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Another one year myectomy anniversary...


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  • Another one year myectomy anniversary...

    In the same spirit as Felix's post last week, today is the one year anniversary of our daughter Caitlyn's successful myectomy at Tufts/NEMC. We've been absent from the message board for some time (about 6 months, actually) while we took a therapeutic mental holiday but we're now happily back. Caitlyn, now 15, is doing great. She had always been blessed by minimal symptoms, but I think she really notices a difference now in how she feels compared to before. Before the surgery she had exhibited a high gradient (130s and 140s) while on 300 mgs. of Veralan PM (verapamil) with a septum that measured about 18mm. At her last checkup with her local ped. cardiologist her gradient was at 10 or below and her septum is at 12 mm. She is now on 25 mgs. of Toprol. She even did JV volleyball in 9th grade this Fall and it was a thrill for her to do some physical activities with her friends again after three years since her initial diagnosis. And, of course, being 15 now she is driving! Pass the beta-blockers to me! -just kidding...

    It was good to take a break, but it is really nice to catch up with the message board again and see how the HCMA keeps growing exponentially! After taking last summer off, we are hoping to make it to the annual meeting in June and look forward to reacquainting with old friends and meeting some new ones.

  • #2
    I'm really glad to hear Caitlyn's doing so well! Thanks for checking in. I hope that I can meet in in June!


    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.


    • #3
      I've been thinking about you all. I'm so glad Caitlyn is doing so well. I look forward to visiting in NJ, Linda


      • #4
        It is great to hear how wonderfull Caitlin is doing. Thank you for letting us hear from you . May she continue to feel great.

        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


        • #5
          Thanks for all the nice comments and, whoops!- I just realized that I'd forgotten to sign my initial post!

          Paul (and Elizabeth), parents of


          • #6
            glad to hear that kaitlin is doing so well!

            We are also heading up to NJ for the conference, so at least 2 rep's from
            Atlanta will there...



            • #7
              Paul and Elizabeth,

              Glad to hear that Caitlyn is doing so well. A myectomy is a beautiful thing, ain't it? Thanks for posting on her one-year anniversary to let us know how she is doing!

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


              • #8
                It is so good to hear the Caitlyn is doing so well. I was praying for her last year at the time of her surgery. I had my myectomy last March 18 at Cleveland Clinic and am also doing very well. I am 64 and am able to do many things I couldn't do before.



                • #9
                  Thank you, Ralph and Jim, for your comments as well. It was good to take a break, but it is really good to be back in touch with the message board and to hear of both your success stories of your myectomies and improvement! Although we opted for Boston for Caitlyn's surgery, both my wife and I went to college in Cleveland and know what a great place the Cleveland Clinic is. Their track record with HCM is absolutely first rate.



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