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Thank you HCMA For Saving my Son's Life

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juliuskay Diagnosed 98 Find out more about juliuskay
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  • Thank you HCMA For Saving my Son's Life

    Monday I received a phone call from my son Brandon's (age 11) school stating that he had passed out during gym class and the ambulance was on their way. Upon examination at the hospital it was determined his heart had went into V Tach and that his defibrillator fired and saved his life. If it wouldn't be far you guys, especially Lisa Salberg advising me to seek a second opinion at the Mayo Clinic 5 years ago, he would not have had the defibrillator and he would not be here today. THANK YOU SO MUCH! You are all Godsend. Next week we take a trip to Dr. Ackermann at the Mayo Clinic for exams.
    Kay Julius
    Diagnosed '98
    Defib 02 in St. Louis
    Myectomy 03 at Mayo in Rochester
    One son diagnosed at age 3 in 2002 Defib implanted 2004
    Other son diagnosed at age 14 in 2010 defib implanted 2010
    5 out of 7 siblings positive for HCM with Defibs, 3 neices diagnosed with defibs, 1 nephew (died suddenly at age 10), 1 great-nephew diagnosed at age 1 month
    Brother age 50 transplant in 09 at Barnes in St. Louis

  • #2
    Re: Thank you HCMA For Saving my Son's Life

    Today's technology is life saving!! And, I agree.......Thank you HCMA for saving lives !!
    Onward and Upward !

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

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    • #3
      Re: Thank you HCMA For Saving my Son's Life

      This makes me smile. ICD's are truly little angels!

      Kaye

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      • #4
        Re: Thank you HCMA For Saving my Son's Life

        I am so glad that your son is ok, but very sorry to hear that his device was called on to do its job.
        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.

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        • #5
          Re: Thank you HCMA For Saving my Son's Life

          As a Mom, I rejoice with you!

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          • #6
            Re: Thank you HCMA For Saving my Son's Life

            So glad he had an ICD!

            Gordon
            Myectomy on Feb. 5, 2007.

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            • #7
              Re: Thank you HCMA For Saving my Son's Life

              Praise God !!!


              I am sooooo happy he is okay
              49 yrs. old
              Diagnosed at 31.
              Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
              First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
              Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
              Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
              My brother passed away suddenly at 34 yrs old from HCM.
              2 teenage children, ages 17 and 15.

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              • #8
                Re: Thank you HCMA For Saving my Son's Life

                Such a wonderful story Thank God for ICD's.
                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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                • #9
                  Re: Thank you HCMA For Saving my Son's Life

                  I am happy for you and your family and proud to be associated with the HCMA!

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

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                  • #10
                    Re: Thank you HCMA For Saving my Son's Life

                    Glad the ICD Worked. Maybe it's time to pull him out of gym class, though.

                    Bob

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                    • #11
                      Re: Thank you HCMA For Saving my Son's Life

                      Glad your son had an ICD and he is ok!!
                      May 1993 - Diagnosed Apical HCM
                      Nov 2010 - ICD

                      Comment


                      • #12
                        Re: Thank you HCMA For Saving my Son's Life

                        What a wonderful story and thanks for sharing it! Folks need to hear this stuff.
                        "Some days you're the dog... some days you're the hydrant."

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                        • #13
                          Re: Thank you HCMA For Saving my Son's Life

                          Thank you for your kind words. We will have many questions for the Mayo Clinic doctors next week and will keep you update on his condition.
                          Kay Julius
                          Diagnosed '98
                          Defib 02 in St. Louis
                          Myectomy 03 at Mayo in Rochester
                          One son diagnosed at age 3 in 2002 Defib implanted 2004
                          Other son diagnosed at age 14 in 2010 defib implanted 2010
                          5 out of 7 siblings positive for HCM with Defibs, 3 neices diagnosed with defibs, 1 nephew (died suddenly at age 10), 1 great-nephew diagnosed at age 1 month
                          Brother age 50 transplant in 09 at Barnes in St. Louis

                          Comment


                          • #14
                            Re: Thank you HCMA For Saving my Son's Life

                            So glad the ICD was there to do it's job! Also, we are all so blessed to have the HCMA there for us!!!

                            --JoAnne
                            Diagnosed Feb. 2008
                            ICD June 2010
                            Septal Myectomy (Cleveland Clinic, Dr. Bruce Lytle) August 2010

                            Comment


                            • #15
                              Re: Thank you HCMA For Saving my Son's Life

                              WOW... that is now 4 in a month!!!!! 3 ICD - 1 - AED save in our HCMA families..
                              Days like this make me KNOW that 15 years ago starting the HCMA was a wise choice... albeit a tough one.... sure glad I did not get scared away

                              But guys.. I need more help... we need to hire some more people.. and we need the funds to do it! HELP...
                              Our work is too important to not do it right!
                              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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