Be Your Own Patient Advocate

Growing up with a congenital defect usually means that your parents serve as your healthcare advocate. Adults can also have help and support, but it is wise to be your own patient advocate. You should be familiar with your condition, keeping your medical records and making sure that you communicate with other healthcare professionals about your condition. As we age, there is a greater need for coordinated care with other medical specialists beyond congenital cardiology.

Several years ago, I had a staff member who also had a CHD. He was in his late twenties and had no idea of why he had open heart surgery as a child. This story is not uncommon, but it can be serious. If you need immediate care and don’t understand why you had surgery as a child, it could be dangerous.

Get educated about your condition! Educate your friends, family, and significant others. They need to understand too, in case you cannot speak for yourself in an emergency.

Keep your medical records. Make sure you are obtaining copies of diagnostic tests as well: EKG, echo, X-ray, catheterization. Surgical reports are also helpful to have in your possession. The reason is that many of us had surgery decades ago, and it is helpful for a new surgeon to have as much information about your particular repair.

Speak up and ask questions to your care provider. Personally, I make it a point to educate my primary care physician about my CHD. Fortunately, where I have obtained care, my primary physician and my specialist are in the same system or group.

It can be overwhelming and a little scary when you become the one responsible for your care. During the first 20 years of my life, this was my parents’ responsibility. Today it’s mine, and it should be yours too. Organizations like ACHA offer many resources and are here to help you become your own patient advocate.