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?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) group.

Hi @anita61964 @joerussell @

Welcome to Mayo Clinic Connect – so happy that you’ve joined this incredible group!
Here’s some information about HCM (symptoms, diagnosis, treatment) from Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198

@anita61964, I can imagine you must have so many questions! You mentioned you’ve had issues for a few years – are you able to share a few details?

@joerussell, I’d like to introduce you to a few members who’ve shared some great insights about septal myectomy; Please meet @carsangelop @rrowner2 @ronaldpetrovich @priscilla1972 @ronitb @knecht @ninimurphy @mbcube @dp52350 @jtaylorl @mk1957. You might also be interested in reading their posts in these discussions on Connect:
– HCM CARE tips – What do you wish you had known for after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/
– Septal Myectomy & Mitral Valve Repair Surgery on Jan 30th https://connect.mayoclinic.org/discussion/surgery-on-jan-30th/
– Surgery https://connect.mayoclinic.org/discussion/surgery-2/

May I ask how the recovery process has been for you, @joerussell?

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@thehound572001

Thanks for the message back, still trying to get used to the way this is setup, sorry it took awhile to reply back, I hope what I say on here helps others to deal with there issues, it can be hard to deal with this condition, I watched my mother go through it, now I am going through it, I seem to have more symptoms that her though…

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Hi @thehound572001,

The power in shared experiences is knowing that you are not alone – thank you for sharing your story. I also hope that reading fellow Connect members’ experiences will ease your worries, some. How often do you have to do the NVO2 test?

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@sheim

I am under the impression that my upcoming Septal Myectomy will be covered by Medicare but in the packet I received from Mayo they say to check with your insurance to see if you need pre approved. I called Medicare and all I got was since I have original Medicare I can go anywhere. For those who have already had this surgery were any of you on Medicare?

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Septal Myectomy is covered by Medicare, the only thing that Medicare didnt cover was blood sugars which seems odd.

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I am under the impression that my upcoming Septal Myectomy will be covered by Medicare but in the packet I received from Mayo they say to check with your insurance to see if you need pre approved. I called Medicare and all I got was since I have original Medicare I can go anywhere. For those who have already had this surgery were any of you on Medicare?

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Looking for a surgeon for myectomy in Phoenix Arizona. Any recommendations?

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Hello, my name is Tim. I had septal myectomy surgery in Rochester, MN on 1/4/2013. I have no idea why I was drawn to this site but I am here now. I have read and replied to a couple of posts. I just want anyone that is worried about having this surgery to know that life afterward is awesome. I am happy to talk with anyone at any time.

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Hi! I had a myectomy on July 12, 2016 by dr Sameh Said. Did anyone else have him as their myectomy surgeon?

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@sheim

I am under the impression that my upcoming Septal Myectomy will be covered by Medicare but in the packet I received from Mayo they say to check with your insurance to see if you need pre approved. I called Medicare and all I got was since I have original Medicare I can go anywhere. For those who have already had this surgery were any of you on Medicare?

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My Medicare and supplemental insurance covered everything.

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@rondar

Hi! I had a myectomy on July 12, 2016 by dr Sameh Said. Did anyone else have him as their myectomy surgeon?

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Dr. Said did my surgery last August. It was a success and I enjoyed him and his team.

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@bpickartz

Dr. Said did my surgery last August. It was a success and I enjoyed him and his team.

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Thank you for your response.

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Hi, my mother was told in 2013 that her heart condition is hereditary. Hypertrophic cardiomyopathy, I had mentioned it in the past to primary physician but I had no symptoms. But I now am going for echo next Monday. I am healthy but over weight, actively working at nursing home as Restorative Aide and CNA. Until reading today I really didn't understand the diagnosis as I care for my mother's health issues. Never looked up the diagnosis in detail of was explained. She is 79 years old. Her symptoms have been treated as they came but no one said it was hereditary until 2013. Took her to hospital for bronchitis, where when they were treating her for the bronchitis she had trouble and then is when she started with Afib, animation and dual chamber pacemaker. I am just wanting to prevent issues while I can by getting checked for HCM. I have to admit after reading it makes me nervous but the only things that seems to effect me to much caffeine and cough/ allergy medicines.

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@sall

Hi, my mother was told in 2013 that her heart condition is hereditary. Hypertrophic cardiomyopathy, I had mentioned it in the past to primary physician but I had no symptoms. But I now am going for echo next Monday. I am healthy but over weight, actively working at nursing home as Restorative Aide and CNA. Until reading today I really didn't understand the diagnosis as I care for my mother's health issues. Never looked up the diagnosis in detail of was explained. She is 79 years old. Her symptoms have been treated as they came but no one said it was hereditary until 2013. Took her to hospital for bronchitis, where when they were treating her for the bronchitis she had trouble and then is when she started with Afib, animation and dual chamber pacemaker. I am just wanting to prevent issues while I can by getting checked for HCM. I have to admit after reading it makes me nervous but the only things that seems to effect me to much caffeine and cough/ allergy medicines.

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The first thing is to talk with your primary doctor and get a referral to an interventional cardiologist. They may do an ultrasound of your heart called an echocardiogram. In the meantime, if caffeine bothers you then stay away from it. Reducing, sugar and caffeine will make a world of difference in how you feel.

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