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.

janicepike | @janicepike | Jul 15, 2017

Apicital myophathy. He went in and saved a bunch of extra heart muscle off, basically.

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77dhowell | @77dhowell | Jul 15, 2017
In reply to @choochoo "My husband few this disease and was just diagnosed a few months ago. He is 67..." + (show)
@choochoo

My husband few this disease and was just diagnosed a few months ago. He is 67 and doc doesn't think it is very bad. His symptoms show he is having problems but tests show it's not bad. We are very frustrated. Our doc is very good.

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I had that problem since 1996. I am now on oxygen waiting on a heart transplant. This is based on my symptoms not tests.
At one point I thought I might die before anyone believed me.
The final test that showed a problem was a test where they had me on my back, pedaling a bike while they measured the pressure in my heart. It went up 300% over maximum with exercise.
Every other test for 20 plus years could did not show the level of physical difficulty I have was actually experiencing. Good luck. Keep going until you find the help you need! Your life depends on it.

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Choochoo | @choochoo | Jul 15, 2017
In reply to @choochoo "My husband few this disease and was just diagnosed a few months ago. He is 67..." + (show)
@choochoo

My husband few this disease and was just diagnosed a few months ago. He is 67 and doc doesn't think it is very bad. His symptoms show he is having problems but tests show it's not bad. We are very frustrated. Our doc is very good.

Jump to this post

For about 3 yrs he has been dizzy and last 6 months fainting. Headaches, dizzeness walking a short distance and very tired in the afternoon. Because the tests they have run don't look bad enough to do surgery they think his symptoms are basiclly in his head. We don't agree. Meet on Monday with PA.

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77dhowell | @77dhowell | Jul 15, 2017
In reply to @janicepike "No, I had the same as in your condition. Dr. Schaff, did the surgery , for..." + (show)
@janicepike

No, I had the same as in your condition. Dr. Schaff, did the surgery , for it. A bit over 6 months out. Feeling fantastic.

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What kind of surgery did you have?

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 15, 2017
In reply to @choochoo "My husband few this disease and was just diagnosed a few months ago. He is 67..." + (show)
@choochoo

My husband few this disease and was just diagnosed a few months ago. He is 67 and doc doesn't think it is very bad. His symptoms show he is having problems but tests show it's not bad. We are very frustrated. Our doc is very good.

Jump to this post

Thank you so much for following up and sharing, @77dhowell. I'd encourage you to take a look at the Transplant group too, on Connect: https://connect.mayoclinic.org/group/transplants/ where you will find a few discussions that might interest you.
How are you coping and managing your symptoms at present?

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 15, 2017
In reply to @choochoo "My husband few this disease and was just diagnosed a few months ago. He is 67..." + (show)
@choochoo

My husband few this disease and was just diagnosed a few months ago. He is 67 and doc doesn't think it is very bad. His symptoms show he is having problems but tests show it's not bad. We are very frustrated. Our doc is very good.

Jump to this post

Hello @choochoo,

Welcome to Connect. Thanks for joining; I'm so glad to see that you've connected with some of the members in this group.
Would you share a few more details about your husband? What symptoms is he experiencing?

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janicepike | @janicepike | Jul 15, 2017

No, I had the same as in your condition. Dr. Schaff, did the surgery , for it. A bit over 6 months out. Feeling fantastic.

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1 reply
77dhowell | @77dhowell | Jul 14, 2017
In reply to @janicepike "I had surgery for the same thing you have. Hooe you can get the surgety" + (show)
@janicepike

I had surgery for the same thing you have. Hooe you can get the surgety

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You mean transplant?

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janicepike | @janicepike | Jul 14, 2017

I had surgery for the same thing you have. Hooe you can get the surgety

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