Teens

We know sometimes young people have questions about how their CHD may affect what they want to do. Here are some answers to questions asked along the way.

Why do I need to see the doctor every year?

As you have probably been told, even with repair of a CHD, many people are not cured. Or sometimes, the repairs can put stress on other organs over time that need to be monitored. As a person with a heart defect grows and gets older, further heart problems or problems with other organs such as the liver or lungs may occur. Often time, there are subtle signs that a healthcare provider can detect or tests that can be run to ward off ill effects. Therefore it is very important to see your doctor as regularly as they request so that if needed, additional medications, surgeries, or other procedures can be started right away. At a minimum, you should see your CHD doctor at least once a year.

Will I be able to have a baby?

Most women with congenital heart disease (CHD) can have a successful pregnancy. Doing so requires careful planning and management. One of the best resources we have found about everything related to pregnancy/ birth and risks for someone with CHD can be found at https://www.achaheart.org/your-heart/health-information/pregnancy-and-chd/

I’m angry or depressed about my CHD… what can help?

First off, it’s important for you to know you are not alone. In a recent study of persons with CHD, over 50% of the persons surveyed said they had concerns about managing their mood and/or anxiety, coping with a cardiac condition, stress management, anger management, relationship difficulties, substance use, and smoking cessation.1 One of the best ways to manage feelings is to talk about them with someone you trust: your parent, a good friend, your doctor, teacher, or maybe a pastor or school counselor. Sometimes we need extra help and may need to talk with a licensed mental health worker, psychologist or psychiatrist. It is best to speak openly about your feelings with them so they can best guide you in ways to help you handle these feelings. About 40% of people with CHD need to get a little help from these professionals every now and then. They may be able to put you in to contact with other young adults your age going through similar things. Online, check out some of the groups where peers help each other talk through some of their feelings.

Here are a few online groups, that may help:

Can I run a marathon or hike the Alps?

Here is a great link to an article on what kind of physical activity you can do if you have CHD.  In general, research on patients with CHD, even complex disease, has shown that routine moderate exercise is safe and can be beneficial. For most people, the benefits of exercise outweigh the perceived risks. Low-intensity activity is still preferred. An additional exception may be to limit exposure to altitudes greater than 6360 ft. As always, speak to your cardiologist first before engaging in a new exercise program.  https://www.heart.org/en/health-topics/congenital-heart-defects/care-and-treatment-for-congenital-heart-defects/congenital-heart-defects-and-physical-activity

Can I enter the military? 

As you have probably found out, having CHD doesn’t mean that you can’t do or become anyone you want. You might need to modify how you do things, but in general there are very few things you can’t do. The one big exception to this is going in to the military. Because of the intense training and physical stress placed upon new recruits, people with any degree of heart disease may not serve in the military.

Are there any jobs I cannot do?

Some jobs may be problematic based upon the amount of physical exertion and stress they involve such as firefighting, construction, and law enforcement. Another limitation may be positions in which you could jeopardize the health of others should you have an abnormal heart rhythm resulting in a loss of consciousness when directly providing transport to others such as being a pilot, school bus driver, or train engineer. Finally, if you have a pacemaker or ICD, arc welding will interfere with their operation and must be avoided. Here is a good site that talks about job opportunities for people with CHD: http://corience.org/living-with-a-heart-defect/parents/you-and-your-heart-teen/education-and-employment/checklist-choosing-a-career/index.html

Can I give blood?

According to the American Red Cross (https://www.redcrossblood.org/donating-blood/eligibility-requirements), you can donate blood as long as you are in good general health, aged 17 or more, and weigh at least 110 pounds. Specific for CHD, you should be able to donate if your blood pressure, hemoglobin level, and blood oxygenation levels have been within normal levels for the previous 6 months, and your doctor has not told you to restrict your activity. So blood pressure should be between 80-180/ The one important exception is anti-clotting drugs, such as Arixtra (fondaparinux), Coumadin, Warfilone, Jantoven (warfarin), Heparin, Fragmin (dalteparin), Eliquis (apixaban), Pradaxa (dabigatran), Savaysa (edoxaban), Xarelto (rivaroxaban), and Lovenox (enoxaparin). If you’re taking any of these drugs, you should not donate because your blood won’t clot normally. When you see your cardiologist next, ask them if you are able to give blood.

What should I look for in the future? What are 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 reasons why 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?

Because repairs for CHD are often very individualized, your care afterwards will also be individualized. There are some common types of medications that are necessary, but each person is truly unique and your cardiologist will best be able to answer these questions.

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

Typically, your cardiologist will need to complete a full assessment on 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?

  • 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: https://www.eeoc.gov/eeoc/publications/ada18.cfm
  • 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.
  • 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.
  • 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 a reasonable accommodation. An employer cannot refuse to hire you because your disability prevents you from performing duties that are not essential to the job.

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.