Mended Little Hearts Open Forum

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  • 1.  A case of HYPERTROPHIC CARDIOMAYOPATHY

    Posted 10-26-2018 12:59
      |   view attached
    Good day everyone. I have a relation with HYPERTROPHIC CARDIOMAYOPATHY. How can she be helped? She is about 29 years. I attached a video of the diagn

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    Vitus Mbamalu
    NY
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  • 2.  RE: A case of HYPERTROPHIC CARDIOMAYOPATHY

    Posted 10-27-2018 14:59
    Hello,
         My name is Dianna Amberg and I'm familiar with Cardiomyopathy. In 2010, at the age of 38 a virus attacked my heart, I went I to V-tack, was diagnosed with viral cardiomyopathy, and had a pacemaker/defibrillator implanted in under a week. I did well for about 3 years before I began getting shocked, I was in and out of the hospital for a couple of months, had an ablation surgery done and they discovered my heart was dying and wouldn't/couldn't sustain itself. I was put on ECMO, flown to UCSF,  and after a couple of weeks an LVAD was implanted. Almost 2 months later I woke up from a coma, I was in the hospital for 4 months, and got to go home in September 2014. A month after I got home I was removed from the heart transplant list because my anti-bodies were 98% out of 💯, thus my body would've rejected the new heart. In February 2016 I was told that my anti-bodies were 70% and it was "doable", over the next few months I did everything that was required. On April 13th I was placed back on the list. My husband and I were approved to go to our daughter's wedding in Las Vegas, the day after her wedding we kept getting phone calls and it was before 8am, it was "the call" so we left Las Vegas and headed to UCSF. My heart transplant surgery was on April 18, 2016, I was in the hospital for 10 days, and an out patient for a month before going home. I am 2 1/2 years post transplant and I feel amazing. My advise to you is to listen to your doctor's and if you want ask for a second opinion. You are her advocate and you have to fight for her and her health. If you have any other questions or would like to talk, I'm just a call, text, or message away. I wish you the best on this endeavor. 
                   Heartfully, Dianna Amberg

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    Dianna Amberg
    Chapter 92 - President
    Mended Hearts
    Lebec, CA
    559-377-1535
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  • 3.  RE: A case of HYPERTROPHIC CARDIOMAYOPATHY

    Posted 10-27-2018 17:04
    You are unbelievably brave!  SO proud of you!

    Sent from my iPhone





  • 4.  RE: A case of HYPERTROPHIC CARDIOMAYOPATHY

    Posted 10-28-2018 20:45
    Hello Group-
    I want to say a few words about the young lady pictured in the article. She is sweet , she is a mom, a very good wife, and a grandma. I'd say she is pretty special, and what you don't about her, well, I know just enough to say she is a very dear friend, and someone I admire very much. She waltzed into our lives and and turned every thing around. I'm not sure what did it for us by I can honestly tell you that she is very extraordinaire. This little fire brand is our chapter president and we have decided that she will hold the position until , oh,,who knows. 

    I saw in her article that she has opened herself up to come and speak to the chapters and relay her story first hand. I can tell you that if she says it, she will do it..I know she would except an airline ticket and a comfortable bed to speak to the people of Mended Hearts and she will keep you spell bound.She is also willing to take questions about transplants, l- cardiomyopathy although she doesn't remember much of it she will speak on Life flight and having her cardiac specialist with her. If you have any questions, please email, call or pound on her door. But just saying, her husband while a sweetheart, is a great big guy and he might hurt ya.!
    Heartfully.
    Sandy Briggs
    ARD Western Region.