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mjesaitis Find out more about mjesaitis
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  • Good news...

    I have some good news so I would like to share with thanks and ask that you keep me in your prayers. I know how powerful your prayers are and this HCMA group in particular.

    Again thank you Lisa for your compasion for all of us. Thanks for pushing me to see a specialist. Thank you Dr. Barry Maron for your caring, expertise and solid no-nonsense direction which brings me to my news... I am finally on the UNOS transplant list this week! It has been a 6 month struggle since I saw Dr. Maron, fighting HMO, hospitals, health and just lots of waiting but I am here. SO now I get to wait

    So Lisa can you make a shirt that says ex-HOCMer, ex-myectomy, ex-ICD, used BIG heart for sale cheap? Don't worry, I will still get to take lots of medications.

    Matt Jesaitis

    P.S. I would also like to thank Sharon Bates for her commitment to HCM awareness with her screenings. My kids, Jonathan and Nicole, who are 13 and 16 and are HCM-free so far are going to her screening this Saturday in Phoenix. Please pray for them too. Thanks.

  • #2
    Matt,

    I will certainly say a big prayer for you. Congratulations on getting on "the list." Hope all goes well until you get your new heart.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

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    • #3
      Hello Matt,
      Of all the people I left off my list...sorry!
      We have had to postpone our Feb. 15th screening. New date, April 5th (Central High School). Please let you family in Prescott know that we have had to postpone. The doctors I thought I had lined up from last year's event had unforseen circumstances with our date in Feb. So, now I am trying to round up new doctors. So far I have 5 commitments from local area doctors and a few out of town doctors. So it looks real good for April.

      I will post this on the message board, too. I have been so busy re-doing our event I didn't go back through all my emails. I should have posted on the message board our change. I am so grateful for the message board and for Lisa, too! I will keep you in my prayers and add you to our pray list at church. God's timing is not always our own. Keep the faith!
      Best Regards,
      Sharon Bates
      www.AnthonyBates.org

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      • #4
        Matt,
        You made my day! I am very happy for you and will be very happy to make the T-Shirt you requested!!!
        Now is the wait to transplant and I know that can be a difficult one. WE ARE HERE on the good days and the not so good days...but you know that!
        I am just sorry you had to "fight" so hard to get the care you need
        funny how red tape and company procedures can have such a strong effect on a life. The good news is that is the past!
        AND your future is open to new options and oppurtunities!
        You remain in my thoughts and prayers!
        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

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        • #5
          prayers

          Matt, I will keep you and your family in my prayers. With your permission, I will add you to a prayer list at my church of about 14,000 people who do a wonderful job of praying. They have gotten me through quite a struggle myself. Just say Ok, and I will put your name on the list.
          Jim Crosby
          I wish you enough.......

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          • #6
            Jim,

            You definitely have my OK to put my family and I on your prayer list. Another 14,000 can't hurt Thank you.

            Matt

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            • #7
              Matt, Best wishes. You will have prayers for you and your family from Maryland, also. Linda

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              • #8
                Matt,
                I am sooooooo happy you got what you needed! I am feeling the Wrath of Cigna as well. Not getting into that story. If you need anything what-so-ever please let me know! You were so kind to talk to me and make me feel a little normal with this whole ordeal I went through. You were in fact the first person I had ever talked to that had HCM. You gave me hope in a time that I was not so sure what my future held. Please rest and take care of yourself.

                Give me a call anytime you need me! You have my cell number!

                Mary S.

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