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!
These are all such good responses and I echo all of them. Finding a GP/PHP that you trust and who gets you so you feel comfortable about raising anything is so important. Also finding an ACHC
Having a heart defect can affect you in many ways especially in your life. It might be a struggle but at the end of the day it's your life do it however you want. Go on adventures, explore your dreams and go forward no matter what the world or body says ❤️