Navigating My CHD Tests

Which Test is Right For Me?

Choosing the right cardiac (heart) test depends on many factors that your cardiologist carefully considers.

This guide explains what each test excels at, why it might be ordered, and some risks.

This will prepare you to feel more confident asking informed questions and sharing any concerns or risks your cardiac team may not be aware of.

These cardiac tests are important for providing your cardiology team with information to:

• Evaluate your heart rhythm, structure, and function.
• Determine if any of your symptoms are related to your heart.
• Make informed decisions about adjusting or changing medications.
• Plan for procedures or surgeries effectively.

General Categories of Tests

Comparing Results Across Tests

Different heart tests, such as echocardiograms, cardiac MRIs, and CT scans, examine your heart in slightly different ways. For example, your ejection fraction (EF)—a measure of how well your heart pumps blood—might not be the same when measured by an MRI versus an echocardiogram.

It's important to understand that these differences don't necessarily mean one result is wrong. When tests are performed close together, differences in values may reflect differences in the methods used to measure your heart.

Where Should I Do My Imaging Tests?

Typically, all cardiac imaging should be done at a specialized CHD center.

Why? Specific expertise in congenital heart care and specialized machines is required to obtain accurate images of your heart, which are often available only at CHD centers.

What Should I Look for in Imaging Reports?

There are many nuances to how a report is generated. Below is a general guide.

Heart Function Details: Your Echo, MRI, or CT report will often contain a summary of your heart valves and heart function, including:

• Stenosis: Describes a valve narrowing that can restrict blood flow. Pressure gradient across the valve is often used to assess. (such as 20 mmHg) Lower numbers are usually better.
• Regurgitation/Insufficiency: Describes the percentage of blood that leaks backward through a valve. (such as 10%) Lower numbers are usually better.
• Ejection Fraction (EF): Measures how much blood your heart pumps each beat. (such as 50%) Higher numbers are usually better.
• Chamber Size: Measures how big or small the atria or ventricles are. It is often assessed by measuring the volumes. (such as LVEDV, RVEDV, LAV)* Lower numbers are usually better.

*Sometimes, these details are described subjectively, such as "normal", "mild", "moderate", or "severely abnormal".

Structural Details: How the heart structures appear, such as narrow or enlarged blood vessels.

Focus on the Change: You have lived with your CHD all your life. So, how your heart functions or its structure appears on one report is less important than what has changed over time. Discuss any changes with your cardiologist, noting if new or worsening symptoms accompany them.

Your Echo, Your Heart

Echocardiography is the first-line imaging choice for assessing heart health. It effectively evaluates the function of the heart muscle and valves, as well as blood flow patterns.

What It Is

An Echocardiogram, or Echo, is an ultrasound test that uses sound waves to examine the structure and function of the heart.

How It Works

During an Echo, a cardiac sonographer uses an ultrasound device (transducer) to capture live images of your heart valves and chambers.

Prep: ~10-15 minutes; Test: ~45-60 minutes

Sound + Images

The sounds you hear during an Echo are the sounds of blood flowing through your heart. These sounds, combined with images, help the cardiac sonographer and cardiologist assess:

• The speed and direction of blood flow.
• Whether valves are narrowed (stenosis) or leaking (regurgitation), and their severity.
• Whether there is abnormal blood flow between heart chambers, such as a hole in the heart wall, and the extent of this abnormal flow.

Other Important Assessments

• How well the heart muscle is pumping.
• The size of your pulmonary artery and aorta (the blood vessels carrying blood to and from your heart).
• Sometimes, an IV might be needed for the sonographer to inject saline or other nontoxic substances to obtain better pictures of the heart.

Types of Echos

The sounds you hear during an Echo are the sounds of blood flowing through your heart. These sounds, combined with images, help the cardiac sonographer and cardiologist assess:

• The speed and direction of blood flow.
• Whether valves are narrowed (stenosis) or leaking (regurgitation), and their severity.
• Whether there is abnormal blood flow between heart chambers, such as a hole in the heart wall, and the extent of this abnormal flow.

Transthoracic Echocardiogram (TTE)

The most common type of "heart echo". Performed by placing the ultrasound transducer outside your chest (thoracic area).

Transesophageal Echocardiogram (TEE)

Performed by inserting a thin, flexible probe with an ultrasound transducer down your esophagus (throat). This shows your heart and valves in greater detail than a TTE because your bones and tissues aren't in the way. A TEE is performed only when your cardiologist needs to better visualize your heart structures.

Heart Function Unlocked: Embrace the Tube

Cardiac MRI provides higher-resolution, more accurate measurements of many heart features, including heart function, valve performance, and tissue health. It does this by excelling at high-resolution soft tissue imaging.

What It Is:

A Cardiac MRI (Magnetic Resonance Imaging) uses powerful magnets and radio waves to create detailed pictures of your heart's structure and function.

How It Works:

During the test, you lie on a table that slides into a large, tube-shaped MRI scanner. The scanner uses magnets and radio waves that rotate around you to create highly detailed images of your heart, focusing on soft tissues, such as the heart muscle and valves. The radiology tech may administer contrast (Gadolinium) through an IV to enhance image clarity.

Prep: ~30 minutes; Test: 1-2 hours

Cardiac MRI provides detailed soft-tissue imaging, does not involve radiation, and is ideal for evaluating heart muscle, inflammation, and scarring.

Cardiac MRI Strengths

• Measures how much blood the ventricles pump into your body or lungs (ejection fraction [EF]).
• Measures the size of your heart chambers and identifies any enlargement (dilation).
• Assesses valve insufficiency (regurgitation) or narrowing (stenosis) and their severity.
• Visualizes blood flow through your heart, allowing you to examine the blood vessels leading to and from the heart.
• Detects inflammation or scarring in the heart muscle if present.

Setting Yourself Up for A Successful MRI

Some people (especially those who fear closed spaces, also known as 'claustrophobia') often find it difficult to tolerate a cardiac MRI. Your doctor may be able to prescribe medication to help you relax.

• MRI is significantly more expensive than an Echo, so check with your insurance or doctor to find out what you'll owe after insurance. Being proactive can help you avoid unexpected bills.
• MRI uses magnets, so metal in your body can affect the images. Avoid wearing any jewelry during the MRI. If you have a pacemaker, defibrillator, or other implanted device, bring your device card and inform your doctor or MRI technician of any metal in your body, such as a spinal rod.

Your Anatomy, Your Answers

While echocardiography and cardiac MRI are excellent for evaluating heart function and tissue health, Cardiac CT is particularly valuable for visualizing complex cardiac anatomy and blood vessels. It does this by excelling at high-resolution, three-dimensional spatial imaging.

What It Is:

A Cardiac CT uses X-rays to create 3D images of your heart structure and blood vessels.

How It Works:

During the test, you lie on a table that slides through a large, doughnut-shaped CT scanner. The scanner uses X-rays to take detailed, high-resolution images of your heart and blood vessels. The radiology tech usually administers contrast (Iodine) through an IV to enhance image clarity.

Prep: ~30 minutes; Test: 30-60 minutes

Cardiac CT is faster than Cardiac MRI, uses X-rays, and has some radiation exposure.

It excels at capturing detailed images of blood vessels, bones, and large structures such as the aorta and pulmonary artery. Cardiac CT is usually better tolerated than MRI if you have claustrophobia.

Like an MRI, a CT is expensive.

Cardiac CT Strengths

• Provides detailed visualizations of calcifications and anatomical differences that can impact valve function.
• Evaluates the aorta and pulmonary arteries for conditions like enlargement (aneurysms) or narrowing (such as coarctation).
• Detects blockages, narrowing, and calcification in the coronary arteries, which can affect blood flow to the heart muscle.
• Visualizes abnormal blood flow patterns (such as fistula, collaterals, etc.).
• Help in planning for procedures.

Cardiac MRI & CT: Key Takeaways

Non-Imaging Tests

Non-imaging tests often measure the electrical signals from your heart. By studying these signals, doctors can see how well your heart's natural electrical system works, find problems with blood flow, and check the size of its chambers.

Where should I go for my non-imaging tests?

Typically, you can do these tests at any center that offers them and is most convenient for you.

Non-Imaging Test Strengths

• Heart Rhythm: Checks how the heart's electrical system works and shows if it beats at a normal rate and pattern.
• Arrhythmia: Looks for irregular heartbeats (arrhythmia) and extra electrical pathways that can lead to abnormal heart rhythms.
• Heart Block: Finds blocks in the heart's electrical signals.
• Chamber Size: Shows if the heart's chambers (atria and ventricles) are larger than normal.
• Blood Flow Issues: Helps detect signs of a blocked artery causing reduced blood flow to the heart muscle.

My Beat, My Rhythm

An Electrocardiogram (ECG/EKG) is the first-line non-imaging choice for assessing heart health. It provides valuable information about the heart's electrical system and can also give clues about the heart muscle and chamber sizes.

What It Is

An ECG/EKG is a non-imaging test that records your heart's electrical activity.

How it Works

An ECG/EKG is a simple test where small stickers (called electrodes) are placed on your chest, arms, and legs. These electrodes are connected to an ECG/EKG machine. The electrodes pick up electrical activity from the heart and produce an image of your heart rhythm.

Prep: ~5 minutes; Test: 5-10 minutes

An ECG/EKG helps your doctor to evaluate:

• If there are heart rhythm disturbances, such as arrhythmia.
• If there are blocks in the electrical conduction system.
• If you have a pacemaker, an ECG/EKG helps determine how well it is working.
• If there are signs of blockages in the arteries that supply the heart muscle.
• If there are indirect signs of enlargement in the heart chamber size.

Hide and Seek, Find the Beat

A Heart Monitor is a non-imaging tool that tracks your heart's electrical activity over time. It provides valuable information about your heart rhythm, helps detect irregular heartbeats (arrhythmias), and heart blocks.

Holter Monitor and Event Monitor

Prep: ~15 - 20 minutes; Test: 1 – 30 days

What It Is

A Heart Monitor is a portable, long-term ECG/EKG device worn for 24-48 hours (Holter Monitor) or 7-30 days (Cardiac Event Monitor), which provides information about the heart's electrical system.

Your doctor may recommend a Holter Monitor or Cardiac Event Monitor, based on availability, insurance coverage, and the nature of your symptoms.

How It Works

A Heart Monitor is done by attaching small stickers (electrodes) to your chest. These electrodes are connected to a small device that continuously records your heart's activity.

You can wear a Heart Monitor for 1 - 30 days, depending on the type. It tracks your heart rhythm during that time. After you return the monitor, your doctor will review the recordings for signs of heart rhythm problems.

Benefits of a Heart Monitor

Patients with congenital heart disease are at risk for abnormal heart rhythms and blocks in the electrical system of the heart. A heart monitor checks your heart's rhythm over a longer period than a regular ECG/EKG. Helping your doctor to evaluate:

• Slow heart rate (bradycardia), fast heart rate (tachycardia), or arrhythmias such as atrial fibrillation, atrial flutter, or ventricular tachycardia.
• If there are blocks in the heart's electrical signals.
• How well a pacemaker is working if you have one.

Preparing for a Smooth Heart Monitor Experience

• You should resume day-to-day activities, including sports and exercise.
• Some people experience discomfort or skin irritation from the electrodes.
• Some devices, like cell phones and magnets, can interfere with the heart monitor's signal. To avoid this, keep them at least 6 inches away from the monitor.
• If wearable event monitors fall off, use tape to reattach them.
• Water can damage some Heart Monitors. The technician will tell you whether you can swim or shower while wearing it.

Your Exercise Test, Pushing Your Limits

Stress Tests evaluate your heart's response to exercise. There are three common types of tests for patients with CHD: an Exercise EKG Test, a Cardiopulmonary Exercise Test (CPET), and a Stress Echo.

3 Common Types of Exercise Tests

• Exercise EKG Test
• Cardiopulmonary Exercise Test
• Stress Echo

Exercise EKG Test

• You exercise on a bike or treadmill, which gets harder over time.
• Records your heart rate, blood pressure, and EKG during exercise.
• Helps your cardiologist evaluate your cardiac health and clear you to participate in sports or other physical activities.
• If you have any symptoms, an exercise test helps your cardiologist determine whether they are related to your heart.
• All other stress tests build off the foundation of the exercise EKG test.

Exercise Time: 8-30 minutes; Total Time (Prep, Exercise, Cool Down): 1-2 hours

Cardiopulmonary Exercise Test (CPET)

• You breathe into a mask or mouthpiece, and a breath analysis (ventilatory gas exchange) is recorded.
• This analysis measures how much oxygen you inhale and how much carbon dioxide you exhale.
• It helps the cardiologist evaluate how your heart and lungs respond to exercise and can help determine if symptoms are related to heart issues, lung function, or both.

Exercise Time: 8-30 minutes; Total Time (Prep, Exercise, Cool Down): 2-3 hours

Stress Echo

• A standard Echo is performed both before exercise and during peak exercise.
• The results of the two Echos are compared to identify any differences in heart function during exercise.
• A Stress Echo helps detect issues such as ischemia (reduced blood flow to the heart muscle) or valve dysfunction, which may only become apparent under physical stress.

Exercise Time: 8-30 minutes; Total Time (Prep, Exercise, Cool Down): 3-4 hours

Scheduling Tips

Need to schedule multiple tests?

If convenient, you can schedule all or most of your tests on the same day!

However, this might require you to call multiple departments, such as Radiology to schedule your MRI and Cardiology to schedule your echo or stress test.

Often, ACHD programs have patient coordinators or navigators who can help schedule most of the tests for you on the same day—ask your ACHD team about it!

Need to arrange transportation?

Medicaid Transportation

State Medicaid programs offer transportation to help eligible individuals access care, such as medical, dental, or mental health appointments, and to pick up prescriptions or supplies for covered services.

• Non-Emergency Medical Transportation (NEMT): Specialized transportation
• Non-Medical Transportation (NMT): Public or private transportation

Public Transit

Public transit agencies must provide paratransit (accessible) services for individuals with disabilities who cannot use standard bus or rail services. These services require an application and a fee.

You can search online for paratransit services in your area to learn more.

Prior Authorization

Does this test require prior authorization?

• Most insurance plans require authorization (approval) before tests. Your doctor's office or hospital is responsible for getting this approval. To avoid problems, it's a good idea to check that the test has been approved.
• You usually have to pay the full cost if a test is done without approval.
• Ask for a payment plan if you end up with a bill you cannot pay.
• An authorization does not necessarily mean that insurance will pay the full cost of the test. Depending on your insurance, you may still be responsible for your share of the cost.
• Before you complete a test, know how much you will owe for it.

Managing Insurance

When do I need a letter of medical necessity?

A letter of medical necessity is a letter that an insurance company will request from your physician, asking for the reason or medical necessity for the procedure. Sometimes this is a letter, and other times it's a peer-to-peer conversation between your provider and a provider employed by the insurance company.

What does it mean if my test is denied?

A denial means the insurance does not cover the cost of the test. Often, the insurance company needs more information to approve the test.

If your insurance company denies a test, procedure, or visit, contact your doctor's office immediately. Ask what they can do to help overturn the denial and start the appeal process. They can also guide you through the next steps, including contacting the hospital if necessary.

If you receive a denial from your insurance company for a particular test (procedure or office visit), contact your doctor's office immediately. Make them aware of the denial and ask what they can do to overturn it.

Your doctor's office will need to start an appeal process. If the denial is for a procedure at a hospital, you might need to call the hospital directly.

Radiation

Some tests, like CT and X-rays, involve small amounts of radiation. The radiation risks are typically small compared to the study's benefits. However, these risks increase with age, pregnancy, and other conditions. If you are concerned, ask your provider for more information.

Long-Term Exposure: While the risk from a single imaging study is low, repeated radiation exposure over time can increase the risk of developing cancer. If you are undergoing repeated scans, particularly CT, you should be mindful of the cumulative dose. Discuss the necessity of each scan with your doctor and explore alternatives when possible.

Pregnancy: Radiation exposure during pregnancy carries a small risk to the developing fetus. Imaging studies involving radiation, such as CT scans or X-rays, are usually avoided, particularly in the first trimester, unless necessary.

Age: Children are more sensitive to radiation than adults. Clinicians prioritize echocardiograms or MRIs whenever possible.

Contrast

Contrast agents used in imaging tests, such as CT or MRI, enhance image clarity by highlighting specific structures. While typically safe, they carry some risks, including:

Allergic Reactions: Include itching or a rash (rare) and difficulty breathing (extremely rare).

Side Effects: Include a metallic taste, nausea, or warmth during administration.

Impact on Kidney Function: In people with kidney conditions, contrast agents may temporarily or permanently affect kidney function.

Inform your healthcare team about any prior contrast reactions, allergies, or kidney issues so they can take appropriate precautions.