HCM-ers: Introduce yourself or just say hi

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) group.

@karukgirl

Welcome! You have found a wonderful place to share your experience, gain information, and learn from others who have walked your same path. Poke around this sight and you will learn many things about what you asked for. Places to stay. Places to eat, etc. Every single person is unique and therefore each one of us has a different recovery and different experience from this huge surgery. One thing we all seem to have in common is the care given by every employee of the Mayo Clinic…from housekeeping to surgeon, is the finest in the land. Dare I say the world. You will be in good hands. If you have time, read some of what we fellow HOCM folks posted before and after. I wrote a post about where we stayed. *Courtyard by Marriot. Directly across the street from St. Mary entrance. Could not have been more convenient. From there, free shuttles to the downtown Mayo Clinic/Gonda Bldg. Where we ate: *Chester's downtown for lunch/dinner. And the walking distance to lots of fast food and the fresh food market for healthy fare and wine! As for what to do? You will find that your day of surgery is suddenly here, and from that point on the days pass quickly but the nights are long. Thank goodness for the nurses. They are gifts from God. Wishing you all the best. It's not your typical surgery, but the Mayo Clinic is not your typical hospital. They are world class and it makes it easy to put your life in their hands. Keep us posted, and again best wishes and prayers.

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Thank you Karukgirl, that is good info.
I am 55.5, in relatively good shape (180 lbs) and ready to get this over with so I can get into recovery. I'm not good at it but I like to do P90X and I Pastor in MI so I'm looking forward to getting back in shape and in the pulpit. With 2 bypasses & the septal myopathy it looks like its gonna be a while.
Please keep in touch with any info you think will be helpful to my wife & I.

dg

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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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@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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@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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@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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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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@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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@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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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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@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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@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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@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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