Travel Tips for Cystic Fibrosis
JUNE 28, 2022
Travelling with a rare disease can add a level of complexity to your plans, we’ve compiled the information below to help ensure your travel is as seamless as possible.
Start preparing before you book your vacation, even if you are waiting for last-minute deals. Research your destination(s) and get the documentation you will need to avoid surprises and delays. If you are travelling from one time zone to another, allow time to adjust. You may have to make changes to your medication schedule (especially if the medication is to be taken at a specific time).
Notify your CF clinic if you plan to travel abroad.
Consider your tolerance for heat, physical activity and foreign foods before finalizing your plans, and do not travel alone unless you are sure you can cope if you become ill. While on your trip, follow infection prevention and control procedures to minimize your risk of becoming ill. You are more likely to get sick if you are overtired, so recognize your limits. Keeping up with your treatment routine will help you maintain your health and enjoy your vacation to the fullest extent. Talk to your CF clinic team to determine treatment options such as replacing nebulized antibiotics with oral ones, adjusting your physiotherapy and exercise regimes to your travel schedule, and how to pack efficiently for smaller spaces such as airplane seats or hotel rooms.
Health and travel documents
Health-related and/or travel documents may be required by your medical insurance company. As well, these documents may help to avoid hassles when crossing borders and assist healthcare professionals if care is required while travelling. Some you can create and others your CF clinic needs to complete. Health-related documents include:
◆ A list of your medications (trade and generic names) and a description of why you need each one
◆ Your prescriptions (originals or printed from your pharmacy) in case you need to get medications
◆ A letter from your CF clinic director explaining your diagnosis, medicine and equipment especially if travelling with a compressor, insulin, or EpiPen needles
◆ A “fitness to fly” letter if travelling by airplane (see the “Travelling by Airplane” section)
◆ A simple summary of your CF care from your clinic outlining your status, usual antibiotic combinations for an exacerbation and anything else that may be required to provide treatment
◆ Your CF clinic’s contact information
Make photocopies of these documents so you can give a copy to any official who requests them. Keep the originals on your person or in a safe place at all times (hotels often have a safe or lock box in guest rooms).
Check visa requirements for the country/countries that you are visiting well in advance to be sure you obtain the necessary travel documents. Canadians need a passport to travel to other countries, including the U.S. Most countries require that visitors’ passports have an expiry date that is AT LEAST six months from the time that they enter the country — so be sure your passport is up-to-date well in advance of your trip.
Invest in general trip insurance, refundable or flexible tickets and medical travel insurance. These precautions lessen the financial cost of last minute changes. If you become ill on your vacation, medical insurance will help cover the cost of your treatment and if necessary, can help you return home for treatment. It can be difficult to obtain travel insurance as an individual with cystic fibrosis (or any chronic illness). Clinic staff can recommend travel plans of benefit to CF patients appropriate for their travel plans.
Consider joining the Canadian MedicAlert Foundation at www.medicalert.ca. Medical professionals and emergency responders are trained to look for MedicAlert bracelets and pendants. The emergency hotline can be called from anywhere in the world to learn immediately about what treatments you require, allergies, transplants or other medical implants and any other pertinent health information. To reduce your chances of getting sick, be sure to get all of the necessary vaccinations before you go. If you have had a transplant, you should not receive live vaccines; talk to your transplant centre to discuss alternatives. If you have liver or kidney disease or have had a transplant, consult your doctor or pharmacist before taking any anti-malarial drugs as they may interfere with your current medications.
Travelling with medical devices and medications
If you need a compressor while on vacation, take your own, or rent a portable one from your CF clinic if electricity is unavailable or unreliable. If the clinic does not have a portable compressor available, clinic staff will help you locate one. If you are travelling outside of North America, find out about the electricity voltage and frequency, and type of plugs. You will likely require plug adapters and/or voltage converters to avoid damaging your electrical equipment and to use it safely. A surge protector is a good idea if you are travelling to an area with unreliable power quality. Voltage adapters and other electrical equipment can be purchased at most electronics stores.
Use an insulated bag to transport temperature-sensitive medications and check if you have access to a refrigerator to store them at your destination. If not, ask if you can place your medication (in a well-marked package) in a common area refrigerator. Medications should be clearly labeled and in the original bottles. All countries have regulations about what medicines can be brought in, so check into each country’s regulations before you leave and consult with your physician accordingly. In addition, some countries may not stock supplies of your medications; and if there are delays in your travel or if your medications get lost or stolen, you could be in a difficult situation. Pack an extra week’s supply of all medications and keep it separate from your other medications. You may also consider asking your physician to prepare a stand-by supply of oral antibiotics before you leave in case of infection. Be sure to get clear instructions on when and how to use them. If you are not travelling by airplane, dividing your medications between bags can minimize the risk of loss or theft of your medication. Putting items in resealable plastic bags keeps them organized, waterproof, and easy to locate!
Medicines and medical devices need special consideration on flights, especially if flying overseas. Notify the airline ahead of time of all medication, needles and devices you are bringing. If you bring injection devices such as insulin or EpiPens, you must have a note from your doctor and you may also be required to bring your own needle disposal unit. Keep all medicines and equipment in your carry-on baggage in case you need them on your flight or in case your checked luggage gets lost. Temperature-sensitive medications can freeze in the baggage hold. Call the airline ahead of time to discuss storage solutions as you may be allowed to bring an extra (or larger) carry-on bag to accommodate your needs. Another solution may be “at the gate baggage stow”, which is generally for medical items that must be used until boarding. The airline will tell you if any of your medical supplies may be boarded in this manner, so be sure to check ahead of time.
The air in airplanes is always dry and can cause discomfort. Use a saline nasal spray for temporary relief and drink extra water to help prevent dehydration. If you are worried about airborne illnesses in airplanes or air pollution at your destination, wearing a facial mask can reduce your risk. Medical-grade masks are available from most pharmacies or ask your CF clinic.
Due to ever-changing security concerns, carry-on baggage is carefully monitored. Different countries have different rules about luggage restrictions and carry-on items, so check restrictions in countries you are travelling to and from, and airlines you are travelling with.
Oxygen levels in airplanes are lower than oxygen levels on land. This may pose a problem if you have low lung function. Your doctor can give you a flight assessment to determine whether it is safe for you to fly without extra oxygen. Request a “fitness to fly” letter from your physician, stating that you have cystic fibrosis, whether you need oxygen, and that you are well enough to fly. Check ahead with your airline; some airlines require that your physician fill out a specific form.
If you need oxygen on your flight or at your destination, make arrangements for oxygen rental before you book your vacation. Your oxygen company should be able to help you arrange oxygen rental in most foreign countries. Some airlines allow you to bring your own oxygen with appropriate documentation while others require that you use their oxygen (fees may apply). Most airlines require that you let them know about these needs well in advance.
Getting medical treatment while on vacation
Find out if there are CF clinics or hospitals in the areas you will visit in case you need to seek medical attention. Some places may be off-limits because they lack adequate healthcare resources. An international CF clinic list is available online through CF Worldwide at www.cfww.org. If you are unwell on vacation, contact your CF clinic, your medical insurance company or a local hospital. If you need immediate medical attention, hotel staff can usually direct you to the closest healthcare facility and arrange transportation for you.
When you see a physician in another country, take your CF clinic’s emergency and general contact numbers, your passport, insurance documents, your “fitness to fly” letter and any other information you have about your medications and treatments. If you pay for anything, always obtain a signed receipt. If you are unwell upon your return home, be sure to contact your CF clinic (or family physician) as soon as possible so that you can be checked for illnesses.
Food and water
Practice good hygiene to avoid infection. Wash your hands well and frequently. If you cannot wash your hands with soap and water, use an alcohol-based waterless hand sanitizer. When dining out, avoid food from unreliable sources such as street stalls and kiosks. Wash all fruits and vegetables thoroughly and avoid any unpasteurized products (such as unpasteurized milk, yogurts and cheeses).
Talk to your dietitian before you leave and discuss what to do when you encounter new foods. Everyone has their own levels of tolerance for different food types so be sure to know your limits. Pack extra enzymes for high-fat meals and talk with your dietitian about how to estimate what dose of enzymes to take when you eat unfamiliar foods, especially if this is your first trip abroad. If you have diabetes, talk to your CF clinic team about insulin dosages and whether they should be altered with changing schedules or a different diet.
If you are in a place where there is no safe drinking water, only use water from sealed bottles or containers. Avoid ice cubes, juice mixes and other “hidden” sources of contaminated water. If you are going to a hot/humid climate, it is suggested to consult the ‘Cystic Fibrosis and Summer Tips’ pamphlet.
Other important considerations
Plan everything and talk to your CF clinic team well in advance of your trip. Factor in the time it takes for visas and other documents to be issued.
Changes in altitude may impact your breathing, so talk to your physician if you are travelling to a destination in higher altitudes such as mountainous regions.
Travelling with a mobile phone is a good idea. Most phone companies offer discounts for international calling.
Some countries, especially in the developing world, may not have accessible internet or they may block websites including email services. Look into potential restrictions and inform your friends and family about how you will be able to communicate with them.
Amusement parks or tourist sites may have “short line” entrances and offer free or reduced rate entrance passes to people (especially children) with certain medical conditions. Inquire in advance and bring a letter from your doctor indicating that you have cystic fibrosis. If you are planning day-long activities, you might want to arrange to have a wheelchair available, in case you need it. If you require a treatment during the day, ask guest services if there is a private area where you can plug in your device and do the treatment in comfort.
When you are outside, use extra sunblock, especially if you are taking medications that increase sun sensitivity.
If you do not have a travel partner, consider taking a group tour. This is often the most cost-effective and safest way to travel, and is also a great way to meet new people with similar interests.
Plan ahead, be prepared, and have a great trip!