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Columbia Presbyterian- nor pace

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Michael-medic I've been with my domestic partner for 12 years. Ed is a Resident in Plastic Surgery. Find out more about Michael-medic
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  • Columbia Presbyterian- nor pace

    Hello,
    It's been some time since my last post. Presently I'm in Columbia NYC starting on Norpace. I've been here since Monday. Even though the Norpace is usually used on obstructed HCM prior to myectomy they thought I might get some relief. So far no difference. Of course I end up with urinary retention. I'm voiding just enough to not require a foley.

    I've been told that all pharmaceutical options have been tried. Next step is listing. So we will see what happens over the next few months.

    Michael
    Dx with HCM November 2009
    Myectomy and Mitral Valve Repair @Tuft's March 2010

  • #2
    Re: Columbia Presbyterian- nor pace

    Micheal - Hope this improves ASAP. Keep us informed.
    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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    • #3
      Re: Columbia Presbyterian- nor pace

      I hope this helps - and that you get out of stir soon!

      Gordon
      Myectomy on Feb. 5, 2007.

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      • #4
        Re: Columbia Presbyterian- nor pace

        Well I'm home after three nights at Columbia. It turns out that my QT was widening and I had some runs of VTach in my sleep. The Norpace was discontinued and I was sent home. This was my first overnight admission at Columbia. I was very happy with the nursing staff and how the whole team of cardiologist worked with me and kept me well informed. Now I'm waiting for this residual urinary retention to go away.
        Dx with HCM November 2009
        Myectomy and Mitral Valve Repair @Tuft's March 2010

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        • #5
          Re: Columbia Presbyterian- nor pace

          Hi Michael,
          Sorry to hear that this won't be a direction you can go . . . but you did what you could.

          Gordon
          Myectomy on Feb. 5, 2007.

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          • #6
            Re: Columbia Presbyterian- nor pace

            So they think the v-tach was Norpace related only? Or did they suggest you might need an AICD?
            After years of symptoms:
            Officially Diagnosed HOCM 2006
            Myectomy 3/11/13 at non-COE
            Extended Myectomy 7/23/14
            At Mayo with Dr. Joseph Dearani

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            • #7
              Re: Columbia Presbyterian- nor pace

              Hi Jill,
              Yes they were confident is was related to the Norpace. I've worn Holter monitors in the passed and multi admits and never had an arrhythmia problem. With serial EKGs this week they could clearly see the widening QT. I also take the maxim dose of Ranexa 1,000 mg twice a day, which also can widen the QT. since I can't make it through the day without Ranexa and atenolol it was safer to stop the Norpace. I'm fine with that since it was really not used for post myectomy pts anyway. It is used prior to myectomy to relieve obstruction. The thought was since I have severe microvascular disease and restrictive physiology that it may help relax the left ventricle and offer some relief from the fatigue chest pain and sob.
              So now I added Flomax to my regiment. Lol
              My journey started 10 years ago, the week of my 40th birthday and last week was my 50th. My 60th better be hospital free.
              Dx with HCM November 2009
              Myectomy and Mitral Valve Repair @Tuft's March 2010

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