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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.
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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?
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i will be coming as a patient in two weeks to deal with my leaking mitral valve
Thank you for all the input and info. Surgery is on my mind a lot and this does help.
Tom, did you have your surgery at the Mayo Clinic?
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My husband chose Mayo Rochester because they perform more surgeries than any of our hospitals in Southern California and have a fantastic HCM program, so maybe it’s worth going for a consultation and possible surgery.
What do you think? Should I go to another surgeon here in Arkansas or would I be wasting my time? I think Surgery for HCM is not done here very often. Would you suggest a hospital or surgeon in Arkansas?
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1 ReactionSorry to hear this, time for another opinion
I have seen the surgeon every year since the surgery. He first said it would take about 2 years for me to feel any good results from it. It's been about 6 years now and I still am out of breath from doing minimal things. last year he said "It is what it is and that i will have to just live with it. So disappointed and frustrating. I'm 72 and feel 80. I have a pace maker and take warfarin because of a mechanical valve. My surgeon was a Dr. Warren In Hot Springs, Ar.
Welcome new HCM members @niri9 @pawcatuck and @dp52350. I invite @ronaldpetrovich @mbcube @rrowner2 @positivity @priscilla1972 @janicepike @PatMattos @ninimurphy @melthomas and others to join me in welcoming you all.
Debby, I'd like to introduce you to @cynaburst. I believe her surgeon was also Dr. Dearani. She wrote these notes from a presentation he gave last year:
> Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/
Niri and Debby, I can imagine that you're both nervous about what lies ahead. There are several discussions that may interested you as you prepare for surgery or make decisions about surgery:
> What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/
> 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/
> Life after HCM Surgery https://connect.mayoclinic.org/discussion/life-after-hcm-surgery/
Tom, reading so many stories about how people feel better after myectomy must be frustrating when this has not been your experience. Do you have multiple complicating issues or conditions? Has your cardiologist given any explanations?
Hello, I'm Debby. I'll be having a myectomy done on April 4, 2019 by Dr Dearani. I'm a little nervous and am just looking for some input. Others experience with this.
I’m so sorry you don’t feel better Tom, are you taking beta blockers,? I thought that after surgery my husband would not need them but he still needs them although less than half of he took prior to surgery. The surgery removes the obstruction still has hypertrophic cardiomyopathy for which he needs the meds.
Please talk to you doctor.