Become your own best advocate
If you are living with adult congenital heart disease, you will need to be your own best advocate. This means learning to be an active participant in your treatment decisions and care. That requires good information and some special skills in accessing and communicating with the people who make decisions about policy and funding.
Adult CHD problems are very different from other “regular”/acquired heart issues that adults develop. It is important to understand as much as you can about your CHD and any problems that it might cause you. These guidelines provide recommendations on how to advocate for yourself and take steps to live the most normal, healthy life possible.
- Ask questions. Learn the name(s) of your CHD and be able to describe it.
- Know your medical history, including any surgeries you may have had.
- Learn the risks you may be facing as an adult.
- Learn how to identify any signs of new heart problems.
- Keep a list of any medications you are taking, their dosages, what each medication is for, and what it does.
- Make sure that any diagnostic tests, medical procedures and surgery for complex ACHD are performed by your ACHD center.
- Exercise—but make sure that you work with your ACHD cardiologist to get an exercise program that is right for your ACHD—and update it regularly.
- Make your doctors aware of your heart history. This includes all doctors, including any you see in the emergency room and even in situations that do not involve your heart.
- Talk to your ACHD doctor about what forms of birth control are safe—and check with an ACHD specialist before becoming pregnant.
- Talk to your pharmacist about your conditions and be aware of potentially drug interactions and dosages. Your primary care provider may not know about these issues.
"My condition has given me the determination and willpower to get through life and try to make it better for those around me, reassuring them there is a reason I was born with this condition and that perhaps it’s to help others. My decision to become an ACHA Ambassador is based on my own life experience. I want others to know that we are and you are not alone; there are tools that can help manage CHD so you can live a full life."
"I decided to become an ACHA Ambassador because I needed to give back to the CHD community. I am doing so by focusing my time and effort spreading the word about how we can live and enjoy life as an adult CHD patient. I endured and exceeded all expectations, but the great thing is that I am not the only one to do so! As ACHD patients we have all beat the odds and every day we get up is another day we do so!"
The Transition from Pediatric Care
The transition from pediatric to adult congenital heart care is a critical and sometimes overlooked step. It happens at different ages and in different ways for each patient. Aging out of pediatric care can be like leaving the nest--a difficult change that involves leaving a trusted doctor and seeking new specialists in different centers, while at the same time providing continuity of high-quality care. For most people, this moment arrives when they reach late adolescence or early adulthood, but it can also come as the result of moving to a new location.
Find specialized care for your congenital heart disease throughout adulthood at ACHA’s Clinic Directory.
Pregnancy and ACHD
If you are conceiving a baby or are pregnant and know you have a congenital heart defect, there are things you need to know.
Social Issues and Stress.
Dealing with the emotional and social challenges of living with CHD throughout adulthood can take a toll. Join our community to share your experiences and connect to other people with adult congenital heart disease.