, that way I arrive feeling refreshed and well.
  • Take your enzymes- stomach issues at 40,000 feet is not an experience you want on your holiday (nor do the other passengers!!!).
  • Try to get up and walk around the cabin every hour, this is good advise for anyone travelling as it can help to prevent a DVT-deep vein thrombosis. A DVT is a blood clot that can form in the legs when they are inactive, with the danger that it can break off and travel to the lungs.

CF Clinics Overseas

Accessing good CF health care while overseas can be difficult and costly hence the need for medical insurance.

  • Remember to contact your CF team if you become unwell overseas.
  • Ask your CF team for recommendations of CF clinics in the areas you will be visiting in case you need medical attention. Keep in mind some countries do not have CF centre’s. An international CF clinic list is available on-line through CF Worldwide at cfww.org
  • In countries such as Indonesia that does not have a CF centre and has limited provision of health care locally, International hospitals are a better choice as they deliver an international standard of care for residents and tourists. Generally you will need to provide your health insurance details on arrival or pay up front for any treatments you receive. Their understanding of CF may be limited so make sure you communicate clearly with the medical staff and be clear about you needs and concerns.
  • The UK and some European countries have a reciprocal health agreement with Australia but your entitlements may vary according to the length of stay and the country you are in.

 Physio & Exercise

  • Talk to your treating team about your plans for physio and exercise while you are away. You may need to adjust your routine according to your individual needs.
  • When travelling I always include outdoor activities in my holiday as this takes care of some of my exercise requirements while I am away.
  • Consider your nebuliser requirements; spare batteries, mains adapters for the countries you are visiting etc.
  • Check the voltage of your equipment is it ok for the countries you are travelling to?

While you are away

Being on an overseas holiday is a very exciting time, there is so much to see and do and it can be easy to forget the simple things. Medication, physio, hydration and nutrition can easily slip when life takes over but without these basic elements you may become unwell so try to find a routine among the “busyness” of travel that works for you.

  • Stay compliant with your treatments this will allow you to stay away longer and really enjoy your trip.
  • Drink plenty of fluid, using bottled water particularly in third world countries. I aim to drink at least 2 litres of fluid a day!
  • Sun Screen; remember some medications can make you more sensitive to the sun. i.e. Cipro
  • Stock up on snacks and drinks at the local supermarkets they are much cheaper than the tourist spots.
  • Practice good hygiene, hand washing etc to keep the bugs at bay!
  • Rest: try to work in low key days in-between your activities, parks and galleries are great places for contemplation at a slower pace, they can also provide a window into the local community and history of your destination, not to mention exposure to amazing art!

Bon Voyage and Enjoy!

References and further resources:

http://travelsecure.infrastructure.gov.au/
http://www.cysticfibrosis.org.uk/about-cf/living-with-cystic-fibrosis/travel
https://www.cff.org/Living-with-CF/Traveling-with-CF/
http://www.cysticfibrosis.ca
http://www.cysticfibrosis.org.au/nsw/travelling
https://www.ecfs.eu/files/webfm/webfiles/File/documents/JCF%20Articles/JCF_619.pdf
https://smartraveller.gov.au/

*This article contains general information about CF as well as personal insights; please consult your treating CF team for information specific to you.