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 ❤️
Aug 16, 2023·edited Aug 16, 2023Liked by Leigh Kamping-Carder
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.
Hi Lela, I was hoping to quote from your response in the upcoming guide. Ideally, I would include your full name, the place where you live and your heart condition. If that's OK, can you let me know what those are? You can also email me with any questions at theheartdialogues@substack.com. Thanks!
That’s fine. What’s listed is my name. I have tetralogy of Fallot. I’m currently in Indianapolis, Indiana, but my husband’s in the service, so we move a lot. I call Salt Lake City, Utah home.
I think it's important to balance self-reliance and trust in your doctor. Doctors are human and they will offer different opinions. They also may not be the best communicators, especially in times of stress.
I think it's ok to ask about your diagnosis and potential treatments, and research them a bit on your own.
But it's also critical to understand that what you read online was written in the past, and medicine is constantly evolving. Also, online articles are written to inform consumers and err on the side of making something sound more serious. (A goal of many articles on medical conditions is to encourage you to see a doctor or visit a hospital).
Once you have that context, I think you can ask intelligent questions about your situation and treatment plan. One last thing, if you forget to ask something, don't beat yourself up. I'm always thinking of questions hours or days after an appointment. These are ongoing relationships with your medical professionals and you can continue to ask questions whenever they pop up.
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).
Just trying to answer this question overwhelms me today. I have tons of things but can't do it. Sorry. Bring someone with you, write questions ahead of time, get a note taker.......
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 ❤️
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.
Hi Lela, I was hoping to quote from your response in the upcoming guide. Ideally, I would include your full name, the place where you live and your heart condition. If that's OK, can you let me know what those are? You can also email me with any questions at theheartdialogues@substack.com. Thanks!
That’s fine. What’s listed is my name. I have tetralogy of Fallot. I’m currently in Indianapolis, Indiana, but my husband’s in the service, so we move a lot. I call Salt Lake City, Utah home.
Thanks!
Absolutely! Thanks for sharing.
I think it's important to balance self-reliance and trust in your doctor. Doctors are human and they will offer different opinions. They also may not be the best communicators, especially in times of stress.
I think it's ok to ask about your diagnosis and potential treatments, and research them a bit on your own.
But it's also critical to understand that what you read online was written in the past, and medicine is constantly evolving. Also, online articles are written to inform consumers and err on the side of making something sound more serious. (A goal of many articles on medical conditions is to encourage you to see a doctor or visit a hospital).
Once you have that context, I think you can ask intelligent questions about your situation and treatment plan. One last thing, if you forget to ask something, don't beat yourself up. I'm always thinking of questions hours or days after an appointment. These are ongoing relationships with your medical professionals and you can continue to ask questions whenever they pop up.
That's great advice, thanks David!
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).
I can't imagine. In some ways I'm grateful I've had lots of practice in medical settings....
Just trying to answer this question overwhelms me today. I have tons of things but can't do it. Sorry. Bring someone with you, write questions ahead of time, get a note taker.......
Not a problem! Please don't let it stress you out!