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Adult Congenital Heart Disease
Adult congenital heart disease (ACHD)
is a term used to describe defects in the structure of the heart. It may also be called 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. 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. A congenital heart defect should be monitored regularly, even if you do not have problems.
Common signs and symptoms include the following:
- 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
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.
Call your cardiologist if:
- 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.
Treatment for ACHD
includes regular checkups and monitoring throughout your lifetime. 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. You may need to take heart medicines for several years. Medicine may be given to help flush extra fluid from 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.
- Take your medicine as directed. Contact your healthcare provider if you think your medicine is not helping or if you have side effects. Tell him or her if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.
- 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.
- 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, he or she may inflate a small balloon device attached to the catheter. This will 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 problems in 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.
Go to cardiac rehabilitation (rehab) if directed:
Cardiac rehab is a program that will help you safely strengthen your heart. This plan includes exercise, relaxation, stress management, and heart-healthy nutrition instructions. Healthcare providers will make sure your medicines are helping to reduce your symptoms.
- 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.
- Maintain a healthy weight. Extra weight can cause your heart to work harder. Ask your healthcare provider how much you should weigh. He or she can help you create a weight loss plan if you need to lose weight.
- Exercise as directed. 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 per day if you are a man, or 1 drink per day if you are a woman.
- 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.
Follow up with your healthcare provider or cardiologist as directed:
Regular follow-up is important, even if you had a defect corrected when you were a child. You may need tests to check for problems from your heart defect or to check for new problems that should be treated. Write down your questions so you remember to ask them during your visits.
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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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