Heart Smart Guide for Young Patients With Cardiac Devices
Learning that you have a heart condition can be scary and confusing. The purpose of this patient page is to answer questions you may have about how to confidently manage your condition and your new device. Strategies to help you stay healthy, deal with stress, and return to school and other activities can help you feel more confident. Learning about what to do in different social situations can help you prepare to talk to friends and other people in your life about your device. If you do not find all your answers here, keep asking questions and engage your loved ones in the process. Your cardiac care team can help, along with other key people in your life.
Get Heart Smart
The first step in getting used to life with a cardiac device is to get heart smart! Learning about your cardiac disease and your device can go a long way, especially when it comes to improving your confidence. The best way to start this process is to learn about your device and why your care team decided you needed one. Cardiac devices are implanted for a couple of reasons. Devices can be used to stop dangerous heartbeats with a shock or add heartbeats when they are missing or slow. They can also be used to pace a heart out of a dangerous heartbeat (arrhythmia) with small electric signals.
If you have a pacemaker, you can feel comfortable knowing that your pacemaker will do its job automatically. If you have an implantable cardioverter defibrillator (ICD), it will also do its job automatically, but you will also want to know what to do if it provides a shock. Another patient page, My Child Needs or Has an ICD: What Should I Do? has even more information about making a shock plan.1 Having a shock plan is like having a fire drill at school. Being prepared for a cardiac event can relieve a lot of worry.
Understanding your medications can also help you feel confident. Medications give your heart help to do its job easily. Learn what your medications are and why you take them. Your cardiac care team is there to answer the questions you ask. Taking your medications on time and the exact way your care team tells you helps you and your heart. Your cardiac device is the second line of protection. Your device is a safety net to catch arrhythmias that your medication does not fix. We know that if you do not like the way your cardiac medications make you feel, you are less likely to take them regularly. Let your cardiac care team know about any side effects from the medications that you do not like. Sometimes small adjustments in the medications can make a big difference.
Manage Device Stress
Cardiac patients may be at risk for having difficulty with worry and sadness. If you are worried about your device, you may need to spend more time getting heart smart and learning about your condition and device. Just as going to school prepares you for a job, learning about your cardiac health will help you take charge of your health. The more you know, the fewer worries you will have.
If you are feeling down or sad because of your heart or device, tell someone. Whether you tell a friend, sibling, parent, or a doctor, people want to know how you are feeling. Your cardiac care team might have suggestions to help manage your feelings. They may also be able to refer you to a counselor or cardiac psychologist for some booster sessions, while you adjust to your device. Your feelings are connected to your behaviors.
A good strategy for managing your feelings is taking care of yourself; this is called self-care. Self-care includes (1) eating a healthy diet, (2) getting regular physical activity, (3) spending time with family and friends, and (4) doing other activities you enjoy. This is a simple checklist you can use to remember the key ingredients to self-care. Do not be surprised if you experience worry or sadness while managing your health; we all need a tune-up every once in a while.
Sometimes stress goes along with having a cardiac condition and device. Keeping strong relationships and building new ones can help you deal with stress. Relationships can be valuable because they give you people to talk to and help you handle stress. Sometimes relationships can be tricky to handle. You may feel confused or embarrassed about telling other people about your device. You may find that some people, like your parents, treat you differently now that you have a device. The best way to handle all of your relationships is to communicate. Let your parents and other people know how you feel. Feelings of sadness, worry, and stress are common in patients who have a cardiac device, and your support system may be able to help you adjust. If you have a question about your device, you should ask your doctor or someone else on your cardiac care team. Your doctors are there to help you and can be a great source of information!
Take charge of your health! A strategy to strengthen relationships is to have open and honest conversations about your condition and device. When others do not know about your device, you have the chance to be the expert and explain your device to them. You should only share as much as you are comfortable sharing. It can be helpful for some people to know about your device (Figure). For example, letting your teachers know about your device can be helpful if you have an ICD shock or if you have to miss school for doctors’ appointments.
Returning to activities may be one of the biggest challenges that young people with cardiac devices face. After you have healed from surgery and your doctor has cleared you to be active, the best thing you can do is get back to doing the things that you enjoy! Research with children with ICDs has indicated that as many as 84% of kids avoid activities regularly.2 Some heart conditions may limit your activity. Check with your doctor to see if your activity should be limited. In most cases, you can go back to playing many sports, going to recess, participating in physical education class, and having fun! Physical activity is good for your heart and will not hurt you or your device. Table 1 details a set of steps that might help get you back to some of your favorite activities.
Just like some of the other situations we have discussed, the best way to handle things going on at school is to communicate! A strategy for communicating with your school is to stay in contact with your teachers about absences, home assignments, and any challenges you face at school. Your school will probably want a doctor’s note to say why you have missed or will miss school for appointments with your cardiac team. Talking to your teachers, staff, school psychologist, counselor, nurse, and other important people at school about what is going on with you will help them support you as you catch up and get used to being back. If classwork seems harder or things that used to come easily to you are more difficult, it is ok. It may just mean that you need some new strategies to help you be successful in your classroom. There are plenty of people at your school that can help!
Now that you have read through the steps to device living for young patients with a cardiac device, take a step back and see which of these steps may need more attention for you. Keeping these steps and simple strategies in mind will also help manage your stress (Table 2). If you have a plan for managing your medical care, device stress, relationships, activity, and school concerns, you can use what you know to put your plan into action. Your medical care team wants to see you succeed and return to the places and activities you enjoy.
Dr Sears serves as a consultant to Medtronic and has had research grants from Medtronic in the past 2 years. Dr Sears also has received speaker honoraria from Medtronic, Boston Scientific, St. Jude Medical, Spectranetics, and Biotronik. The other authors report no conflicts.
The information contained in this Circulation Cardiology Patient Page is not a substitute for medical advice, and the American Heart Association recommends consultation with your doctor or healthcare professional.
- © 2015 American Heart Association, Inc.
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