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.

Mentor
Debra, Volunteer Mentor | @karukgirl | Jul 4 3:29pm
In reply to @marckat2006 "Hi! I am 70 years old, and I was just told of having stiffening of the..." + (show)
@marckat2006

Hi! I am 70 years old, and I was just told of having stiffening of the bottom of my heart. I have pain and out of breath, feel my heartbeat. What am I to do now?

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Hello @marckat2006, Happy 4th of July, and Welcome to Mayo Connect!
I posted some Connect threads and a Mayo Clinic article for you to read. I hope you can find some information that helps you.
You posted to the HCM group, do you also have HCM (Hypertrophic Cardiomyopathy)?
Seventy is young to me, as I get closer every year!
HCM can cause dyspnea or shortness of breath, chest pain and wild heart beats. Did your cardiologist discuss these issues with you? When do you see them again? Do you have other health issues, or are you an active young 70 year old?
https://connect.mayoclinic.org/discussion/stiff-heart-diastolic-heart-failure/
https://connect.mayoclinic.org/discussion/confused-about-stiff-heart-diastolic-heart-failure-or-hfpef/
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198

REPLY
walkinggirl | @walkinggirl | Jul 5 1:43pm
In reply to @marckat2006 "Hi! I am 70 years old, and I was just told of having stiffening of the..." + (show)
@marckat2006

Hi! I am 70 years old, and I was just told of having stiffening of the bottom of my heart. I have pain and out of breath, feel my heartbeat. What am I to do now?

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Hello marckat2006, What did your cardiologist suggest for your treatment? Would it be possible for you to get a second opinion at the Mayo Clinic where the doctors are very well versed and up to date?

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1 reply
marckat2006 | @marckat2006 | Jul 5 4:45pm
In reply to @walkinggirl "Hello marckat2006, What did your cardiologist suggest for your treatment? Would it be possible for you..." + (show)
@walkinggirl

Hello marckat2006, What did your cardiologist suggest for your treatment? Would it be possible for you to get a second opinion at the Mayo Clinic where the doctors are very well versed and up to date?

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I live in Michigan. I take pills.

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2 replies
montanamoon | @montanamoon | Jul 6 9:56am
In reply to @marckat2006 "I live in Michigan. I take pills." + (show)
@marckat2006

I live in Michigan. I take pills.

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Hi Marckat2006,
I also live in Michigan and take Camzyos. 😊

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walkinggirl | @walkinggirl | Jul 6 10:09am
In reply to @marckat2006 "I live in Michigan. I take pills." + (show)
@marckat2006

I live in Michigan. I take pills.

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Marckat2006, please inform us of which meds your doctor prescribed. There are many people, especially the moderators, who are living with the HCM heart issues (yet, individually different), that you are and can offer plans of action that you can consider. Michigan is not so far from Minnesota, people from all over the world seek help there (I'm upstate NY). We can ALL sympathize with you during this very scary time! Your quality of life and peace of mind are important. Learn all you can about your condition!

REPLY
flyman437 | @flyman437 | Jul 7 12:02pm

Hi,My name Mark one year on Camzyos

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1 reply
metta | @metta | Jul 11 12:52pm
In reply to @colleenyoung "Hi Connect HCM-ers @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag..." + (show)
@colleenyoung

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I'm tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

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Hi Colleen, Just joined the group. I'm signed in as @metta I think. I was diagnosed HCM in August of 2008, and have had an ICD since then. Looking forward to being a part of the discussion.

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Jul 11 3:39pm
In reply to @flyman437 "Hi,My name Mark one year on Camzyos" + (show)
@flyman437

Hi,My name Mark one year on Camzyos

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https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Hi Mark @flyman437, it looks like this is your first time posting, so welcome aboard the Hypertrophic Cardiomyopathy group. I posted a link to the Camzyos group, and you may want to take some time and read all their stories if you have not yet.
You mention you are on Camzyos for a year now...how are your HOCM symptoms? Are you doing better than before Camzyos?

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Jul 11 3:41pm
In reply to @metta "Hi Colleen, Just joined the group. I'm signed in as @metta I think. I was diagnosed..." + (show)
@metta

Hi Colleen, Just joined the group. I'm signed in as @metta I think. I was diagnosed HCM in August of 2008, and have had an ICD since then. Looking forward to being a part of the discussion.

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Hello @metta, and welcome to Mayo Clinic Connect. I'm glad you are here! And yes, it looks like you did sign up as @metta. I hope you have a chance to poke around here on Connect and read the stories shared here.
You mention you have HCM and an ICD, how is your health otherwise? Do you take meds for your heart? Are you an active person?

REPLY
1 reply
flyman437 | @flyman437 | Jul 11 5:49pm
In reply to @karukgirl "https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/ Hi Mark @flyman437, it looks like this is your first time posting, so welcome aboard..." + (show)
@karukgirl

https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Hi Mark @flyman437, it looks like this is your first time posting, so welcome aboard the Hypertrophic Cardiomyopathy group. I posted a link to the Camzyos group, and you may want to take some time and read all their stories if you have not yet.
You mention you are on Camzyos for a year now...how are your HOCM symptoms? Are you doing better than before Camzyos?

Jump to this post

Hi, the symptoms almost disrepair.I am doing 100% better, and it is a miracle pill.

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