ICD Patient Support Groups

Does your ICD group have a name or nickname? When and how often does your ICD group meet? Providence Hospital Medical Centers: We polled our patients to come up with a support group name but we didn't get any names that were special enough to represent our group yet. These patients are truly special. There are many of them that live full lives and the ICD allows them to have a future. We meet with them every 3 months. We try to stay away from the holidays as much as possible because of family time. We are content to be their second family. Creighton University Cardiac Center: The name of our ICD patient support groups is Jumpstarters. We meet quarterly on a Saturday over lunch. Brigham & Women s Hospital: The Longwood Medical Area ICD Support Group originated in January 1993 as a collaborative effort between the Arrhythmia Services at Brigham & Women s Hospital, Beth Israel Medical Center, and New England Deaconess Hospital. Since that time, the Deaconess and Beth Israel have merged into a single institution; however, we maintained the same meeting format all along and kept the same name. We hold quarterly meetings that rotate between the Brigham and the Beth Israel with an occasional off-site event. Eastern Maine Medical Center (EMMC): We do not have any catchy nicknames, although our group has been in existence long enough that it was originally known as the AICD support group the A is now dropped! That may tell you how long I had a defibrillator! We meet every other month for an hour and a half, which can stretch to two hours at times if people have questions or if people want to stay and talk. We meet at EMMC, although we receive no financial support. The Northeast Cardiology Associates in Bangor, Maine work with all the main ICD patients, so I ve worked out a deal with them where I can give them information about the meetings (the time and place, etc.) and their staff produces a document and mails it. EMMC s Cardiac Rehabilitation Department, now known as Wellness of Maine, provides us with refreshments for all the meetings. Once a year we also have a summer picnic, and because we don t have financial support, I ask companies such as Guidant or St. Jude Medical or Medtronic to help provide the cost of the picnic. Jersey Shore University Medical Center: The name of our group is the ICD Patient and Family Education and Support Group. We meet every other month on weekdays. ICDSupportForum.com: All of the members at the ICDSupportForum.com are part of an ICD Family bound together by their devices. ICDers can post questions, or provide answers and support at their own leisure. The members are very quick to provide support to one another, oftentimes before a site moderator can respond. Tell us about your role in the ICD patient group. Are you a moderator? What is a typical meeting like? Providence Hospital Medical Centers: Dr. Machado's role with the ICD support group is our constant mentor and he is required to speak once a year to the group. When Dr. Machado speaks, our patients listen. Our attendance at his meetings is always well over 200 members. The hospital indicated we may have to find an outside larger facility or break the sessions into two groups on separate nights. The meetings are held in the hospital auditorium. The device companies provide a dinner for all attendees and we have a guest speaker on a specific subject. (Some of our subjects have been: traveling with your ICD; Congestive Heart Failure and your device; Exercising with an ICD.) The group meets for 2 hours in the evening. Creighton University Cardiac Center: I serve as Coordinator and Moderator. During a typical meeting, there is social time, followed by lunch, then an educational lecture. Brigham & Women s Hospital: I work as a Nurse Practitioner for the Cardiac Arrhythmia Service at Brigham & Women s Hospital. I have served as the meeting coordinator (moderator) since the group s inception in 1993. Our quarterly meetings rotate between the Brigham and the Beth Israel, and are typically held on a weekday night from 6-8 pm. We serve a light meal at 5:30 pm, which provides the participants an opportunity to have some informal time together. For the first hour we have a guest speaker who presents on some topic related to device therapy or other heart wellness topics, such as stress management. Over the years we ve covered many different topics such as device functionality, humor, massage therapy, exercising with an ICD, as well as psychosocial topics such as coping with chronic disease and anxiety and depression. After a short break, we dedicate the second hour of the meeting to an open forum discussion. We offer new patients the opportunity to introduce themselves and to share as much or as little as they want about their story. Generally, a lively and interactive discussion ensues. Eastern Maine Medical Center: Just to give you a little background, I spent 43 years in public education as director of guidance at one of the local schools here. I joined this ICD support group in 1993; it had been started by a PA at Northeast Cardiology Associates by the name of Brad Schwatz. When he moved, the group stopped meeting. Then one day a man named Butch Gillman came in to see me at the hospital while I was getting my device implantation. We began talking, and he asked if we should get the ICD group started up again because of how helpful it had been. I told him that I would help him. So for years I helped run the meetings, with Butch there as friendly support until he passed away. So we ve been running the ICD support group first Butch and me, and now just myself for about 13 or 14 years. As far as meetings are concerned, they are very informal. It is important to note, however, that we invite both patients and their spouses to our meetings. There are new people that come to every meeting, as well as the old standbys who are at almost every meeting, and the people who have attended but who dropped out because they were at a point where they were confident enough to handle it. Later something happens and then all of a sudden they come back to the meetings again. If we have a speaker or program, I limit it to no more than a half an hour, because although the speakers are helpful, people tend to learn more by talking about each other s shared experiences than from listening to one speaker. Jersey Shore University Medical Center: While I act as a coordinator and facilitator, a guest speaker frequently attends. Guests might include one of our electrophysiologists, a representative from one of the device companies to discuss technological issues, an exercise physiologist or physical therapist to discuss exercise guidelines, or a dietician or nutritionist to discuss healthy eating habits during the Thanksgiving and Christmas holiday season. One of our nurse practitioners has developed a cardiac or chair yoga program that many of our attendees enjoy. Medication and symptom management are also recurring topics. Meetings are very informal. While scheduled to last for two hours, meeting times may be shorter or longer depending on the group attendees. Meetings usually start with a general introduction, and then allow individuals to introduce themselves and briefly tell their story. This allows the new or potential device candidates to identify and ask questions to other group members who have had their device for some time. Light refreshments are served. Every effort is made to encourage participants to express their feelings and concerns while providing factual information. ICDSupportForum.com: I am a moderator on the board, and give support and advice when I feel I can help. The site is a community ran by its members. There is no one leader, no one man with all the answers. Although I am a moderator, I am really just a member like everyone else. When did your group get started? How many members did you have then? How many do you have now? Providence Hospital Medical Centers: The support group started 10 years ago. There were 35 invitations sent out and the group usually consisted of 8-15 members. We currently send out 1,200 invitations and we average 150 members. We would have more attending if transportation was not an issue. We always have some new members every meeting. Creighton University Cardiac Center: Jumpstarters was formed in 1990. At the time, we had only 20 members. Now we send invitations to over 500 people. We usually have about 80 that come (we have a large rural population who live greater than 100 miles away). Brigham & Women s Hospital: We have a core group of about 10 to 20 people who routinely come to each meeting. Then we have our transients, who are typically the new implants who just need some help getting adjusted in the beginning and later drop out after a couple of meetings. Therefore, at our meetings we can have anywhere from 30-75 people, depending on what the topic is for that night. Eastern Maine Medical Center: When we first got the group started, we probably had about 10 or 11 people that came to the meeting. Earlier on I began contacting cardiologists at Northeast Cardiology Associates to ask them to give me a call whenever there was going to be a new ICD patient, to see if they wanted to join our support group. Sometimes I would also try to get into the hospital and greet the patient before their implant; I felt it was helpful for these patients to see another ICD patient who was healthy, standing on their own two feet and able to carry on a conversation. It was important to make them realize that it is certainly possible to lead a full life after an implant. I would say now at a typical meeting we are running anywhere from 25 to 50 people. Jersey Shore University Medical Center: Our group started in 1992 with just a small number of attendees at first. Over the next few years, the number of attendees increased as new ICD patients and families joined the earlier ones. At that time we received financial support from the device companies and were able to serve full meals. A large core group of patients and families would come to each meeting along with new referrals. However, the format and character of the group has changed over the years. Industry reps have fewer resources to provide financial support, and we have fewer returning or core attendees. Along with new ICD patients, potential ICD recipients and their families are referred to the group to learn about the ICD device, how it works, and why they are candidates for this type of therapy. Having never experienced an arrhythmia, some patients are unclear about why their doctors recommend this therapy. ICDSupportForum.com: Our group was founded on October 9, 2006 with only 11 members, and has grown to 142 members in almost a year. I believe that with an online support community, members find it much easier to participate in the group from the comforts of their own home. 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. Providence Hospital Medical Centers: The most common anxiety is anticipation of the device firing. This anxiety occurs with patients who have never been shocked as well as those who have received a shock. The hardest obstacle for ICD patients to overcome is the fact that they have damaged hearts and have a higher chance of a sudden cardiac death. Even when we show a patient that the device saved their life, they have a hard time really grasping the severity of the situation and how blessed they are to have the opportunity to live another minute, hour, day. The therapy occurs so quickly, it is hard to convey that they were going to die. Some patients just have a hard time adjusting to the fact they may get a shock. It may not register that it will save their life. Their fear is that it will hurt and they cannot control when it will happen. Therefore, some patients are afraid to live or leave their safe environment of home. They are afraid to walk, work, exercise or live. The device is there to allow them as much of a normal life as possible. They have to want to live it. Creighton University Cardiac Center: Common anxieties and issues include fear of shocks and fear of getting therapy while in public. However, the most difficult obstacle that patients face when adjusting is the loss of driving for those who had syncope or cardiac arrest. Regarding other psychological, physical, and social adjustments, there are always concerns regarding work and the ability to return to work. Sometimes this is related to the device or their arrhythmia. For example, we have had patients who welded for a living who could not return to work. We also have had people whose job required a commercial driver s license (CDL), and they were unable to return to work. Brigham & Women s Hospital: The most common anxiety that patients experience is the fear of ICD shock. Many of the new patients want to know what a shock feels like, so this question comes up routinely. Over the past few years patients have verbalized concerns about hardware performance, due to the device recalls that were publicized in 2005 and 2006. We actually dedicated an entire support group meeting to the topic of device recalls. We had our physicians as well as industry representatives present to field patient s questions and concerns. We spent a lot of time discussing the difference between an advisory and a recall. Eastern Maine Medical Center: As far as common anxieties, they certainly run the gamut. I can tell you from my own experience that while you are on the cardiac unit of the hospital, you are comfortable and feel safe because there is somebody there checking to see if everything is alright. However, then they send you out into the world, and the doctors and the nurses and the rehab people typically do not have much time to answer all the questions you may have. You can feel very alone, asking yourself what s going to happen? Of course, the biggest issue that everyone fears is what does a shock feel like? The doctors tell you the device may shock you, so you wonder if it will be a big shock or a little shock. I would say probably for the first three weeks after my implant, whenever I would go out for my walk, I never went too far from my house. Finally you just have to say to yourself wait, is this thing going to control me or am I going to control it? What I try to remember is that if something dreadful were to happen, I ve got this safety device to keep me alive; therefore, if I experience a tachycardia, then there is an onboard switch right there that s going to save my life. You can tell yourself this over and over again, but you have to truly believe it. That is one of the ways the support group is helpful, because we have X number of people who have already gone through the sequence. Certainly the defibrillators are much better now then they were originally. There were no settings or zones in my original defibrillator back in 1993, and of course it was implanted in the abdomen at the time there wasn t room in the clavicle area to put them in. Therefore, anytime I get x-rays now, the technicians get a good laugh out of the fact that the wiring is still in there even though the defibrillator was removed it s like I m wired for sound! Jersey Shore University Medical Center: Frequently expressed concerns or anxieties include issues that have to do with the loss of health, loss of independence, and/or loss of control. Newer ICD patients often express worry about anticipating a shock: what it will feel like, when will it occur, and how can it be avoided. It is my experience that more women than men are concerned about changes in their body image due to the implant. In addition to psychological, physical and social adjustments associated with the ICD, many patients and their families are concerned about changes in their general health. Patients with heart failure frequently want to blame the ICD for the fatigue, sleep disturbance, difficulty breathing and other symptoms that they experience. While some patients have also expressed concern regarding device failure and recall issues, many accept ICD therapy as an accepted standard of care. I believe that this is at least in part due to media exposure of famous persons (e.g., Vice President Cheney) who have an ICD. ICDSupportForum.com: I think one of the biggest obstacles that an ICD patient might face is getting past the overwhelming initial shock of being told they need one of these devices. ICDs come with a tremendous amount of fear and what-if s for most patients, including the fear of being under informed and feeling alone in the fact that most don t know what life is like living with an ICD. Many fear that their device won t work when it is needed. The fear of receiving the first shock or receiving inappropriate therapies are among the constant concerns ICDers face. Physical adjustments are generally easy, as with anything, it just takes time to heal. Psychological and social adjustments, however, can be harder to deal with in some patients for various different reasons. How do you help patients deal with these anxieties? What is your advice on how to help patients relieve stress from having an ICD? Providence Hospital Medical Centers: We do reassure patients that the device is their own EMS in their chest. We ask them to try rehab to get started exercising and learn the possibilities. Every patient is different in feeling the freedom to live a full life. Some of our patients are OK with the device; it can be their loved ones that are the most stressed. They are waiting for the patient to keel over. We try to encourage family members to attend the patient s evaluation and ask questions. We are allowed to inform the patient of the testing results while they are at their ICD evaluation. We also explain how the device is programmed and what to do and expect if the device delivers therapy. Knowing how the device is set and what it will do helps a lot of patients. They are also given printouts of the device programming. This gives them knowledge and a feeling of a little control. Creighton University Cardiac Center: We used to have existing patients come visit with them while they were still hospitalized. Now with HIPAA regulations, we cannot do this anymore. Currently, we offer patients a large amount of education. In addition, to help patients relieve stress from having an ICD, we recommend exercise. They all should be doing some sort of exercise program, and this will help with their stress. Also, we encourage attendance at our support group, so they meet others in their same, or similar, situation. Brigham & Women s Hospital: As I mentioned before, we ve done many stress management talks and had presentations from the Benson Mind/Body Medical Institute about stress management techniques such as visualization and biofeedback. However, this is not considered a group therapy type format, so if someone is experiencing a lot of anxiety and/or fear related to the device or receiving a shock from the ICD, I will refer them for individual counseling. These patients typically need some type of pharmacotherapy to help them get through that phase. There are different tactics that work for some patients and not for others. However, I think my role is to help the patients understand the basic concepts of anxiety management and to help the patient return to specific activities that will bring them pleasure (e.g., playing golf or knitting), which helps facilitate a faster psychological recovery. Eastern Maine Medical Center: It s all about realizing that you re not alone and other people have gone through this. People can better identify with other people who ve experienced similar problems. When they see that fellow patients are carrying on an active and productive life, then they feel like they can do it, too. It is one of the things I make very clear at the start of each of our meetings, the fact that doctors from a medical point of view know exactly what s going on in the device, but they don t know what the psychological effects are as far as day-to-day living. When I had my first defibrillator, I d roll over in bed at night and think I had a watermelon in my stomach it felt that big! Doctors cannot tell patients how it is to live with an ICD because they haven t done it. That is why it is important when you are able to talk with somebody else who is living 24 hours a day/7 days a week with an ICD they can tell you the things that happen and the things you might feel. Jersey Shore University Medical Center: We offer supportive education and networking with other device patients and their families who have learned to cope and make adjustments. Occasionally one of our group sessions will take a different format. A psychiatric nurse practitioner and I will divide the group in two. One group will be the person with the device and the other group will include the patient's family member, frequently the spouse. Each group will express their concerns and discuss their experiences with other members of their same group. This seems to be helpful for both groups, and core group members have requested this format be repeated. ICDSupportForum.com: I try to remind someone who is having a hard time adjusting to the ICD life that their life is not over. Most start to feel like they are invalids, that they have no meaning and can t enjoy the things that they used to. Lifestyle adjustments are harder to deal with in some people than others, and that can play a big role on how anxiety can differ from person to person. I believe that knowing you have a community designed just for you and what you are going through gives them a sense of hope and reassures them that they are in fact not alone. I remind them to try to enjoy their life and look for the positive things that are in it. What is the most memorable or bizarre story you ve heard from an ICD patient? Providence Hospital Medical Centers: A patient can be shocked several times if they go into a life-threatening rhythm. I had a patient that came into the clinic after passing out and receiving shocks. He was laying in the bed and I was standing next to him interrogating the device. I printed out the episode which told me that it had delivered the last shock available for that episode, which was a total of 7. As the EKG printed out which was stored in the device, I watched in horror as each shock showed his heart rhythm deteriorating. The patient had indeed gone into a rhythm that showed he was dying. I started crying. The patient touched my hand and said, "Don't ever cry if you hear I have died. That was the most peaceful, beautiful moment of my life. The only reason I came back is because I'm not ready to leave my wife. Death is truly a beautiful experience." I have tried to remember this whenever we lose someone. Creighton University Cardiac Center: One patient described getting an ICD discharge while at a casino. The patient thought someone had punched him in the back. He swung around, leading with his fist, only to find no one there. Eastern Maine Medical Center: There was one individual who was in his local community driving down the street, and the next thing he knew, he was in an ambulance heading for the hospital. He had had a tachycardia and gone into sudden cardiac arrest while driving, smashing right into a telephone pole. Fortunately, an EMT in a nearby car saw what happened and rescued him. If he hadn t been right there and knew what to do, then the man would have died right there. I thought the circumstances of that story were very interesting. ICDSupportForum.com: There are many unique stories in the community, but there is one that I would like to share with you. It comes from one of the site moderators, Jennie Mendoza. She suffers from a condition called hypertrophic cardiomyopathy (HCM). HCM is a congenital heart disease that attacks entire family lines. Her first son was diagnosed early on, but his doctors never sent him to have an EP study done to determine whether or not he needed an ICD. He very much needed the ICD. He was 6 years old when his heart went into ventricular tachycardia, and he collapsed on the playground at school. The school was not equipped with an AED, and paramedics were unable to reach him in time. EMTs arrived on the scene, but CPR and their defibrillator was not enough to bring him back. Everyday she continues to mourn the loss of her son. Please visit his online memorial at www.michael-georgia-jr.virtual-memorials.com. Have any of your ICD group members experienced a phantom shock? What is your advice on helping patients who may experience these? Providence Hospital Medical Centers: Many of our patients have experienced phantom shocks. They usually occur when the patient is drifting off to sleep and they wake with a start. They think it is the device and call for an interrogation. We tell patients, phantom shocks or real shocks we want to hear from you and see you. They feel better knowing we don't think they are making something up. Phantom shocks are very real to them. We support them and tell them to come in and we'll figure it out together. Creighton University Cardiac Center: Yes, we hear about this frequently. We have seen it often, mostly when the patient is sleeping and has awakened, thinking they got a shock. We tell them that this is normal and, in our experience, decreases and resolves the farther out they are from implantation. Brigham & Women s Hospital: Sure, that is pretty common. This is what is medically referred to as a hypnogognic response, which typically occurs when people are falling off to sleep; they startle themselves awake and think their device has gone off. This is generally the scenario in which it happens very rarely is there a conscious person who thinks that they ve gotten a phantom shock from their device. Another scenario might be a VT storm during which the patient receives multiple shocks. These patients experience a true PTSD, after which they are highly sensitized to their device. Eastern Maine Medical Center: Yes, we ve had individuals who said they experienced phantom shocks, yet when they go to have their device interrogation, there were no events. Anyone who has had any serious medical procedures done will relate to you these certain things, showing that the mind is a very wonderful organ, but my goodness, does it play tricks on us! I had my first heart attack 15 years ago, but even today if I experience any of those same heart symptoms, my mind automatically thinks it is a heart attack, because of the symptoms that were present at that point. Your mind convinces you that you are having another heart attack, even though you are not. Jersey Shore University Medical Center: Yes, members of our ICD group have experienced phantom shocks. We listen and demonstrate empathy. ICDSupportForum.com: There are some members in the community who have experienced the elusive phantom shock. Not having experienced one of these yet myself, I personally wouldn t quite know how to deal with it if it were to happen to me. However, I have witnessed other members giving advice to each other on this particular issue in our community. After you have made absolute sure with your physician that it was indeed a phantom shock, talking with some sort of counselor or psychologist has shown results in reducing the symptoms of phantom shocks in some patients. An increasing amount of literature is addressing end-of-life issues for ICD patients. Is this addressed at all at the meeting? Providence Hospital Medical Centers: We do not address end of life unless the patient specifically wants to discuss it. We don't address it because we have no idea how long any of our patients have with us. Those patients who are very ill can hang in there. We believe in the spirtual approach that God did not notify us that it is your time. Therefore, we take every step together and new technology is always on the horizon and amazing. If a patient decides they are ready, Dr. Machado, the patient and the patient's family decide together the best pathway. Even when we are told a patient is terminal, we wait for them to decide. It is their life and their death. Creighton University Cardiac Center: No. This is done on a one-to-one basis. Jersey Shore University Medical Center: No, not usually. Why are ICD support groups so important? Providence Hospital Medical Centers: These are special patients. They are of all ages, social status, religions and color. The common ground is sudden cardiac death. The knowledge that every second could be their last can be profound. I love working with these patients. Creighton University Cardiac Center: It allows patients to meet with other patients in the same or similar situations. We can provide them with valuable information, but since we do not have a device, we have not lived through the same experiences that other patients have. Brigham & Women s Hospital: I think they are important because of the peer support they offer which reminds me of the old Indian proverb about walking a mile in my shoes. Patients understand each other better because they share a unique experience. We, as health care professionals, can provide our patients with educational information and teach them about how their device works and help them understand why they have it. However, only someone else with the device can tell them what it is like to live with it and what it is like to get a shock. Therefore, peer support is very important. It also provides social interaction; some may not have families or friends who understand, so it gives them a sense of community. Jersey Shore University Medical Center: The short length of an in-hospital stay does not allow patients and their families the time to absorb or integrate all the new information about their ICD. They don t have enough time to address feelings about their diagnoses or ICD before going home. Our patient support allows a continued connection. ICDSupportForum.com: ICD groups are important because it lets the ICD patients know that they are not alone in what they are going through. Whether the group sits down and meets once a month or they have an Internet site designed just for them, they are equally as important. Support groups provide much needed answers to the new ICDers who think they are alone, and give the veterans a chance to help someone new to the ICD world. Many times doctors are not very good at giving a lot of support or providing answers to their questions. The site provides a sense of home, a type of family that you just can t help but to love. Is there anything else you d like to add? Brigham & Women s Hospital: Looking towards the future, I hope we will be able to make available a support group for patients who may not be able to physically attend. We are in the process of developing a virtual support group that will allow patients to ask questions of health care providers who specialize in device management. We already have a website for our patients; this includes videotaped lectures and newsletters that they can review. In addition, we have a patient directory that enables our patients to stay in touch between meetings. It is not necessarily all about the support group meeting itself, but about giving patients some sense of continuity in between the meetings to provide ongoing support. We re trying to get the patients back to their routines. I always tell patients that the important thing to remember is that the device was put in to enable you to go on with life not to disable you. Eastern Maine Medical Center: There used to be a time constraint where people would have a week or so to be in the hospital after their procedure. Now they check in, the defibrillator is implanted, and if not that night then the next night the patient has already gone home. We have a new cardiologist coming to our hospital, and I m hoping that this new doctor will impress upon his nurses and staff the need to at least talk with the patient and see if they want to talk with someone after the procedure. I know that when patients are released from EMMC they are given information about defibrillators, and my name and telephone number is in there with that information. It is important to note that the more work that is done by individuals in the support group means less work that is going to be handled by nurses and doctors who may be too busy, and if we can help unload the burden, that would be beneficial to everyone. I have talked with many people over the years, and it seems that some people who go through this have minimal anxiety, whereas others are absolutely scared to death. I just want to make sure everyone is completely at ease at our ICD support group meetings. It may take a couple of meetings for some of them to ask questions, while others jump right in and open up at the very beginning. We try to keep humor in the meetings, too, because I m convinced humor is an important part of life. Basically, I wanted to help any way I could, and coming from my background as a guidance counselor, I just like working with people anyway. For more information about these ICD groups, please visit: https://www.stjohn.org/Providence/Specialties/Heart/ICDSupportGroups/ https://thecardiaccenter.creighton.edu/ www.brighamandwomens.org/icdsupportgroup For the EMMC group, please email: bpayson2@verizon.net www.meridianhealth.com/index.cfm/NewsAndMedia/Events/Detail/67.cfm www.ICDSupportForum.com