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Going to See Dr. Maron

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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • Going to See Dr. Maron

    Well

    I finally got back from Richmond and seeing Dr. Gilligan, he is at a loss he doesn't know what to do, so i never had to ask he said i'm sending you to the big man up North Dr. Maron, he said have him look at you being you will need a second opinion anyway before the Insurance would pay a dime for a transplant and he may even know of something he hasn't tried and that would be even better than a transplant if there was something Dr. Maron could think of doing to improve my quality of life, oh and by the way the ICD was still pacing me even though he had it set to pace me only if i dropped below 60 beats per minute and it paced me 27% of the time over the last month so now he has it set down to 40 and we will see what happens, i hope it doesn't pace me or that my heart rate doesn't fall that low, but that is what has happened so far. Everyone have a great weekend

    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

  • #2
    Re: Going to See Dr. Maron

    Hi, Shirley,
    Wish I had been in Richmond to give you a hug and cheer you up and on! I am glad you are going to see Dr. Maron. I'll be praying that he has some answers for you.
    Rhoda

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    • #3
      Re: Going to See Dr. Maron

      Shirley, I, also will be praying for you. Hope you are able to make the trip soon. Please keep us posted. Linda

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      • #4
        Re: Going to See Dr. Maron

        Shirley ,
        If we have to be glad about a tough situation it will be that you are going to see Dr. Maron. Of course you will see Dr. Udelson too and he is great also. You will be recieved with open arms. They are all so nice and offer a team approach covering all the bases.
        I hope you can get in soon and if you wish I can meet you and Ken. If there is anything I can do to assist you let me know . Of course you know we can discuss it when we chat.
        I think I begin to see a light for you Shirley.
        My thoughts and prayers, hugs too.
        Pam
        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

        Comment


        • #5
          Re: Going to See Dr. Maron

          Shirley - Are you going to see Dr. Barry Maron in Minnesota, or Dr. Marty Maron in Boston?
          Daughter of Father with HCM
          Diagnosed with HCM 1999.
          Full term pregnancy - Son born 11/01
          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

          Comment


          • #6
            Re: Going to See Dr. Maron

            OOps,
            She is going to see Dr. Barry Maron. Shirley will clarify this herself. We spoke last night on AOL and we finally were on the same tract after we both got a little confused one thinking one thing the other another thing.
            Thank god for instant messaging , I might have been standing in Boston waiting to meet her while she was in Minnesota. Only kidding
            Pam
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

            Comment


            • #7
              Re: Going to See Dr. Maron

              Shirley,
              Best of luck to you. You will be in great hands with Dr. Maron
              \"It is not length of life, but depth of life.\"

              Ralph Waldo Emerson

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              • #8
                Re: Going to See Dr. Maron

                Shirley, I am so glad you are going to see Dr. Maron. I hope he can turn things around for you and avoid transplant. But remember transplant waiting is worse than transplant itself. I will keep you in my prayers. Good Luck. :P
                Midge

                Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                ICD&Pacemaker 1996
                Heart transplant March 19, 2004 @ Mayo Rochester
                Mom of Kaye.

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                • #9
                  Re: Going to See Dr. Maron

                  Well I am thrilled that a 2nd opinion is in your furture!!

                  Best wishes,
                  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)

                  Comment


                  • #10
                    Re: Going to See Dr. Maron

                    FINALLY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
                    Fx

                    Comment


                    • #11
                      Re: Going to See Dr. Maron

                      Shirley,

                      Thank goodness, wishing you all the best .

                      Barbara and Stuart
                      Cleveland Myectomy Club
                      August 31, 2004

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