Even the term sudden cardiac arrest (SCA) sounds like a scary, heart related event that could happen at any moment! Knowing you have become an SCA survivor or are at risk for SCA may have changed your life in one way or another. Perhaps you previously played on athletic teams and have been recommended to stop playing while you await a life-saving device, such as an implantable cardioverter defibrillator (ICD), or perhaps you hear family members tell the story of “that time when your heart stopped…”
While SCAs may come out of the blue and could change your life, you have the power to decide how the cardiac event impacts your life. This entry hopes to provide some problem solving strategies on how to stay in the game of life with a heart condition.
Know the play book
Think back to your last cardiology appointment. Were you told to minimize activity or exercise? If you were, it may be helpful to get specific examples of activities you can engage in and activities you should minimize or avoid. If you were not given activity restrictions, it may be important to clarify this with your doctor. It is helpful to have your family in the exam room for this conversation so everyone is on the same page. Often times, teens come into clinic in disagreement with their parents about activity restrictions, with parents tending to feel more uncomfortable with their child being physically active and teens feeling smothered by parents checking in on their activity or setting limits. Ask questions during your doctor’s appointment about what you can do.
Find your position on the team.
If activities you prefer have been limited due to your health, find alternatives that can keep you active in the same social group. When you play a school or club sport, you tend to develop friendships with teammates. If daily practice were taken away from you suddenly, it may negatively impact your mood and make you feel left out or isolated. Ask your coach or friends if there are other ways for you to stay involved. Think outside the box. Can you help with creating drills for practice? Or being the team manager? What about scheduling fun activities with your friends off the field? – spending time between classes or at lunch, catching a movie, or grabbing a pizza after school.
Make a play
You do not have to sit on the sideline when it comes to managing your heart condition. Asking questions at appointments is a great way to learn more about your heart, but you likely have opportunities to make important plays every day. Medicines are often a helpful way to control aspects of heart health, such as keeping regular rhythm. It is important to take these medicines daily to decrease risk for SCA. Shifting from someone who is being told to manage their health to having an active role in daily tasks is often a difficulty, yet helpful shift to make. If you’re able to effectively manage your medication, it may buy you more independence with your family. Pill boxes and medication charts are great ways to keep track of medicines so that family members can be aware without frequent questioning or check-ins.
Adjusting to a medical condition can be tricky. It may mean you have to problem solve ways to shift your life and become comfortable with a “new normal”. If you notice changes in your mood, such as sadness or lost interest in activities you enjoy, or increased worry that is interfering with your daily life, ask your doctor for recommendations for a health psychologist or someone with experience helping other adjust to heart conditions. While you’re learning to manage your physical health, other concerns may pop up. Taking care of your whole self will allow you to solve problems and set future goals. What does winning look like for you?
If you’re looking for more tips on how to manage life with a cardiac device, please look at this clinic handout from the journal Circulation.
Dr. Katherine Cutitta is a pediatric psychology fellow at Baylor College of Medicine/Texas Children’s Hospital. Dr. Cutitta completed her Ph.D. in Clinical Health Psychology at East Carolina University where she was a member of the Cardiac Psychology Lab under the direction and mentorship of Dr. Sam Sears. She has a clinical and research focus in pediatric electrophysiology and hopes to continue to partner with organizations to aid in adjustment to pediatric heart conditions and activity management.