Congenital Heart Disease CHD and the Future Frequently Asked Questions FAQs

What should I look for in the future? What are the likely situations or concerns? Will heart disease get worse or other conditions develop?

Some procedures and surgeries you may have had as a child may have completely fixed your congenital heart defect while others may have been a temporary fix or developed substitute anatomy. Over time, these surgical repairs could fail or cause changes in the normal pressures of the heart which could damage the heart, lungs, or other organs. In addition, aging and unhealthy behaviors such as eating a high-fat diet, not exercising, smoking, or high blood pressure can also lead to heart and vascular changes.

Signs of development of problems can be very subtle, but if caught in time, can be treated. Your healthcare team may be able to stop any permanent damage. These are all the reasons it is critical to see your cardiologist regularly as they recommend either every 6 months or once a year.

If you develop any new signs and symptoms such as shortness of breath with activity, irregular heartbeat, new cough not associated with a cold or virus, or swelling of your abdomen or legs, also notify your provider.

What can I expect long term after my CHD repair? Will I need medication? Will I need another intervention or procedure?

What type of test should be done yearly as an adult?

Typically, your cardiologist will need to complete a full assessment of you every year assessing your heart, lungs, and vascular system. In addition, you will need some lab work to determine if your kidneys and liver are receiving enough blood from your heart, measurement of your blood counts, and electrolytes that are necessary for cellular functioning. You may also need tests to measure your exercise capacity and yearly echocardiograms to visualize the heart function and blood flow. Other imaging or vascular studies may be necessary. Be sure to ask your cardiologist to explain the purpose of each test and the results when known.

What should I tell my employer about my CHD?

Disclosure – You only need to disclose what you are comfortable discussing with your employer. If you have a disability and need accommodations, then refer to the U.S. Equal Employment Opportunity Commission’s website on the rights of persons with disabilities.

Discrimination – If you have a disability and are qualified to do a job, the ADA protects you from job discrimination on the basis of your disability. Under the ADA, you have a disability if you have a physical or mental impairment that substantially limits a major life activity or a history of such a disability.

Record-keeping – To be protected under the ADA, you must have, have a record of, or be regarded as having a substantial impairment that significantly limits or restricts a major life activity such as hearing, seeing, speaking, walking, breathing, performing manual tasks, caring for oneself, learning or working.

Qualifications – If you have a disability, you must also be qualified to perform the essential functions or duties of a job, with or without reasonable accommodation, in order to be protected from job discrimination by the ADA. This means two things. First, you must satisfy the employer's requirements for the job, such as education, employment experience, skills, or licenses. Second, you must be able to perform the essential functions of the job with or without reasonable accommodation. Essential functions are the fundamental job duties that you must be able to perform on your own or with the help of reasonable accommodation. An employer cannot refuse to hire you because your disability prevents you from performing duties that are not essential to the job.

U.S. Equal Employment Opportunity Commission’s Website

Should I tell my employer that I have a disability?

If you think you will need a reasonable accommodation in order to participate in the application process or to perform essential job functions, you should inform the employer that an accommodation will be needed. Employers are required to provide reasonable accommodation only for the physical or mental limitations of a qualified individual with a disability of which they are aware. Generally, it is the responsibility of the employee to inform the employer that an accommodation is needed.

What are the latest advances in care/surgery/medications/ etc?

Every day, advances are made in cardiac health and repair. Some of the items on the recent and near horizon are:

New medications to treat heart failure and high cholesterol;
Transcatheter valve replacements instead of open-heart surgery;
Stem cell therapy to regenerate cardiac cells; and
Mechanical circulatory support with smaller artificial hearts and batteries.

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