Diagnosed with HOCM last year. May be time for surgery

Posted by barbararickard @barbararickard, Feb 9, 2016

Hello, I was diagnosed with HOCM last year. I have been told I may be approaching the time for surgery. The last MRI showed a 10% worsening in valve pressure. I am in the process of getting a second opinion. I have pain and dizziness and breathing is hard. I am scared. I worry if I have to have surgery something will happen. I know I shouldn’t but I do. I’ve had problems with my heart since I was a kid I am 54 now. I feel alone with this problem. I put on a brave face for my husband and kids but alone I almost feel defeated. I wonder if there is anybody out there that had this heart disease and if so are they ok and how did it go? Thank you all for reading this and I hope everyone who is sick to get well soon.

Liked by debcrawford

@colleenyoung

Hi @barbararickard
Welcome to Connect. I’m glad you found us. You are definitely not alone. We have a great group of people here who also have hypertrophic cardiomyopathy (HCM or HCOM).

Let me introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @rosebud @fishinglady to name a few. Many of them (if not all) have had surgery, some recently and some a while ago.

Cynthia, Ron, Lynn, Pat and company can you share how surgery went for you and help answer some of @barbararickard‘s questions?

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Hi @pj57,
I add my welcome to @cynaburst‘s. I hope you can get an appointment with an HCM specialist at Duke and close to home. If you’d like to consider a second opinion at Mayo Clinic, here is the contact information http://mayocl.in/1mtmR63. Please let us know how it goes.

If you’d also like to share about fibromyalgia with Connect members, feel free to join this group “fibromyalgia pain” http://mayocl.in/2hgUGcv

Hi Barbara, I’m 51 and know first hand exactly how you feel! Thoughts and prayers to you!

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