Cardiomyopathy Scottish Support Group   

 

REGIONAL INFORMATION

DAY...

Stirling

17th April

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NEW booklet

now available -

Cardiomyopathy

In Children and

Young People

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Scottish Regional Clinic update

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Children and living with an ICD

By clinical nurse specialist Diane Barlow from Great Ormond Street Hospital, London

 

An ICD (internal defibrillator) is a small generator, the size of a matchbox, which is fitted in the chest and checks how your heart is beating. It automatically corrects any abnormal rhythms.   Your ICD will need regular checks. As well as one before you go home from hospital, follow-ups will be needed to check how you are doing, that your ICD is still on the right setting for you, and that the battery has plenty of power. Anytime the settings of your ICD need changing, your doctor will be able to use remote control so another operation is not needed.

 

The early weeks

In the first weeks when your wound is healing, you should avoid swinging your arms higher than your shoulders and activities such as golf, swimming and bowling. Carrying anything heavy, such as school books, should also be avoided.

 

The scar

The scar will gradually get less red and eventually fade to a white line. Gently massaging moisturising cream into it can make it less noticeable. So girls should still be able to wear strappy tops without the scar being very noticeable.

 

What do I tell my friends?

It helps to think about what you are going to tell your friends before they ask. Be prepared and have a response ready. Some of your friends will be cool about it and others may be scared by it. You don't have to tell everyone but it may be useful to tell close friends. You can talk the issue over with your mum, dad or a member of the hospital team looking after you.

You may be asked why you haven't been at school and why you have a scar. People don't always need a lot of information but are just curious. Talking to other young people with ICDs can be helpful as they can tell you about their own experiences.

 

School

You can go back to school as soon as you feel well enough. It’s a good idea to tell the teachers that you have an ICD just in case. If they want to know more about it, they can ring your clinical nurse specialist for advice.

 

 

Exercise and sport

You should be able to do a similar amount of exercise as before. If you are planning to start a new exercise programme, check with your doctor. You might need an exercise test to check that the settings on your ICD are right when your heart has to pump harder than normal. You should avoid some sports, especially if they’re contact sports like rugby or judo. A direct hit to your chest could damage the ICD and you.

 

Going out

There’s no reason why your ICD should get in the way of your social life. But if you have any questions, ask you nurse specialist for advice.

 

Precautions

If you are in hospital for something else, do tell those looking after you about your ICD. Some scans and treatments can stop the ICD working properly, so you need to avoid them. These include MRI scans that use strong magnetic fields, lithotripsy that uses sound waves and cautery that uses heat. If you have radiotherapy that uses x-ray beams and diathermy that uses electricity to create heat, you should also tell your doctor.

If you are having an operation, the doctor should contact your heart team for advice. You may need to have extra monitoring during the operation or certain surgical techniques might have to be avoided.   We suggest you wear a medical identity bracelet or necklace at all times. Your nurse specialist can tell you about this and also supply you with an identity card saying you have an ICD.

 

Mobile phones

Your mobile phone should not interfere with your ICD but we advise you to avoid carrying it in your breast pocket or the strap of your bag.

 

Household equipment

Your ICD is designed to cope with common household items like microwave ovens, so they will not cause any problems. If you are likely to come into contact with industrial equipment, check with your doctor.

Travel

Going aboard will not affect your ICD (but see security gates and checks below). You may find you have more trouble getting travel insurance. Before you go, find out about ICD centres near your destination and get in touch with them to warn them. Hopefully you won’t need them but carry the information with you at all times just in case.

 

Security checks

Most shops, libraries and airports have security gates. Walking through them at normal speed won’t harm your ICD but try not to hang around near them. Your ICD might set them off. It can help to warn the security guards and show them your identity card just in case you set them off. You should not be searched by a handheld scanner as it uses magnetism. Show the guard you identify card and ask to be hand searched instead.

 

If you feel ill

If you feel faint, sit or lie down immediately. This could be an early sign that your heart rhythm is affected. If your ICD gives you a shock, it is safer if you’re sitting or lying down. If you have one shock and then feel better immediately, make a note in your diary. You can call your nurse specialist if you want to talk about it.

If you have more than one shock or still feel ill afterwards, stay where you are and ask someone to ring 999 for an ambulance.