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.

lisa7 | @lisa7 | Apr 30, 2019
In reply to @sheim "I do not have a pacemaker or defibrillator and am hoping this will prevent me from..." + (show)
@sheim

I do not have a pacemaker or defibrillator and am hoping this will prevent me from having to have one. Am also hoping I can get off the Disopyramide. That stuff is AWFUL. I've read there is a Rx to help with the dry mouth, nose, eyes but ....who wants to add yet another medicine when I'm anti Rx in the first place. I'm normally even anti doctors but when a 2nd cardiologist read all my reports and said he agreed I decided maybe mine knows what he's talking about ....haha. The second guy also said it looks like it's possible I'll be referred for a sepal myectomy and if I were his patient I'd ONLY be sent to Mayo. When I had a follow up with my doctor and he suggested the surgery and also said Mayo I did feel better. He even said there is a doctor in Boise who said he would do it but he didn't recommend it. Then told me the stats. WOW! I had no idea how few of these are done and totally understand now why places like Mayo and Cleveland are the places to go.

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Myocardial disarray
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lisa7 | @lisa7 | Apr 30, 2019
In reply to @sheim "I do not have a pacemaker or defibrillator and am hoping this will prevent me from..." + (show)
@sheim

I do not have a pacemaker or defibrillator and am hoping this will prevent me from having to have one. Am also hoping I can get off the Disopyramide. That stuff is AWFUL. I've read there is a Rx to help with the dry mouth, nose, eyes but ....who wants to add yet another medicine when I'm anti Rx in the first place. I'm normally even anti doctors but when a 2nd cardiologist read all my reports and said he agreed I decided maybe mine knows what he's talking about ....haha. The second guy also said it looks like it's possible I'll be referred for a sepal myectomy and if I were his patient I'd ONLY be sent to Mayo. When I had a follow up with my doctor and he suggested the surgery and also said Mayo I did feel better. He even said there is a doctor in Boise who said he would do it but he didn't recommend it. Then told me the stats. WOW! I had no idea how few of these are done and totally understand now why places like Mayo and Cleveland are the places to go.

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The Septal Myectomy was very effective for me at the Mayo. The pacemaker and defibrillator is for a different component of this heart disease, which is an electrical component. The myocytes in the heart Are configured differently than in a normal heart. It is called “ myocyte disarray”. It can lead irrregular and potentially lethal heart rhythms like ventricular tachycardia and ventricular fibrillation. This of course can lead to sudden-death. You may want to talk to your second cardiologist about a pacemaker and defibrillator. Good luck.

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rrowner2 | @rrowner2 | Apr 28, 2019
In reply to @joerussell "Hello. I was diagnosed with HCM roughly 10 years ago. This past December I had a..." + (show)
@joerussell

Hello. I was diagnosed with HCM roughly 10 years ago. This past December I had a septal myectomy dome at the Mayo Clinic Inn Rochester. I look forward to participating in this group.

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Welcome thus is a great supportive knowledgeable group

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joerussell | @joerussell | Apr 28, 2019

Hello. I was diagnosed with HCM roughly 10 years ago. This past December I had a septal myectomy dome at the Mayo Clinic Inn Rochester. I look forward to participating in this group.

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Ethan McConkey, Moderator | @ethanmcconkey | Apr 28, 2019
In reply to @bmc123 "I'm confused. I just signed onto this today, but there is another group? "new (HCM) group..." + (show)
@bmc123

I'm confused. I just signed onto this today, but there is another group? "new (HCM) group on connect?"

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Hi @bmc123 and welcome to Connect. The post you are referring to was introducing the members to the new HCM group on Connect that you are now a part of! There is only the one HCM group.

Thank you for sharing your story. How have you been feeling since your septal myectomy?

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sheim | @sheim | Apr 28, 2019

I'm sure glad to hear positive things about Dr Schaff. That is who is doing my surgery.

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rrowner2 | @rrowner2 | Apr 28, 2019
In reply to @bmc123 "Hi all. It has been 3 years since my diagnosis of hypertrophic obstructive cardiomyopathy, and the..." + (show)
@bmc123

Hi all. It has been 3 years since my diagnosis of hypertrophic obstructive cardiomyopathy, and the two heart procedures I received from the Mayo Clinic. The 1st procedure was septal reduction by alcohol (it did not work), then I was finally given the option to have the septal myectomy (which I researched and wanted in the first place) and that went very well, thanks to Dr. Hartzel Schaff. This is just a snippet of my story. I have been looking for a support group for quite sometime, that did not charge a hefty fee yearly. I am interested in listening to others experiences as I have felt alone in this journey from the start.

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My husband was diagnosed with HCM 30 years ago and last October had septal myectomy by Dr Schaff and I think he now realises how compromised he was. He was convinced that the ablation would suit him better but after a long consultation with Dr Geske had the surgery instead. Stay in touch on this group it’s helpful and supportive

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Betty McGraw | @bmc123 | Apr 28, 2019

Hi all. It has been 3 years since my diagnosis of hypertrophic obstructive cardiomyopathy, and the two heart procedures I received from the Mayo Clinic. The 1st procedure was septal reduction by alcohol (it did not work), then I was finally given the option to have the septal myectomy (which I researched and wanted in the first place) and that went very well, thanks to Dr. Hartzel Schaff. This is just a snippet of my story. I have been looking for a support group for quite sometime, that did not charge a hefty fee yearly. I am interested in listening to others experiences as I have felt alone in this journey from the start.

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1 reply
thehound572001 | @thehound572001 | Apr 27, 2019
In reply to @kanaazpereira "Hello @thehound572001. I’m glad you’ve joined this incredible group on Connect – Welcome! I’d like to..." + (show)
@kanaazpereira

Hello @thehound572001. I’m glad you’ve joined this incredible group on Connect – Welcome!
I’d like to share this video, where Dr. Steve R. Ommen, director, Hypertrophic Cardiomyopathy Clinic at Mayo Clinic, reviews hypertrophic cardiomyopathy, sudden death and implantable defibrillators

Paul, with the additional diagnoses (heart failure, mitral valve disorder) what are the next steps in treatment?

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Thanks for the message back, still trying to get used to the way this is setup, sorry it took awhile to reply back, I hope what I say on here helps others to deal with there issues, it can be hard to deal with this condition, I watched my mother go through it, now I am going through it, I seem to have more symptoms that her though...

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