Submit your best advice
I'm looking for your hard-earned wisdom and biggest questions about advocating for yourself in medical settings.
Hello! I’m Leigh Kamping-Carder, and this is The Heart Dialogues, the free newsletter for people born with heart conditions (and the people who love them). Every other week, I bring you a candid conversation with someone who has congenital heart disease, plus essays, links, recommendations, reader threads and other good stuff about living with a wonky heart. Join this community and ensure you don’t miss the next edition.
Doctor’s appointments are a common feature of life for anyone who was born with a heart condition. There are the visits to cardiologists, sure, but also the tests, meetings with specialists, procedures and even routine care. (That often comes with an extra frisson for anyone with a serious and not-widely-understood health issue.)
In my many years of caring for my heart, some of this has gotten easier, and some of it hasn’t.
I’m putting together a guide for CHD patients to make the most of medical appointments, from advocating for yourself to calming difficult emotions to getting the best information. I’ll be speaking with professionals and mining my own experience, but also…
I want to hear from you!
What have you learned that makes medical appointments better?
What do you struggle with the most? What do you need help with?
Leave a comment or email me at theheartdialogues@substack.com. Please share with anyone else who might like to contribute!
I’ve learned that the best cardiologists are those who listen to us about our hearts. No amount of education is a substitute for living with a condition your whole life. The combination of a provider trusting their patient and a patient trusting their doctor, combined with the unique knowledge they each bring to appointments will guarantee better health outcomes. Especially when compared to a patient and doctor that don’t have mutual trust and respect for one another.
I’ve learned that preparing questions before an appointment is important. I have a friend who has a CHC, and he has been a valuable resource for me (many may not have that). I struggle with all the appointments, test requests and medication changes. Navigating this new world has been a challenge at times (my lifelong CHC was formally diagnosed last year).