Frequently Asked Questions (FAQs)

About CHDs

What is my expected life expectancy?

It varies greatly depending on the complexity of the heart disease. Please discuss with your pediatric cardiologist regarding the expected life expectancy of your specific lesion.

How can I explain to others what CHD is?

There are several support groups with good information.  www.achaheart.org is a good website for basic information.  Your cardiologist can give you more resources for your specific condition.

Will I need to have more surgery?

Most forms of congenital heart disease can be treated, often involving surgery. After treatment congenital heart disease is not cured, but is likely to have some ongoing risk for complications. Some surgical repairs can be expected to deteriorate with time and may require future procedures. Increasingly there are non-surgical procedures that may address some of these problems. Ask your adult congenital cardiologist about your specific condition for more detailed information.

Growth & Development

Am I able to get my driver's license?

Most patients with CHD are able to obtain a driver’s license. However, there may be some restrictions. Your cardiologist will be able to address this question and also fill out the required DMV form.

Will I be able to work/go to college?

In most cases, yes.

Are there driving restrictions for people with CHD?

Most patients with CHD are able to obtain a driver’s license. However, there may be some restrictions. Your cardiologist will be able to address this question and also fill out the required DMV form.

Is it safe to have children/get pregnant? What's the risk of passing on CHD to baby, if so?

There may be some risks involved with pregnancy. You will work with a cardiologist who specializes in pregnancy and heart disease closely before, during, and after pregnancy.  The risk of having a child with heart disease if the mother has CHD is about 3-5%.

Healthy Living

What types of exercise should I choose?

In general, exercise is encouraged. You are advised to pay attention to your symptoms and discuss these with your adult congenital cardiologist. Cardiovascular health is most likely to benefit from aerobic exercise (cardio). Heavy weight lifting may be particularly dangerous in certain situations with particular risk from high blood pressure.

What diet should I follow?

It is important to maintain a healthy weight through careful diet and exercise. Any residual heart limitations will become more pronounced in those who are overweight or obese.

Everyone should choose a healthy diet emphasizing fruits, vegetables, grains, and healthy proteins and avoiding saturated fats, trans fats, added sugars and sodium.

Link: https://health.gov/dietaryguidelines/

Can I participate in competitive sports?

Participation in competitive sports depends upon your specific condition and the specific sport in question. Those sports that require greater degrees of exertion or contact, and those conditions that have higher risk for complications may make competitive sports unwise. To assess your risk you should have consultation with an Adult Congenital Heart Disease provider.

Where can we find healthy tips for living with CHD?

Please discuss this with your pediatric cardiologist.

Support

How can I talk to other people that were born with my same condition?

Below are some links to patient support groups:

Mended Hearts

Intermountain Healing Hearts

What resources are there to help with the financial cost of CHD medical care?

Our social worker can help with this issue.

Where can I find access to a social worker?

Our pediatric cardiology program at PCH has a full time social worker dedicated to cardiology. Please contact your cardiologist’s office for details.

Where can I find out how much it will cost for medical care with my insurance?

Calling your insurance company would be a good first step.

Transition of Care

How long can I be seen here by my pediatric cardiologist?

You can generally be followed by your pediatric cardiologist until the age of 18-21, and sometimes longer.

Will I be able to get health insurance/life insurance?

Yes, in most cases.

I feel fine, why do I need to be seen by a congenital specialist?

Even after surgical correction a congenital heart defect is not cured and your adult congenital cardiologist should monitor for long-term changes or complications.

My regular doctor is afraid to do anything for me because of my heart defect - what should I do to get medical care?

Your Adult Congenital Cardiologist will work as a team with your regular primary care physician.  Establishing care with your Adult Congenital Cardiologist will be the first step to develop a health care plan.

I'm moving, how can I find an adult congenital heart specialist?

The link below to the Adult Congenital Heart Association (ACHA) provides information for Adult Congenital Heart Disease (ACHD) care teams for both the United States and Canada.

https://www.achaheart.org/your-heart/clinic-directory/clinic-listings/

Can I go to any cardiologist I want?

Yes, but it is good to follow with the same cardiologist who is familiar with your medical history. Occasionally in urgent situations you may need to see the next available cardiologist.

Can't my primary doctor follow me?

It is very important to have a primary care physician for general health and maintenance, but your heart health care will be best provided by an Adult Congenital Cardiologist.  Click here to find an Adult Congenital Cardiologist in Utah.

Why do I need to have an Adult Congenital Heart Disease Specialist? Can't my pediatric cardiologist continue to follow me?

Your pediatric cardiologist is an expert on congenital heart defects (CHDs), but does not have training or experience in managing adult issues related to CHDs.

Other

What do I need to know before I have my wisdom teeth removed?

Depends on your specific heart disease. Please discuss this with your cardiologist regarding recommendations for sedation, anesthesia, antibiotic prophylaxis, etc.

Can I carry a pregnancy with my heart disease?

Many conditions are compatible with successful pregnancy if optimized before pregnancy and managed closely in collaboration with expert obstetric care from Maternal Fetal Medicine specialists.

Some conditions carry higher risk and pregnancy would be unwise, to assess your risk you should have consultation with an Adult Congenital Heart Disease provider.

How does air quality and altitude affect my CHD?

There is evidence that bad air quality has adverse health effects. Most people with a CHD can tolerate altitude barring some exceptions. Please discuss this question with your cardiologist.

Will flying affect my CHD?

It is safe for the most part, barring some exceptions. Please discuss this question with your cardiologist.