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Transplant looking more likely

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Michael-medic I've been with my domestic partner for 12 years. Ed is a Resident in Plastic Surgery. Find out more about Michael-medic
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  • Transplant looking more likely

    Hi,
    I was in Boston for more test with Dr Maron at Tufts a few weeks ago. I had a new MRI, VO2 max and right sided heart cath. I went for a check up after spending a week in hospital for sob and out of work for a month.
    VO2 score has gone from 24 two years ago to 19.
    MRI showed no new scarring.
    Right sided cath revealed high end of normal pressures at rest and pulmonary hypertension and severe diastolic dysfunction upon exertion. My pressures tripled when I started to pedal on the cath table.
    At our meeting with Dr Maron and Noreen and my partner (also a MD)
    It was decided I would wait and repeat tests in September or sooner if I don't feel well. I was told I could get listed now but would be such a low priority I would go crazy waiting for the call. I was the one who wanted to wait. I feel that since I am still working I would wait. It is getting more and more difficult for me to work but I'm not ready.
    I was wondering how others made the decision. I think that those that were on IV meds and LVAD's it made the decision easier. But there is no "bridge" device for my problem. It is just meds and when the fatigue and sob is ruining my quality of life, than I need the transplant. We just added Lasix to my regiment.
    Dx with HCM November 2009
    Myectomy and Mitral Valve Repair @Tuft's March 2010

  • #2
    Re: Transplant looking more likely

    Michael - I can't speak about the decision you may be facing, but I know others here who have walked in your shoes will chime in. Wishing the best & appreciate you keeping us posted.
    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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    • #3
      Re: Transplant looking more likely

      Michael, my quality of life was deteriorating and my VO2 kept dropping I think it hit 12 when Mayo had me evaluated. I was ready. Life became too much work. I waited 18 mos and am so grateful I made the decision. I started ohm a Milrinone pump just 3 months before my transplant a d that did improve my quality of life. I continued to work part time until transplant. They say Milrinone is not always effective on an HCM heart but it helped me. It is a big decision but I have 9 years I would not have had. Keep us posted
      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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      • #4
        Re: Transplant looking more likely

        Hi Micheal,
        You can see by my profile HCM hasn't been kind to me. After my second myectomy I sought out Dr Maron and got the news that I would need a transplant, I've been listed now for about 2 1/2 yrs and am pretty much bedridden and there's no end in sight being listed as a status II, I'm pretty frustrated right now (please read my latest thread-Unos Classification System- in the transplant section here). You can't get in serious contention for a heart til you're classified as a status Ia or Ib. Dr Marion and his HCM group are great but once you're in the transplant realm it's a whole different story you're up against a system that is'nt too friendly to HCM.The transplant team here at Tufts is a wonderful group all very caring, empathtic, and attentive, but the problem isn't with them it's the current state of affairs in the zone up here (zone 1) and the UNOS system itself

        In my opinion the sooner you get listed the better,I would get listed in the zone closest to you (zone 9 or 2)Columbia (zone9) does the largest volume in the country and has a dedicated HCM program but your zone (zone 2)in NJ has a shorter waiting time.You can be listed in more than one zone but both zones have to independently evaluate you(they'll share test data so you don't have to go through some of the same tests).It doesn't matter if you're working or not if they say you need it,get listed ASAP,the wait can be unbelievable, the wait time up here (zone 1) is double what it is in NY (UNOS data).If you want to know more PM me.

        John
        Last edited by maztbo; 05-19-2013, 11:06 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

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        • #5
          Re: Transplant looking more likely

          Michael of course I cannot even begin to understand the decision you have to make as I am new to allllll of this, but I wish you the best in your journey. And it's nice to know you (we) have these great people to help us and learn from. Keep us up to date! --- Kev


          Sent from my 5.
          Dx'ed 4/11 with "left ventricular hypertrophy"
          Re-dx'ed by a new cardiologist 4/13 at age 51 with possible HCM.
          Went to Tufts 7/13 and verified HCM with obstruction.
          Going in for a Myectomy and a Maze procedure on 11/13/13

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          • #6
            Re: Transplant looking more likely

            Hi. I went through this with my daughter, who was transplanted at age 16, over four years ago. We also were lucky enough to have Dr. Maron as our cardiologist. I would trust him to make the decision as to when you are ready. Not only can he assess your condition, he can predict the trajectory of your condition better than anyone. Once he advises you are ready, you can choose a center based on convenience and learning which centers are most effective at finessing the UNOS system. You want to pick a convenient center because your family and you will be living there for months. You also want a high volume center, as they have better outcomes. In the meantime, do the best you can to stay healthy. You are basically training for the athletic event of your life!

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