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Update on Emily


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EmilysDad Here for my daughter
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  • Update on Emily

    It was a year ago yesterday that Emily was accepted into the transplant program at Children's in Boston, and ten months since her surgery. We had a relatively easy time; "only" 2 months on the list, eight days of hospitalization before an organ became available, and 12 days after surgery until she walked out of the hospital. Without a doubt those months of heart failure and waiting before the surgery were the hardest (except maybe waiting during the surgery).

    They told us we'd have "hiccups" during the recovery. the first was after two months, when she showed signs of humoral rejecttion and underwent two courses of IV Immunoglobulin, both of which made her very sick. The second was last month, when after eight biopsies that were near perfect, she got a 2 on the 0-4 rejection scale. They raised her drug doses and yesterday's biopsy was back to a zero, so we are feeling great today.

    The support of this group has been very important, and although Emily's HCM is totally cured, we still feel affinity toward the HCMA. If it weren't for the HCMA and Lisa we never would have gotten to Tufts for the original treatment that led Marty Maron to recognize that she was going downhill very quickly and needed to refer us to a pediatric transplant center. We certainly didn't expect that Emily would almost kill Lisa when she called her while Lisa was driving on the NJ Turnpike to tell her that her heart was coming and she was a little nervous about the upcoming surgery for which she was being prepped.

    The little bit of advice we might offer to families with somebody waiting for a transplant is: You wouldn't be on the list if there were better options, so just endure the waiting, and then the surgery happens and you get over that, and then you have to take meds for the rest of your life but you can begin to live a near-normal life. However, it is "near-normal," not "normal." You have to be disciplined about taking the meds, responding to requests to change dosages, endure biopsies, and the occasional "hiccupl" It still beats the alternative if you don't do the transplant.

    Emily's 17th birthday is next week. We are very aware that she might not be having it if it wasn't for the amazing gift she received. She's off today with her school's "Quiz Bowl" team to a regional meet in Burlington, VT. For those who haven't followed her story, the details are all at www.emilysatrium.org

  • #2
    Re: Update on Emily

    We are delighted with you and your family! Have a wonderful celebration for Emily's 17th.


    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness


    • #3
      Re: Update on Emily

      Happy Happy Birthday to Emily! We are all so proud of her and happy that she is doing so well.
      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.


      • #4
        Re: Update on Emily

        Thanks for sharing. We have a special affinity for your family too. HCM or not, we are all still family. You have much to be grateful for and I know you are very proud of your daughter. I expect that she is equally proud of you too !
        Onward and Upward !

        Diagnosed 4/07 HCM with fixed & dynamic obstruction
        Myectomy with resected cordonae tendonae 4/08 CCF
        ICD 10/08


        • #5
          Re: Update on Emily

          What a great birthday to Emily .. so happy for all her success and strength and having the best parents ever. Have a great celebration!

          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


          • #6
            Re: Update on Emily

            Bob - Thanks for making my day brighter.
            Be sure to tell her we all wish the best natal day possible!
            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 . . .


            • #7
              Re: Update on Emily

              So nice to read the good news - Linda


              • #8
                Re: Update on Emily

                It's great to see this. Emily has been an inspiration to a lot of us, and it's wonderful to see that she's doing so well.

                Myectomy on Feb. 5, 2007.


                • #9
                  Re: Update on Emily

                  Bob, I have tears in my eyes. I am so happy for her. Happy 17th birthday.

                  Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                  ICD&Pacemaker 1996
                  Heart transplant March 19, 2004 @ Mayo Rochester
                  Mom of Kaye.


                  • #10
                    Re: Update on Emily

                    Best wishes to Emily. It was so great to see her, one of our newest HCM transplant success stories, and my Arlington VA neighbor Claude Brady as our oldest HCM success story, at the HCMA Annual Meeting in NJ last June.



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