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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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  • conclustions of Unos verified

    Hi Folks,
    It seems like it's been ages since I've posted anything here and when I've visited It's been hard to respond to many threads here on the transplant threads since I don't want to bring people down or burst anyone hopes. Was up at Tufts yesterday for a regular 2 month check up and saw the big cheese (Dr, DeNofrio head of trans. team) we've talked extensively over the last few years and I've given him my research and conclusions of the sorry state of UNOS so he knows I'm aware of the truth of the process, and distribution of thoracic organs, He asked for my email address and sent me 3 articles from the 'American journal of Transplantation', 2 of them technical reports from 'Work studies' from work groups within UNOS supposedly addressing the issues of the problems of the current distribution system and the underserved cardiac conditions such as ours, both filled with a lot of technical gibblygook, charts, and shifting of faults but very little in real solutions and addressing real reasons why we are in this situation. The 3rd article was the bombshell it was a editorial written in response to these 2 work studies by a dr, from UCLA and one from the Cleveland Clinic. The article confirmed all my conclusions of institutional control and government paralysis to address it and change it "Maybe the real solution, which would make the issue of having to retool the heart allocation system and/or broader sharing just an interesting ‘‘academic’’ topic for pro–con debates at the transplant congresses, and which most US transplant centers apparently do not seem to want to address and governmental authorities seem afraid to pursue"
    The editorial went on to deal with other issues that are impacting severely the fair and equal allocation of hearts,the proliflation of LVADs and their 'hogging' all the transplants and the ethically questionable "tourist transplants' bringing in a "upper echelon socioeconomic" factor to it. The article goes into complete details in describing many other factors that are causing such problems one in which I hadn't known was that the cut off age for hearts (for donors) in the USA is 29 where as in Europe it is 43.the article just dealt with the status as UNOS is and never even touched on the absence of using the state of the art technologies employed elsewhere that would increase the donor pool substanculy here, it concluded...." Some closing thoughts on the supply side of the equation. If one assumes that organs are in fact being allocated appropriately based on the extremely high approval rates bythe11UNOSRegionalBoardReviews,wewouldinreality be overhauling and potentially complicating the current allocation system over little more than a relative handful of organs. If the supply was close to meeting the demand, then maybe the work involved in such changes would be worth it. But as long as the discrepancy is so large and growing, there will always be patients, albeit with evolving characteristics, dying on the waiting list. The current plateau in the number of donor hearts available each year is due to a multitude of reasons some of which are truly potentially remediable" I can't attach this article here but if anyone wants a copy they can email me at [email protected] and I will send you a copy.
    Just to give you a update on myself,I spent a couple of days in the hospital with a sever gout attack that they thought my ankle was going septic (thank God it wasn't LOL) I barely get out of bed these days and all this snow is nuts (4-6ft surround my house) no sense in whining about my symptoms we all know what they're like but I don't understand why I really don't get depressed LOL!!! Ah the good Lord keeps me going, Latter everyone!

    (darn I misspelled the thread LOL)
    Last edited by maztbo; 02-25-2015, 09:21 AM.
    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: conclustions of Unos verified

    Your upbeat attitude considering your health and this winter is an example to be proud of.
    The snowbanks here are frozen solid and 6 ft. High.
    Hang in there

    Sent from my SGH-I337M

    Comment


    • #3
      Re: conclustions of Unos verified

      Was this one of the articles he sent you http://www.medscape.com/viewarticle/838097

      Or it might have been

      Timing isn't everything: donor heart allocation in the present LVAD era. Division of Cardiology, Mount Sinai Medical Center, New York, New York.

      Journal of the American College of Cardiology (Impact Factor: 15.34). 04/2012; 60(1):52-3. DOI: 10.1016/j.jacc.2012.03.017

      Stable patients on left ventricular assist device support have a disproportionate advantage: time to re-evaluate the current UNOS policy. Department of Cardiothoracic Surgery, Minneapolis Heart Institute at Abbott Northwestern Hospital, Minneapolis, Minnesota 55407, USA.

      The Journal of heart and lung transplantation: the official publication of the International Society for Heart Transplantation (Impact Factor: 5.61). 06/2011; 30(9):971-4. DOI: 10.1016/j.healun.2011.05.004

      The Future Direction of the Adult Heart Allocation System in the United States


      D. M. Meyer, J. G. Rogers, L. B. Edwards, E. R. Callahan, S. A. Webber, M. R. Johnson, J. D. Vega, M. J. Zucker, J. C. Cleveland

      I was able to access the full texts of each of the articles, however, several of them required the use of a proprietary database that costs me several thousand dollars a year. I suggest that anyone that is interested, their doctor's office will certainly be able to find the articles with the citations above.





      Last edited by Jordan Z.; 02-25-2015, 12:01 PM.

      Comment


      • #4
        Re: conclustions of Unos verified

        These are very current articles printed in American Journal of Transplantation 2015; 15: 7–9 Wiley Periodicals Inc.

        the Editorial is "Changes in Donor Heart Allocation in the United States Without Fundamental Changes in the System: Rearranging Deck Chairs and Elephants in the Room"
        By M. L. Barr1,* and D. O. Taylor2
        1Department of Surgery, University of Southern California, Los Angeles, CA 2Department of Cardiovascular Medicine, Cleveland Clinic Foundation, Cleveland, OH Corresponding author: Mark L. Barr, [email protected]

        The other 2articals are #1The Future Direction of the Adult Heart Allocation System in the United States

        D. M. Meyer1,*, J. G. Rogers2, L. B. Edwards3, E. R. Callahan3, S. A. Webber4, M. R. Johnson5, J. D. Vega6, M. J. Zucker7 and J. C. Cleveland Jr8
        1Department of Cardiovascular and Thoracic Surgery, University of Texas Southwestern Medical Center, Dallas, TX 2Department of Medicine, Duke University, Durham, NC 3United Network for Organ Sharing, Richmond, VA 4Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, TN 5Department of Medicine, University of Wisconsin School of Medicine, Madison, WI 6Department of Surgery, Emory University School of Medicine, Atlanta, GA 7Department of Medicine, Newark Beth Israel Medical Center, Newark, NJ 8Department of Surgery, University of Colorado School of Medicine, Denver, CO Corresponding author: Dan M.

        article#2 Meeting Report "Report From a Forum on US Heart Allocation Policy"

        J. A. Kobashigawa1,*, M. Johnson2, J. Rogers3, J. D. Vega4, M. Colvin-Adams5, L. Edwards6, D. Meyer7, M. Luu1, N. Reinsmoen1, A. I. Dipchand8, D. Feldman9, R. Kormos10, D. Mancini11 and S. Webber12 on behalf of the forum participants

        These were reports from working groups within the UNOS sphere and are most recent ones, read them and judge for yourselves whether my opinion is true or not and remember it is just my opinion, I just want fairness to the system and the medical community to tell us the truth not lead us on with false hope and promises,. The issue is complex and nuanced but not hard to understand that there are economic vested and regional interests that are determining the allocation of thoracic organs unfairly and in some ways unethically

        If you want the complete articles I have them in PDF form and can send them to you I left my email address in the first post above
        Last edited by maztbo; 02-25-2015, 01:23 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

        Comment


        • #5
          Re: conclustions of Unos verified

          John -- Send them.

          Comment


          • #6
            Re: conclustions of Unos verified

            I'm sorry to take up more space in this thread but I didn't get to include the rest of the final paragraph in the editorial and I feel since most will not have access to it I should include it

            The current plateau in the number of donor hearts available each year is due to a multitude of reasons some of which are truly potentially remediable
            through improving overall consent rates, decreasing outright organ wastage/inappropriate turn downs (with heart donors in Europe having a median age of 43 years compared to only 29 years in North America (3), the likelihood that potentially good organs are not being used has to be strongly considered), and increasing the number and suitability of expanded criteria organs through both conventional management strategies as well as novel donor interventional research. Such research will not occur without innovative solutions to deal with logistical, regulatory, scientific, and ethical obstacles (4). In addition, removing or lessening the disincentive for use of such organs on a transplant center’s survival statistics with changes to the risk adjustment models currently utilized will also be required. The downstream effects of increasing supply by even a couple of 100 hearts every year would far surpass the benefit from our pursuit of the elusive perfect heart allocation system, not that these efforts should be viewed as mutually exclusive.
            So while the discussion that these two well-intentioned opinion papers will generate is certainly important, avoiding or ignoring the aforementioned issues will unfortunately result in less than substantive changes. So it goes
            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


            • #7
              Re: conclustions of Unos verified

              Thanks for sharing some excellent information. Thankfully, 3.5 months post myectomy that part of me is doing better than very good and I am actually running [and I wrote running not jogging] around 5 miles a day which outdoors in Chicago isn't a simple trick. However, my CKD is hovering between Stage IIIB and Stage IV. The presence of Stage IV and progressive CKD is qualification criteria for addition to the transplant list. In my situation, ESRD is probably a reality, and the benefit of being listed now is that it is quite likely that I would get to the top of the list prior to actually reaching a point where dialysis is required. After working through all of the issues over whether they would transplant on a person with Stage IV prior to requiring dialysis, the answer actually came back as a yes. Which dropped the matter square into the question of whether UNOS would facilitate providing an organ prior the the person on the transplant list actually being on dialysis.....I don't have an "official answer" back on that one yet, but its rather similar to some of the LVAD folks situations.

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