For Adults

Transition to Adult Care

It is important to start establishing healthy behavior patterns that will have a positive impact on current and future health outcomes.

Young adulthood is an exciting time of independence and growth. It may also be the first time being on your own and taking care of yourself.

Goals of Transitioning to Adult Care

Independence comes with significant physical, social, behavioral, and psychological changes and managing your heart condition on your own can feel anything from normal to overwhelming at times. There are several things you can do to help during this transition:

  • Learn about your heart condition, particularly as an adult, so that you will be able to explain your condition to others when needed, partner in decision-making with your doctor, and take charge of and responsibility for your health.
  • Find and transition to adult health care services and become comfortable talking to doctors, nurses and other providers about your health.
  • Educate yourself on health promoting behaviors and risky behaviors that may affect you differently than others without your condition.
  • Know your symptoms so you can self-identify when you need to make changes in your activities or seek medical care.
  • Learn how to talk about your condition and with whom it is necessary or appropriate to share information.

Questions to Consider

You will be assuming responsibility for your own care as you become an independent adult.

  • Ask your cardiologist for copies of your appointment notes and test results.
  • Work with your caregivers to develop a brief summary of your diagnosis, surgical history, and current medications in case you need healthcare when you are away from home. This is especially helpful if you are travelling or going away to school.
  • Tell all of your health care providers about your heart and medications you are currently taking as some new medications may not be safe for you to take with your current medications and some procedures may be more risky.

We know from experience that sometimes your heart can develop problems with no outward symptoms, even 10 years after surgery. These complications can be treated more easily and with less long-term damage if they are recognized early.

Even if you have no symptoms, it is important to have regular check-ups to make sure nothing has changed, to have an opportunity to ask questions related to your heart health.

Congenital heart disease/defects (CHD) problems are different than most heart problems that adults have (heart attacks for example). Cardiologists at an Adult Congenital Heart Disease (ACHD) clinic have special training to take care of adults with CHD.

It is recommended to have a check-up at an ACHD clinic at least once a year.

The Adult Congenital Heart Association has a searchable directory you can use to find a clinic near you.

Helpful Resources

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