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UNOS disappointment

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maztbo grew up in boston,but live on the cape now with my wife and three teenagers Find out more about maztbo
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  • UNOS disappointment

    Having HCM (as we all know) presents us with challenges of understanding and acceptence by the larger community of cardiac dr.s that treat 'usual 'or 'ordinary' cardiac deseases to the point of frustration and bewilderment at our treatment by these dr.s. Finding the support and proper treatment by the dr.s in the few insitutions that HCMA has designated as 'COEs' have been a God send and refuge against the bias and ignorance of HCM of this larger community.
    The HCM clinic up here led by Dr Maron has been a magnet drawing HCM suffers from all over the east coast and beyone, it (the HCM clinic) also has been a influence in the attitude and respect of the our debilitatng condition by the transplant team here at Tufts. In the two years I've been on the list and have spent almost 2months inpatient I've seen a change in the awareness and treatment of HCM by the transplant team, the new residents that rotate through the program all seem increduless of the non responce of treatment since they all expect me to respond to what they have been taught , the Fellows,cordinators and leaders of the team are all quite emphathetic of my condition and commited to advancing me on the list.
    The local UNOS board is made up of the five hospitals that perform transplants up here in New England, there's a lot of competition for the limited donor situation (Tufts hasn't performed a transplant since mid Sept.and they have at least 12 people waiting in hospital).The team leader (Dr DeNofrio) presented my case for an exception to keep me at 1B, a week ago on their (UNOS board) weekly conference call, I was told yesterday they denied it, so my status is back down to II.The bias (against HCM) continues in even the transplant community,and this is not an opinion by me but one voiced to me by members within the team. UNOS's criteria is predicated on what they consider 'quality of life', someone that gets symtomatic relif through IV or mechanical means is considered more acute than someone like me that gets no relif at all.I have to stay completely sedentary or I'm miserably sob, fatigued and all the other symtoms that make my 'quality of life' horrible.Since my wife has to take up the slack in the loss of my income (disability isn't enough) in working as much as she can, I force myself to do the chores to run a home (cook,laundry, taxi and run chores) I can't be sedentary, since the reality is I won't be transplanted til I'm hospitalized in liver and kidney failure (I've been in CHF for over two years) I hope I'm pushing myself closer to that end.
    I'm more saddened than depressed by this situation,and much as I'm complaining about the HCM bias,things would be different if more people were registered as organ donors
    Thanks for letting me whine and vent again.

    John
    Last edited by maztbo; 11-02-2012, 05:31 PM.
    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: UNOS disappointment

    Hi John,
    So sorry to hear of the decision. It just doesn't seem fair. I read all your posts and I can tell how frustrated you are becoming.
    I hope things improve for you soon.
    Even though we have never talked, never met and know very little about eachother. It is amazing how connected we can become with our fellow HCM friends. I'm thinking of you.
    Michael
    Dx with HCM November 2009
    Myectomy and Mitral Valve Repair @Tuft's March 2010

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    • #3
      Re: UNOS disappointment

      John,
      I'm sorry to hear of it. You've shown a tremendous strength throughout this process, and I hope you can continue to be as strong. I'm sure it's not easy.

      Gordon
      Myectomy on Feb. 5, 2007.

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      • #4
        Re: UNOS disappointment

        John - You've been through a lot and yet still advocate on behalf of HCM'rs. Thank you! I hope things change soon and until a new pump is install in you, I wish you all the best. You know you can whine here anytime!
        Marc
        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 . . .

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        • #5
          Re: UNOS disappointment

          Hang in there John. You are in a tough spot. Please know I am thinking of you. It WILL happen
          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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          • #6
            Re: UNOS disappointment

            John,

            I'm sorry to hear of this...please know that whether you know it or not...you are in a lot of thoughts and prayers.

            I hope your situation changes for the better soon.
            • Diagnosed with HOCM 7/09
            • ICD implanted 8/3/09 - Mayo Clinic
            • Septal Myectomy at Mayo by Dr. Dearani on August 16th, 2012
            • I left a piece of my heart at Mayo Clinic and I am forever grateful
            • I currently take Metoprolol Tartrate 50 MG twice daily

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            • #7
              Re: UNOS disappointment

              Oh, John...I am so sorry to hear that. I can't believe UNOS did that. I'm glad that the Tufts doctors were on your side. Don't dispear. Hang in there. Your day WILL come soon. I'll call you and we can talk...take it easy and know that we are ALL behind you to give you support.

              Cynthia
              \"It is not length of life, but depth of life.\"

              Ralph Waldo Emerson

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