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.

janetcf | @janetcf | Mar 23, 2021
In reply to @sheim "I just noticed this conversation from an email and decided to pop in on it. Dr..." + (show)
@sheim

I just noticed this conversation from an email and decided to pop in on it. Dr Schaff was my surgeon for Septal myectomy 2 years ago come June. Not only is he the best but the entire heart center staff is TOP of the line. I heard he was training so he could retire and to that I can only say PRAISE GOD he hadn't retired before doing my surgery. It's CRUCIAL that kind of surgery is NOT done at any run of the mile hospital. The mortality rate is shocking. One doctor actually told me not even to go to any MAYO...make sure it's Rochester.............BECAUSE of Dr Schaff! I'm sorry I didn't get in on the beginning of this but who is having the surgery, you're in good hands if you go there.. If you already had it...you already KNOW it. 🙂

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Thanks for sharing and I was scheduled for surgery last month, but it had to be postponed for a few months. Dr Schaff actually called me to talk to me about this! I was very impressed and feel blessed to have him as my surgeon! Thanks again for sharing! I appreciate it very much!

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oldkarl | @oldkarl | Mar 24, 2021

Hi, @colleenyoung. As you know, I have been around the block for a while with this. Now I know that I have at least twenty-four genes that relate to cardiomyopathy, dilated and otherwise. Anyone with any serious issues in this area should invest in a whole genome analysis by Nebula or Sequencing or other Genetics group, and learn your own list. Then take it to a geneticist for further interpretation. Frankly, that is the surest way to knowing whether yours is genetic, disease or something else.

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lopezland | @lopezland | May 16, 2021

My son is 15 And was recently diagnosed . He has an mri scheduled to help determine more things but could anyone give information as to what things need to be changed etc. He is on a No activity restriction until his mri; what about his diet. He has no symptoms.

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lopezland | @lopezland | May 25, 2021

If you have been diagnosed with hypertrophic cardiomyopathy could you explain any changes you had to make in your diet or lifestyle? Does anything you do or eat make hypertrophic cardiomyopathy worse/better?

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2 replies
Amanda Burnett | @amandaa | May 26, 2021
In reply to @lopezland "If you have been diagnosed with hypertrophic cardiomyopathy could you explain any changes you had to..." + (show)
@lopezland

If you have been diagnosed with hypertrophic cardiomyopathy could you explain any changes you had to make in your diet or lifestyle? Does anything you do or eat make hypertrophic cardiomyopathy worse/better?

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Hi @lopezland, You've been diagnosed with HCM. Seeking all that you can about how to take care of yourself is important.
You will see that I moved your post to a discussion you have previously commented in. I did this so that you can connect with and get the opinion from other people who have your same condition.
@lopezland, have you tried any adjustments to your diet yet? Can you share what you have tried?

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1 reply
alexdegrate | @alexdegrate | May 26, 2021
In reply to @lopezland "If you have been diagnosed with hypertrophic cardiomyopathy could you explain any changes you had to..." + (show)
@lopezland

If you have been diagnosed with hypertrophic cardiomyopathy could you explain any changes you had to make in your diet or lifestyle? Does anything you do or eat make hypertrophic cardiomyopathy worse/better?

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I find that I can't eat heavy meals. By heavy I don't necessarily mean high fat or high carb; it's the amount of food consumed at one time that worsens symptoms such as short breath, palpitations, light headedness, etc. Besides eating healthier, I now eat more frequent, smaller meals / snacks throughout the day.

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1 reply
lopezland | @lopezland | May 26, 2021
In reply to @amandaa "Hi @lopezland, You've been diagnosed with HCM. Seeking all that you can about how to take..." + (show)
@amandaa

Hi @lopezland, You've been diagnosed with HCM. Seeking all that you can about how to take care of yourself is important.
You will see that I moved your post to a discussion you have previously commented in. I did this so that you can connect with and get the opinion from other people who have your same condition.
@lopezland, have you tried any adjustments to your diet yet? Can you share what you have tried?

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Thank you. It’s my son who has been diagnosed and I’m
Seeking out the best for him. Also don’t want to change a lot
If it’s not needed. He has no symptoms.

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lopezland | @lopezland | May 27, 2021
In reply to @alexdegrate "I find that I can't eat heavy meals. By heavy I don't necessarily mean high fat..." + (show)
@alexdegrate

I find that I can't eat heavy meals. By heavy I don't necessarily mean high fat or high carb; it's the amount of food consumed at one time that worsens symptoms such as short breath, palpitations, light headedness, etc. Besides eating healthier, I now eat more frequent, smaller meals / snacks throughout the day.

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Thank you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 5, 2021
In reply to @gypsytisme "Aloha, my name is Pam and apparently you’re my tribe. 😊" + (show)
@gypsytisme

Aloha, my name is Pam and apparently you’re my tribe. 😊

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Hi Pam, welcome. Do you have HCM? Tell us more about you.

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