1. < Hypertrophic Cardiomyopathy (HCM)

Norpace`

Posted by jhoffmanj @jhoffmanj, Dec 23, 2016

Hello, Since Oct 10, 2016 and after being released from hospital, Dr. told me another ablation would likely not address my AFIB and put my on Norpace. I take 2 150 mg in morning and 2 150 at night. My heart beat is regular and my BP is good. However I have ever present bloating, gas and big time constipation. I also seemed to have less energy but that may be due to my heart condition. Anyone taking Norpace and are you having similar issues. Is there another drug I could take.

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pfazenbaker | @pfazenbaker | May 11, 2017
In reply to @cynaburst "If you are not feeling better 6 months after surgery something is not right. Where did..." + (show)
@cynaburst

If you are not feeling better 6 months after surgery something is not right. Where did you have your surgery?

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My Dr. Is saying my symptoms could be from the still heart. Im just nervous about the way i feel.

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debcrawford | @debcrawford | May 11, 2017
In reply to @pfazenbaker "I am 45 and I have HCM.i had a defribilator put in 3 years ago and..." + (show)
@pfazenbaker

I am 45 and I have HCM.i had a defribilator put in 3 years ago and just had open heart surgery to thin my heart in november.I have a stiff heart as well. I feel like my symptoms are getting worse and no better after surgery. I am constantly out of breath, i get lightheaded and dizzy, and blurred vision. Not as many pulptations but when i have them they are bad. Is this normal?? Is this how i will live out my life?? Im already on all the meds.. Please help?

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So very sorry, I wish there was a cure for HCM. Thinking of you!

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Cynaburst, Alumna Mentor | @cynaburst | May 11, 2017
In reply to @cynaburst "If you are not feeling better 6 months after surgery something is not right. Where did..." + (show)
@cynaburst

If you are not feeling better 6 months after surgery something is not right. Where did you have your surgery?

Jump to this post

Sometimes places that don't do that many myectomies do an incomplete surgery. My best suggestion for you would be to go to one of the ultra-high volume centers for myectomy, such as Mayo Clinic, and see if there is anything different that can be done. Often times lower volume centers just don't have the expertise to deal with us.

Read this experience from a nurse who had to have a second myectomy at Mayo:

https://hcmbeat.com/2016/09/04/guest-blogger-surgical-myectomy-a-twice-in-a-lifetime-experience-by-jill-celeste/

Also, read this recent article from Mayo Clinic's HCM Center:

https://hcmbeat.com/2016/11/20/guest-blogger-the-view-from-a-hcm-center-by-dr-steve-ommen-of-mayo-clinics-hcm-clinic/

Hope you get some answers. You should not have to suffer with those symptoms. Most people do feel at least somewhat better after myectomy.

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Cynaburst, Alumna Mentor | @cynaburst | May 11, 2017
In reply to @cynaburst "If you are not feeling better 6 months after surgery something is not right. Where did..." + (show)
@cynaburst

If you are not feeling better 6 months after surgery something is not right. Where did you have your surgery?

Jump to this post

Here is one more thing for you to read about differences in outcomes at a Center of Excellence:

http://jamanetwork.com/journals/jamacardiology/fullarticle/2517391
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wintergirl8 | @wintergirl8 | May 11, 2017
In reply to @cynaburst "If you are not feeling better 6 months after surgery something is not right. Where did..." + (show)
@cynaburst

If you are not feeling better 6 months after surgery something is not right. Where did you have your surgery?

Jump to this post

I agree with @cynaburst. I would call Mayo in Minnesota and see if one of the cardiac team members can review your records.
The number there is (507) 284-2511. Any of the staff will give you the information where your records can be mailed or faxed for another opinion. I do hope you get answers. Please keep us updated xx

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 13, 2017

Hi @pfazenbaker,

You might wish to view these discussions on Stiff Heart:
Stiff Heart - diastolic heart failure http://mayocl.in/2qgtht8
Diastolic dysfunction and resulting a-fib: http://mayocl.in/2nTEukW

I'm also tagging @evelyn247 @oldkarl @lynnkay1956 @HeartPatches to see if they have any insights to share.
@pfazenbaker, have you thought about getting a second opinion?

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