EP Lab Digest - September 2007 - (Page 14)

OUTSIDE THE EP LAB SEPTEMBER ICD Patient Support Groups Compiled and edited by Jodie Elrod upport groups for device patients exist at many hospitals around the country. In this article, we spoke with several leaders of such groups, including: Michele Robinson, RN and Christian Machado, MD, Director of Cardiac Electrophysiology and Cardiology Fellowship at Providence Hospital Medical Centers in Southfield, Michigan; Timothy R. Ryan, MS, APRN, NP-C from Creighton University Cardiac Center in Omaha, Nebraska; Julie Shea, RN, MS from the Longwood Medical Area ICD Support Group, a collaborative effort between Brigham & Women’s Hospital and Beth Israel Deaconess Medical Center in Boston, Massachusetts; Burt Payson from Eastern Maine Medical Center in Bangor, Maine; Nancy Bowe, RN, from the Jersey Shore University Medical Center in Neptune, New Jersey; and Christopher Jensen from “www.ICDSupportForum.com”. S 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. 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 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 “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.” http://www.ICDSupportForum.com 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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