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 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.

Choochoo | @choochoo | Jul 18, 2017

In reply to @choochoo "Did your doc try alcohol abrasion before a heart transplant?" + (show)

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.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 17, 2017

In reply to @choochoo "Did your doc try alcohol abrasion before a heart transplant?" + (show)

Hi @choochoo,

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

janicepike | @janicepike | Jul 16, 2017

In reply to @choochoo "Did your doc try alcohol abrasion before a heart transplant?" + (show)

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

Choochoo | @choochoo | Jul 16, 2017

In reply to @choochoo "Did your doc try alcohol abrasion before a heart transplant?" + (show)

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.

Cynaburst, Alumna Mentor | @cynaburst | Jul 16, 2017

In reply to @choochoo "Did your doc try alcohol abrasion before a heart transplant?" + (show)

@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's a video you can watch:
https://www.youtube.com/watch

janicepike | @janicepike | Jul 15, 2017

Shaved...

janicepike | @janicepike | Jul 15, 2017

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

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)

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.

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)

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.