← Return to HCM-ers: Introduce yourself or just say hi

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@karukgirl

Welcome to Mayo Connect @newtosohcm! I'm so glad you found this group. Today is the start of hopefully promising results with Camzyos. I am also glad to hear that you are being treated by someone who specializes in HCM and HOCM. @kelliw, @jaymaysea, @nbs are all on this journey too, and they have shared their experiences with others just beginning like you. I was told that there is a 50/50% chance of passing this on to your children. I would guess that UCSF would recommend genetic testing for your kids? And how fortunate you are that you survived an event that you ended up in ER! This must all feel so surreal right now, having just recently learned what you have, and now beginning a new drug. Yes, you are brave, and you are so correct to learn as much as you can about your condition. It is a blessing to be as healthy as you are. That is going to help you so much going forward. This group and the Camzyos group are absolutely awesome HOCM warriors! So welcome, again, and feel free to share with others how things are going. Do you know your EF and LVOT numbers so you can measure progress? When do you see your cardiologist again? Do you have a contact person that you can reach if you have questions or concerns?

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Replies to "Welcome to Mayo Connect @newtosohcm! I'm so glad you found this group. Today is the start..."

Wow such a lovely speedy reply! Thank you. I’m in a rush to get to the pool but will definitely be back with some numbers. I’m so glad to be in touch with other people going through this💜

Hi. Just a quick comment on genetic testing. I was advised that if my genetic test is positive, then my kids (who are in their 40s) need testing, But if negative, then they don't. In any case, while waiting for all this to happen, they have had screening echocardiograms and are fine.