Heart Failure and Adult Congenital Heart Disease

An OHSU cardiology specialist reads an echocardiogram chartHeart failure is a common complication of adult congenital heart disease. OHSU cardiologists who have been trained in congenital heart disease are alert to signs of heart failure in patients with ACHD.

Many congenital heart conditions weaken the heart muscle over time. That's why, as an ACHD patient, you run a higher-than-average risk for heart failure. Heart failure is when your heart is too weak to pump enough blood throughout your body.

Symptoms of heart failure

The symptoms of heart failure are similar to those of many congenital heart conditions. Symptoms may include:

  • Extreme fatigue/fatigue that increases as days go by/ becoming tired very easily
  • Feeling out of breath from simple daily activities
  • Feeling out of breath in bed at night; needing extra pillows behind your head to help you breathe
  • Swelling in your ankles or belly
  • Feeling like your heart is racing, or has skipped a beat

None of these symptoms necessarily mean you have heart failure. In fact, all of them may simply be symptoms of your congenital condition.

But if they seem new or unusually severe, make an appointment with your heart specialist immediately.  Heart failure is best treated if we see you early.

Tests

In OHSU's congenital heart disease clinic, your cardiologist will perform simple tests to check for heart failure. These tests may include blood work, an electrocardiogram, and cardiac ultrasound imaging.

Depending on the results of these initial tests, your heart specialist may perform further testing, such as a treadmill exercise test or cardiac MRI imaging.

If you do not have heart failure, we can find this out and let you know. If you have heart failure, we can treat it.

Treatment

Treatment for heart failure includes managing the amount of fluid in your body. Sometimes, you can accomplish this yourself simply by drinking fewer liquids and eating fewer salty foods. (Salt causes your body to retain fluids.) We also have medication to help your body flush out fluids. Balancing your body fluids can relieve symptoms and help you feel better.

Medication may also be prescribed to strengthen and stabilize your heart rhythm. If you already take medication for your congenital condition, the heart failure medication your heart doctor prescribes will be safe to take at the same time.

In very severe heart failure cases, heart transplantation can be done.

Managing heart failure at home, along with your congenital condition

In addition to your normal routines for managing your congenital condition, if you have heart failure, you should:

  • Weigh yourself every day and let your cardiologist know of any sudden significant changes in your weight.
  • Maintain a low-salt diet
  • Not drink excessive amounts of liquids
  • See your heart specialist at least once every three to six months.