North Gloucestershire ICD Support Group

          When you leave hospital after your ICD implantation, you should have received a range of literature from the ICD manufacturer, the Arrhythmia Alliance or the British Heart Foundation. This literature plus advice from your medical team will have explained to you all the do’s and don’ts’ about living with your ICD.        

          You will need time to adjust to a life with an ICD, on average about four months. Initial insecurity and misgivings will subside as you gradually begin to accept that your ICD’s existence from an emotional point of view. Perceive your ICD quite literally as being a form of life insurance.

          No device and no form of therapy offers you a better chance of surviving a critical episode in an emergency without lasting damage. The ICD is always at hand and will deliver the right therapy to the correct part of your heart within seconds.

Overcoming initial psychological setbacks.

          Quite possibly, the initial period after the implantation will not be easy. You will be confronted with having to accept this small implanted device as part of your body, your everyday occupation, your life. Sometimes it may be difficult to be self -confident, you may become over-sensitive and some patients at first may suffer from depression. A few people actually become angry at the implant itself. Being over-cautious can in the long term diminish your ability to enjoy life, too.

          Negative reactions towards the “foreign object” in one’s chest shortly after implant are normal. In part, they are caused by feeling dependent on an implanted device. However, surveys on the quality of life experienced by ICD patients have shown that that quite often negative reactions of this kind are not so much directed at the implant itself. They are rather due to the fact that most patients, when things are finally getting better, now at last have the opportunity to emotionally come to terms with their heart problem.

         A patient can regard his defibrillator as a relatively neutral form of intervention intended to prolong his life whilst improving its quality, and not as a device on which his whole life should focus on in the future. (Herz/Kreislauf 3/97)

           Many ICD carriers welcome the idea of exchanging views and experiences in a support group where people with similar medical history meet. Ask your cardiac team for details of any ICD support groups in your area. The Arrhythmia Alliance can also advise you.

How to respond to an ICD shock

          An ICD has consistently demonstrated a life saving benefit in patients at risk of sudden cardiac arrest. Quality of life outcomes with an ICD may be directly relating to coping successfully with an ICD shock. Whilst most people are able to tolerate a shock to some extent, the experience is discomforting and can prompt feelings of anxiety, fear or depression. Despite that, a desirable quality of life can be achieved despite the experiences of a shock by involving your family and others in setting in place plans both pre and post shock. An excellent article “How to respond to an ICD shock” details how to address these issues.

Coping with my partner’s ICD

            It has been suggested in recent research that the psychological distress and anxiety associated with having an ICD is just as much a concern for an ICD partner as the recipient. The research article “Coping with my partner’s ICD and cardiac disease” describes a number of strategies to help adjust to the ICD. The goal is to achieve a high quality of life because of the protection that the ICD provides.

Cognitive Behavioral Therapy

         A powerful tool to help one adjust to the ICD implant is Cognitive Behavioural Therapy (CBT). 

       Cognitive Behavioural Therapy (CBT) is often called “talking therapy” because when you are a patient within a session with your CBT therapist, you spend most of the time talking together. In between therapy sessions you are usually given specific tasks to perform such as writing down significant thoughts that you have every day. The word “Cognitive” means that CBT is concerned with your thoughts and the word “Behavioural” means that CBT is concerned with the things that you do. CBT is based on the way your thoughts and behavior influence each other.

        An attraction of CBT is that it is often for a fixed number of sessions after which you will have the skills and techniques available to help you adjust to any situation that arises.

          For further information visit the British Association for Behavioural and Cognitive Psychotherapies (BABCP)

          It used to be the case that getting NHS help with CBT or other types of therapy was quite difficult, however a new service has started in Gloucestershire called “Let’s Talk”. If you feel stressed, anxious or depressed, you are not alone. The “Let’s Talk” is a free service from the NHS. Their goal is to help you feel more like yourself again. A trained therapist is at the end of the telephone to guide you through the service. They may be contacted by a variety of methods:

Telephone  0800 073 2200
Web site    www.talk2gether.nhs.uk
Post     Lets Talk IAPT Services
           121-131 Eastgate Street
           Gloucester  GL1 1PX

         In addition, a fairly new CBT service has become available. This a Computer based Cognitive Behavioral Therapy (CBBT) service. It is called “Beating the Blues” and is the most widely used and evidence based CCBT program for the treatment of depression and anxiety. Again this service is free and to join, you will need a referral from your General Practitioner. For further information go to http://www.beatingtheblues.co.uk/  The site indicated that the service is available in Gloucestershire.

       

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