Travelling with congenital heart disease

Airport

Travelling with a congenital heart defect is, in principle, not a problem. However, when it becomes necessary to seek medical care in the country that you visit, you should be prepared and have all the information and facts about your or your child’s heart defect, including what type of diagnosis and the name and phone number of your doctor. Because medications can have different names in different countries, you also need to bring the name of the active ingredient in the drug that you are taking, together with the dose you receive. It is also an advantage to note whether the dose was recently changed, and other information that could be important to the physician who you will meet. If you are planning a longer trip, or if you are unsure, you should seek advice from your doctor, who will need to consider the type of travel you will be taking (eg, will you be a backpacker or a charter tourist?)

Find out where the closest hospital is located. A good idea is to learn how to say ”I/my child have/has a congenital heart defect” in the local language. Maybe get all the relevant information translated into the local language too.

If you have a pacemaker and plan to travel, you should seek advice from your physician.

Choosing destination

There are many factors to consider when choosing your destination. High altitude (about 1500 meters over sea level) will be a problem for anyone who has difficulty controlling their blood pressure. In addition to being uncomfortable, oedema is also a risk.

Avoid very hot places if you get easily dehydrated. If you should lack fluid, you might need to go to a hospital. Similarly, avoid cold places if you easily get cold.

If medications need to be kept cold, make sure you choose a place to stay with a fridge. You might want to consider staying in a place that is close to the excursion destination in case you or your child become tired and need to rest.

Flying to your destination

The flight itself is rarely a problem; however, a flight change can cause difficulties for people with a complicated heart defect. It is a good idea to choose a connecting flight that will take off a couple of hours after your first flight, so that you have sufficient amount of time to pass through passport control and security. You should seek assistance at the airport if you or your child is restricted in everyday life because of the heart defect.

There are restrictions imposed for how much liquid you are allowed to bring with you on the aeroplane in your hand luggage. Less than 100 ml is usually allowed, but you should check with the airline company as to what the current limitations are because they can vary. If you need to bring medical equipment, it is advisable to have a confirmation letter from your physician. The medical equipment cannot exceed the size of normal hand luggage. Do not place medical equipment in luggage that is checked in, since it can be damaged during the flight. Some parts of equipment, like blood feeding machines and food strips, will be damaged by the low temperatures in the plane’s storage.

Insurances

EU citizens travelling to an EU country or Norway or Switzerland have to bring their European Health Insurance Card with them to qualify for discounted medical care. This card is free of charge to obtain and can be ordered through your country’s insurance office. If you do not have the card, the medical visit can turn out to be expensive. However, the card does not replace insurance.

If you plan to travel to a country outside the EU, it is advisable to find out in advance about the medical and health-care system in operation. Additionally, you should find out what vaccines are needed before you travel.

Your insurance must be valid, but look for insurance that offers the most advantages. Do not hesitate to ask the insurance company a lot of questions and be sure to read their policy thoroughly. Not having medical insurance can be expensive. For example, a room in the intensive care unit in a US hospital costs around €4000 per night and an emergency aeroplane from Asia will cost €100 000.

Insurance usually lasts for 45 days, after which you will need additional cover. Uninsured travellers are liable for the entire cost themselves.

It is important to remember that health insurance usually only covers the person who has become ill and not the not the other people that he or she might be travelling with, even though they could well be affected. For example, if one person in the group misses a flight because he or she is admitted to hospital, usually only that person will receive compensation, not the remaining members of the party. There could be exceptions, and it is advisable to check with your insurance company.

Different embassies have different levels of responsibility. For example, at some embassies you can seek advice and help to find an interpreter. If there is no embassy in the country you are travelling in, you can seek help from another EU country’s embassy.

If you become sick while abroad and have to go to a hospital, it is important to get a medical certificate the first day of admission. Remember to save all receipts.

Important telephone numbers:
SOS international +45 70 10 50 50
Euro-Alarm +45 70 10 90 50
Nordic International Assistance + 45 70 20 21 21

References

Children’s Heart Federation, Hear Children's association, The Consumers Insurance company, Open Hearts 2004, senior physician Peter Eriksson, Guch reception Queen Silvia’s children- and youth hospital, Goteborg.

Author(s): Ulrika Hallin
Reviewed by: Peter Eriksson
Last updated: 2010-02-19

Do you want to tell us about your experiences? Leave a comment on this article.

Comments on this article

21.01.2009 | Clare Burgess, UK
I am travelling shortly with my daughter who has a complex CHD. I followed all the correct procedures asked her cardiologist was she ok to travel and asked her paediatrician to write a fit to fly letter for her. I received the letter which stated she would benefit from oxygen on the flight. The airline at this point informed me that they wouldnt supply her oxygen and I couldnt carry my own and in fact is she required oxygen they would not allow her to travel (although legally they have to carry oxygen in case of an emergency). Luckily for me her Cardiac Consultant confirmed in fact she DID NOT require the oxygen and her Paed was incorrect. However word of warning, please check this thoroughly, most airlines will help but there is a couple who just wont entertain it. Also make sure you keep your insurance company updated with information.
03.03.2010 | Cathrin G, Deutschland
Hallo,

ich kann nur jeden Herzpatienten empfehlen sich vor seiner Abreise genügend zu informieren und notwendige Dinge, wie Krankenversicherungen, etc. schon vorher zu tun.
Reisen ist grundsätzlich kein Problem und auch das Leben im Ausland ist möglich. Ich selbst habe ein Jahr studienbedingt in Belgien gelebt und kann mich nur bei der Betreuung meines Arztes und seinem Engagement bedanken.
Für mich entstanden leider ein paar Herzprobleme während des Aufenthaltes, die auch einen Krankenhausaufenthalt einschließten.
Da Belgien so liegt, auch bei Problemen mal kurz in Heimatland zu gehen, war ich anfänglich der Meinung, dass bei gesundheitlichen Problemen die Versorgung schon funktionieren würde. Pustekuchen. Ich war sehr enttäuscht, dass dieses renommierte Krankenhaus, dass sich auf angeborene Herzfehler spezialisierte, meine Probleme nicht ernst nahm und mich abwies und auf unrealistische Termine verwies. Es musste soweit kommen, dass ich ins belgische Krankenhaus eingeliefert wurde. Dort hatte ich eine gute Betreuung, auch durch das Engagament meines Heimatarztes, und trotz dessen die Ärzte sich dort nicht mit angeborenen Herzfehlern auskannten.

Hier mangelt es absolut an flächendeckender Ärzteschaft, die sich auf angeborene Herzfehler spezialisiert hat.Dabei ist wohl anzunehmen, dass durch bessere Behandlungsmöglichkeiten die Lebenserwartungen von Menschen mit erschwerten angeborenen Herzfehlern steigt und die nun Erwachsenen zukünftig betreut werden müssen!
Daher kann man nur hoffen, dass viele Ärzte zukünftig bereit sind, sich mit dieser Qualifikation vertraut zu machen!