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Headed home from mayo!

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heather Find out more about heather
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  • Headed home from mayo!

    Our apps went ok. My heart function is still good with an EF at around 48%. My main complaint this time was the SOB I've been experiencing. He thinks I am having a bit of fluid overload. He increased my lasix to 20 mg twice a day. I read on one of my reports that I had jugular vein distention at 12 whatever unit of measurement they use. I've never had that before. I'm quite interested to read the whole report.

    As for the boys, they haven't had any changes in their heart thickness since 2011. My 13 yr old has a septum size of 20 and on his stress test, his bp went up 19.6%, which they like it to be at least 20%. No arrhythmias on holter.

    My 17 yr old's septum is 16 and he wasn't able to have a stress test because he has mild cerebral palsy in his legs, but he didn't have any arrhythmias either.

    Three different specialists agreed that they both need icd's due to our extensive family history. So we are going to discuss this. The 17 yr old is fine with it but the 13 yr old totally broke down....

    It's been a long trip and I'm emotionally and physically drained!
    Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.

  • #2
    Re: Headed home from mayo!

    Glad you trip went as well as possible. You've gotten a fair amount of good news. Boys septum size is unchanged. A preventive AICD can be placed, your EF is stable. Now that you're home, put your feet up and do your best at the "relaxing" part.
    LindaSo
    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: Headed home from mayo!

      Glad things are basically stable, but sorry you have to deal with ICDs for boys. I can imagine that is quite stressful. Thinking of you Heather.
      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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      • #4
        Re: Headed home from mayo!

        I just heard from dr. Ommen and he said I was quite limited on my stress test. Suggested cutting back on my toprol too. Is the stress test the test where they get your vo2 max number?
        Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.

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        • #5
          Re: Headed home from mayo!

          Yes, it is. Do you know what your VO2max number was? Mine was also quite low (I think 19) the last time I had the test, so we decided to enable the rate response mechanism on my ICD and it has helped quite a bit. Have you ever utilized that? Maybe you could ask him whether that might help you too.
          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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          • #6
            Re: Headed home from mayo!

            Glad you got some definitive answers. Its not what we want to hear, but it could have been worse. Kids will have a heard time with the ICD issue - considering counseling. Its best to address this as a strong united family.
            Marc
            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 . . .

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            • #7
              Re: Headed home from mayo!

              I've asked Dr. Ommen twice for my VO2 results and no luck! He replied, but didn't answer my question. Hopefully one of my reports will show what it was. Which one would show it? He it was worse than last time I did it 2009) and we would try the increase (20 mg from once daily to twice daily) in lasix before doing anything else.
              Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.

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