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maztbo grew up in boston,but live on the cape now with my wife and three teenagers
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  • Just checking in

    Been back and forth to Tufts, over the last few weeks with fluid overload management issues, misserably increased sob, and dizzyness.They did bloodwork yesterday and it showed they over did it and my kidneys were hurting so in I go again.So everyone is scratching their heads trying to figure out what to do next, they did a R.heart cath this afternoon.This one is called a Swan-Gantz procedure where they leave this godawful looking tube coming out of my neck, and I can't move more than 4ft from my bed,I had this done before and it's trully a'pain in the neck'(just had to say this pun) this is such a weird thing, but it'll brobably come out tomorrow or Sat.after they get all the pressure readings after they have me pedal that contraption they bring in room. All in all I'm in good spirits even though I've been feeling miserable for the last month or more.It is what it is. My Dr. on the team feels that Dr.DeNofrio (the head honcho), when he gets back from vacation,might present my case to the local UNOS board to move me up to status I b since there's such limited things they can do for me and my symptoms are so debilitating. Well I'll see what tomorrow brings.

    John F.
    had HCM since birth
    'enlarged heart' identified in 96'
    HOCM dx in 7/08
    Myectomy 8/09
    extended Myectomy 5/10
    'End stage' HCM dx 8/10
    CRT-D implanted 9/10
    evaluated for Transplant 11/10
    Listed for transplant 6/11

  • #2
    Re: Just checking in

    If they could leave your Swans in you would be a status 1 A. Neck lines are so much fun. I hope they can get you leveled out soon. I also hope you get moved up even sooner.

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


    • #3
      Re: Just checking in

      Boy, John, I sure hate to hear what you are going through right now. I hopeful they will get you moved up the priority list soon. Know that there are a lot of us out in the community that are thinking about you right now!

      God bless,

      A/V Heart Block 2009
      Permanent Pacer 2009
      Dx non-obs HCM CCF 2011
      CRT-D 2011
      Listed for H/T UAB 2011
      Dx Cardiac Sarcoidosis 2012
      Heart Transplant UAB 2012


      • #4
        Re: Just checking in

        Sorry to here about your issuses, glad to see your still in good spirits when i got as sick as you are now i was a mess.
        Thinking of you

        take care
        Forever Young

        I was diagnosedwith HCM at 6.
        Went into Atrial fibrillation so had a ICD put in at 16
        Went into Heart failure at 17
        Got a heart transplant at 21(2009)


        • #5
          Re: Just checking in

          John - Props for the positive outlook! Hope you start feeling better or they move you to the top of the list.
          Diagnosed @ 48
          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
          AICD - Valentines Day '08, Spark Plug replaced 11/14
          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
          Quietly going insane . . .


          • #6
            Re: Just checking in

            Keep your positive outlook John, we are all thinking of you.
            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


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