Family etc

When someone you know and care about has heart problems that are a danger to life, it can be a very worrying, confusing and stressful time.  This page is meant to help you understand what having a defibrillator means to your friend or relative.  It is also aimed at helping you to get through the stress of the immediate problem and telling you what you can do to help.

What is an Implanted Cardioverter Defibrillator (ICD)?

It is a machine which can sense when someone’s heart is beating too fast (Ventricular Tachycardia [VT] or Ventricular Fibrillation [VF]) and deliver a shock or a series of shocks to return the heart to a normal rhythm.  It does exactly the same job as the heart start machines that you see being used in TV medical soaps.

Why should a person need one?

Some heart conditions cause these particular types of abnormal rhythms and in some cases these cannot be stopped or controlled by drugs.  It is in these situations that an implanted defibrillator is used.

Will I know when the machine works?

Yes.  The patient may faint and then seem to have a muscle spasm.  Or they may stay conscious, feel a thump in their chest, have a muscle spasm, and possibly cry out.

What should I do then?

Stay calm.  Get them to sit or lie down.  If they feel quite well after the shock then let them get on with life, but they should let their G.P. know, and also tell the people who attend to their follow-up care at the implant hospital. 

If they do not feel well, or have had several shocks, or have been unconscious for more than a minute, then call an ambulance and stay with them until help arrives.  Be prepared to do Cardio-Pulmonary Resuscitation (CPR, or mouth to mouth and heart massage) if they have more problems and the machine does not sort them out.

Do you mean that the machine might not work?

Yes.  While the machine will make several attempts at returning the heart to normal, there are very rare occasions when the rhythm won’t correct and the machine eventually stops trying – then you need to do CPR or get someone else to do it

Can the machine breakdown or run out of batteries?

Breakdowns are very rare and we have yet to hear of one which led to anyone dying.  The batteries are checked at the hospital visits and the machines replaced well before the battery goes flat.  Also, when the battery is low the machine gives off several audible bleeps every hour.  If you hear the machine bleep then you should call the people who do the regular checks.  Be sure that it is the ICD that is bleeping by listening over the place it is implanted (some people have thought that low battery bleeps from smoke alarms were coming from their boxes!).

On the telly they always say “Stand clear” before defibrillating; do I have to do that?

No.  If you are touching someone whose machine fires you may feel a slight tingling but nothing worse.

Does the ICD user know when the machine is going to fire?

They may feel a bit dizzy or faint but they may have no warning.

Must I keep an eye on them all the time?

It is quite natural to be very anxious about somebody who has an ICD and not want them to be alone or out of your sight.  This can become very restricting for you and for them.  You will find that with time you can begin to relax and, if they are getting on OK, return to a normal lifestyle within the limits of their underlying heart condition.

What sort of things can an ICD patient do?

Most of the things that they could do before they had it.  They should not get too near powerful magnets such as are found in hi-fi speakers, airport security devices and cordless power tools.  They should avoid situations where they might injure themselves if they faint, e.g. heights, cycles or unaccompanied swimming.

What shouldn’t they do?

They must not stop taking their drugs without consulting a doctor. 

After implantation they shouldn't drive & must notify the DVLA about having an ICD. The DVLA will then suspend their license. This is usually for 6 months.  The DVLA will re-issue the license once the consultant has approved the application to drive again.

My relative has been very withdrawn and bad tempered since having their ICD.  Why?

Knowing that you have to rely on a machine to keep you going and that your heart is not normal is a big shock.  Feelings of sadness, anger and depression are normal. Usually with time and support people learn to live with the box.  Initially, however, they may take it out on you, particularly if they think you are always checking up on them and limiting them.

On the other hand they may become very clingy and not want to leave the house.  They may even not want you to leave them alone.

This can be a very difficult time and one of the reasons why the Support Group is here to provide support.  Please don’t hesitate to call someone on the contact list (see the "About us" page) at any time if you feel the need for a chat.

I feel very anxious and down since the ICD was implanted, is this normal?

It is only natural that you feel upset if your relative has been so seriously ill.  You will also feel that you should be the cheerful and supportive one and also very responsible for them if something else happens.  If you find that hard going, especially if they are crabby and ungrateful, you may feel guilty, resentful and angry.  All this is natural.  Try to talk it through with your partner, or discuss it with a friend, us, or your G.P.  Sometimes getting the ICD user to speak to one of us may help get them on a more even keel and so help you.

Is there anything else that I should do?

It would be a good idea if you and your relatives were trained in Cardio-Pulmonary Resuscitation (CPR), just in case of need.  Ask your G.P., the local hospital, the Red Cross, or St. Andrew’s Ambulance about courses.  The courses do not take very long; anyone can do them, and you might save someone else’s life even if you never need it for your family.

What is the Sutton ICD Support Group?

We are a group of folk who have implanted defibrillators and, together with our families, we have started this group to provide mutual help and support to patients and any of their associates.  Members meet locally on a mainly social basis which we all find beneficial as we exchange our various grumbles, knowledge and experiences.

Finally, remember, the defibrillator is not the cause of all the problems.

It is there to save the life of your relative or friend.

Just think what might be if they did not have one.

Whilst the Sutton ICD Support Group makes every effort to ensure accurate information,
we disclaim any legal responsibility for actions as a result of the contents of this page.