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Care for Adult Congenital Heart Disease at University of Colorado Hospital

Why Choose Treatment for Adult Congenital Heart Disease at University of Colorado Hospital?

University of Colorado Hospital has one of the top adult congenital heart disease programs in the nation.

Our partnership with Children's Hospital Colorado also makes it easy for children with a congenital heart defect to receive consistent care when they become adults.

Adult Congenital Heart Disease Clinic

The Adult Congenital Heart Disease Clinic at University of Colorado Hospital is the premiere program in the region.

We follow more than 1000 patients, and as part of an academic medical center, we offer the most advanced testing and treatment options.

Our Adult Congenital Heart Disease Specialists:

Joseph Kay, MD

Amber Khanna, MD

Elizabeth Yeung, MD

 

Learn more about the ACHD clinic

Types of Defects

Septal Defects

These defects are caused by a hole in the septal wall of the heart, which separates the left and right sides of the heart.

  • Atrial Septal Defect (ASD)
  • Ventricular Septal Defect (VSD)
  • Atrioventricular Canal Defect
  • Mitral Valve Conditions
  • Patent Ductus Arteriosus

Defects Causing Obstruction in the Heart or Blood Vessels

These defects involve any narrowing or blockage of blood flow.

  • Aortic Stenosis (AS)
  • Coarctation of the Aorta
  • Pulmonary Stenosis (PS)

Complex and Cyanotic Defects

These heart defects result in less-than-normal oxygen levels in blood that is pumped to the body.

  • Ebstein’s Anomaly
  • Pulmonary Atresia with and without ventricular septal defect
  • Tetralogy of Fallot (TOF)
  • Transposition of the Great Arteries (atrial and arterial switch)
  • Tricuspid Atresia
  • Total Anomalous Pulmonary Venous Return (TAPVR)
  • Truncus Arteriosus

Problems with Development of the Heart

  • Hypoplastic Left Heart Syndrome (HLHS)
  • Double Outlet Right Ventricle (DORV)
  • Pulmonary Hyptertension associated with congenital heart disease
  • Marfans Syndrome
  • Bicuspid Aortic Valve Disease

Medical Team

The Adult Congenital Heart Disease medical team at University of Colorado Hospital includes doctors, nurses and technicians who have education and training in caring for adults with heart defects. They work together to provide you with the best individual care. The team also works with specialists from other areas within the hospital when necessary.

 

Adult Congenital Heart Disease Specialists

Cardiologists - board-certified doctors who are specially trained to treat diseases that affect the heart. They may specialize in areas such as adult congenital heart disease interventional therapies, congenital MRI and CT imaging.

Cardiothoracic surgeons - board-certified doctors who are specially trained in general surgery following medical school, and have two to three years of training in cardiothoracic surgery (surgery of the chest area, mainly the heart and lungs).

Nurse practitioners (NP) - registered nurses who have completed a master’s degree. NPs are licensed to see patients for assessment, treatment and follow-up.

Registered nurses (RN) - graduated from a formal nursing education program and are licensed by the state of Colorado.

Echocardiographers - technicians who are specially trained in administering and reading echocardiograms.

High-risk obstetrician - a doctor who works in conjunction with our cardiologists to deliver optimal care to adult congenital heart disease patients of child-bearing age.

 

Other Adult Congenital Heart Disease Staff

Financial counselors - available to assist adult congenital heart disease patients with options to seek care at University of Colorado Hospital.

Tests

To diagnose and treat adult congenital heart disease, you may need one or more of the following tests.

Congenital Cardiac Magnetic Resonance Imaging (MRI)

A non-invasive technology that provides highly accurate imaging of the heart using contrast agents and 3-dimensional imaging; an MRI lasts approximately 30 minutes.

Congenital Echocardiogram (ECHO)

An ultrasound that measures the heart’s dimensions and shape and structures, evaluates different heart functions and identifies abnormal blood-flow patterns. Also 3-dimensional.

Cardiopulmonary Stress Testing

A treadmill test that takes an EKG (see description below) and measures lung function while you exercise.

Computed Tomography (CT) Angiogram

A test that uses X-rays to visualize blood flow in veins and arteries, including 3-dimensional imaging.

Electrocardiogram (EKG)

A test that uses electrical sensing devices placed on the body to measure the heart’s electrical activity.

Holter Monitoring

A device that records heart rhythm continuously for 24 hours.

Event Monitoring

A small device that is used by patients for weeks or months, and records heart rhythm when the patient or caregiver pushes a button.

24-Hour Blood Pressure Monitoring

A small device that monitors blood pressure 24 hours a day.

Congenital Cardiac Catheterization

A small, hollow tube is inserted in an artery or vein in the groin and moved forward through the aorta. The catheter can measure pressure within the heart’s chambers, measure blockages, or obtain a sample of heart tissue for biopsy.

Treatments

Your medical team will work with you to develop an individual treatment plan based on your medical needs. Treatment options might include:

Medication Management

Congenital Cardiac Intervention

Stent

A device inserted permanently into an artery to keep it open and provide better blood flow.

Atrial Septal Defect Occlusion

A catheter is used to insert a small disk-like device, which is positioned across an atrial septal defect and then allowed to expand, closing the hole.

Balloon Valvuloplasty

A balloon is used to dilate the aortic valve opening.

Surgery

Patients who undergo surgery as part of their treatment may receive cardiac rehabilitation for appropriate conditioning treatments after their operation.

The Melody Valve Program at UCH

Melody valve

The CATCH program

Since 2010, Colorado’s Adult and Teen Congenital Heart (CATCH) program, in conjunction with the Children’s Hospital Colorado Heart Institute, is the only multi-disciplinary program in Colorado to offer trans-catheter pulmonary valve insertion for adult congenital heart disease survivors with malfunctioning pulmonary valves.

 

A minimally-invasive alternative

Thousands of adult congenital heart disease survivors throughout the United States require multiple pulmonary valve replacements in their lifetime. The new MELODY Valve® offers minimally-invasive pulmonary valve insertion for many of these patients, decreasing the number of more invasive open heart surgeries performed over a patient’s lifetime.

Patient Education

Living With Adult Congenital Heart Disease

Most adults with congenital heart disease have few or no ongoing physical limitations or symptoms.

However, all survivors of heart surgery have an increased risk of developing additional heart problems. Many adults with heart defects require additional surgeries as they age. Those with more complex defects have a high risk of developing additional heart problems. These can include:

  • Rhythm problems
  • Heart failure
  • Heart infection
  • Stroke

Most adults with congenital heart disease can lead productive lives. This includes working a steady job, exercising and having children.

Exercise options

While exercise is beneficial, most adults with congenital heart disease have a limited capacity for it. Check with your adult congenital heart disease specialist regarding best exercise options.

Pregnancy

Most female patients with congenital heart disease can have successful pregnancies. However, it is important to understand the risks. To assist with this, University of Colorado Hospital offers a High-Risk Obstetrics program as well as a Medical Genetics program.

Getting a Second Opinion about Adult Congenital Heart Disease

The American College of Cardiology recommends that all adults with congenital heart disease be followed by an adult congenital heart specialist.

Support Groups

Heart Matters

A forum for fellowship, advocacy and information for adults with congenital heart defects. Formally affiliated with the Adult Congenital Heart Association.

Meets on second Sunday of each month
5:30 to 7:30 p.m.
Wellshire Presbyterian Church, Denver

For more information please contact drjhbelljr@comcast.net or (303) 917-5383.

Additional Resources

Adult Congenital Heart Association
Seeks to improve the quality of life and extend the lives of adults with congenital heart defects.

Congenital Heart Information Network
A national organization that provides reliable information, support services, financial assistance and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them.

International Society for Adult Congenital Cardiac Disease (ISACCD)
Promotes, maintains and pursues excellence in the care of adults with congenital cardiac disease.

Featured Item: Transcatheter Interventions

University of Colorado Hospital is one of only three centers in the region to offer non-surgical treatments called transcatheter interventions.

These include stenting for a native and recurrent aortic coarctation, pulmonary valvuloplasty and pulmonary artery stenting.

Care for your Heart

Adult Congenital Heart Disease at a Glance

Congenital heart disease is a heart defect that is present at birth. It affects eight in 1,000 newborns in the United States every year.

With new treatment and surgery options, many of these newborns are surviving into adulthood. Today, more than one million adults are living with congenital heart disease.

The American College of Cardiology recommends that adults with repaired or unrepaired congenital heart disease see their primary care doctor as well as an adult congenital heart specialist throughout their lives.

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