Accepting an ICD

It can take some time to adjust psychologically to having an internal defibrillator (ICD), says cardiomyopathy nurse specialist Simon Waller

An implantable cardioverter defibrillator (ICD) is a potentially life-saving device as it can protect an individual from dangerous heart rhythm changes.

An ICD is normally offered to people who have suffered a cardiac arrest, or who have been assessed as being at increased risk of dangerous heart rhythms.

The small device, the size of a pacemaker, is placed under the skin, usually on the left side in the area of the upper chest, with one or more leads that connect the box to the heart through a vein.

It can take some time to psychologically adjust to having an ICD.

There are some possible reasons for this:

  • Changes to how you feel about yourself
  • Adjusting to the knowledge that you have an increased risk of heart rhythm changes
  • Worry about how your family now perceive you with an ICD
  • Adjusting to the concept of lifelong follow-up for the ICD and the need for future procedures to replace the ICD as the battery runs down
  • Feeling as though you have lost some control over yourself
  • Worry that the device might deliver a shock at any time
  • Working through any changes that need to be made to your lifestyle, including work, sports and hobbies

The potential need for support when adjusting to having an ICD is recognised by the doctors and nurses who work in this field.

Where an ICD is proposed in a non-emergency situation, thorough preparation prior to implantation can help ease the period of adjustment after the ICD has been fitted.

There are a number of subjects that could be discussed with either your cardiologist or specialist nurse to help with the adjustment process.

These might include:

  • How the ICD works and how it is implanted and subsequently checked
  • The reasons why you have been offered an ICD
  • What action to take if you think you have had a shock from your ICD
  • Whether an ICD would result in changes to work or leisure activities
  • Who to contact if you have any concerns or worries

It can help to have your partner or significant family member present during such discussions as it can also help them to understand how having an ICD might affect you.

Asking to talk to someone who already has an ICD can help to gain some insight into what it is like to live with one.

This can sometimes be arranged through your hospital, or you could contact one of Cardiomyopathy UK's volunteers (key contacts) who have an ICD and talk to others on the phone.

Alternatively, you can contact Cardiomyopathy UK and ask for a volunteer with an ICD to call you.

If, after you have received your ICD, you find that you are struggling, support is also available should you require it.

This can be in the form of emotional support or practical advice and there are a number of options available:

  • Discuss any difficulties you are having with your doctor or nurse specialist
  • It might help to talk to a friend or family member about how you are feeling
  • Some hospital cardiac rehabilitation departments offer programmes of education, exercise and psychosocial help to individuals with an ICD. If available it can be accessed through your GP or the hospital that oversees your care
  • There might be an ICD support group in your area. These are normally organised through the hospital where you had the device fitted
  • Key contacts at Cardiomyopathy UK can also be a great source of support
  • Most manufacturers of ICDs will have a website with an area dedicated to information related to your device

Always remember

While the period of time it takes to adjust will vary from one person to the next, nearly every recipient of an ICD will successfully adjust.

It is not inevitable that difficulties will be experienced. Remember:

  • Do not judge yourself harshly if you are struggling to accept the ICD
  • Do not be afraid to ask for help