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Cappy HCM and myocardial bridge patient, also have primary progressive MS Find out more about Cappy
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  • #16
    Re: Got On The List

    Hi Sandy
    If my earlier posts on this thread leaves you with specific questions about being listed or how it works in your zone , you can PM me any time, I pretty much know everything about the process and how it works'

    John
    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

    Comment


    • #17
      Re: Got On The List

      Originally posted by maztbo View Post
      Yes the area doctors that vote on an exception ARE the local UNOS board. The medium waiting time in your zone (2) when the last compilation of data was made (2004) is 276 days for o+ blood type the data does not separate status, the time in my zone was 587 days. They publish up to date figures on current numbers of people waiting in every area, transplants done (by zone and hospitals), waiting times by blood type (O is the longest, AB is the shortest) when you study their data it's obvious the numbers don't lie, and the current data show a negative trend not a improving upward one. Zones 5&6 (all the states west of the Rockies) have a combined average of 130 days. The problem is not with the doctors but a system that has balkanized into entrenched institutional interests, there are 11 zones that compete. The situation up here is that we're isolated and blocked by zone 9 (NY), my transplant coordinator told me last April that it would be better for me if I could relocate and that is what started me to study UNOS and all aspects of the transplant experience.
      UNOS runs the OPTN (Organ Procurement and Transplant Network) which is a system set up by an act of congress in 1984 and paid by Health and Human Services, it is suppose to run a national system but has become 11 competing zones isolated in self interest for the most part .I have gone into great detail in other posts I've made so I don't want to reiterate here. My HCM dr.(M. Maron who is an expert in HCM) shares the same clinic as the transplant team and if need be they coordinate with him but once you're on the list your care is under the transplant team control. Quality of life is suppose to be the most overriding factor (and believe me there is not much quality in my life, LOL) but there are catches and a paradox to that rule in regards to HCM and I stated it above, I feel worse than people with LVADs or IV drips but because I'm home and don't have these therapies I'm considered not as 'acute' and with the situation HERE the voting group won't give me that exception. A certain member here, who I've become good friends with was listed 6 months after me, in our conversations we progressed symptomatically almost on a parallel basis, a year ago last August his transplant dr. got him that exception (he lives in Texas, waiting time avg. 227 days)she didn't put him through any cath.s to get it, and he was transplanted a year ago last March 17th. When I say there is a bias I do know what I'm talking about, it might be only here but I have to live with it, the transplant team here made no bones about it and didn't come out and state it in such a manner but the reality is until I'm in ICU or on any of the therapies I mentioned I won't see a transplant soon.


      [to clarify what I mean by a zone blocking, when a heart can't be matched in a zone of origin a call is sent out in a concentric circle going first 500 miles then 1000, then 1500, nothing going north gets by NY, and my own DR.s told me they have sent ones south to NY and nothing is ever sent north . also the numbers for heart transplants done last year in the closes zones are...my zone 1 (MA,ME,NH,CT,RI) 84, zone 9 (NY,VT)154 , zone2 (PA,MD,DC ,DEL,WV,NJ)332]


      It's funny you should be writing this. In our state, Michigan, we were told if you had to be in the hospital or on an LVAD in order to get on the list for a transplant because there aren't enough hearts to go around. I remember many years ago one of the doctors at the NIH (National Institute of Health) actually told my daughter's cardiologist that "we don't transplant HCM patients!" Bias... I'd say so.

      One question I do have for you is that you say in your history note that you WERE listed for transplant? What happened to that transplant?

      Silvia (mother to Kristy)
      daughter was diagnosed at age 6 with HCM, SSS, WPW, RBBB, LBBB Maheim Fiber and AF.
      had several ablations as well as an open heart for WPW ablation.
      Transplanted at 22
      Now in chronic heart failure
      Diagnosed with PRKAG2 (Glycogen Storage Disease) 3 years ago

      Comment


      • #18
        Re: Got On The List

        Hi Silvia,

        Not were or was but ARE, going on my fourth year now on the 'list', my latest posts like....http://www.4hcm.org/forums/showthrea...UNOS?highlight..... will explain what is going on, reality is I have to be on death's doorstop in ICU to get one, the list and UNOS is a joke. I'm highly disillusioned with this situation I'm in, I can not express enough how sick I feel. But I have a lot of faith in God.

        John
        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

        Comment

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