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.

rrowner2 | @rrowner2 | Nov 15, 2018
In reply to @priscilla1972 "Hello, my name is Priscilla. I am 46yrs old and was diagnosed with HOCM in May..." + (show)
@priscilla1972

Hello, my name is Priscilla. I am 46yrs old and was diagnosed with HOCM in May 2018 with 40 gradient (I think this is what is called). I started off by taking Dialtiazem 120mg and 25mg of Metoprolol and now a little over a year later I am taking 360mg of Dialtiazem and 50mg of Metoprolol. We are now discussing having a septal myectomy since I still get shortness of breath and chest pain. My blood pressure is elevated quite a bit and my doctor says they are limited as to what meds I can receive because of my heart condition. I also have chronic kidney disease so I am worried how my elevated blood pressure will affect this and how my heart working so hard will affect my kidneys. How much medication did most of you take before you decided on surgery? How often should I be having pain and shortness of breath before I completely decide on surgery ? Thank you

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Hi Priscilla
My husband had septal myectomy on October 4 six weeks ago.
Prior to surgery and the reason he had the surgery was that he was on max doses of meds 100 mgms of atenolol and 250 mgms of Norpace and still having shortness of breath and syncope (he had hypertrophic cardiomyopathy for 30 + years)
Having the surgery had made an amazing difference. He’s 74

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Cynaburst, Alumna Mentor | @cynaburst | Nov 15, 2018
In reply to @priscilla1972 "Hello, my name is Priscilla. I am 46yrs old and was diagnosed with HOCM in May..." + (show)
@priscilla1972

Hello, my name is Priscilla. I am 46yrs old and was diagnosed with HOCM in May 2018 with 40 gradient (I think this is what is called). I started off by taking Dialtiazem 120mg and 25mg of Metoprolol and now a little over a year later I am taking 360mg of Dialtiazem and 50mg of Metoprolol. We are now discussing having a septal myectomy since I still get shortness of breath and chest pain. My blood pressure is elevated quite a bit and my doctor says they are limited as to what meds I can receive because of my heart condition. I also have chronic kidney disease so I am worried how my elevated blood pressure will affect this and how my heart working so hard will affect my kidneys. How much medication did most of you take before you decided on surgery? How often should I be having pain and shortness of breath before I completely decide on surgery ? Thank you

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When to have surgery is really an individual decision. I tried meds for a few years and my symptoms were getting worse and the side effects were more and more bothersome. I made the decision because I felt my quality of life had declined to the point where I was willing to take the risk of surgery. I think that is what you have to think about. At what point do you feel like you can't go on with all the drugs and will your situation improve substantially after surgery. For example, it may allow you to better control your blood pressure and take some stress off your kidneys. You should discuss the pros and cons with your doctor.

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niri9 | @niri9 | Dec 13, 2018

Hello everyone, Niri here from Seattle, Washington. 42 years old, diagnosed with HCM (apical and mid ventricular) couple years ago but recently having more frequent shortness of breath symptoms. Looking forward to connect with you all, sharing and learning together in this tough journey ahead.

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1 reply
rrowner2 | @rrowner2 | Dec 13, 2018
In reply to @niri9 "Hello everyone, Niri here from Seattle, Washington. 42 years old, diagnosed with HCM (apical and mid..." + (show)
@niri9

Hello everyone, Niri here from Seattle, Washington. 42 years old, diagnosed with HCM (apical and mid ventricular) couple years ago but recently having more frequent shortness of breath symptoms. Looking forward to connect with you all, sharing and learning together in this tough journey ahead.

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My husband was diagnosed a withHCM at 42 he was symptom free with meds til this year when out if the blue he had a complete heart block and a pacemaker defibrillator implanted. He took max dose of meds and had surgery for obstructive HCM on October 4 this year and has had an amazing recovery and is symptom free and minimal meds. So don’t be afraid if surgery is suggested

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pawcatuck | @pawcatuck | Jan 19, 2019

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

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rrowner2 | @rrowner2 | Jan 19, 2019
In reply to @pawcatuck "Hi I'm tom I had septal myectomy in 2012 and feel no better what is going..." + (show)
@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.

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dp52350 | @dp52350 | Jan 20, 2019

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 20, 2019
In reply to @dp52350 "Hello, I'm Debby. I'll be having a myectomy done on April 4, 2019 by Dr Dearani...." + (show)
@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?

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3 replies
pawcatuck | @pawcatuck | Jan 23, 2019
In reply to @colleenyoung "Welcome new HCM members @niri9 @pawcatuck and @dp52350. I invite @ronaldpetrovich @mbcube @rrowner2 @positivity @priscilla1972 @janicepike..." + (show)
@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.

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rrowner2 | @rrowner2 | Jan 23, 2019
In reply to @pawcatuck "I have seen the surgeon every year since the surgery. He first said it would take..." + (show)
@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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