1. < Hypertrophic Cardiomyopathy (HCM)
Profile picture for Colleen Young, Connect Director
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.

Profile picture for TerryViazanko
TerryViazanko | @terryviazanko | Jun 23, 2017
In reply to @Sensation "Hi Terry Welcome. I have HCM too, but mine is Non Obstructive. Mine has gotten worse..." + (show)
Profile picture for Sensation @Sensation

Hi Terry Welcome. I have HCM too, but mine is Non Obstructive. Mine has gotten worse at times too. It's never easy to deal with. I know how you feel. 🙁
Hope you feel better soon!

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I'm thinking I'll have surgery soon. Tired of being tired. Wishing you the best!!

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Profile picture for Sensation
Sensation | @Sensation | Jun 23, 2017

Hi Terry Welcome. I have HCM too, but mine is Non Obstructive. Mine has gotten worse at times too. It's never easy to deal with. I know how you feel. 🙁
Hope you feel better soon!

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1 reply
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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jun 23, 2017
In reply to @terryviazanko "Thank you!!" + (show)
Profile picture for TerryViazanko @terryviazanko

Thank you!!

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Hello @terryviazanko,

I'd like to 'officially' welcome you, and let you know that we are so glad you've joined us. We look forward to getting to know you, and I'm certain that @janicepike @debcrawford @lynnkay1956 @rmcmillan @lisa7 @margie11 @ninimurphy @mbcube @Sensation @vivian88 will join in with their insights, too.
@terryviazanko, will you tell us a bit more about you and HCM?

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Cynaburst, Alumna Mentor | @cynaburst | Jun 21, 2017

Hey Terry,

Welcome! Glad to have you here. Lots of others here in the same boat. Feel free to share and ask advice of any and all of us!

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Profile picture for TerryViazanko
TerryViazanko | @terryviazanko | Jun 21, 2017

Hi! I'm a 65 year old grandma, married with one child and one grandson. I taught school for several wonderful years. Three years ago I had Hodgkin's lymphoma and Hcom was discovered.!!! Now it's gotten some worse. I'm so glad to be here!

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Profile picture for Kanaaz Pereira, Connect Moderator
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jun 20, 2017
In reply to @jeffjonestn "60 yr old diagnosed 3 yrs ago. Mild symptoms and currently on zero Rx. I would..." + (show)
Profile picture for jeffjonestn @jeffjonestn

60 yr old diagnosed 3 yrs ago. Mild symptoms and currently on zero Rx. I would like info on where & what specific genetic tests I should have done. I assume blood can be drawn anywhere and shipped to testing lab. What lab & what tests to help my children be evaluated?

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Hello @jeffjonestn,

It's great to see you return to Connect; I'm so glad that you chose to post in this group.

In addition to Colleen's recommendation, I would also encourage you to view these links from Mayo Clinic about Genetics and Cardiomyopathy:
Video: http://mayocl.in/2rxC61C
Mayo Clinic Q and A: Hypertrophic Cardiomyopathy May Not Cause Symptoms Until Later in Life: http://mayocl.in/2rKWCjn
Genetics and Cardiomyopathy: Mayo Clinic Radio Health Minute: http://mayocl.in/2ryfjTl

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Profile picture for Ron Petrovich
Ron Petrovich | @ronaldpetrovich | Jun 19, 2017
In reply to @jeffjonestn "60 yr old diagnosed 3 yrs ago. Mild symptoms and currently on zero Rx. I would..." + (show)
Profile picture for jeffjonestn @jeffjonestn

60 yr old diagnosed 3 yrs ago. Mild symptoms and currently on zero Rx. I would like info on where & what specific genetic tests I should have done. I assume blood can be drawn anywhere and shipped to testing lab. What lab & what tests to help my children be evaluated?

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Hi Jeff, my physician at Mayo said that in regard to HCM, a genetic test is still not full proof. My family was tested after I was diagnosed and I was told that the echocardiogram test is the best indicator of the disease, at this present time Thanks

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Profile picture for Ron Petrovich
Ron Petrovich | @ronaldpetrovich | Jun 19, 2017
In reply to @jamienolson "Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to..." + (show)
Profile picture for Jamie Olson @jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I'm sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

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I struggled with verapamil , ca calcium channel blocker. It made me dizzy and tired. I then went to metoprolol, a beta blocker, which agrees with me more.

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