EP Lab Digest - September 2007 - (Page 15)

SEPTEMBER OUTSIDE THE EP LAB “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.” 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. 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. 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 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 815 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 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, 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. http://www.ICDSupportForum.com http://www.ICDSupportForum.com

Table of Contents Feed for the Digital Edition of EP Lab Digest - September 2007

The ICD Shock and Stress Management Program: Interview with Samuel F. Sears Jr., PhD Universal ECG Screening: The Advocate’s Perspective Contents Letter from the Editor Spotlight Interview: Morristown Memorial Hospital 10-Minute Interview: About the Mended Hearts and Mended Little Hearts Organizations ICD Patient Support Groups Email Discussion Group: September 2007 Technology: Only As Good As the Attitude Behind It! Electrophysiologic Management and Treatment of Chronic and Acute Cardiac Device Infection First Annual EP Lab Digest Salary Survey Events Calendar Industry News and Products

EP Lab Digest - September 2007

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