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Update on Brian


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Sheila and Paul We are a family of four - Brian has had a myectomy 2006.
Sheila and Paul
Shy Heart
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  • Update on Brian

    Well Hello Everyone:
    I want to update you on Brian (9 years of age) who had a myectomy at Toronto Sick Kids in Toronto Feb. 8th.

    He has just had his follow up echo March 24th at the Children's Hospital of Eastern Ontario - his gradient has gone from 200 down to zero and he is doing GREAT! He is not out of breathe and his incision has healed nicely. He will be going back to school in about two weeks - right now he is being home schooled because of everything going through the school (flue, colds, etc). By then Spring should almost be in Canada and he should have a good rest of the year.

    I cannot thank everyone at this website enough for all the support while I was having my "meltdown". As I said before the surgery part was tough, seeing your child so sick, but the results have been worth it! He feels good, looks good and is good!! And I got to meet a wonderful women (Abby) and her beautiful daughter whom I met right here on this website and who happened to be in Toronto at the same time. And this was all due to Lisa and a vision she had to bring us all together - because there is strength in numbers and Lisa, what can I say, but thank-you!

    All the best to everyone and I pray for everyone each and every night.
    Love Sheila, Paul, Brian and Ellen

  • #2
    Ok - Make me cry... but they are happy tears!
    I am thrilled Brian is doing well and thrilled you and Abby got the chance to met.

    Best wishes to you all!!!
    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)


    • #3
      Sheila, I'm so happy for you all. Please continue to give us updates - Linda


      • #4

        I'm so happy for you and your son, it is always nice to hear of a good report especially when it is our children

        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


        • #5

          Woo Hoo!!

          Sheila and Paul, what great news... and thanks for posting the update to let us know how Brian is doing! It was tough going there for a while, but you all got through it just fine and came out the other side better than what you could have imagined. Pretty cool that you got to meet Abby too while you were there.

          You and your family take care, and congrats!

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


          • #6
            I'm so happy to hear Brian's doing so well! Tell the little guy hello from his HCMA friends. I'm sure he's ready to go back to school to be with his friends already.


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


            • #7
              Thanks everybody! Brian cannot wait to get back to school - he misses his classmates and the staff and teachers at his school have been so wonderful. Like I said, the Doctors were worried about all the wonderful "bugs" that go through the school in the winter and also falling on the ice and pavement ... that would not have been good until the ribcage really healed.

              But now he is ready for school and is waiting for the next two weeks to pass - the next medical step they say is the ICD - I was told the question was not "if"; it was "when" to implant - he does need it according to the Doctors. I just pray his septum will stop growing but the reality is he is only 9 (a big 9) and has a lot more growing to do. If he blocks again, I guess another myectomy would be done - Oh gosh .....

              If I have learned one thing about HCM, it is to take one day at a time and just enjoy it. So for now, that is what I am doing. We have nice weather today and enjoy it I will!
              Love Sheila


              • #8
                Hi Sheila:

                I'm thrilled to hear that Brian is doing so well. You realize, of course, that this may be the only time in his life that he's excited about going to school!

                It was great to meet you in Toronto. Brian is a sweetheart, (an absolutely adorable redhead) and it was a delight to meet you all. I'm glad that we could be there to give you support when you needed it. If our appointments ever coincide again, we'll have to go to The Flourish, a great Chinese restaurant not too far from Sick Kids.

                Give Brian a hug from Olivia and me.



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