An Open Letter to ACHD Cardiologists

Note: I compiled these tips after informally polling some adults I know with congenital heart disease. I don’t intend to speak for us, but I want our voice to be heard by you—the cardiologist—because without you we’d be the lost survivors.

First off, I want to thank you for devoting your career to caring for adult survivors of CHD. It’s a specialty within a specialty and you’re on the cutting edge of lifelong congenital heart care.

Here are some things I have compiled after my informal poll that I think you should know about us:

1. Some of us may be hyper-vigilant patients—you might even go so far as to call some of us anxious. Imagine if from the moment you were born the odds were against you. You were told you were going to die early, but you didn’t. You survived. You’re an adult now with dreams, aspirations, and SO much to live for. Every change in our health, regardless of how minor, brings back the feelings of terror from our childhood. We fought to live. We will keep advocating for ourselves and for our lives. We don’t mean to annoy, or cause you grief—we just really want to live.
2. You have devoted your entire career to studying CHD. We have been taught since birth to pay attention to our bodies. We know our hearts well, so when we detect a change, please listen to our concerns. Our gut feeling may be the strongest vital sign.
3. Trust is everything. There is nothing more vulnerable than putting your life in someone else’s hands. Many of us are transitioning to you after years of developing a trusting relationship with our pediatric cardiologist. If there was one thing you could do when starting with a new patient it would be to harness trust. We understand you’re busy, but we want to feel important and HEARD. Let the trust-building process guide your practice.
4. Try not to patronize us. Some of us may yield from “tiger parents” and we hear plenty of opinions from those around us. We need honest and open conversations. Let’s work as a team.

   Example: “Can I get a tattoo?”
   Wrong answer: “No.”
   Outcome: Patient goes ahead with the tattoo without the cardiologist’s guidance.
   Better answer: “Well, because you’re on a blood thinner a tattoo would be a bleeding risk as well as an infection risk. I would urge you to seriously consider these risks before you decide on getting a tattoo, but if you insist on getting one let’s try to make it as safe as possible. Let’s talk about it.”
   Outcome: Patient makes an educated decision under the guidance of his or her cardiologist.

5. We appreciate full disclosure—it helps build trust. If you don’t know something, just tell us. If you’re consulting with another physician, please tell us. If you’re stumped and want to order more tests, tell us. We want the truth. Don’t sugarcoat or diminish the seriousness of a situation. We’re tough. We need compassionate honesty.
6. Empathy is the best bedside manner you can have. Put yourself in our shoes. Imagine what it must be like to be us. When you’re feeling overwhelmed and frustrated take a step back, “flip the coin,” and try to see things through our eyes.
7. We’re smart. We’ve grown up in the medical community, BUT a knowledge assessment should be an integral part of every appointment. Have us repeat back what you said. Many times we don’t hear what you’re trying to say, especially when we’re interpreting medical jargon. Write all orders and plans out for us.
8. Make us part of your team. Yes, we’re your patient, but we’re also your greatest colleague. If we can work together we’ll get much further together. We want discussions, not orders. We’ll learn from each other and tread this new cardiology territory together.

You’ve dedicated your life to working with us, and we are forever grateful to you. We would love to hear from you, the ACHD cardiologists, on ways we can help you help us. And personally, I’d love even more input from us—so ACHDers, how do you see yourself and your relationship to your cardiologist?