SVH Adults Travel and Trips

Initial considerations

Ability to travel

Remember that everyone’s health needs are different and each will have different requirements. Before booking a holiday you will need to seek advice from your cardiologist or specialist nurse  team to check that you are able to fly or undertake a long journey.

You may need to take a completed ‘fit to travel’ form or a certificate from your doctor. In some cases the travel agents will arrange for this to be completed.

You also may need to undergo an oxygen test to check how you will cope at high altitude.

Where to go

Having found out your  medical limitations from your cardiac team, you will have a better idea of suitable holiday destinations. You might also like to think about the following things when planning your trip.

Where is the nearest hospital? Many cardiologists advise against small island holidays because of the distance from medical care. You will want to be able to seek medical care for yourself as quickly as possible in the event of an emergency.

• High altitude destinations are also usually not sensible.
• Check where the nearest doctor and pharmacy are.
• Temperatures – consider if you are able to cope with very hot or very cold weather.
• Check the hotel facilities. Are there fridges in the rooms for medication? Are upstairs rooms accessible by lift? Is there disabled parking?
• How will you get to your destination and how long will the travelling take?

Once you have decided where you are going you may find it reassuring to have the details of the nearest cardiac Centre or  hospital.

If you have a patient-held records folder take this with you so all your  details are to hand, or ask your cardiologist for a letter giving a brief history of your ch condition, treatment received and a list of medications.

Take contact details for your  cardiologist, specialist nurse and cardiac centre with you.

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Support whilst travelling

Oxygen

When a long flight is at high altitude there is less oxygen in the aircraft’s cabin making it harder for a someone with low oxygen saturations to keep their oxygen levels high enough; for this reason your cardiologist may advise travelling with oxygen. The doctor may prescribe it to be there if you shows signs of cyanosis (blueness) or  find it hard to catch their breath. In some cases the doctor will suggest that oxygen is given throughout the high altitude part of the flight.

If oxygen is prescribed you MUST discuss this with the airline you are going to travel with before you book as they all have different regulations about carrying oxygen and may have different costs. You may need to complete a form or get a doctor’s certificate confirming you are fit to fly. If you have booked through a travel agent, they may be able to do this for you. You cannot arrive at the airport and expect oxygen to be made available without having arranged it in advance.

LHM has information about different airlines’ oxygen policies – please contact the office to find out more.

If you are on oxygen at home, you should ask your home oxygen service how to go about arranging oxygen for the journey and your holiday stay. Allow plenty of time for this, as advance notice is required.

There is likely to be a cost involved, so don’t forget to take this into account when planning your holiday budget.

Translations

If travelling to a non-English speaking country it might be handy to learn a few key words, in the local language, for your  condition, medication and for emergency help. LHM has a list of some useful medical terms in French, German, Spanish, Portuguese and Italian.

Blue Badge

The Blue Badge Scheme is  no longer recognized following Brexit. Just check before you travel as advice can change depending on which country you travel too. Do visit:  www.bluebadgecompany.co.uk, for advice and guidance before you travel.  In other countries, parking concessions differ from country to country. Do visit www.disabledmotorists.eu  to find a comprehensive guide about where you can and cannot use your blue badge. If you are travelling by car or intend to hire a car it may be worth taking your Blue Badge with you.

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Travel insurance

Once you have had the OK to travel and decided on your destination, it is very important that you have adequate travel insurance including cover for your heart condition when travelling abroad.

It is advisable to call a variety of different companies; you can try specialist insurance companies that deal with pre-existing medical conditions, although many high street insurers are also able to insure people with congenital heart conditions. Call a few to get the best policy and price.

Please remember that you MUST declare your  heart condition and treatments in full otherwise the policy will be void. You must ensure that the policy fully covers you. Check that the insurance will fly you home with an accompanying adult. It is better to have a holiday knowing that all eventualities are covered.

Holidays in the European Economic Area (EEA), have now changed following Brexit, you need to have a New Global Health Insurance Card (GHIC). You need to check what the country you are visiting covers. Your immediate health care may be covered or the costs reduced.

If you are travelling to countries  such as the USA who operate a private medical system, if you are not adequately insured, you may end up paying for any care.

An insurance company may ask you to speak to their Medical Screening Line. It will be easier if you have all your  details to hand as they will most likely want to know where you are travelling to, dates of travel, your  date of birth, details of your  condition, medication, symptoms, any treatment, and whether they are currently on a waiting list.

Some examples of medical screening questions

Initial screening questions are about:

• Whether you take prescribed medication.
• Whether you have been a registered in or out patient in the last two years.
• Whether you are on a waiting list.
• Whether you have a diagnosis of a terminal illness.

Questions specific to congenital heart disease may include:

• Has the condition been fully corrected?
• Do the affected person’s skin, lips or fingers ever become blue?
• Is the affected person currently growing at a normal rate?
• Does the affected person become breathless unusually easily?
• Does the affected person ever collapse?

Most systems only want yes or no answers

Stating a diagnosis of Tricuspid Atresia may take you to questions about acquired valve disease, so you are better to state that you have congenital heart disease.

Your insurance company may ask for a letter from your  cardiologist confirming that you are fit to travel.

Ensure that you take a copy of your insurance policy and any contact numbers on holiday with you.

LHM has a list of insurance companies that our members have used to gain their insurance although we cannot recommend any specific insurers. Please contact the office for this list or download here. If you have travel insurance with your bank account or if you have medical insurance with a company such as HSA, you may want to check all the conditions are covered.

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Healthcare Abroad

Check guidance for the different countries at :

www.nhs.uk, you can also find out information on global healthcare cards.

If you need to make a claim once you return to the UK, call the Overseas Healthcare Team on 0191 218 1999 (Monday to Friday, 8am–6pm). You will need your National Insurance number and UK bank or building society details to hand.

Remember to keep all receipts and any paperwork (make copies if necessary). You or your insurance company may need them if you’re applying for a refund or reimbursement.

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Medication

It is vital that you have enough medication for the whole trip and extra supplies in case of accidents such as broken bottles or travel delays.

It may be a good idea to pack medicines in your hand luggage if possible, in case of lost luggage.

All medications must be kept in their original packaging.

You may wish to obtain a letter from your doctor to say that you need the medication and a list of all medications (proper name not just the trade name) in case you need to replace any or have difficulty going through customs. Taking a copy of your  repeat prescription is also a good idea.

Some liquids are allowed in your hand luggage, although there is a limit on the quantity. The current rules are as follows, though we strongly recommend you check these before you travel. You can carry small amounts of liquids in separate containers, each no greater than 100ml. They must be taken to the airport in a single, re-sealable, transparent plastic bag, which does not exceed 1 litre, so about 20cm by 20cm. The contents must fit comfortably and the bag must be sealed. The bag must be presented separately at the airport security point.

Essential medicines for the period of the trip may be permitted in larger quantities above the 100ml limit, but will be subject to authentication. Passengers must have obtained prior agreement from the airline and the departure airport, and must also take along supporting documentation from a doctor.

Airport security staff may need to open and screen the medication prior to departure.

If you are on Warfarin, make sure you take your CoaguChek machine and spare batteries. Remember that the machines and the strips are sensitive, so avoid exposing them to extremes of temperature. Ensure that you take plenty of strips bearing in mind you may need to do extra INR tests whilst you are away. If you are staying at a hotel you will need to check guidelines about storing medicines in the hotel fridge. Some medications will need to be transported in a cool bag with an ice pack.

Make sure that you take the contact details of the people who manage your anticoagulation, so that you can get advice if needed.

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Keeping healthy whilst on holiday

Dehydration

If you are holidaying in the summer or in a hot country be aware that some people  find the heat very tiring and they dehydrate very quickly. All people with half a heart need a balanced amount of fluid in their body to help the blood flow through the heart smoothly. It is also important that people on Warfarin do not become dried out as it can affect the speed at which blood clots, affecting the dose of Warfarin that it is safe to give. A plant shows us when it is dry by wilting, adults’ often forget to  drink so offer regular fluid in the shape of drinks and ice lollies.

Always carry a bottle of water with you, you don’t need to keep buying the expensive spa type, just buy a sports bottle and refill it from the tap. If you are somewhere hot, water stays cold in a flask, or you can freeze a three-quarters full bottle overnight to take with you the next day.

Dehydration can happen even more quickly if you catch a stomach bug. Being prepared can help prevent severe dehydration so ask your doctor for a rehydration solution to take with you that is safe for you and an idea of when they think you should use it.

Infections

If you are prone to infections you may wish to ask the doctor to give you antibiotics to take away with you. Taking them in a dried form that you can make up with cooled boiled water makes them easy to carry in your luggage.

Tips to help avoid stomach upsets

Lots of us get a stomach upset when we go abroad because of different water or spicy food. There are ways to reduce the possibility of catching a stomach infection.

• Don’t drink tap water or use it to brush your teeth unless it is clean. Check the quality of the drinking water in the country you are visiting before you travel by visiting the ‘Food and water abroad’ section of www.nhs.uk/livewell/travelhealth.
• Use filtered, bottled, boiled or chemically treated water.
• Ice in drinks should be avoided unless you are in a country where you know that the water is safe.
• Foods to avoid include salads, such as lettuce, uncooked fruits and vegetables, unless washed in safe water and prepared by yourself.
• Avoid food that has been allowed to stand at room temperature in warm environments or that has been exposed to flies.
• Ensure shellfish is cooked thoroughly.
• Only eat freshly prepared food that is cooked thoroughly and served very hot.
• Good hand washing is extremely important; you may wish to use an antibacterial gel as well.

Pacemakers

It is fine to travel with a pacemaker but it can be affected by the security scanners at the airport and may set off alarms.

Make sure that you have the pacemaker card with you.

Air travel

If we fly on a long haul flight we all have an increased risk of developing small clots in the blood vessels in our legs, Deep Vein Thrombosis, more commonly known as DVTs. This happens because we are sitting in one position for a long period of time and our legs are hanging down.

If you have a complex congenital heart condition you may already be at a higher risk of developing clots, this is why doctors prescribe an anticoagulant like Aspirin or Warfarin.

A Fontan circulation  means you are at greater risk of developing DVTs, partly because of the way blood is pumped around the body but also because the blood has an increased tendency to clot if you have had the Fontan procedure. For more information see section on Living with Anticoagulation.

If your prescribed anticoagulation, this will help prevent clots, but there are a couple of other things that you can do to further reduce the risks.

• Drink plenty before and during the flight, preferably water or non-alcoholic drinks. Dehydration creates an increased risk of clots forming because the blood becomes stickier.
• Move about as much as possible. You can also look at the exercise card that is normally in the seat pocket on long haul flights. All of the family can do the exercises together, make it fun.

If on arrival or over the holiday if  you have a  stabbing pain in your leg, especially in the calf, and your leg feels hot to touch seek medical attention. Remember to have your doctor’s letter with you so that any medical team can see immediately what is wrong with your  and how to contact your cardiologist at home.

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Staying safe in the sun

It is important for all of us to protect ourselves from the effects of the sun, but it is essential for a those who have  half a working heart.

Below are some tips for enjoying the sunshine whilst keeping safe.

Protection from the sun’s rays

Your skin is very sensitive, especially along the scar area, and so you burn easily in the sun. Also some medications make the skin even more sensitive. If you are on  Amiodarone you can be particularly sensitive to sunlight, so you  need to be especially vigilant about keeping yourself well protected. Always protect your skin by using sun cream. It is often useful to buy a good quality product as they tend to have a longer-lasting effect. High factor creams are essential . Tanning is not a priority , just being out in the sun will give you a healthy glow.

Make sure that your shoulders are covered and that they you wear a hat and sunglasses, proper UV light protection ones.

Energy levels in the sun

When the sun is shining we all move outdoors. It is great to get some fresh air. Plan activities and plan short breaks.

Swimming with only half a heart

Swimming is great exercise with heart conditions, the water supports your body making exercise a little easier. If you are swimming in the sea or an outside pool a small wetsuit can keep you warm.

Medicines in the sun

Even when the sun shines you still  need to take your medications. Some people need them even when they are out and about. If you take liquid medications it is often important to keep them cool. A little ice pack bag with drinks and medications stored in it will keep them safe, but be careful it isn’t too cold as you don’t want frozen drinks and medication!

Eating in the sun

Not many of us want to eat large heavy meals when the weather is hot and the sun is shining. people with half a heart are no different but we all know that they need the calories to fuel their heart and help them grow.

Lots of small meals and planned snacks that are filled with calories will help to keep your intake high.

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Travelling to cold countries

Whilst it is extremely sensible to be cautious when travelling to hot countries it is equally important to take care when travelling to cold climates. People with single ventricle heart conditions have problems keeping warm so being in an atmosphere that is constantly cold can be a problem. They need lots of layers on, double socks and gloves, scarves and hats. Other issues about an activity holiday on snow could be:

• Travelling high into the mountains where the atmosphere can have a lower oxygen level.
• Falls when on Warfarin or other anticoagulant.
• The added energy needed to get around in the snow.

Don’t  exclude yourself from holidaying in winter destinations but you need added thought when planning a trip to the snow. If you have concerns contact your cardiologist.

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Theme parks

Lots of family holidays include a visit to a theme park which often has a variety of rides that include many where there are clear signs that anyone with a heart condition should not take part. It is often difficult to assess which rides would be safe for you to explore.

The general overview here follows discussions with cardiologists and surgeons who have raised a couple of reasons why the rides might create an added risk for a child or young adult with only one working heart pump.

• The rise in adrenaline (see information box opposite) during a scary ride makes the heart work much harder and can, even in heart-healthy children, cause the heart rhythm to fluctuate. Anyone who already has a heart condition will be at a higher risk of developing arrhythmias especially as they get older.
• Anyone who has undergone a Fontan procedure and who relies on the redirection of blood to the lungs may find that the rotational rides create a G force that will affect their circulation, even if it is only for short periods of time. This may leave them breathless and cyanosed (blue) or they could even lose consciousness.

Doctors are keen to point out that it is up to each family and  person to decide which individual rides may pose a risk but in general the rides which are scary, go upside down or very fast are usually the rides with the greatest cardiac risk.

Rides where you get wet can also pose a risk, this time of you getting very cold and not being able to warm up again. You might plan to go on wet rides at the end of the day before leaving the theme park, or you could have a full change of clothes ready for afterwards.

In some resorts or theme parks there are special services for disabled children and adults. Wheelchair or buggy use, queue passes or entry or access for park events can be organized as long as you show some sort of proof of disability, e.g. the Blue Badge or other medical cards, disability cards, letters or certificates.

If you plan to leave your car in a Blue Badge space while you are away, check whether a photocopy on display will be acceptable.

Making use of the facilities set up for disabled visitors can reduce waiting times, provide easy access and allow you  the full opportunity to enjoy the park experience as much as anyone else.

What is adrenaline?

Adrenaline is a hormone produced by the adrenal glands during high stress or exciting situations. This powerful hormone is part of the human body’s acute stress response system, also called the “fight or flight” response. It works by stimulating the heart rate, contracting blood vessels, and dilating air passages, all of which work to increase blood flow to the muscles and oxygen to the lungs.

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Checklist

Has your cardiologist said that you can travel?

Is the destination suitable for your  needs?

Have you found out where the nearest hospital is?

Do you have travel insurance which includes your medical condition?

Do you have enough medication for your whole trip?

Does you need oxygen for the flight?

Remember to pack

Your CoaguChek machine.

Your  Blue Badge (if applicable).

Your cardiologist’s contact details and a recent medical letter.

Medication list including a copy of your repeat prescription.

Heart medication.

Unmixed antibiotics if needed.

First aid kit with lots of plasters and other medication e.g.  Paracetamol your child prefers, rehydration salts such as Dioralyte.

Snacks which are easy to carry e.g. dried fruit bars.

Drinks for the journey (but beware of restrictions if you are going on a plane).

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Further support

Little Hearts Matter

Telephone: 0121 455 8982; Email: info@lhm.org.uk

LHM Travel Insurance booklet

Has information on a number of airlines and their policies on travelling with oxygen. From the home page, you can search for the ‘Airline index’.

www.travelwithoxygen.com

info@travelwithoxygen.com

Home Oxygen Services

www.nhs.uk/Conditions/home-oxygen

www.disabledmotorists.eu

Provides a comprehensive guide on where you can and cannot use your blue badge.

Foreign & Commonwealth Development Office (FCDO)

www.gov.uk/government/organisations/foreign-commonwealth-office

Provides advice on an individual country basis and includes health and safety issues, etc.