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My name is Aimee and I am 48 years old...

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  • My name is Aimee and I am 48 years old...

    My name is Aimee and I am 48 years old. I have HCM and I am on the transplant list at the U of Minnesota. I am the 4th generation in my family to be dx with this. My son is the 5th generation. I am 1/10 children in my very large family. My mother carried the gene for this, as did her father, as did his mother, and now my son. Our daughter who is 27 is free of this ..so far. My dx came at age 37, well after we had children. I have a pacer /ICD with my implantation this last Dec 23rd. We are in the waiting stages of transplant and know that the call could come any day with the ring of the phone. This is both exciting and taxing. I no longer work and it is so ironic that I was a Critical Care Nurse and helped families with transplant decisions, saw them through the worst and the best times. Now it is my turn to gather strength and support. Ag
    Ag

  • #2
    Aimee, welcome to our transplant board. I too come from a long line of HCM'ers. A lot of it is my assumption with early deaths of my grandmother and 2 uncles. My father was known to have it and died at 59. I will be 59 this summer and it was always my goal to outlive my dad with this illness. Due to the generosity of someone else I will make 59 and hopefully many more. My transplant was 14 months ago at Mayo Clinic. I am doing very well. There were discouraging times in the journey as I thought I should wake up and run a marathon. I have to say that at the one year mark I feel better than I have in 20 years. You are defnitely in the worse part of the journey. WAITING. But know it will come and life will improve. I am thinking of you and will keep you in prayers. God Bless.
    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
      Aimee,
      Welcome to the board. You have the benefit of knowledge that this is a long road with many highs and lows. I hope the message board is helpful to you during your transplant process and afterwards as well.

      Be well,
      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

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