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Adult Congenital Heart Disease

Medically reviewed by Last updated on Mar 5, 2023.

What is adult congenital heart disease (ACHD)?

ACHD is a term used to describe defects in the structure of the heart. It may also be called adult congenital heart defect. Congenital means you were born with the heart defect. The defect may include a hole in part of the heart or narrowing of arteries connected to the heart. Blood may not be able to flow to or flow through your heart correctly. The defect may be mild or severe. ACHD should be monitored regularly, even if you do not have problems.

Heart Chambers

What are the signs and symptoms of ACHD?

You might be having symptoms for the first time as an adult. You might be having symptoms even if you had a heart defect repaired as a child.

  • Shortness of breath, or becoming tired when you exercise
  • Abnormal heart rhythm
  • Blue skin or nails
  • Swelling in your legs, ankles, or fingers
  • Feeling dizzy or faint

How is ACHD diagnosed?

Your heart defect may not be found until you are an adult. Tell your healthcare provider about your symptoms. Tell him or her if you have had the symptoms before, and how long they lasted. Your healthcare provider will examine you and listen to your heartbeat and breathing. If a murmur or other sounds are heard, he or she may use the following tests to check for CHD:

  • Blood tests measure the amount of oxygen in your blood. A heart defect can lower your blood oxygen level.
  • An ECG records your heart rhythm and how fast your heart beats. It is used to check for heart enlargement and heart rhythm problems.
  • Echocardiography uses sound waves to form pictures of blood flow through the arteries of the heart. The pictures show all 4 heart chambers, including valves, the lining, and the aorta. Doppler is used to measure how fast blood flows through the arteries. This test is called TTE if the sensor is placed on your chest or abdomen. It is called TEE if the sensor is placed down into your esophagus.
  • X-ray, CT, or MRI pictures may show the size, shape, and function of your heart. You may be given contrast liquid to help your heart show up better in the pictures. Tell the healthcare provider if you have ever had an allergic reaction to contrast liquid. Do not enter the MRI room with anything metal. Metal can cause serious injury. Tell the healthcare provider if you have any metal in or on your body.
  • A heart catheterization is a procedure that helps diagnose and treat some heart problems. Healthcare providers can measure oxygen levels and pressures in your heart. They can also fix problems with your valves, blood vessels, or the walls of your heart during the procedure. A catheter is threaded into your heart through a blood vessel in your arm, leg, or neck. Contrast liquid is injected into an artery. Then x-rays of your blood flow are taken. Tell the healthcare provider if you have ever had an allergic reaction to contrast liquid.
  • An exercise stress test shows if your heart gets enough oxygen and blood flow while you exercise. You will be asked to walk on a treadmill. The speed of the treadmill will be increased slowly. You will also be hooked to an ECG machine. Healthcare providers will monitor your heart rate during the test.

How is ACHD treated?

Your healthcare provider may want to monitor your heart over time. You will need to have regular checkups. Your healthcare provider can tell you how often to go in, and which tests you will need. Any of the following may be used if your condition needs to be treated:

  • Medicines may be used to help your heart beat more regularly. Medicine may be given to get rid of extra fluid in your body. This medicine may make you urinate more often. You may also need blood thinning medicine to prevent blood clots. This medicine increases your risk for bleeding and bruising.
  • An implantable device can help your heart beat normally. A pacemaker can control your heartbeat. An implantable cardioverter-defibrillator (ICD) can make your heart beat in a regular rhythm.
    Implantable Cardiac Defibrillator (ICD)
  • A catheter procedure may be used to repair a defect. You might have had a defect repaired when you were a child, and it might need to be repaired again. A catheter is a long, thin tube. Your healthcare provider will move the catheter through a vein or artery until it is near the defect. To widen a narrowed area, a small balloon device attached to the catheter may be inflated. This may also widen a narrowed valve in the heart.
  • Open heart surgery may be needed to repair the defect if a catheter procedure cannot be done. You may need surgery to have a heart valve repaired or replaced. Surgery can also help repair blood vessels that did not form correctly. A heart transplant may be needed if the defect is severe and other treatments do not work. You may need more surgery over time.

What can I do to manage ACHD?

  • Do not smoke. Nicotine and other chemicals in cigarettes and cigars can cause heart and lung damage. Ask your healthcare provider for information if you currently smoke and need help to quit. E-cigarettes or smokeless tobacco still contain nicotine. Talk to your healthcare provider before you use these products.
  • Weigh yourself every morning. Use the same scale, in the same spot. Weigh yourself after you use the bathroom, but before you eat or drink anything. Wear the same type of clothing each day. Do not wear shoes. Keep a record of your daily weights so you will notice sudden weight gain. Bring the record to appointments with your healthcare providers. Swelling and weight gain are signs of fluid retention.
    Weight Checks THA
  • Maintain a healthy weight. Extra weight can cause your heart to work harder. Ask your healthcare provider what a healthy weight is for you. He or she can help you create a weight loss plan, if needed.
  • Be physically active, as directed. Physical activity, such as exercise, is important for heart health. Your healthcare provider can tell you how much exercise you need each day and which exercises are best for you. You may not be able to do some physical activities or sports. The decision may depend on the type of defect you have and if it was repaired.
  • Eat heart-healthy foods. Healthy foods include fruits, vegetables, whole-grain breads, low-fat dairy products, lean meats, and fish. Choose fish that are high in omega-3 fatty acids, such as fresh tuna or salmon. Limit foods that are high in fat. Your healthcare provider may also recommend you limit the amount of sodium (salt) you have each day. Ask for more information on heart-healthy and low-sodium diets.

  • Limit or do not drink alcohol as directed. Alcohol can increase your blood pressure. Limit alcohol to 2 drinks a day if you are a man, or 1 drink a day if you are a woman. A drink of alcohol is 12 ounces of beer, 5 ounces of wine, or 1½ ounces of liquor.
  • Keep your teeth clean and healthy. Get regular dental checkups and brush your teeth as directed. Cavities increase your risk for endocarditis (infection in the lining around your heart). You may need an antibiotic before you have dental procedures. The antibiotic can help prevent an infection caused by bacteria.
  • Talk to your healthcare provider about pregnancy. ACHD can cause certain problems during pregnancy. Women with ACHD should work with healthcare providers to plan and monitor pregnancy. Women may need to get a vaccine to prevent rubella during pregnancy. Both men and women can pass genes for certain congenital heart defects to their children. Talk to your healthcare provider about this risk.

Have someone call your local emergency number (911 in the US) for any of the following:

  • You have any of the following signs of a stroke:
    • Numbness or drooping on one side of your face
    • Weakness in an arm or leg
    • Confusion or difficulty speaking
    • Dizziness, a severe headache, or vision loss
  • You have fainting spells or unexplained falls.
  • You have sudden shortness of breath.

When should I call my cardiologist?

  • Your lips or nails turn blue.
  • You have a fever.
  • You have chills, a cough, or feel weak and achy.
  • You gain 2 to 3 pounds in a day or have new swelling in your ankles or legs.
  • You have questions or concerns about your condition or care.

Care Agreement

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your healthcare providers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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Further information

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