The ICD Patient Support Group Experience

Dawn Sabin, RN, from the Vanderbilt Heart and Vascular Institute in Nashville, Tennessee, provides us with more information about the Vanderbilt Heart ICD Support Group.

Does your ICD group have a name or nickname? When and how often does your ICD group meet? How and when was your group first formed? Our ICD group’s nickname is The Vanderbilt Shockers. Our group members suggested this name. Our first meeting took place on May 19, 2007. We meet 4 times per year on Saturdays. Our most recent meeting was on July 25, 2009.

Tell us about your role in the ICD patient group. Are you a moderator? How many members/participants do you have? How did you become involved in the group? My role with the group includes being a founding member, group facilitator/moderator. I am so fortunate to have a wonderful group coordinator, Irma Collazo, who has functioned in many different capacities. We usually have 80 people attend the meetings. Some patients travel several hours to attend a meeting. In July 2006, I began working with Vanderbilt Heart and Vascular Institute (VHVI). VHVI is an institution that continues to provide top-level cardiovascular care in the southeast. In 2006, what seemed to be lacking was a support group for our ICD patients. The ICD patients have a special place in my heart, and with expanded indications for ICD implants, our population of patients continues to grow exponentially. So in late 2006, I decided to approach our clinical director of electrophysiology, Dr. Walter Clair, about my idea of starting a support group for these patients. Dr. Clair was an enthusiastic supporter of the idea. I then approached our administration about starting a support group, and they too were supportive of the idea. Our group continues to grow and evolve.

What is a typical meeting like? How long does each meeting last? Who are the speakers who have participated in the past? Do the same patients generally attend each meeting, or does the group consist mainly of new patients each time? What is the age range of the ICD group members? Where do meetings take place? A typical meeting is held in a “lecture hall” on our main campus from 11 am until 1 pm. One of our members starts the meeting with reflective thoughts or sometimes a prayer. We have been blessed by our excellent keynote speakers, including Dan Roden, MD; Cindy Osborn, RD, LDN, CDE; Zack Klint, MS; Rebecca Fallon, MS; and Dawood Darbar, MD. Our topics have included: “Living well with an ICD,” “Exercise programs for cardiomyopathy patients,” “Take care of your heart by eating smart,” and “Living with heart failure and making the most of it.” We have had several patients give testimonials. One testimony came from a young preacher who was revived while playing basketball, and another from a patient who has had a device for 20 years. These testimonies are very powerful. We have a core group of patients who attend each meeting, but each meeting also includes several new patients. The age range of the patients is early 30s through late 80s. One patient who attended our last meeting was only 4 days post implant. We have attendees who actually have their device followed at other facilities and come with friends who are followed by VHVI. We provide finger foods and beverages at each meeting. Our plan is to hold our next meeting in November at the new Vanderbilt 100 Oaks freestanding facility, which will make parking much easier for our patients.

What are some of the common anxieties or issues that you hear from ICD patients? How do you help patients deal with these anxieties? The most common anxiety, of course, is the fear of a shock or fear of multiple shocks. Some people feel like they are living with a time bomb in their chest. I like to tell them it is like having life insurance (we all want to have life insurance…we just do not want to use it today or tomorrow!). Having a device does alter patients’ lives and sometimes alters their self image. Younger patients often experience an alteration in their perceived body image. For some patients, just attending our meetings is an eye-opening experience, since many of them do not realize how many others actually have implanted defibrillators. Often when a patient gives a personal testimony at the meeting, then other patients are willing to talk about their own experiences and fears.

What is the most memorable or bizarre story you’ve heard from an ICD patient? Over the years, I have heard numerous accounts from patients about a shock they have received. Some people hardly interrupt their activity for a shock, while others come apart. The funniest story, in my opinion, was from a patient who received a shock while in his recliner chair. He told me he thought his ceiling fan fell on him, but when he looked up, the fan was still in place and working! He then realized it was a shock from the ICD and called me.

Have any of your ICD group members experienced a phantom shock? What is your advice on helping patients who may experience these? Many times after a patient receives one or more shocks, they will experience phantom shocks. If a patient is experiencing this phenomenon, they need reassurance that their device did not fire and that what they are experiencing is common. Over time, they will likely not be bothered by phantom shocks.

Tell us about the importance of belonging to an ICD support group. I think the most important thing our group offers our attendees is a place to ask questions and voice their concerns, not just to their health care provider, but to other patients dealing with the same life-altering issue. Sometimes reassurance can come from friendship bonds that are established and rooted in the support group meetings.

For more information, please visit: https://www.vanderbilthealth.com/heart/10997