Just Diagnosed with HCOM

@hougoss
I see the mentor has already reached out to you with great feedback and information.

I have heart failure caused by cardiomyopathy. I see a heart failure specialist. In fact my HF doctor is the Director of heart failure and transplant division at Mayo Jacksonville.

A lot of cardiologist are experienced and knowledgeable on cardiomyopathy and hopefully you have one. If not seek out a heart failure specialist and like mentor mentioned second opinions if any doubt at all.

You did not mention your ejection fraction. Is us normal (50-70)? Mine went down to 25-30 until put on entresto and carviidol and has remain same since then. I was seeing a regular cardiologist at my home town for my cardiomyopathy. I wanted a second opinion and that is when I went to Mayo Clinic and saw HF doctor and electrophysiologist. My HF doctor changed my medications immediately.

Now some inspiration here. I was diagnosed with cardiomyopathy and heart failure in 2001. It is now 2025. I do sprint triathlons and exercise 6 days a week. When I went to Mayo for second opinion and then decided to stay with them I got excellent medical care. My EF had remained the same for 10 years now. When I do stress test at Mayo they come back low risk of cardio risk.

So stay positive. There are great medication and lifestyle changes to treat this, stay positive.

Welcome to Mayo Clinic Connect @hougoss, I am glad for you that you found this online community of folks with your same diagnosis.
It certainly is frightening to learn you have a heart condition, and it takes awhile to process all the information there is on this condition. It can feel overwhelming at first, so you are in a good place here on Connect.

I posted some links that you may find interesting to read. I would encourage you to learn as much as you can about what you have living inside your heart, and educate yourself so you can be your own best advocate.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://www.4hcm.org/
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Is your cardiologist up to date on all things HOCM? It is super important that you get a doctor well versed in the treatment of this condition...a lot of cardiologist miss it and patients go misdiagnosed or undiagnosed for years before finally getting the correct diagnosis. There are many people who have gone to second, third even fourth opinions. This is your life and you owe it to yourself to be certain you have the right plan at the right time.
It's important to feel like you are being heard, and that you have a good relationship with your cardiologist going forward on the Camzyos route.

It is a lot to take in all at once, so take a deep breath, relax, and start learning. It definitely is scary at first, but the more you know, the less you have to battle the fear.
When do you start on Camzyos?
When will you see your cardiologist again for your next echo?

@hougoss
I see the mentor has already reached out to you with great feedback and information.

I have heart failure caused by cardiomyopathy. I see a heart failure specialist. In fact my HF doctor is the Director of heart failure and transplant division at Mayo Jacksonville.

A lot of cardiologist are experienced and knowledgeable on cardiomyopathy and hopefully you have one. If not seek out a heart failure specialist and like mentor mentioned second opinions if any doubt at all.

You did not mention your ejection fraction. Is us normal (50-70)? Mine went down to 25-30 until put on entresto and carviidol and has remain same since then. I was seeing a regular cardiologist at my home town for my cardiomyopathy. I wanted a second opinion and that is when I went to Mayo Clinic and saw HF doctor and electrophysiologist. My HF doctor changed my medications immediately.

Now some inspiration here. I was diagnosed with cardiomyopathy and heart failure in 2001. It is now 2025. I do sprint triathlons and exercise 6 days a week. When I went to Mayo for second opinion and then decided to stay with them I got excellent medical care. My EF had remained the same for 10 years now. When I do stress test at Mayo they come back low risk of cardio risk.

So stay positive. There are great medication and lifestyle changes to treat this, stay positive.

Thank you for your reply. I just saw my Cardiologist this week and now am waiting to get the pre authorization for Camzyos. Hopefully I will tolerate it well and it will help me be more active. Right now with the summer heat I cannot walk much without my heart pounding and being short of breath.

What medications are you currently on?