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.

Margie11 | @margie11 | Jun 24, 2017
In reply to @margie11 "Hi Terry, good to see you found this group. Wonderful support here, and lots of information...." + (show)
@margie11

Hi Terry, good to see you found this group. Wonderful support here, and lots of information. Wishing you have a smooth journey!

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I'm ok, thanks. I don't have HCM (I haven't had genetic testing done yet) but my 84 y/o father does, he underwent septal myectomy and triple bypass surgeries simultaneously 5 years ago on an emergency basis. My family had never heard about HCM at the time, and that made the entire situation very scary. I wish I knew about this forum, the knowledge and support here are wonderful. My father is doing well now and is still very active. I
follow this group so I can keep abreast of the latest info. From my experience and from what I've seen here, if you need to have surgery I would recommend a high volume center like Mayo. All the best to you!

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fitchizumi | @fitchizumi | Jul 5, 2017
In reply to @jamienolson "Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to..." + (show)
@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I'm sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

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Was on Metoprolol,can't take it I'm on the verapamil 120 now. Was 180mg. All that's left norpace. Still having extreme fatigue. The heart doctor tomorrow!

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TerryViazanko | @terryviazanko | Jul 5, 2017
In reply to @terryviazanko "Thank you!!" + (show)
@terryviazanko

Thank you!!

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Sorry, so much going on in my life I'm taking care of 2 year old grandson. I have midventriculat obstruction with apical aneurysm.my gradient has improved since 480 mg of Verapamil but I'm exhausted and ache in all joints. I'm on blood thinner too. Probably need surgery. Will find out soon.

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 5, 2017
In reply to @jamienolson "Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to..." + (show)
@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I'm sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

Jump to this post

Wishing you well, @fitchizumi. Please keep us updated after your appointment with the cardiologist tomorrow.

REPLY
fitchizumi | @fitchizumi | Jul 6, 2017
In reply to @jamienolson "Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to..." + (show)
@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I'm sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

Jump to this post

Dr. doesn't think verapamil 120 is the cause of my fatigue. They're going to do some bloodwork and check to see if I'm anemic! He said,heart is strong, HCM & Afib are my biggest problems. He doesn't think I'm ready for surgery yet. See him in two months.

REPLY
fitchizumi | @fitchizumi | Jul 6, 2017
In reply to @jamienolson "Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to..." + (show)
@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I'm sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

Jump to this post

Ronald, I am always very fatigued, Plus my head never feels clear. I'm allergic to lots of medications . Metoprolol bothered me.Take Xarelto 20mg & verapamil 120 for the heart. I take a lots of medications for chronic health problems. don't know what medicine bothers me. Could be a combination of everything I take.I could'nt handle a lot of blood pressure medicines pre HCM, in the past.

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Choochoo | @choochoo | Jul 14, 2017

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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5 replies
77dhowell | @77dhowell | Jul 14, 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

I am 57. My diagnoses did not look that bad either but my symptoms have continued to escalate and I am now on the heart transplant list.
The severity of the symptoms is what matters.

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Choochoo | @choochoo | Jul 14, 2017

Did your doc try alcohol abrasion before a heart transplant?

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6 replies
77dhowell | @77dhowell | Jul 14, 2017
In reply to @choochoo "Did your doc try alcohol abrasion before a heart transplant?" + (show)
@choochoo

Did your doc try alcohol abrasion before a heart transplant?

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No I have apictal type. My bottom of my heart is thick and it won't open up to let enough blood in. None of the typical treatments work for my heart.
My choices were heart Transplant or hospice.

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