People, like us, who have had a defibrillator fitted because their heart has developed abnormal rhythms which can’t be controlled by drugs often find life very frightening and uncertain. It is easy to become scared to do anything and become more disabled than necessary. All of us have suffered a degree of this at some point. Anxiety and depression are normal reactions to such problems. One may become very angry about one’s situation and about the machine. Remember that the defibrillator is not the cause of your problem – the problem is the condition that led to your heart misbehaving. True, the defibrillator can restrict you a bit, but remember –
THE BOX IS THERE TO SAVE YOUR LIFE
As many can testify, it does this very well.
Here are some answers to commonly asked questions to help you get to grips with your situation.
What is an ICD?
An ICD is an Implantable Cardioverter Defibrillator - it does the same job as a heart start machine that you may have seen on TV soaps, etc. but it is much smaller and comes in a "box" which is implanted under the skin (usually below the left collar bone).
What is a defibrillator for?
A defibrillator is a device that delivers electric shocks to the heart in order to correct an excessively fast or erratic heart rate or dangerous rhythm. It will not prevent such a rhythm from happening, only correct it and so save your life. Some machines can try to do this first by pace-making to override the heart’s own rate and will only shock if this fails.
How does the machine know when to work?
It contains several sophisticated computers that monitor your heart rate. The hospital sets the box to fire if the rate exceeds a particular figure for more than a given time.
Will I know when the machine is going to fire?
When your heart rhythm goes awry you may faint and wake up when the defibrillator has done its job. Other people have a feeling of faintness or palpitations just before a shock is triggered, but you may get no warning at all. It all depends on your particular condition.
How will I know when the machine works?
You will feel a big ‘thump’ in your chest. You may cry out involuntarily, see a flash of light and have a spasm affecting all muscles. Some people fall down, but many remain standing. It isn’t painful, only a bit frightening. If your machine paces you back to normal the only thing you may feel is slight faintness and palpitations, or even nothing. Some people have minor muscle aches for short periods following a shock.
What should I do when it fires?
- Most important of all – DON’T PANIC.
- Sit or lie down until you feel well enough to carry on, then go home.
- Report your firing to the team who look after you and to your G.P.
- If you have been taken to a local hospital, tell them that you have a machine, show them your data sheet, and tell them who looks after you.
- If you feel like it and your advisers are happy, carry on as usual.
How can I avoid it happening?
Where appropriate you will have pills to try to calm your heart. Never stop them without medical advice. Some people find that physical or mental stress can set their heart off. If this is the case with you, then avoid such situations.
What happens if somebody is touching me when the machine fires?
They will come to no harm whatsoever. The only thing they might feel is a very slight tingle.
How will this affect my family?
Many of us find that family and friends become very anxious about us. They may keep checking up on us and get terrible frights if we cough or sneeze. They may not wish to let us be alone at home nor let us go out unaccompanied. This is not surprising because you might have been “brought back from the dead” before you had the box fitted. Naturally this is very frightening and their reactions are quite understandable, if a bit annoying at times. Like you, they need time to adjust, so be patient. There is advice for relatives and others to help them cope, on the "Family" page - see the tab at the top of this page.
What special precautions should I take because of the machine?
- Avoid strong magnetic fields such as are found around some industrial electric motors, security metal detectors and the back of speaker cabinets. Magnetic fields can switch your box off. If they do you will hear it bleeping for a short while. If this happens get immediate medical help and tell them that your machine has switched off.
- Because you may faint or lose control when the machine fires, you should avoid ladders, non-fenced heights, bicycles and horse-riding. Similarly you should not go swimming alone, and when walking in the isolated countryside always have a friend along. Being without a companion where others are about is fine, but some of us find that this is made easier if we carry a mobile phone and so can be sure of calling help if needed.
- Avoid pressure over the place where the machine is implanted, either from tight clothing, belts or straps of bags or rucksacks.
Can I drive?
Not to start with. The Driver and Vehicle Licensing Agency must be told about your condition. They will then withdraw your licence. Later you may get it back. (See the advice on the "Driving" page - see tab at the top of this page.)
Can I work?
It all depends on what you have to do. You should not work at heights, drive (unless you have got your licence back) or handle dangerous machinery such as lathes or chainsaws. Any job avoiding these will be OK providing your heart will allow. The ICD won’t stop you. Discuss your circumstances with your consultant, care team or GP.
Can I play sport?
You can play any sport that your heart will stand but should avoid contact sport because you might get a blow on your box. Ask your doctor if you are in doubt.
What about lovemaking?
Carry on carrying on. If the box goes off during, it might give your partner a fright – or a “buzz” – but no harm will come to either of you. The only thing that could stop you would be if intercourse was enough to set your bad rhythm off every time.
What about holidays?
You should try to take your holidays reasonably close to a hospital with a Coronary Care Unit, and not too far from one that can regulate your defibrillator. Exactly where you can go should be discussed with your physician. For further details go to the "Holidays" page - see the tab at the top of this page.
What should I do if I think something is wrong with my machine?
Contact the team who look after you and follow their advice. If you cannot get hold of them tell your G.P. or go to the nearest Accident & Emergency Department.
What if my battery goes flat?
Your regular checks will make sure that you will not get to that point before you have a new box fitted, When the battery is low you will hear it bleeping once an hour and you should then call the hospital.
What can the Support Group do for me?
We are a group of people who have defibrillators and who know what it is like to have all the various worries about this. We try to help by being available to talk to you at any time; just phone one of the numbers on the "About Us" page - see the tab at the top of this page. We also hold meetings where we can socialise and moan together, and our partners can do likewise! Mainly however we are here to help you get back to as near normal as possible and we find that doing so also helps us.
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.