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?

@Sensation

Hi Terry Welcome. I have HCM too, but mine is Non Obstructive. Mine has gotten worse at times too. It’s never easy to deal with. I know how you feel. 🙁
Hope you feel better soon!

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I’m thinking I’ll have surgery soon. Tired of being tired. Wishing you the best!!

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@PatMattos

Hi, Terry, welcome!

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Pat, we are leaving for up north. Thanks for welcoming me here! I miss our chats but I’m babysitting today and tomorrow and leave Sunday. Call any evening you have a few minutes. I hate nothing you as you work long hours!

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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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@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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Thanks Margie! How are you doing?

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@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 hope surgery works for you, since mine is non obstructive I don’t think I have that option, besides I don’t really wanna have surgery anyways, to risky I think. But with yours, since you have HCOM it’s probably better than the alternative. Hope everything goes well.

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

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@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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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.

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@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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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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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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@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 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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Did your doc try alcohol abrasion before a heart transplant?

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@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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