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Learning About Living Well With Congenital Heart Disease

How can congenital heart disease affect your life?

With congenital heart disease, you may be used to doing the things that help keep your heart healthy, like taking medicines. There are many types of heart problems. Some are more severe than others. Yours may affect your life a lot or very little.

There are things that everyone with congenital heart disease can do to stay healthy and have a full and active life. These include getting regular checkups and having a heart-healthy lifestyle. You might also have unique decisions to make about things like birth control and pregnancy.

How can you live well with congenital heart disease?

Here are some things you can do to help you live well when you have congenital heart disease.

  • Get regular checkups. Adults who have congenital heart disease need routine checkups. Be sure you have a primary care physician. You might also need to see your cardiologist regularly, such as once a year.
  • Prevent endocarditis. You may have a higher risk of an infection in your heart. Talk to your doctor about your own risk. You may need to take antibiotics before certain dental or surgical procedures to prevent infection. Also, take good care of your teeth and gums.
  • Be physically active. People with heart disease can be active and get regular exercise. Most don't have to limit exercise. But some may need to restrict the type or intensity of exercise. This depends on the type of heart problem and how severe it is. Your doctor can tell you if you should limit activity or sports. But if you do have restrictions, you can still be active and enjoy a healthy lifestyle. Work with your doctor to make an exercise program that is enjoyable and safe for you.
  • Have a heart-healthy lifestyle.
    • Eat heart-healthy foods. These foods include vegetables, fruits, nuts, beans, lean meat, fish, and whole grains. Limit alcohol, sodium, and sugar.
    • Take your medicines exactly as prescribed. Call your doctor or nurse advice line if you think you are having a problem with your medicine.
    • Lose weight if you need to, and stay at a healthy weight.
    • Don't smoke.
    • Manage other health problems such as high blood pressure, high cholesterol, and diabetes. If you think you may have a problem with alcohol or drug use, talk to your doctor.
    • Avoid infections such as COVID-19, colds, and influenza (flu). Get the flu vaccine every year. Talk with your doctor about getting a pneumococcal vaccine. Stay up to date on your COVID-19 vaccines.
  • Let your doctor know if you're feeling sad or hopeless much of the time or if you are worried and anxious. Having a heart disease can be hard on your emotions. Treatment with counselling and medicine can help.
  • Think about making an advance care plan. This is a good idea for everyone, not just people with heart disease. An advance care plan is a legal form you fill out to say what kinds of medical care you want if you aren't able to make decisions for yourself.

Birth control and pregnancy

If you can become pregnant and don't want to be, think about using a form of birth control that poses the lowest risk to your health. Talk with your family doctor, gynecologist, or cardiologist about the right options for you.

If you have congenital heart disease or have a partner that has it, there are a few things you need to think about when planning a pregnancy. For example, what is the risk of passing a heart problem to your child? And if you have congenital heart disease and become pregnant, what are the possible health risks during pregnancy?

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse advice line (811 in most provinces and territories) if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

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