ICD Patient Support Group: St. Peter's Hospital

Does your ICD group have a name or nickname? When and how often does your ICD group meet? Our group's official name is the ICD Wellness Support Group. Our newsletter is called ...And the Beat Goes On. Our group meets quarterly. We also have a picnic during the summer and a holiday party in December.

Tell us about your role in the ICD patient group. Are you a moderator? What is a typical meeting like? I am the group facilitator. Our meetings typically begin with announcements and information regarding any new issues that relate to ICDs. We follow with an open session. During this time, new members are introduced and are given the chance to talk about their experience of receiving an ICD. Regular members will also bring up their concerns, experiences, or questions about an ICD. The group is encouraged to share their thoughts or experiences as they relate to the issues brought up. When questions are medically or technically directed, I will address these or defer questions to ICD company representatives who frequently attend. The main session of the meeting involves an hour-long lecture. The presentation will focus on ICDs, cardiac disease and cardiac health promotion. Over the years, some of our topics have included the history of ICDs, relaxation techniques, promoting AEDs in the community, health benefits of humor, herbal medicine, living with an ICD, treatment of arrhythmias, and healthy cooking classes. Lectures are followed by a light meal. This gives members a chance to meet socially and talk more about issues and topics brought up. This is a special time for the members when they take the opportunity to support each other individually.

When did your group get started? How many members did you have then? How many do you have now? Our group started in 1994 by a former EP lab staff member William Murawski, RN, BSN. The group started with a meeting of about 16 people (ICD recipients and their spouses). Today there are generally 20-40 people who attend meetings. Our summer picnic will have 100-150 people in attendance.

What are some of the common anxieties or issues that you hear from ICD patients? What is usually the most difficult obstacle that patients face when adjusting to life with an ICD or device? Describe some of the other psychological, physical, and social adjustments ICD patients might encounter. The most common anxiety generally concerns receiving a shock from the ICD. This includes anticipated shock or actual shocks. People who receive multiple shocks seem to have the greatest difficulty with this. For some patients the most difficult obstacle they face is adjusting to the changes required in their lifestyle. People have faced changing careers due to such things as regulatory restrictions when working in transportation or giving up aggressively active sports. Through the group, support is provided to people going through these situations. We focus on keeping the ICD experience positive. This is accomplished by emphasizing that restrictions are not due to the ICD, but by their heart condition and arrhythmias they may have. In addition, the ICD is introduced as a life-saving device. ICD recipients and their significant others are introduced to adjustments with some emphasis on grieving stages, cumulating with acceptance of the ICD.

How do you help patients deal with these anxieties? What is your advice on how to help patients relieve stress from having an ICD? When patients first receive their ICDs they are giving the opportunity to have an ICD recipient who volunteers to contact them. The volunteers usually share their own experience as well as learn more about the new ICD recipient and address their concerns on an individual basis. Sometimes the volunteers will have more than one contact with an individual, and frequently bring them to the ICD support meetings. My approach with ICD recipients is to learn their specific stress, anxiety or concerns. It is important to acknowledge and validate these feelings and concerns as legitimate issues, and then address how the individual will best find the answers or coping mechanisms to deal with their issues.

What is the most memorable or bizarre story you've heard from an ICD patient? There are many memorable moments that I have had with ICD patients over the years. Just about everyone who attends has brought something special and unique to the group. Some have come with an incredible spirit to not let the ICD change their life, and others have shared their darkest moments and fears after receiving a shock. One patient always comes to mind when I think of difficulty adjusting to an ICD. This gentleman received multiple shocks due to atrial fibrillation shortly after receiving his ICD. Adjustments were made to his medication and ICD and the shocks resolved. The gentleman remained terrified of receiving another shock, and was brought to our meeting by his wife. After arriving he almost walked out, but we convinced him to stay. Group members took him under their wing and introduced him around and provided him support and encouragement. He now is one of our dedicated members and is an active supporter. He even has volunteered at community events talking to others about having an ICD. A bit bizarre yet positive story was from another gentleman who received a shock while rollerblading. He lost his balance and fell down. Although startled, he simply got up and finished his rollerblade session.

Have any of your ICD group members experienced a phantom shock? What is your advice on helping patients who may experience these? There have been some members who have experienced phantom shocks, and this may be a sensitive issue to address. The best advice is to acknowledge the experience as real to the individual. Share information about the theories of phantom shocks, and be supportive. Knowing that there are others who have experienced this is helpful. For most this does not seem to be an ongoing problem, and usually disappears over time.

An increasing amount of literature is addressing end-of-life issues for ICD patients. Is this addressed at all at the meeting? This topic has come up on several occasions. End-of-life issues were included at a presentation some years ago. It also comes up occasionally during our open session. Although a somber topic, ICD recipients and their loved ones portray a sense of relief when they know ICDs can be turned off, and that they will not be subject to potentially multiple shocks during their final days.

Why are ICD support groups so important? ICD support groups provide the opportunity for people with ICDs to gather together with one common interest. It provides the framework for a sense of community for the members, acknowledging that they are not alone and that together they can make it through the days ahead and help others to do the same.

Is there anything else you d like to add? I believe the ICD patient volunteer program we have has been very important to individuals. Over the years, I have received feedback numerous times, and they all say that talking with another ICD recipient had made all the difference. People get the sense that they are not alone, and get an idea of what to expect in a positive but frank environment. Also knowing others have been where you are, in that moment, can mean all the difference between a healthy adjustment to life with an ICD, or an emotionally crippling experience. The sense of community that evolves from our ICD support meetings is truly the most valuable aspect of our group. This is where the true support evolves, as individuals come to know each other and then support each other without my facilitating anything.

For more information about this ICD group, please visit: www.stpetershealthcare.org.