Living with an ICD

ICDs are programmed to pick up and stop life-threatening arrhythmias

ICDs are programmed to pick up and stop life-threatening arrhythmias

Identification card

You will be given an identification card to carry with you at all times. This will have details about you, your ICD, your doctor and the hospital you go to.

Routine check-ups

You will need regular check-ups, usually at a special pacemaker /  ICD clinic, to ensure your ICD is working properly and to monitor your device's battery life.

At first your doctor may want to see you every month; once things are stable your check ups will be every 3-12 months.

What happens when your ICD fires / shocks

Before:

  • You may get warnings such as palpitations, feeling light–headed or dizzy. If this happens you should sit or lie down immediately. Let someone know how you are feeling. Try not to panic.
  • You may not get any warning as some arrhythmias make you become unconscious quite quickly.

During:

  • Most people describe the shock as a jolt, like a kick or punch to the chest. It can be painful but it should pass very quickly.
  • Some people describe a tremor that goes through their whole body.

After:

  • You should recover from the shock and jolt fairly quickly. However, it is advisable to take a little time to rest before recommencing activities as you may feel dizzy.
  • Although, after a short time, you are likely to feel OK, you should contact your doctor / clinic to arrange to have your ICD checked.
  • Any treatments delivered are recorded in your device; this information can be retrieved by the clinic and they will be able to see why it fired.
  • If you feel unwell after one shock or your device delivers several shocks one after another, phone 999 so that you can be taken to hospital as soon as possible.

Very rarely an ICD can fire inappropriately. This will be picked up at the clinic when you have your device checked. The function will be carefully monitored at your follow-up appointments. Talk to your doctor / nurse if you have any concerns about this.

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What can interfere with your ICD?

Most ICDs are designed with built-in features to protect them from common types of electrical interference that you might encounter.

If, however, you suspect electrical interference with your ICD, simply move away or turn off the equipment. Sit down if you feel dizzy and contact your doctor if you continue to feel unwell.

Remember to tell medical, nursing and dental staff about your ICD before any test or procedure using medical / electronic devices.

  • Mobile phones, MP3 players, headphones and palm / pocket PCs can be used safely as long as they are not placed directly over your ICD (e.g. in a breast pocket).
  • Airport security systems: bring your ICD identification card with you and tell security staff that you have an ICD.
  • You cannot have a Magnetic Resonance Imaging scan (MRI) when you have an ICD.

Coping emotionally

Being told you have a life-threatening condition is scary. You may even have already experienced an emergency situation.

Having an ICD should be seen as a positive and potentially life-saving step. Ideally it should give you reassurance that if anything should happen your device will take care of it. However, not everyone feels like that straightaway, especially if you had a cardiac arrest (your heart stopped beating) before getting your ICD.

man and woman holding hands

You may feel a wide range of emotions including:

  • Shock: feeling that what is happening is not real.
  • Anger: this is often directed at those closest to you.
  • Fear: you may be scared of dying, scared of being ill or scared it doesn't work.
  • A sense that you are living on borrowed time. Or that you are a walking time bomb: e.g. when is my ICD going to fire?
  • Guilt: perhaps you feel guilty about the cause of your condition, or the disruption and worry brought to those around you. Feelings of guilt can be powerful and destructive and can be completely irrational.
  • Feeling anxious, low in mood or depressed.
  • Frustration that you are dependent on other people and that your role within your family may have changed.
  • A sense of loss e.g. loss of control, loss of confidence, loss of work / social life.

Try to remember that all of these feeling are perfectly normal as you learn to adjust to life with your ICD. It can often help to talk about them to someone close to you and seek some support for how you feel. In time you will hopefully feel that your ICD is there to help you if you need it.

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Your family and friends

Your family and close friends may feel more anxious about your ICD than you do. For example, they may feel overprotective towards you and constantly be checking you are OK. Or perhaps they may not want you to be alone or go anywhere unaccompanied. You may find this frustrating and stifling or it may make you feel you should be worrying more about yourself than you do.

Everybody copes differently so try to remember that other people may:

  • Lack understanding of how you are feeling
  • Benefit from sharing your thoughts and feelings
  • Have been affected by your condition too
  • Be too scared to talk about fears and worries they might have

Children

If you have young children to look after, either your own or those of your family and friends, you may find that having an ICD changes the way people perceive your ability to care for children. Some people may even think that children in your care may be in some danger because of your ICD. This is not the case.

It may help to explain the facts to those around you. Though it is possible for someone to feel a vibration or distant 'thump' if they are close to you, when your ICD fires, they will not be 'electrocuted', 'zapped' or affected in any other way.

Explain to children what might happen to you should your ICD fire and reassure them that you are just the same as before and that they don't need to worry about you.

Remember that they may have witnessed you being ill and that they may be frightened this might happen again. If your ICD fires then it may help, once you have fully recovered, to talk it through with your children and explain what has happened.

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Sex and pregnancy

Pregnant woman

If you are planning to get pregnant, you must talk to your doctor.

There are two common worries about an ICD in a sexual relationship: that increasing your heart rate during sex will cause your ICD to fire and what it would do to your partner if it did fire during intercourse.

It is normal for your heart rate to increase when you are physically active; this provides the blood supply and nutrients your body needs. This is very different to a fast arrhythmia that will need to be corrected.

If your ICD happens to fire during intercourse it will not cause any harm to your partner.

A misconception about having an ICD is not being able to conceive and give birth naturally. This is not necessarily the case; women have had children and cared for them successfully with an ICD. If you are planning to get pregnant you must talk to your doctor as you will need to be carefully monitored throughout your pregnancy.

Physical activity / exercise

Some people are afraid to be physically active after having an ICD fitted. After your wound has healed (usually about 10 days), any limitation on your activity levels will only be determined by your underlying condition. You should always seek individual advice from your doctor before attempting any new physical activity.

Driving

You must ask your doctor for guidance on driving with an ICD. Visit the driving with a heart condition page for more information.

Flying

You will need to tell airport security that you have a ICD as the metal in the box may set off the alarm. The flying with a heart condition page has further information about travel.

Insurance

Even though you may feel well, after having your ICD fitted, you do still have a heart condition. So it is advisable to tell your insurance company in case they refuse compensation or benefits in the future because you failed to disclose details. Compare companies before paying a higher premium.

Useful websites

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