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.

Amanda Roe | @amandajro | Apr 17, 2022
In reply to @pleasant7 "Hey everyone. I had a stress and echo this week. I’m also wearing a 30 day..." + (show)
@pleasant7

Hey everyone. I had a stress and echo this week. I’m also wearing a 30 day heart monitor. I have experienced chest pains on exertion. I have a family history of sudden cardiac death at younger ages. I lost a first cousin at age 42 to it. Unfortunately, many of my relatives died before having cardiac tests. Mom and Dad had heart attacks in early their 70s and Dad had 5 way bypass. Both are deceased now. My online tests results show Moderate hypokinesis in basal anteroseptal segment , Small left ventrical, Abnormal left ventrical filling, and Ejection Fraction 75%. My appointment isn’t until May 13th. By then the holster monitor will be available to my cardiologist. What questions should I ask? I’ve never had a heart cath but would like better confirmation of what’s going one. The online results say I have diastolic heart failure., stage 1. I’m 62 years old and female. Thank you.

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Hello @pleasant7 and welcome to Mayo Clinic Connect. Given your family history, I am glad to hear that you've had testing done for yourself and are getting care.

In order to hear from others' experiences with the Holster Monitor, I would like to bring in members such as @jadillow @jwillits8 @bonnieh218 and @razorclams who have all shared about their respective experiences with monitors.

While we wait for them to join the discussion, I though this link may be helpful to help explain the stage you referenced of heart failure.

- Heart Failure: https://www.mayoclinic.org/diseases-conditions/heart-failure/diagnosis-treatment/drc-20373148

How has wearing your heart monitor been going so far?

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1 reply
pleasant7 | @pleasant7 | Apr 17, 2022
In reply to @amandajro "Hello @pleasant7 and welcome to Mayo Clinic Connect. Given your family history, I am glad to..." + (show)
@amandajro

Hello @pleasant7 and welcome to Mayo Clinic Connect. Given your family history, I am glad to hear that you've had testing done for yourself and are getting care.

In order to hear from others' experiences with the Holster Monitor, I would like to bring in members such as @jadillow @jwillits8 @bonnieh218 and @razorclams who have all shared about their respective experiences with monitors.

While we wait for them to join the discussion, I though this link may be helpful to help explain the stage you referenced of heart failure.

- Heart Failure: https://www.mayoclinic.org/diseases-conditions/heart-failure/diagnosis-treatment/drc-20373148

How has wearing your heart monitor been going so far?

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Wearing the monitor has been ok I guess. It’s hard to know when I should press the alert button to record as the palpitations are pretty constant, coupled with chest pressure. I have recorded several events and I know regardless, the monitor is constantly recording. Thanks for the welcome!

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KEITH | @manning2000 | Apr 30, 2022
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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I was told that my heart problems would be solved with a TAVR procedure. Had TAVR on Aug. 31. On same day I was told I had HCM. When I left, I felt worse than before the TAVR because of all the other new drugs, I needed. I have gone down hill since then. I get tired just walking around the house. In my opinion, I didn’t need the TAVR. I needed the thickened heart mussel attended to.

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Amanda Burnett | @amandaa | May 11, 2022

Hi @manning2000 and welcome to Mayo Clinic Connect.
I'd like to invite @yorlik to say hi to you as they had the procedure and feel it may not be right for them either.

I encourage you to read this article in one of the heart journals, "TAVR: Miracle for Some, but No Improvements in Quality of Life for Others," https://www.tctmd.com/news/tavr-miracle-some-no-improvements-quality-life-others

Do you know why they suggested the TAVR in the first place?

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1 reply
bxr227 | @bxr227 | Jun 6, 2022
In reply to @vivian88 "@eelnaloblob18, depending on where your thickened muscle is (i.e. septal, mid-ventricle, apical), the myectomy you need..." + (show)
@vivian88

@eelnaloblob18, depending on where your thickened muscle is (i.e. septal, mid-ventricle, apical), the myectomy you need might require different techniques. For instance, I have apical HCM with mid-ventricular obstruction and apical aneurysm. The procedure I underwent was Apical Myectomy, which took a trans-apical approach. This trans-apical myectomy is different from the traditional septal myectomy. Your doctors should determine what kind of myectomy you need. I believe a few COEs can all do septal myectomy quite well. But if ultimately what you need is an Apical Myectomy, you have to go to Mayo Clinic in Rochester. The technique for this procedure was invented by Dr. Hartzell Schaff at Mayo Clinic. I do not believe other centers can do trans-apical myectomy as well as Mayo Clinc can. Something for you to consider. Hope everything works out well for you.

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How’s things been since the surgery

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1 reply
bxr227 | @bxr227 | Jun 6, 2022
In reply to @janicepike "4 weeks of apical myectomy. Healing well, but I sure am having dome down in the..." + (show)
@janicepike

4 weeks of apical myectomy. Healing well, but I sure am having dome down in the dumps days. Been.off all narcotics for over 2 weeks.

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How u feeling

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hazmat1 | @hazmat1 | Jun 7, 2022

Hello, my name is Kate. Driving to Mayo Clinic in Rochester in July for en evaluation. Any suggestions sbout hotels to stay? Thank you.

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 7, 2022
In reply to @hazmat1 "Hello, my name is Kate. Driving to Mayo Clinic in Rochester in July for en evaluation...." + (show)
@hazmat1

Hello, my name is Kate. Driving to Mayo Clinic in Rochester in July for en evaluation. Any suggestions sbout hotels to stay? Thank you.

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Hi Kate, you must be excited for your evaluation appointment. I'm tagging some fellow members who have had surgery at Mayo Clinic in Rochester who can help answer your questions, like @karukgirl @janicepike @rushtonrocks @lisa7 @mbcube @rrowner2 @angiev18 @janetcf and many more.

For suggestions about hotels and getting around Rochester, etc., you may be interested browsing the topics in the Visiting Mayo Clinic group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

In particular these discussions:
- Lodging in Rochester when visiting Mayo Clinic MN https://connect.mayoclinic.org/discussion/lodging/
- Tips on What To Do while at Mayo Clinic Rochester https://connect.mayoclinic.org/discussion/tips-for-upcoming-mayo-rochester-visit/

What other questions might you have?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 7, 2022
In reply to @bxr227 "How’s things been since the surgery" + (show)
@bxr227

How’s things been since the surgery

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Welcome @bxr227. I see you're asking fellow members how they are feeling post myectomy surgery. Have you had surgery or will be having surgery for HCM soon?

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1 reply
bxr227 | @bxr227 | Jun 7, 2022
In reply to @janicepike "Dr. Schaff did my surgery on January of 9th. For my apical myectomy. He is wonderful...." + (show)
@janicepike

Dr. Schaff did my surgery on January of 9th. For my apical myectomy. He is wonderful. Lucky to have had him.

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How are yoy

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