Adult Congenital Heart Defects (ACHDs): Common Problems to Anticipate

Heart Failure

Heart failure may be caused by the nature of a heart defect and changes in how the heart functions over time. Symptoms generally depend on which side of the heart is weak. (It is not uncommon to have weakness in both sides of the heart.)

When the weakness is in the side of the heart that pumps blood to the lungs, blood may back up into the veins and liver.

Symptoms may include:

  • Swelling in the legs and ankles
  • Soreness or bloating around the abdomen
  • Nausea or vomiting
  • Loss of appetite
  • Frequent tiredness

When the weakness is in the side of the heart that pumps blood to the body, fluid may back up into the lungs.

Symptoms may include:

  • A dry, hacking cough
  • Shortness of breath
  • Increased difficulty climbing stairs or walking uphill
  • Difficulty sleeping unless propped up on pillows or sitting up in a chair
  • Shortness of breath upon waking

Arrhythmias are some of the most common problems experienced by young adults with congenital heart defects. A number of circumstances can contribute to the development of arrhythmias, including scars inside the heart from surgery or the effects of natural aging on the original defect, both of which can stress or stretch the heart muscle or valves over time. Adrenaline surges from stress, excessive caffeine intake or alcohol consumption may also affect heart rhythm.

Palpitations (rapid, noticeable heart beats) are a sign of a change in heart rhythm. Other common symptoms of arrhythmia include:

  • Skipped or “funny” heart beats
  • Shortness of breath
  • Chest pain or tightness in the neck or shoulder area
  • Dizziness or fainting

Some arrhythmias can be managed solely with regular observation or medication therapy. More severe arrhythmias may require pacemaker implantation or cardiac resynchronization therapy (CRT), which works to coordinate contractions in the left and right sides of the heart.

Learn more about different types of arrhythmias and available treatments.

Chronic Cyanosis

Some patients remain cyanotic, or “blue,” despite defect repair or treatment. It is important for these patients to know their “normal” resting oxygen saturation measurement as well as the best place to check this measurement (e.g., finger, toe) so that they can share this information with health care professionals at the time of treatment.

REMEMBER: ACHD patients with cyanosis should always have an air bubble filter placed on all IV lines.

People born with heart defects such as septal defects and patent ductus arteriosus (PDA) before surgical repair was commonly used may also have chronic cyanosis. These defects allow extra blood flow to the lungs. Over time, the extra blood flow can cause permanent high blood pressure in the lungs (pulmonary hypertension). Pulmonary hypertension, in turn, can cause blood to flow away from the lungs, resulting in chronic cyanosis.

Liver Health and Screening

Hepatitis C
Many young adults received blood transfusions during surgical procedures in childhood, even if they were not aware of it (often as part of cardiac bypass). Because the blood supply was not routinely screened for hepatitis C prior to 1992, patients who may have received blood transfusions before this time are at risk and should be tested for Hepatitis C.

Hepatitis is an inflammation of the liver that is often caused by a virus. While there are several types of hepatitis, hepatitis C is the most common. In fact, it is the most common blood-borne infection in the United States.

Hepatitis C affects everyone differently. Some people develop serious problems within five years of contracting the virus. However, many people experience no symptoms after 20 years or more. Hepatitis C is a treatable condition. A liver doctor (hepatologist) can evaluate patients with hepatitis C and offer options for treatment.

Liver Problems Associated With Heart Defects
Any heart problem that causes high blood pressure in the veins of the liver may lead to long-term liver damage. This includes complex heart defects associated with an increased risk of heart failure. Patient who have undergone a Fontan or Mustard operation also may be at higher risk.

Talk with your provider about how to keep your liver healthy, including avoiding alcohol and certain medications and receiving hepatitis A and B vaccines.