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HCM-ers: Introduce yourself or just say hi

Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 26 9:56am | Replies (870)
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@karukgirl

Hi @don69, and a warm welcome to Mayo Clinic Connect!
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
I do not know if you have had an opportunity to poke around here on Connect or not, but I have posted a link to the Camzyos support group. This is an amazing support group and you can learn a lot from them. I would highly recommend you reading some of the posts there.
@kelliw and @jaymaysea are two Camzyos troopers! I hope you read their stories.
I think anyone would be anxious about starting a new drug, so you are totally not alone. In fact, you are in the best company here on Connect. Check out the Camzyos link I sent.
Were you just recently diagnosed with HOCM (HCM with obstruction) or have you known and are now symptomatic enough for Camzyos?

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Replies to "Hi @don69, and a warm welcome to Mayo Clinic Connect! https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/ I do not know if..."
don69 | @don69 | Jul 21 5:16pm

Yes just found out this week. I have not started treatment yet.

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jaymaysea | @jaymaysea | Jul 24 2:27am

Hi @don69, This group has been invaluable to me, particularly when I was making the decision to start Camzyos and then subsequently when I was frustrated with my Dr.

You have every right to be nervous. It's still a fairly new drug. It was even newer when I started. I have been on it for 14 months.

I would recommend that you do your research and then follow your heart/ have faith. It's important that you be informed so you can be your best advocate. Know your options.

The drug has been highly effective for many in this group, giving them a new lease on life. For me it has not been as life changing as I had hoped. I still have shortness of breath and a high heart rate upon exertion. I am going to Cleveland Climic in 2 weeks for a more through evaluation. Mayo was harder for me to get to. Next week I am having a new MRI that NHI is developing to examine the heart under exertion.

I may end up having open heart surgery. But, I decided to give Camzyos a try as an alternative first.

Only you can make the decision on how to tackle your HCM. But remember, nothing beats a failure but a try. Good luck! We are here for you.

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joanallione | @joanallione | Jul 30 9:02am

can you send me the camzyos link? i’m having trouble finding my questions and also responses and also the other camzyos posts. Also, do you know any other places there are camzyos support groups?

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