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So you have congenital heart disease. Hopefully, you are seeing a board-certified adult congenital cardiologist. Some of you may be on a long list of medications, while others are on none. Some of you may have been given activity or diet, while others have none. You may have developed friendships with people who also have congenital heart disease. Perhaps you have the same defects but your heart care is very different. Even though your heart care is different there are some general guidelines that should be followed by everyone.

Regardless of the diagnosis, a better overall level of physical fitness may help you accomplish your daily activities. Additionally, your congenital heart defect does not make you immune from acquiring coronary artery disease or high blood pressure. That is why it is necessary for you to eat a nutritious diet, maintain a healthy body weight, and stay physically active (within the limits set by your cardiologist).

DO NOT SMOKE. Tobacco use in any form is harmful to everybody. It is particularly unhealthy for people with a congenital heart defect, who may already have a compromised circulation and/ or lower levels of oxygen being delivered to the body.

Illegal or illicit drugs should not be used. Marijuana, cocaine, amphetamines, and barbiturates will all affect your heart rate and could interfere with medications prescribed by your cardiologist.
Follow the recommendations made by your cardiologist:

  • Keep your appointments.
  • Take all prescribed medicines – discuss any side effects with your cardiologist. If they make you feel poorly discuss this with your cardiologist. Avoid stopping a medication without checking with your cardiologist.
  • Make sure you follow through on additional testing recommended by your provider. If you have questions why a test has been ordered know that your provider encourages open discussion. Don’t just skip it or not follow through.
  • Follow physical activity recommendations, including restrictions.
  • Make sure you have a primary care physician(PCP) who coordinates your care with your cardiologist.
  • Make sure all your doctors have a complete list of medications you are taking. This includes vitamins and supplements. This will help guard against drug interactions.
  • All surgical procedures – regardless of nature should be discussed with your cardiologist. Some anesthesia can affect your heart.
  • Make sure you have good oral care. See a dentist regularly. Bacteria can enter the bloodstream and cause damage to the heart structure. This is known as endocarditis. Ask your cardiologist if you need to take an antibiotic prior to dental procedures.

One of the most important things you can do for your general health, and more specifically your heart health, is to learn as much as possible about your congenital heart disease. This includes knowing your specific heart defect, any surgeries or procedures you have had. Always carry a list of your medications including how much, how often, and why you take them. DO NOT RELY ON YOUR PARENTS, CHILDREN, FAMILY MEMBERS, OR PRIMARY CARE PHYSICIAN OR ANYONE ELSE TO DO THIS FOR YOU.