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From the Winter 2003 Issue
Learning Center
Finding the Connections You Need
If you have a cardiac device, you’ve gotten past the first step. While that may be a great relief, it’s on to the next step. To help you learn what resources may be available to you, LifeBeat Online has interviewed Jane Kruse, RN, BSN, at Northwestern Memorial Hospital in Chicago for her perspective on support groups. Support groups, like the one run by Kruse, are available all over the country to teach and support patients and families about living with a cardiac device.
“It’s important for patients to discuss their concerns. Be open and honest with your caregivers or family,” says Kruse. More and more patients every day are getting cardiac devices, including implantable cardioverter defibrillators (ICDs). They can help you live a longer, healthier life. According to the MADIT II study, heart attack survivors treated with an ICD and medication may have a reduced risk of death. This is all good news. But patients need to know what their resources are. Know when to ask for help.
Every patient is different. And everyone’s concerns are different. Some may be worried about ICD shocks. Others may be concerned about sexual issues or exercise. Family members often have their own concerns, too.
Patients and family members often attend support groups. “A spouse can benefit just as much as the patient. Both parties need to learn to trust the device,” says Kruse. “Nipping anxiety and dealing with it is important. It can develop a life of its own. The important thing is to get back to life and do what you need to do.”
More and more support groups go beyond support. A psychologist may attend many groups. But many patients use a support group simply for information and networking. More and more that’s what support is evolving to—sharing information with nurses and other people like you. At Northwestern Memorial Hospital, the focus is on adjusting. “Knowing your resources and not being afraid to use them…that’s the most important thing,” says Kruse.
So why are more patients and families going to support groups?
One reason is that they are now available. In the late 80s and early 90s there were fewer people with devices. So, there were fewer support groups. The devices are now proven to extend life. “The patient population is ballooning, so more hospitals offer support,” says Kruse.
Support groups are about socializing, learning, and networking. They help you develop relationships with people like you. According to Kruse, “We’ve connected so many people. We’ve even reconnected people. Friends that haven’t seen each other in years show up. They both have devices and share the experience of living with an ICD. They have even more in common.” But support groups also introduce you to other healthcare professionals, like physiologists or dietitians, that you may want to contact in the future.
How can you find a support group in your area?
Depending on where you live, you may have more access to a support group. Most large hospitals have them. However, smaller hospitals have them too. The people who check your device can be a great resource. They often know about support groups in the area. They may even recommend one at another hospital. And other hospitals are usually more than willing to have you join their group.