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When to see a doctor
People with congenital heart disease need to adopt a team approach to manage their disease effectively. The team usually consists of three to five people in addition to themselves:
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A primary care physician (a family practitioner, pediatrician, or internist)
- A cardiologist specializing in congenital heart defects (who may be located in a specialized center)
- Possibly a local cardiologist, if the congenital cardiologist is far away
- A parent, spouse, or companion
Additional members of the team rotate in and out over time and may include a cardiac surgeon, general surgeon, gynecologist, obstetrician, or genetic counselor. Open communication among team members is fundamental to successfully managing congenital heart disease.
Many aspects of your lifestyle will need to be discussed with the healthcare team, including potential effects of over-the-counter medications, vitamins, herbal preparations, or prescription medications on the heart. You'll also want to discuss potential interactions between any drugs you might be taking for your heart defect and any of the above.
It is important to communicate any changes in your condition or lifestyle to your physician. Fever or other signs of infection (see endocarditis), increased fatigue, and shortness of breath all are reasons to contact a physician. Changes in the circulatory system resulting from corrected heart abnormalities can develop over a long period of time, so the first manifestations of these can be very subtle. When in doubt, get it checked out.
It's important for people with heart defects to get regular checkups. The frequency and components of these checkups will vary according to individual circumstances, depending upon your defect(s), age, and overall health. These checkups may include blood tests, standard electrocardiogram, 24-hour ambulatory electrocardiogram, chest X-ray, echocardiogram, or exercise testing.
Children. Periodic heart checkups with a pediatric cardiologist are necessary to evaluate the progression of the condition or verify the continuing success of the treatment. The frequency of checkups depends upon complexity of the defect and treatment plan. More frequent checkups are necessary just after diagnosis, around surgery, and for children with complex defects.
Adults. The frequency at which one sees a cardiologist with expertise in congenital heart disease should be determined on a case-by-case basis by one's health team. For example, a healthy adult with a simple defect, like a small ventricular septal defect or atrial septal defect, may need to see the specialist only once every five years. A more complex defect may require annual consultations. In either case, it is important for proper management of your condition to find a congenital cardiologist who will be available to consult with you and your local physician as necessary.
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