EP Lab Digest - September 2007 - (Page 17)

SEPTEMBER OUTSIDE THE EP LAB 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. 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: http://www.stjohn.org/Providence/Specialties/Heart/ICDSupportGroups/ http://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 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 www.ICDSupportForum.com http://www.ICDSupportForum.com http://www.ICDSupportForum.com http://www.stjohn.org/Providence/Specialties/Heart/ICDSupportGroups/ http://thecardiaccenter.creighton.edu/ http://www.brighamandwomens.org/icdsupportgroup http://www.meridianhealth.com/index.cfm/NewsAndMedia/Events/Detail/67.cfm 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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