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) Support Group.

Hi @rolandsullivan,

Welcome to Connect. I moved your message to this existing discussion as I thought it would be easier for you to connect with fellow members who might have more insight with regard to your question...
“Is there a cardiac Dr. that is connected with Dr. Esselstyn or Dr. Ornish?”

Would you be able to share a few more details, @rolandsullivan? Have you been diagnosed with HCM?

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i will be coming as a patient in two weeks to deal with my leaking mitral valve

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Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome new HCM members @niri9 @pawcatuck and @dp52350. I invite @ronaldpetrovich @mbcube @rrowner2 @positivity @priscilla1972 @janicepike @PatMattos @ninimurphy @melthomas and others to join me in welcoming you all.

Debby, I'd like to introduce you to @cynaburst. I believe her surgeon was also Dr. Dearani. She wrote these notes from a presentation he gave last year:
> Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/

Niri and Debby, I can imagine that you're both nervous about what lies ahead. There are several discussions that may interested you as you prepare for surgery or make decisions about surgery:
> What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/
> HCM CARE tips - What do you wish you had known for after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/
> Life after HCM Surgery https://connect.mayoclinic.org/discussion/life-after-hcm-surgery/

Tom, reading so many stories about how people feel better after myectomy must be frustrating when this has not been your experience. Do you have multiple complicating issues or conditions? Has your cardiologist given any explanations?

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Thank you for all the input and info. Surgery is on my mind a lot and this does help.

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Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome new HCM members @niri9 @pawcatuck and @dp52350. I invite @ronaldpetrovich @mbcube @rrowner2 @positivity @priscilla1972 @janicepike @PatMattos @ninimurphy @melthomas and others to join me in welcoming you all.

Debby, I'd like to introduce you to @cynaburst. I believe her surgeon was also Dr. Dearani. She wrote these notes from a presentation he gave last year:
> Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/

Niri and Debby, I can imagine that you're both nervous about what lies ahead. There are several discussions that may interested you as you prepare for surgery or make decisions about surgery:
> What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/
> HCM CARE tips - What do you wish you had known for after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/
> Life after HCM Surgery https://connect.mayoclinic.org/discussion/life-after-hcm-surgery/

Tom, reading so many stories about how people feel better after myectomy must be frustrating when this has not been your experience. Do you have multiple complicating issues or conditions? Has your cardiologist given any explanations?

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Tom, did you have your surgery at the Mayo Clinic?

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Profile picture for pawcatuck @pawcatuck

What do you think? Should I go to another surgeon here in Arkansas or would I be wasting my time? I think Surgery for HCM is not done here very often. Would you suggest a hospital or surgeon in Arkansas?

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W
My husband chose Mayo Rochester because they perform more surgeries than any of our hospitals in Southern California and have a fantastic HCM program, so maybe it’s worth going for a consultation and possible surgery.

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Profile picture for rrowner2 @rrowner2

Sorry to hear this, time for another opinion

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What do you think? Should I go to another surgeon here in Arkansas or would I be wasting my time? I think Surgery for HCM is not done here very often. Would you suggest a hospital or surgeon in Arkansas?

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Profile picture for pawcatuck @pawcatuck

I have seen the surgeon every year since the surgery. He first said it would take about 2 years for me to feel any good results from it. It's been about 6 years now and I still am out of breath from doing minimal things. last year he said "It is what it is and that i will have to just live with it. So disappointed and frustrating. I'm 72 and feel 80. I have a pace maker and take warfarin because of a mechanical valve. My surgeon was a Dr. Warren In Hot Springs, Ar.

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Sorry to hear this, time for another opinion

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Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome new HCM members @niri9 @pawcatuck and @dp52350. I invite @ronaldpetrovich @mbcube @rrowner2 @positivity @priscilla1972 @janicepike @PatMattos @ninimurphy @melthomas and others to join me in welcoming you all.

Debby, I'd like to introduce you to @cynaburst. I believe her surgeon was also Dr. Dearani. She wrote these notes from a presentation he gave last year:
> Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/

Niri and Debby, I can imagine that you're both nervous about what lies ahead. There are several discussions that may interested you as you prepare for surgery or make decisions about surgery:
> What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/
> HCM CARE tips - What do you wish you had known for after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/
> Life after HCM Surgery https://connect.mayoclinic.org/discussion/life-after-hcm-surgery/

Tom, reading so many stories about how people feel better after myectomy must be frustrating when this has not been your experience. Do you have multiple complicating issues or conditions? Has your cardiologist given any explanations?

Jump to this post

I have seen the surgeon every year since the surgery. He first said it would take about 2 years for me to feel any good results from it. It's been about 6 years now and I still am out of breath from doing minimal things. last year he said "It is what it is and that i will have to just live with it. So disappointed and frustrating. I'm 72 and feel 80. I have a pace maker and take warfarin because of a mechanical valve. My surgeon was a Dr. Warren In Hot Springs, Ar.

REPLY
Profile picture for dp52350 @dp52350

Hello, I'm Debby. I'll be having a myectomy done on April 4, 2019 by Dr Dearani. I'm a little nervous and am just looking for some input. Others experience with this.

Jump to this post

Welcome new HCM members @niri9 @pawcatuck and @dp52350. I invite @ronaldpetrovich @mbcube @rrowner2 @positivity @priscilla1972 @janicepike @PatMattos @ninimurphy @melthomas and others to join me in welcoming you all.

Debby, I'd like to introduce you to @cynaburst. I believe her surgeon was also Dr. Dearani. She wrote these notes from a presentation he gave last year:
> Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/

Niri and Debby, I can imagine that you're both nervous about what lies ahead. There are several discussions that may interested you as you prepare for surgery or make decisions about surgery:
> What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/
> HCM CARE tips - What do you wish you had known for after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/
> Life after HCM Surgery https://connect.mayoclinic.org/discussion/life-after-hcm-surgery/

Tom, reading so many stories about how people feel better after myectomy must be frustrating when this has not been your experience. Do you have multiple complicating issues or conditions? Has your cardiologist given any explanations?

REPLY

Hello, I'm Debby. I'll be having a myectomy done on April 4, 2019 by Dr Dearani. I'm a little nervous and am just looking for some input. Others experience with this.

REPLY
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