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  • weird question on myectomy

    Hi

    I have been thinking of having this procedure done. This may sound really weird, but has anybody kept that little bit of heart muscle that they have taken out? I mean geez, it has agravated me for many years and I would like to know where it is at at all times.
    Every day is a present I was diagnosed when I was 38, I have asthma which made me assume it was ashtma, getting old, and being about 30 lbs over what I should be. I have days when I would rather not know. Myectomy club 3Jan06 CCF, my life is so much better!!!!

  • #2
    Re: weird question on myectomy

    I have to date had two things removed. - One a benign brain tumor which was the size of a golf ball, and I just had a wide excision of a tiny mole that was a melanoma. I signed papers donating both of them to science to be studied after they were biopsied. I did have both of the surgeries done at research hospitals, so I am sure that played into it.

    I would bet that they would ask you to do the same thing with the abnormal heart tissue.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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    • #3
      Re: weird question on myectomy

      Scott,

      When i had my myectomy at the Cleveland Clinic, one of the first questions they asked me is if i would donate the tissue to research. Of course i said yes... what else was i going to do with it? LoL. Nowadays most, if not all 'leftovers' from surgery that are not going to be used for research, are incinerated immediately following the procedure. Maybe it varies state by state, but in Montana they told me it was the law. I asked for the rib back that they broke off during my kidney surgery, but they would not give it to me. I thought it would make a nice chain.

      Jim
      "Some days you're the dog... some days you're the hydrant."

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      • #4
        Re: weird question on myectomy

        Scott,

        When I had my myectomy done 7 weeks ago, I asked the same thing. I was told it was against the law to release the piece of heart to me. I then signed the proper forms to allow the Clinic to use the piece of heart for research. I feel I did the right thing. Although it would be cool to have a jar sitting above my fireplace...

        Tigger1
        " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

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        • #5
          Re: weird question on myectomy

          I didn't think along these lines until after the surgery was over. Good thing too, because my wife would have thought I was Looney Tunes.
          Welcome to the boards.
          Now for some normal questions.
          Have you been seen by an HCM Specialist?
          Where are you considering getting the surgery done?
          What drug therapies have you tried?

          If you need any questions answered about the surgery and the recovery the many myectomy veterans would be glad to help. Send me a PM if you would like my phone number.
          Fx

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