EP Lab Digest - September 2007 - (Page 16)

OUTSIDE THE EP LAB SEPTEMBER 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 “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.” 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. 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-georgiajr.virtual-memorials.com”. 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 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 http://www.ICDSupportForum.com http://www.ICDSupportForum.com http://www.michael-georgia-jr.virtual-memorials.com http://www.michael-georgia-jr.virtual-memorials.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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