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 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.

ebony3 | @ebony3 | Jul 1 5:59am

Welcome Chris. The HCM walk is unique and challenging.

ljwright | @ljwright | Jul 3 8:24am

Ljwright just saying hi

Linda, Volunteer Mentor | @walkinggirl | Jul 4 10:44am

In reply to @ljwright "Ljwright just saying hi" + (show)

@ljwright Welcome! This is your first post, and we are glad to have you here. Please tell us about your HCM journey, if you would like to do that. When others are asking for tips, we look forward your input - what works, didn't work - added to our collective knowledge. Again, welcome!

wclues2 | @wclues2 | Jul 6 10:29am

Greetings Everyone,
Hope all is well. Just wanted to give an update on my ICD implant journey. I’m at the 7.5 month mark and after all the complications I am finally starting to feel like myself again. Thanks Be to God! 😊Still have some swelling on my left side and a bit of pain still, I can finally see the light at the end of the tunnel- and it’s not a train. 😉 Had a CT late last week and await results, hopefully all is well. Stay safe, and Take Care. Welcome to those who’ve just joined the group 🤗

HeartSister | @meprahs4554 | Jul 12 9:59am

Hi! Had septal myectomy at Mayo Rochester 07/10-2014. I’m a healthy 77 YO female. My follow up is at Mayo Jacksonville. DM with any concerns. I’m a WomenHeart Champion with WomenHeart.org co-leading a support group, participate at health fairs, giving educational talks, and advice for WomenHeart health locally (Savannah) and in Washington on Capitol Hill.

Linda, Volunteer Mentor | @walkinggirl | Jul 13 9:47am

In reply to @meprahs4554 "Hi! Had septal myectomy at Mayo Rochester 07/10-2014. I’m a healthy 77 YO female. My follow..." + (show)

@meprahs4554 Welcome to Connect! You just celebrated your 12th anniversary of your septal myectomy at Mayo in Rochester! What an impressive life has followed that event: contributing in many ways to make the public more aware of HCM (and heart disease in general). Are you familiar with the Hypertrophic Cardiomyopathy Association and perhaps know Lisa, who has also participated in various advice-giving on Capitol Hill? For others who may wish to become familiar with the WomenHeart organization, here is a link to find out more. https://www.womenheart.org/ Helping and supporting others is a goal of Connect as it is with WomenHeart. How did you find out about that organization and what are the most rewarding outcomes of your efforts?

HeartSister | @meprahs4554 | Jul 13 2:41pm

In reply to @walkinggirl "@meprahs4554 Welcome to Connect! You just celebrated your 12th anniversary of your septal myectomy at Mayo..." + (show)

@walkinggirl Thank you for your supportive comments! We at WomenHeart and currently recruiting new WomenHeart Champions. Anyone interested should visit http://www.WomenHeart.org or DM me.

janine8 | @janine8 | Jul 19 12:53pm

Hi, My HCM was discovered two years ago, as a retired adult with regular workout routines. After successful alcohol septal ablation surgery at Virginia Mason Hospital in Seattle, I was dismissed from the hospital after two days.
There were unexplained symptoms in high school and during my career.
I hope to connect with others.

Debra, Volunteer Mentor | @karukgirl | Jul 19 2:05pm

In reply to @janine8 "Hi, My HCM was discovered two years ago, as a retired adult with regular workout routines...." + (show)

Hello @janine8, and welcome to Mayo Clinic Connect.
I'm so glad you found our little online community. There is a lot of information about HCM, HOCM, open heart septal myectomy, Camzyos, and a few alcohol ablations...so you are in good company.
I found it interesting what you said..."There were unexplained symptoms in high school and durning my career." What did you do as your career that you can recall symptoms?

After I found at at age 60, I was able to look back and start connecting dots as well. It starts to make sense when you find out this mostly silent condition is lurking inside your heart.

Even though the alcohol ablation stay is typically much shorter than the open heart, septal myectomy, the healing time needs weeks to heal the induced infarction with careful attention to following orders like strenuous activities for several weeks.
You are relatively fresh out of the hospital, how are you feeling today?

janine8 | @janine8 | Jul 19 3:03pm

The high school gym teacher required students to run around the playing field three times. I was so slow that she brought all the other girls back to the gym building while I labored to complete the 3 circles. After a few sessions, she began bringing me in along with the rest of the class. We had an annual day off to climb a mountain, and I had begged faculty to drive me to get to the top. Shoveling snow would also leave me out of breath with a pounding heart. As an adult systems analyst, I would faint every year or two. My M.D. ruled out epilepsy.

In retirement, I ran 5 annual music festivals but became woozy/light headed at the end of the sixth one. I asked a friend to drive my car home and got a ride home with a neighbor. That's when I had a heart attack and the HCM was diagnosed. My surgery was completed in December 2024, as I recall. As of today, July 2026, I'm slowing down.