1. < Hypertrophic Cardiomyopathy (HCM)
Moderator

HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @colleenyoung, Oct 25, 2016

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page. 

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

melissa50 | @melissa50 | Jun 12 6:13pm

Hi, I’m Melissa.
I’m 50 years old and currently undergoing evaluation for hypertrophic cardiomyopathy. My echocardiogram showed severe predominantly basal septal hypertrophy, a hyperdynamic left ventricle (>65%), and a resting LVOT gradient of 82 mmHg with Valsalva. Systolic anterior motion (SAM) of the mitral valve is present, along with multi-valvular regurgitation.

I have a longstanding history of hypertension, which is being considered as a contributing factor, but my cardiologist believes the findings are more consistent with HCM. I’m scheduled for further diagnostic testing, including a stress echocardiogram and cardiac MRI.

I’m here to connect with others, share experiences, and better understand how to manage this condition.

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jachrist | @jachrist | Jun 12 6:31pm
In reply to @melissa50 "Hi! I'm new to this and just working on my diagnoses. I still have a cardiac..." + (show)
@melissa50

Hi! I'm new to this and just working on my diagnoses. I still have a cardiac MRI and stress echo to have done. My cardiologist is sure this so my diagnoses he says. Nervous about where to fo to get the best care. Really happy to find this group

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Mayo Clinic in Rochester, MN is the best place to go!

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1 reply
melissa50 | @melissa50 | Jun 12 8:40pm
In reply to @jachrist "Mayo Clinic in Rochester, MN is the best place to go!" + (show)
@jachrist

Mayo Clinic in Rochester, MN is the best place to go!

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That may not be feasible for me. I live in SC and trying to find the best place. So far all I've seen if Charleston.

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1 reply
jachrist | @jachrist | Jun 12 9:41pm

Melissa,
Sorry that you live so far away. I know that when I'm at Mayo I see vehicles from several states away and flights bringing patients from all over. Test can also be done locally and sent to Mayo. There are options.
Best to you!

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walkinggirl | @walkinggirl | Jun 13 8:49am
In reply to @melissa50 "That may not be feasible for me. I live in SC and trying to find the..." + (show)
@melissa50

That may not be feasible for me. I live in SC and trying to find the best place. So far all I've seen if Charleston.

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Do check out Mayo in Jacksonville, FL, that may be feasible for you. From what I have read in these chats, several people are patients there. If a specific surgery/treatment is recommended and they cannot provide it, they will refer you to a place where you can receive it.

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hjcram | @hjcram | Jun 13 11:13am
In reply to @karukgirl "Hello Al from Alberta @alwiedeman, and a warm welcome to Mayo Clinic Connect! Your story sounds..." + (show)
@karukgirl

Hello Al from Alberta @alwiedeman, and a warm welcome to Mayo Clinic Connect!
Your story sounds like so many of the HCM/HOCM folks on here...some of us tend to go for years with either the wrong diagnosis or no diagnosis.
Have you had a chance to read the Camzyos support group discussions?
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Is your cardiologist up-to-date on all things HCM and Camzyos?
There are several members on Connect from Canada, and it sounds like they have a pretty good system for those who are taking this drug.
Are you active and able to exercise even with HCM?

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I'm from Canada as well, from Winnipeg. I started taking camzyos about 6 weeks ago and I'm quite delighted and surprised that I'm noticing a difference - my gradient has gone from 80 to 30 and I'm finding I have more stamina than I've had in a very long time. Long staircases and uphill are still a challenge but I'm now optimistic that I'll be doing better at some point.
We're visiting in Vancouver right now so I'll see if there's a difference walking around the streets here from when I was last here and having to stop every half block to catch my breath.

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1 reply
hjcram | @hjcram | Jun 13 11:14am
In reply to @hjcram "I'm from Canada as well, from Winnipeg. I started taking camzyos about 6 weeks ago and..." + (show)
@hjcram

I'm from Canada as well, from Winnipeg. I started taking camzyos about 6 weeks ago and I'm quite delighted and surprised that I'm noticing a difference - my gradient has gone from 80 to 30 and I'm finding I have more stamina than I've had in a very long time. Long staircases and uphill are still a challenge but I'm now optimistic that I'll be doing better at some point.
We're visiting in Vancouver right now so I'll see if there's a difference walking around the streets here from when I was last here and having to stop every half block to catch my breath.

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I should add that I'm 79 and very active.

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