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?

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

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

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Shaved…

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@choochoo

Did your doc try alcohol abrasion before a heart transplant?

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@77dhowell – Have you been evaluated at Mayo Clinic? They do a surgery called an apical myectomy which can help people with apical HCM. Mayo is the only place they do the surgery, and it has done miracles for some people with apical HCM.

Here are some videos you can watch:

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@choochoo

Did your doc try alcohol abrasion before a heart transplant?

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My husband has obstructive HCM. They usually do alcahol abrasive surgery for it. He has trouble with the blood getting out. Tomorrow we follow up with PA.

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@choochoo

Did your doc try alcohol abrasion before a heart transplant?

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Love it, after 6.months.out. very grateful…

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@choochoo

Did your doc try alcohol abrasion before a heart transplant?

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Hi @choochoo,

How did your husband’s appointment go? Do let us know of any updates.

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@choochoo

Did your doc try alcohol abrasion before a heart transplant?

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They are not going to do anything right now. They will moniter him for the time being. If things get worse they will see him again. Thanks for info on my kids for getting an echo instead of finding the gene. They recommended we get echo for the kids too. They will treat with meds as well. That’s it. I will keep u posted.

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