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halversa Even though I work in health care, I did not know what HCM was. The last 5 years have been "wild"! Find out more about halversa
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  • Back!

    I haven't posted on this site for a couple of years. My husband is the patient with HCM. He has been on a steady decline for the last few years, and today we have made the step to get listed for a heart transplant. We are waiting insurance pre-authorization. While the whole medical experience has been quite the "ride", this new step is another adventure. Apparently we have "transplant" insurance as a part of our regular health insurance. This is quite a blessing! If approved it will pay 100%, what a huge relief that is. Our Dr. has stated they think he needs and will be tranplanted within 6 months. I know they are just estimating, but how life altering this is!

    I hope to link up with someone in our age group-50-to sound board with who has had a transplant. While it is scarey, the alternative is also pretty scarey. We are still realing from the recent discussions and testing and trying to let it all sink in. We knew 5years ago that this would ultimately be the answer, but I guess you just keep it in the back porch until you have to have it. Thanks in advance for your support, I know this site was great support for me after his initial diagnosis.

    Amy
    Amy
    Husband (50) diagnosis HCM 6-07, CHF, A fib 12-07, ablations x 2
    Medication controlled most of the time.
    Transplant is in the near future.
    Kids 24 and 20, both normal echos.

    Mayo Clinic-Rochester
    University of Nebraska Medical Center-Omaha NE

  • #2
    Re: Back!

    Amy, I was transplanted at Mayo when I was 57. It will be 9 years in March. It is a wonderful place, the Dr's are great, we stayed at The Gift of Life Transplant House and mad life long friends. Any specific questions let me know. I am doing great.
    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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    • #3
      Re: Back!

      Thanks Midge!
      We are actually currently at the University of NE in Omaha. It is closer and our daughter lives there. Our care there has been as great as Mayo, just closer to our home and family. They have a world renowned solid organ transplant program also, with as many hearts as Mayo, so we are happy with them. Our Dr.'s are Mayo trained. I love to hear of people doing great so many years out, the statistics are not always so positive. Our biggest obsticle right now is insurance. Then on to more exciting things.
      Amy
      Amy
      Husband (50) diagnosis HCM 6-07, CHF, A fib 12-07, ablations x 2
      Medication controlled most of the time.
      Transplant is in the near future.
      Kids 24 and 20, both normal echos.

      Mayo Clinic-Rochester
      University of Nebraska Medical Center-Omaha NE

      Comment


      • #4
        Re: Back!

        Hoping for a smooth and uneventful transition to a new beginning. Keep 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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        • #5
          Re: Back!

          I hope he's able to get listed quickly - and get a new heart soon after.

          Gordon
          Myectomy on Feb. 5, 2007.

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          • #6
            Re: Back!

            Amy,

            I will be celebrating my "second" birthday next week! Yes, it has been quite a year but how your life does change. I received my heart transplant at Tufts Medical Center in Boston. Wonderful doctors and staff. It sounds like your husband is in very good hands. My very best to him...tell him to hang in there...it's not easy sometimes, but in the end it will be more than well worth it! His time will come and it will be amazing..
            \"It is not length of life, but depth of life.\"

            Ralph Waldo Emerson

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            • #7
              Re: Back!

              Cynthia, glad to see that you're doing well!

              Gordon
              Myectomy on Feb. 5, 2007.

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              • #8
                Re: Back!

                I am glad to hear of your "New" birthday to celebrate, Cynthia!~
                Amy
                Husband (50) diagnosis HCM 6-07, CHF, A fib 12-07, ablations x 2
                Medication controlled most of the time.
                Transplant is in the near future.
                Kids 24 and 20, both normal echos.

                Mayo Clinic-Rochester
                University of Nebraska Medical Center-Omaha NE

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