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.

anita61964 | @anita61964 | May 9, 2019

Hi! I just found out I have HCM. I wonder how long I have had it. I finally found a doctor that did the needed testing. I have have issues for a couple years.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 9, 2019

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?

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 9, 2019
In reply to @thehound572001 "Thanks for the message back, still trying to get used to the way this is setup,..." + (show)
@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...

Jump to this post

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?

REPLY
rrowner2 | @rrowner2 | May 9, 2019
In reply to @sheim "I am under the impression that my upcoming Septal Myectomy will be covered by Medicare but..." + (show)
@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?

Jump to this post

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

REPLY
sheim | @sheim | May 9, 2019

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?

REPLY
2 replies
badmac | @badmac | Jun 6, 2019

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

REPLY
timdines | @timdines | Jun 13, 2019

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.

REPLY
rondar | @rondar | Jun 13, 2019

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

REPLY
1 reply
bpickartz | @bpickartz | Jun 13, 2019
In reply to @sheim "I am under the impression that my upcoming Septal Myectomy will be covered by Medicare but..." + (show)
@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?

Jump to this post

My Medicare and supplemental insurance covered everything.

REPLY
bpickartz | @bpickartz | Jun 13, 2019
In reply to @rondar "Hi! I had a myectomy on July 12, 2016 by dr Sameh Said. Did anyone else..." + (show)
@rondar

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

Jump to this post

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

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.