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Old 12-15-2010, 02:34 AM   #1
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Question HCM patients please

Okay so I am hoping to find someone on here who can help me with some questions.

I'm hoping that there is someone on this site who may be able to clarify some things for me.

 
Old 12-15-2010, 08:48 AM   #2
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Re: HCM patients please

HCM, hypertrophic cardiomyopathy is where the heart muscle wall has thickened.

I don't have HCM. I've struggled with Heart Failure for over 24 years. But, I am sure that there are members of HealthBoards who do deal with HCM.

Perhaps if you ask a specific question, or two, you may get more of a response?
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Old 12-15-2010, 12:07 PM   #3
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Re: HCM patients please

There a varying degrees of HCM, and treatment options. Sometime the septum (wall that separates right and left side of the heart chambers increase its dimension and the thickened wall can cause arrhythmia (irregular heartbeat)as the septum has electrical pathways from the right atrium down and into the right and left ventricles to cause the ventricle to contract.

There could be a heart wall thickening that can impede the filling phase of the heart cycle. If you have your medical report from an echocardiogram, there should be a showing of the parameters. If you had an EKG that shows an indication of HCM, that may not be a very good source for a dx.

 
Old 12-15-2010, 04:56 PM   #4
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Re: HCM patients please

I'm not looking for info on HCM I have enough of that I am trying to find patients with HCM on here so that I may talk to someone and get there opinion on a matter.

I have an unusual case of HCM and show low amounts of side affects from it, which apparently put me in a group of patients that have a higher risk for SD and they want to put a defibulater in next month, I am just trying to find someone who understands and can talk to me about this stuff. Someone who gets it

Last edited by Adlenia; 12-15-2010 at 04:57 PM.

 
Old 12-16-2010, 04:22 PM   #5
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Re: HCM patients please

QUOTE: "I'm not looking for info on HCM I have enough of that I am trying to find patients with HCM on here so that I may talk to someone and get there opinion on a matter."

>>>>Unless there is a meeting of the minds regarding your HCM and clarity for an underlying cause that you believe is true for you, this dialogue is going nowhere I had HCM and dilated left ventricle among other heart conditions a little more than 6 years ago. Now that you have stated you are in a select group...what is the select group?

Some individuals believe HCM is due only to a genetic component and it is not.

 
Old 12-17-2010, 10:35 PM   #6
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Re: HCM patients please

my doctor wants me to have a defibulator put in. I'm scared to death and everyone's acting like i'm over reacting. I'm 18 and afraid to go under the knife, I am afraid of not coming out and everyone thinks i'm being riduculous. I mean i'm scared that by having a surgery to increase how long i might live that I might die..

 
Old 12-18-2010, 03:14 PM   #7
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Re: HCM patients please

Adlenia,
I have not HCM, just a big MI and HF.

I have refused a defib. for other reasons, but before I investigated quite a bit and I did not found any case of a person dying in the implant procedure.

There is a large forum of the "ICD Support Group" look for it, you will get many answers there.

Sorry, this forum rules does not allow me to post the address.

Jesus

Last edited by jeda; 12-18-2010 at 03:15 PM. Reason: spelling

 
Old 01-05-2011, 12:05 PM   #8
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Re: HCM patients please

I was misdiagnosed as a teen with mitral valve prolapse, but apparently have always had HCM. I received a ICD/(defibrillator) in 2002, then its replacement in 2009, first time kept overnight & lifting restrictions, 2x in/out day surgery & I was back to work in 5 days. I think of it now as my walking insurance policy, even though it has never fired on me. In 2006, I had more valve leakage & needed to have a myectomy- which is REAL surgery in comparison (3 mo. recovery for me). I have always been fairly asymptomactic, thus not diagnosed.

With any surgery there is the minimal, minute risk factor nowadays, & some docs make it sound like a piece of cake, because it is what they do everyday. My advice, not all docs are created equal. Get someone who has significant experience with your particular surgery & don't overthink it. If you are not convinced of the need for it, go to another cardiologist/EP, especially one of the centers around the US. I went to Mayo, but Cleveland clinic & Boston Tufts are famous for experts in the field & I have to say I felt much more confident about my treatment after their recommendations.

< edited >
CJ

Last edited by hb-mod; 01-05-2011 at 02:20 PM. Reason: Please do not post links or websites, per Posting Policy. Thanks!

 
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