Adult Congenital Heart Disease

Adult congenital heart disease covers mild to serious conditions that affect how blood flows through different parts of your heart, like your:

• Blood vessels.
• Heart chambers.
• Heart valves.

Sometimes, you may not feel symptoms until adulthood, or for some people, during your pregnancy. Or maybe a childhood condition resurfaces. Once diagnosed, you’ll need lifelong medical care so we can keep a close eye on your heart.

What to expect at your first visit

Learning you have problems with your heart can be unsettling — especially if you haven’t had many symptoms. That’s why your provider will sit down to talk with you. They’ll listen to your concerns, answer your questions and ask a few themselves. They’ll want to know:

• What are your symptoms, if any?
• How long have you had these symptoms?
• Have you had any testing before this appointment?
• What other health conditions do you have?
• Has anyone in your family had a heart condition?

Your provider will also do a physical exam and order tests, like:

• Cardiac catheterization.
• Chest X-ray.
• Echocardiogram (Echo).
• Electrocardiogram (EKG).
• Electrophysiology test.
• Exercise stress test.
• Heart CT scan (computed tomography scan).
• Heart MRI (magnetic resonance imaging).
• Blood oxygen level (pulse oximetry).
• Transesophageal echocardiogram (TEE).

Meet Our Adult Congenital Heart Disease Team

We use a team approach to treat adult congenital heart disease. That means you’ll have providers from many different specialties all working together to pinpoint a diagnosis and give you comprehensive, personalized care. Your team may include:

• Cardiologists.
• Cardiothoracic surgeons.
• Interventional cardiologists.
• Electrophysiologists.
• Pulmonologists.
• Anesthesiologists.
• Nurse practitioners.
• Obstetricians.
• Gynecologists.
• Radiologists.
• Physical therapists.
• Occupational therapists.
• Social workers.
• Psychologists.
• Genetic counselors.

Cleveland Clinic cardiology providers focus on what you need to treat and manage your unique heart diagnosis.

Some congenital heart conditions may not need treatment other than watchful waiting. This means you’ll have regular checkups to make sure your condition doesn’t get worse. Other times, you may need different types of treatment. The kind you have will depend on the type of condition and how bad it is.

Medications

Some types of adult congenital heart disease respond well to medications. Depending on your diagnosis, your provider may prescribe drugs like:

• ACE inhibitorsand calcium channel blockers.
• Anticoagulants.
• Beta-blockers.
• Water pills (diuretics).

Catheter-based treatments

We offer catheter-based treatments for ACHDs — like atrial or ventricular septal defects, heart valve replacements (including the pulmonary valve) and ventricular or atrial arrhythmia(s) during adult congenital heart disease. Some of these treatments include:

• Cardiac catheterization.
• Angioplasty or stenting.
• ASD closure or VSD closure.
• Transcatheter valve replacement, including the pulmonary valve.
• Catheter ablation.
• Valvuloplasty.

Implantable devices

If ACHD causes problems with your heart rate or heartbeat, we may use an implantable cardiac device. You may get a pacemaker or implantable cardioverter defibrillator (ICD). These devices use electrical impulses to help control how your heart works.

Surgery

You may need heart surgery or heart valve surgery to treat some adult congenital heart diseases, like:

• Bicuspid aortic valve disease (BAVD).
• Ventricular septal defect (VSD).
• Partial anomalous pulmonary venous return (PAPVR).
• Atrial septal defects (ASD).
• Pulmonary valve disorders.
• Tricuspid valve disorders.
• Mitral valve disorders.
• Coronary mitral valve disorders and anomalies.

We try to do minimally invasive heart surgery when possible. Minimally invasive surgery often means a faster recovery time and less scarring. Some conditions may require us to do open-heart surgery, which means you’ll have a larger incision (cut) and a longer recovery.

If you have serious adult congenital heart disease that can’t be repaired, you may need a heart transplant. Your care team will go over all options with you.

Living With Adult Congenital Heart Disease

Because you’re born with congenital heart disease, you can’t prevent it. But you can take care of yourself while you manage your condition. One way is to keep all of your cardiology appointments so we can check in on your progress.

It’s also important to lead a healthy lifestyle, like eating a heart-healthy diet, exercising regularly and avoiding tobacco. If you need to quit smoking, we’re here to help.

Did you know your teeth play a role in heart health? Tooth and gum infections may promote bacteria that can hurt your heart (bacterial endocarditis). So, it’s important to take good care of your teeth and see your dentist regularly. You may also want to ask your cardiology providers if you need to take antibiotics before dental work.

Traveling for Heart Care at Cleveland Clinic

When you’re diagnosed with a heart condition and need to travel to Cleveland Clinic for care, the last thing you want to worry about is making those arrangements. No matter if you’re coming to us from another city, state or country, we want to make it less stressful for you. From finding your way here from the highway or airport to getting a nearby hotel room, we make traveling to Cleveland Clinic as easy and convenient as possible.

And if you’re coming from overseas, you don’t have to navigate Cleveland Clinic alone. Our experienced and compassionate Global Patient Services (GPS) team will connect you with the healthcare providers you need, help you schedule appointments, provide language translation services and even coordinate follow-up care for you back home.

Taking the Next Step

There are many things to think about when you learn you have adult congenital heart disease. You may worry that you have to make big changes to your life. Or wonder if your heart condition will get worse. We’re here to ease your fears, answer your questions and help you understand what to expect as we make a diagnosis. And once we do, we’ll work with you to plan the most personalized treatment and help you get back to a full, active life.