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amykmor Find out more about amykmor
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  • transplant news

    Hi! I recently visited Dr Maron in Minneapolis and was told that I would most likely be needing a transplant. I have had two myecotomys but I am still having major symptoms. Dr Maron said I have a stiff heart and will need to have testing done for a transplant. We are from Springfield, MO so Minneapolis is quite far. Has anyone had a transplant and know if it is a necessity to be close while you are on the list? I am just not sure how all this goes.

  • #2
    Re: transplant news

    Hi Amy - Sorry your joining a sub-set of rare HCMrs but hopefully soon, you won't have HCM! There are a few post-transplant folks and listed folks who are actively on the board and post frequently. I hope they can help you with any questions and offer advice. As I understand - your ranked on the list, obviously lowest priority on the bottom. As you climb the ranks (either by your declining status or as others are gifted and off the list) you are aware of your status and may have to relocate at some point - that point is where I'm clueless. Also - There may be transplant groups that meet locally in Springfield that might be helpful.
    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 news

      You can be flown in to your center if you are still waiting at home when the time comes. One reason I would suggest a COE for your transplant is that an HCM heart has different criteria for transplant I.e a rt heart cath for us could be presumed normal by a non HCM dr. I guess what I want to say is make sure this dr knows HCM inside and out or they may not even list you
      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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