Mended Hearts Open Forum

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  • 1.  Introduction of Myself

    Posted 03-03-2017 12:31
    Hello to everyone!

    I am new to this website and the new President of Orange County, California Chapter 216.

    Andrea, thank you for all the good work you do for the MH Organization.

    I look forward to learning more and entering into your discussions as we proceed.

    I have saved the Presentations that I could find.  Do you have a .ppt regarding Mended Hearts National Organization that
    I could share with various personnel?

    Thank you and sincerely,

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    Joe Pierantoni
    President
    Chapter 216, Orange County
    Mission Viejo, Ca
    949-842-6927
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  • 2.  RE: Introduction of Myself

    Posted 03-03-2017 15:04
    Hi!

    Thanks for joining the conversation and introducing yourself. I am going to upload a presentation here for you so look for it. It is from December 2016 and gives an overview of the organization. It is great to use to talk with people about us and our organization. 

    Hope that helps you!

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    Andrea Baer
    Grapeville PA
    (724) 396-7820
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  • 3.  RE: Introduction of Myself

    Posted 03-08-2017 17:21
    Hello Everyone... My name is Jana Stewart. I am currently the Central Regional Director of Mended Hearts. I'm from Indiana. In my home chapter I am the president and newsletter editor. My heart story started when I was 6 years old when they found out that I had congenital heart defects. When I was 8 years old; in 1962, I had open-heart surgery to make repairs. I was born with an atrial septal defect, a coarctation of my aorta, and pulmonary valve stenosis. The good news is, on Monday the 6th, I turned 63. All in all I am doing well. I was blessed with two children, who have filled my life with joy and grand children. I've also been married to my wonderful husband Rick going on 43 years. 

    In 2009 I received my first dual lead pacemaker. That same year I also had my first ablation. My doctor told me that I was experiencing atrial flutter due to scar tissue from my original heart surgery. Up until that time, things had gone pretty well. When I asked my doctor why this happened, he told me that it was more of a matter of when, rather than why... For 5 years following my pacemaker implant and ablation, I did pretty good all in all. Then in 2016 I had a second ablation because I had gone back into atrial flutter. Then several months after that, I had to have my pacemaker replaced. They had hoped to be able to insert a biventricular pacemaker that would have had a third wire, but, my electrophysiolgist wasn't able to make that happen. He said, better luck next time...I'm doing pretty good. But I do have shortness of breath.

    This new site is exciting and I'm very glad to see that it has taken off. Andrea Baer has done a wonderful job getting this done.  

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    Jana Stewart
    Indiana
    tsthumper1@hushmail.com
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    Original Message


  • 4.  RE: Introduction of Myself

    Posted 03-10-2017 08:27
    Hi Jana!

    Thanks for joining us. I'm looking forward to really kicking the site off and being able to reach patients and families better than ever before. 

    I love your story. You are so inspirational and give us parents lots of hope for the future!


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    Andrea Baer
    Grapeville PA
    (724) 396-7820
    ------------------------------

    Original Message


  • 5.  RE: Introduction of Myself

    Posted 03-22-2017 17:28
    Hi! My name is Brigitte and I am 34 years old. I was diagnosed with coarctation of the aorta and bicuspid aortic valve when I was born. I had open heart surgery at a few days old. I have been lucky and haven't had any restrictions or issues due to my Chd. I go to the cardiologist once a year for echo and EKG.  I had a daughter in 2015. Her Chd was discovered in utero and her Chd is more severe.  I've learned a lot more about Chd since giving birth to my daughter. It wasn't ever something I worried about before since I was lucky enough to not have issues after surgery. I'm also scared now to have another baby because there is always the chance that they would have Chd as well. It was so scary and difficult to go through the first time. 

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    Brigitte
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    Original Message


  • 6.  RE: Introduction of Myself

    Posted 03-22-2017 09:30
    Hi, my name is Katie Hawes. I was somewhat involved with Little Mended Hearts when I was young. But I haven't been for many years. I have transposition of the great vessels, single ventricle and pulmonary stenosis. I had my first pacemaker placed when I was almost 4 years old. I've had many procedures and surgeries.  I am now being treated at the Cleveland Clinic. I'm looking forward to getting to know everyone on here.  

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    Katie Hawes
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    Original Message


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