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Camzyos treatment location / expertise?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 8 11:05am | Replies (20)Comment receiving replies
Hello @amyfaith
Welcome to Mayo Clinic Connect. I am so glad you found this site. There is no feeling like knowing other people out there have what you have and can share their stories.
I remember finding out what I had, and I was stunned. I could barely spell it...let alone knew anyone with it!
If I could share any advice with you, it would be to trust your instincts, and do not let distance or your backyard be the deciding factor for where you decide to get treatment from!!
Learning as much you can about what is living inside your chest is as important as who you get your care from.
I assume (bad idea!) that you know this is most likely genetic, there is no "cure" and each person has different and unique symptoms, but we all seem to share many in common.
Shortness of breath. Fatigue. Crazy heart pounding/racing. And more!
You only get one chance on the planet, and your life is important. You need to know 100% you are getting the best, top-of-the-world care.
It's good you are thinking about that.
A COE exceeds standards and has outcomes that put them in the top category.
Nobody ever wants to hear they have this condition...let alone be told they need open heart surgery. Camzyos works wonders for some and for others not so much.
It's totally your decision which path you chose with the help of your HOCM expert cardiologist.
Mayo Clinic Connect is here to listen and share stories and opinions...but we can't take the place of medical experts.
Patients helping patients. It's a beautiful thing!
What is your internal voice telling you?
Have you processed enough to feel confident in your choices?
Replies to "Hello @amyfaith Welcome to Mayo Clinic Connect. I am so glad you found this site. There..."
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Hi Debra, Thank you ! for your warmth and warm welcome.
I agree there's nothing like connecting with people who know what you're going through, and have insights on the path ahead.
I very much appreciate hearing what you have to say about a COE, and not just staying in my own back yard. And gettting the best care possible, thanks for advocating for that. I'm taking your advice to heart. 😉
I've been reading and learning as much as I can about O,HCM in the past few months, so have a start on understanding what HCM is. My main symptom is SOB on exertion, & an increase in long term murmur. My instinct is to gather up more info, and now that I've been told I'm a " good candidate" for Camzyos to think carefully about options. So that is my main question. Up to now, age 67, I've been mostly very healthy. That black box warning is certainly alarming. My local cardiologist who I know and trust, & who has an excellent local reputation had not suggested a COE. So, I'm exploring. And am also looking at the Lahey center in Burlington , MA.
Do you know if with Camzyos at a COE, do people always recieve the follow up echo's at their COE, or are those sometimes done remotely - closer to someones home if someone were traveling to a COE for their primary HCM treament? Or all echos, all follow up done in person at the COE's ?
I'd also like to understand more about what is the average path of progresion. Is HCM always progressive for individuals ? What is that expected arc of progression? and how does Camzyos change that ? If anyone has a resource to point me to on that, I'm interested.
Thank you !