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?

@pawcatuck

Hi I'm tom I had septal myectomy in 2012 and feel no better what is going on?

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I’m so sorry you don’t feel better Tom, are you taking beta blockers,? I thought that after surgery my husband would not need them but he still needs them although less than half of he took prior to surgery. The surgery removes the obstruction still has hypertrophic cardiomyopathy for which he needs the meds.
Please talk to you doctor.

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.

@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.

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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?

@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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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.

@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

@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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@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.

@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?

@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.

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

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?

thank you. I have been treated and diagnosed with cardiac heart disease. HCM does not have the treatments I need. I have started the in take process and expect to be there next week.
point two. Dr. Esselstyn of the cleveland clinic and Ornish from the san fran hospital are know for Presidents Clinton life by reversing his heart disease. H

Dr. Esselstyn referedme to mayo because you are the leading heart hospital in the usa.

I thought I saw on your web site a Mayo Dr. that incorporates the whole plant based diet from Dr. Esselstyn into his team work at Mayo.

Hello, I do not remember my username?

@lisa7

Hello, I do not remember my username?

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Got it!

I am new to this discussion group. I am a 68 year old woman from southern Indiana and was diagnosed with HCM about 3 years ago. I live a very active lifestyle being that we live on a farm with horses and a big garden so do not live a sedentary life. Although in the early stages of HCM with symptoms being somewhat controlled with meds, lifestyle, diet, and exercise for now, I would like to get a second opinion and consultation from Mayo this spring to see how I can prevent this from getting worst. I am also having a difficult time dealing with the meds. Do you think getting a second opinion from Mayo in the early stages is a good idea at this time. My cardiologist at home is very good but has not had the broad range of experience with HCM.

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