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.

Cynaburst, Alumna Mentor | @cynaburst | Nov 2, 2017
In reply to @mehlisue "My name is Melinda. I am 60 years old. I was diagnosed with HOCM in 2004...." + (show)
@mehlisue

My name is Melinda. I am 60 years old. I was diagnosed with HOCM in 2004. Medication is no longer able to control the issues. I have Septal Myectomy date November 20th 2017. I had to put off my surgery because two years ago getting ready for heart surgery, breast cancer was discovered. After surgery and treatment for this, It was obvious way to much time had passed and now in the middle of cancer treatment, I have no choice left but surgery. I will survive the Cancer and I am hopeful with the heart surgery. So many issues are involved at one time has me concerned. The doctors are confident. They say this will improve my health so much that I will be shocked at how well I feel. That is encouraging to hear. Has anyone else gone through this surgery with a Mastectomy on the right side and how much did that impact the recovery as it appears from post here that upper body strength is great diminished from the heart surgery? I have almost 80% use on mastectomy side, limited range, but I still plow through daily house chores. I would rather deal with reality than be surprised and find out the recovery and pain issues are not what I expected. I need to plan for in home help I think? Thanks Melinda

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Hi Melinda - I do know one person who had both breast cancer and a myectomy. I can ask her to weigh in here. As far as the recovery, I found that I was able to do much more than I expected. In fact, I was able to do fine on my own at home. I was able to walk around, make myself a sandwich, etc. It would be nice to have someone available to help if you need errands run, drugstore, etc. and just in case anything happens, but you won't need anyone more than a friend or relative who checks in on your periodically.

REPLY
mehlisue | @mehlisue | Nov 2, 2017
In reply to @cynaburst "Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one..." + (show)
@cynaburst

Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one of the mentors here and got involved with Mayo Clinic and its HCM program when I traveled to Mayo over ten years ago now to have a myectomy. I was so impressed with the treatment I got at Mayo, and became so convinced of the importance of being treated at a specialty center, that since then I have worked to spread the word about how to live well with HCM. The most critical thing is, whether you need surgery, or medical treatment, or anything else related to HCM, having a team that is knowledgeable about HCM is so important.

As far as my HCM story, I have a long family history with HCM. I lost my grandfather, uncle and father to the disease. I have had an ICD for 14 years, and had a myectomy 10.5 years ago. I had my son knowing I had the disease and my father lived most of his life with the disease, so I have pretty much lived through or witnessed just about every stage of HCM. All of these experiences led me to create two blogs about my experiences with HCM and to help educate patients about it.

The first blog: http://www.cynthiassummeradventure.blogspot.com is about my myectomy experience at Mayo Clinic. At the time it served as a updating tool for my friends and family, but since then it has helped lots of folks learn what to expect as they prepare for myectomy.

I recently created http://www.HCMBeat.com which is a collection of resources about HCM as well as news of interest about the disease, new treatments, people living with the disease, etc.

Anyway, that is about it for me right now. Please join the conversation and tell us about you and your HCM story. We would love to hear about you and your own experiences. One thing that I have really learned while navigating HCM myself is that it makes such a difference to have others who have been there before to guide you along the way and help you feel less alone. Through my interactions with other patients, I had the strength to seek my myectomy surgery, I have learned about the disease and how to live best with it, and many other common sense tips that have made a huge difference in how I successfully live my life today.

I hope that this community will do the same for someone else so the word will continue to spread.

Welcome all, and I hope to hear more from you.

Cynthia

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Thank you Cynthia. I hope this group is still active.

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mehlisue | @mehlisue | Nov 2, 2017

My name is Melinda. I am 60 years old. I was diagnosed with HOCM in 2004. Medication is no longer able to control the issues. I have Septal Myectomy date November 20th 2017. I had to put off my surgery because two years ago getting ready for heart surgery, breast cancer was discovered. After surgery and treatment for this, It was obvious way to much time had passed and now in the middle of cancer treatment, I have no choice left but surgery. I will survive the Cancer and I am hopeful with the heart surgery. So many issues are involved at one time has me concerned. The doctors are confident. They say this will improve my health so much that I will be shocked at how well I feel. That is encouraging to hear. Has anyone else gone through this surgery with a Mastectomy on the right side and how much did that impact the recovery as it appears from post here that upper body strength is great diminished from the heart surgery? I have almost 80% use on mastectomy side, limited range, but I still plow through daily house chores. I would rather deal with reality than be surprised and find out the recovery and pain issues are not what I expected. I need to plan for in home help I think? Thanks Melinda

REPLY
2 replies
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Oct 30, 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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Hi @fitchizumi,

You might wish to see this post by Mentor @cynaburst, who recently attended the International Symposium on HCM where Dr. Joseph Dearani, Chief of Cardiac Surgery at Mayo Clinic, gave a presentation on myectomy:
https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/

REPLY
fitchizumi | @fitchizumi | Oct 30, 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

I have some complications For a myectomy, SYRINGOMYELIA c-spine, affecting right trunk and extremities, five water filled cysts in my liver left lobe. I’m wondering if they would even consider me lots of nerve pain and diminished sensation.I’m very mobile so that’s no problem had problems since age 24 years. Any thoughts?

REPLY
fitchizumi | @fitchizumi | Oct 24, 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

Hi everyone, I want to see a specialist for HCM. He said since my echoes are all over the place I need to have an MRI.That Takes Pl., November 15th. He said he would call me with the results .I felt very comfortable .director of sports cardiology & HCM program ,
Director of cardiovascular imaging .So we will go from there. I feel so much better don’t seem to be as exhausted these past four days. I’m sure it’s psychological my best everyone I’m keeping you in my good thoughts and prayers .

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Oct 22, 2017

Hi @rmwundrow,

I just wanted to follow up and ask about your husband's progress; how are you doing? We'd love to hear back from you.

REPLY
fitchizumi | @fitchizumi | Oct 4, 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

Hi, thank you so much for the information it make sense now. Fitchizumi

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Oct 3, 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

Here is a link which explains ejection fraction: It is basically the force with which the heart pumps blood into the body. http://www.mayoclinic.org/ejection-fraction/expert-answers/faq-20058286

Gradient is the pressure gradient across the left ventricular outflow tract. It is measured in millimeters of mercury. If you picture a garden hose that is kinked, the force of the water is stronger near the kink. The same is true of the heart and blood. The obstruction causes an increase in the force of the blood flow through the mitral valve. http://www.4hcm.org/content.asp?contentid=154

REPLY
fitchizumi | @fitchizumi | Oct 3, 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

When I wrote to you in June I could walk 1/2 to 3/4 of a mile. Now it's about one city block and not every day.We still don't understand what ejection fraction is or gradient. Could someone explain this to us I'm not good at reading the echoes.

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