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 Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 25, 2016

TIP: Setting your email preferences
- Start by following the HCM group http://mayocl.in/2eJdqOc

- Control how many emails you receive by editing your Account Settings here: https://connect.mayoclinic.org/account.
- Learn how to set your preferences http://mayocl.in/2coxXJN

I recommend checking the box that says “ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST.” Then your digest emails will be specific to your activity and not include other updates from across Connect.

I hope members will keep the "when someone @mentions me in a post" ticked as the moderators use the @mention feature to bring you into a discussion relevant to your experience. This is what Connect is all about, helping to connect people to help others.

REPLY
Profile picture for debcrawford
debcrawford | @debcrawford | Oct 25, 2016
In reply to @cynaburst "Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one..." + (show)
Profile picture for Cynaburst, Alumna Mentor @cynaburst

Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one of the mentors here and got involved with Mayo Clinic and its HCM program when I traveled to Mayo over ten years ago now to have a myectomy. I was so impressed with the treatment I got at Mayo, and became so convinced of the importance of being treated at a specialty center, that since then I have worked to spread the word about how to live well with HCM. The most critical thing is, whether you need surgery, or medical treatment, or anything else related to HCM, having a team that is knowledgeable about HCM is so important.

As far as my HCM story, I have a long family history with HCM. I lost my grandfather, uncle and father to the disease. I have had an ICD for 14 years, and had a myectomy 10.5 years ago. I had my son knowing I had the disease and my father lived most of his life with the disease, so I have pretty much lived through or witnessed just about every stage of HCM. All of these experiences led me to create two blogs about my experiences with HCM and to help educate patients about it.

The first blog: http://www.cynthiassummeradventure.blogspot.com is about my myectomy experience at Mayo Clinic. At the time it served as a updating tool for my friends and family, but since then it has helped lots of folks learn what to expect as they prepare for myectomy.

I recently created http://www.HCMBeat.com which is a collection of resources about HCM as well as news of interest about the disease, new treatments, people living with the disease, etc.

Anyway, that is about it for me right now. Please join the conversation and tell us about you and your HCM story. We would love to hear about you and your own experiences. One thing that I have really learned while navigating HCM myself is that it makes such a difference to have others who have been there before to guide you along the way and help you feel less alone. Through my interactions with other patients, I had the strength to seek my myectomy surgery, I have learned about the disease and how to live best with it, and many other common sense tips that have made a huge difference in how I successfully live my life today.

I hope that this community will do the same for someone else so the word will continue to spread.

Welcome all, and I hope to hear more from you.

Cynthia

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Hi, this is Deb from Iowa! I was diagnosed about 8 or 9 years ago with HOCM, I have a Pacemaker and Defibrillator in place. Waiting for my Cardiologist to make me an appointment with Mayo for a Myectomy. Thank you so much for starting this group!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 25, 2016
In reply to @onewholovesrock "Hello. Joe from Wisconsin. HCM (apical) and poraximal afib. ICD. Seeing Dr. Tajik in Milwaukee. Never..." + (show)
Profile picture for onewholovesrock @onewholovesrock

Hello. Joe from Wisconsin. HCM (apical) and poraximal afib. ICD. Seeing Dr. Tajik in Milwaukee. Never been to Mayo Clinic.

Jump to this post

Hey Joe. You don't have to be a Mayo patient to participate on Mayo Clinic Connect. Val isn't either. We just want HCMers to not have to go it alone.

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Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 25, 2016

What a great mixture of members. @cynaburst @Sensation @ronaldpetrovich and @margie11 have been around since Connect's early days. @onewholovesrock @mistymopps3 and @mbcube have just joined this month. More importantly, you are all at different stages of managing HCM and have a wealth of information to share.
Welcome all.

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Profile picture for onewholovesrock
onewholovesrock | @onewholovesrock | Oct 25, 2016

Hello. Joe from Wisconsin. HCM (apical) and poraximal afib. ICD. Seeing Dr. Tajik in Milwaukee. Never been to Mayo Clinic.

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2 replies
Profile picture for mistymopps3
mistymopps3 | @mistymopps3 | Oct 25, 2016
In reply to @Sensation "Hi I'm Sensation and I also have Apical HCM." + (show)
Profile picture for Sensation @Sensation

Hi I'm Sensation and I also have Apical HCM.

Jump to this post

Good to meet someone else with apical cardiomyopathy as it's quite rare

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1 reply
Profile picture for Ron Petrovich
Ron Petrovich | @ronaldpetrovich | Oct 25, 2016
In reply to @cynaburst "Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one..." + (show)
Profile picture for Cynaburst, Alumna Mentor @cynaburst

Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one of the mentors here and got involved with Mayo Clinic and its HCM program when I traveled to Mayo over ten years ago now to have a myectomy. I was so impressed with the treatment I got at Mayo, and became so convinced of the importance of being treated at a specialty center, that since then I have worked to spread the word about how to live well with HCM. The most critical thing is, whether you need surgery, or medical treatment, or anything else related to HCM, having a team that is knowledgeable about HCM is so important.

As far as my HCM story, I have a long family history with HCM. I lost my grandfather, uncle and father to the disease. I have had an ICD for 14 years, and had a myectomy 10.5 years ago. I had my son knowing I had the disease and my father lived most of his life with the disease, so I have pretty much lived through or witnessed just about every stage of HCM. All of these experiences led me to create two blogs about my experiences with HCM and to help educate patients about it.

The first blog: http://www.cynthiassummeradventure.blogspot.com is about my myectomy experience at Mayo Clinic. At the time it served as a updating tool for my friends and family, but since then it has helped lots of folks learn what to expect as they prepare for myectomy.

I recently created http://www.HCMBeat.com which is a collection of resources about HCM as well as news of interest about the disease, new treatments, people living with the disease, etc.

Anyway, that is about it for me right now. Please join the conversation and tell us about you and your HCM story. We would love to hear about you and your own experiences. One thing that I have really learned while navigating HCM myself is that it makes such a difference to have others who have been there before to guide you along the way and help you feel less alone. Through my interactions with other patients, I had the strength to seek my myectomy surgery, I have learned about the disease and how to live best with it, and many other common sense tips that have made a huge difference in how I successfully live my life today.

I hope that this community will do the same for someone else so the word will continue to spread.

Welcome all, and I hope to hear more from you.

Cynthia

Jump to this post

Cynthia, this group is so fortunate to have you and all your dedicated efforts to educate and help people with HCM. I was diagnosed with HCM about 1.5 years ago while visiting a NP for the flu. She heard a murmur and a few hours later after an echocardiogram they said I had HCM. I tried medicine for several months and still felt rotten, so last December I underwent a septal myectomy at Mayo and now feel wonderful. It's changed my life and I have not felt this good in 30 years. (I'm 55 now) The care here has been outstanding from diagnosis to rehab. I look forward to contributing when I can to the group and offering the patient perspective.

REPLY
Profile picture for Sensation
Sensation | @Sensation | Oct 25, 2016

Hi I'm Sensation and I also have Apical HCM.

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