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heart condition Arvc/arvd

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Old 12-19-2006, 03:01 PM   #1
Join Date: Jul 2006
Location: east tennessee
Posts: 91
arvc HB User
heart condition Arvc/arvd

I have posted here before , but it has been many months. I didn't get any responses last time, but I was just hoping to reach someone with arvc. I am 35yo now. I figured maybe if I post every several months maybe someone will come across my posts. Arvc is a unique heart condition that is often misdiagnosed or never diagnosed until death. The majority of people with arvc die before they even know they have it or because doctors never looked hard enough for the disease. It is fatty tissue that takes over heart muscle and causes severe arrythmias. I nearly died 3x before it was found. Most people don't get that many chances, I was very fortunate. It all started with an enlarged heart thought to be ideopathic cardiomyopathy. My drs would not listen to me about my symptoms because they thought they had done every test possible and they thought they knew what I had based on all other tests showing nothing else. I bet there is someone out there who maybe is being put off to. I had near fainting spells, heart rates 200+ and been shocked in the ER a few times before having an ICD implanted. A dr there just happen to hear of this disease and ordered an MRI with a microscopic view and found it. I'd had echo's, xrays, stress tests, blood work, nuclear tests, EKG's and you name it and none were able to detect my disease. I had cold feelings and some hand sweats. The heat began making me very sick. Stairs got harder to climb and such. I hiope to meet someone with this who has an advanced form like I do or atleast someone who is alive with even with a normal form of it. I know that I am only 1 of 9 people in the state of TN, and some are just carriers of the gene and don't have the disease itself. Any help is great and appreciated.

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Old 05-07-2008, 06:24 AM   #2
Join Date: Apr 2008
Location: abilene,texas USA
Posts: 1
barbara57 HB User
Re: heart condition Arvc/arvd

I have just returned from Baylor in Dallas and they feel I have ARVC. I am being tested soon and will have the ICD implanted this month. With that said, how are you doing? How are you handling this and do you have any advice?
Thank you for any insight you may share.

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