1. < Hypertrophic Cardiomyopathy (HCM)
Profile picture for Colleen Young, Connect Director
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.

Profile picture for fitchizumi
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)
Profile picture for Jamie Olson @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 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 .

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Profile picture for Kanaaz Pereira, Connect Moderator
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.

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Profile picture for fitchizumi
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)
Profile picture for Jamie Olson @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, thank you so much for the information it make sense now. Fitchizumi

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Profile picture for Cynaburst, Alumna Mentor
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)
Profile picture for Jamie Olson @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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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

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Profile picture for fitchizumi
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)
Profile picture for Jamie Olson @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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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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Profile picture for Kanaaz Pereira, Connect Moderator
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Oct 3, 2017
In reply to @jamienolson "Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to..." + (show)
Profile picture for Jamie Olson @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

Thanks so much for updating us, @fitchizumi. Mentor @cynaburst has often underlined the fact that "you would be best served to find a cardiac team that specializes in HCM." I'm glad you are consulting a specialist. I wish you the best of luck, and do let us know of your progress, or if you have any questions.

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Profile picture for Kanaaz Pereira, Connect Moderator
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Oct 3, 2017

Hi @rmwundrow,

While we wait for other Connect members to join in, I'd encourage you to view to this information:
– Hypertrophic cardiomyopathy care at Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208

I'm certain that @cynaburst and others will return with some more insights. @rmwundrow, I realize that this is frightening and that you're doing all that you can. We're here to help.

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Profile picture for rmwundrow
rmwundrow | @rmwundrow | Oct 3, 2017
In reply to @rmwundrow "Hi I am writing for my husband who was recently diagnosed with HCM. He is being..." + (show)
Profile picture for rmwundrow @rmwundrow

Hi I am writing for my husband who was recently diagnosed with HCM. He is being seen at the Minn MN VA clinic and his last test was a stress echo. 120 pressures at rest and almost 400 at stress. Dr was present for test and talked at length with him as he described HCM and what the valves are doing. Overwhelmed! After reading much on the HCMA website I saw the link to the closest Dr who has experience in HCM and was happy how close a specialist in HCM really is to us. BTW we live in Wisconsin about 150 miles from VA and not sure how far from Rochester. Our heads are spinning. My husband also was recently diagnosed with Sarcoid, so tomorrow we are on our way to University of Minn Research for a PET/CT scan of his heart to rule out Sarcoidosis in his heart. Next appointment at the VA is Oct 25th for an Angiogram and mapping. He has had numerous other tests and we are getting weary. I would love to have a 2nd opinion and not even sure the VA Dr is considering. I asked my husband today to start thinking about getting a 2nd opinion and he said his is so tired of more Dr appointments he can't really think through that right now. Anyway, he also has ischemic heart disease (1 stent), pre-diabetic and has had 3 ablations over a number of years for Atrial Fibrillation. Again.....overwhelming. Just needed to talk to some folks who are in the same boat with us. Prayers are welcome. Thank you!

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What do the gradient numbers mean?
What does a "pressure" after stress test mean? His was just under 400.
What should he not be doing between now and the next Dr. Appointment Oct 25th?
My husband was sort of in shock after the Stress MRI and didn't get to ask more questions.
Now we have loads of questions. VA Drs are so busy.
We are leaving on a week long trip to South Carolina for Grandson's Basic Training Graduation Oct 14th (driving).
Should we go?
Should we not walk up the bleachers?
What is "overdoing it" mean?

Also wondering if I can send whatever VA medical records I can download to a Doctor to get more answers. Or at least before a second opinion appointment.

Yesterday went to U of Minn for PET/CT scan of heart. Dr told hubby he will try to call him by Thursday of this week with results. We are hoping sooner. I know I sound a bit frantic but this is an odd situation with VA involved.

Thank you folks for whatever you can help me with.

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Profile picture for janicepike
janicepike | @janicepike | Oct 2, 2017
In reply to @colleenyoung "Hi Connect HCM-ers @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I'm tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

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Total for surgery, and all the tests. Had 2 echoes. A bit over 70 thousand. Which, both my husband and I thought was reasonable.

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Profile picture for ZarGul
ZarGul | @zargul | Oct 2, 2017
In reply to @colleenyoung "Hi Connect HCM-ers @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I'm tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

Jump to this post

What's your post myemectomy gradients.

Pliz detail me the details of cost

1. Echocardiography

2. Other relevant tests

3. Myomectomy procedure

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