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question about pacing mode for an ICD

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CeeBee Diagnosed with HCM in May 08; ICD implanted August 09. Find out more about CeeBee
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  • question about pacing mode for an ICD

    I have an ICD for primary prevention and have never been paced (i.e. 0% pacing). I didn't even think the pacemaker was turned on, so to speak. But -- I had a septal myectomy in late April, and yesterday, I discovered that 1) I'm being paced 60% of the time and 2) that the pacer has kept my heartrate from increasing with exercise (and it's really, really frustrating to have found how much I've been cheated of the real benefit of all the walking I've done).

    So: my pacing mode has been changed from DDI to DDDR, and supposedly that will let my heartrate increase. I have yet to see my EP, so I don't yet know why I was being paced 60% of the time, or if the change in mode will change that too. Allegedly, after turning the ICD back on after the myectomy, the only thing they changed was the "base rate" from 40 to 60).

    So my question: has the "mode" of your device changed? (it's an alphabet soup -- VVI, DDD, OOD, yadda yadda). Is there a standard mode for people who are not regularly paced? I didn't even know I needed to be aware of it, or worry about it.

    I'm disappointed that in my regular follow-ups at the COE after surgery (2 weeks, 6 weeks, and one check in between) the issue was never mentioned, and the ICD was never interrogated, and I was never informed that I was suddenly being paced. It's a letdown. So I thought I'd ask this group what your experience is with your ICD "pacer mode" setting.

    Thanks,
    CeeBee

  • #2
    Re: question about pacing mode for an ICD

    CeeBee:

    I got an IACD and pacer a few months after my myectomy. I don't know what all those acronyms you mentioned above mean but when I went back at 5 weeks after my IACD/Pacer surgery they found out I was being paced 93% of the time (which they did not want). They made some changes and now I am down to 30-40% of the time. Interesting that my results are very different than yours. As my exercise/stress increases, the amount I am paced decreases considerably so that during a good workout I am being paced less than 3% of the time. The reason for the pacer in the first place was heart block which at times slowed my heart down to the mid 30's during rest mode; now the pacer kicks on at 60.

    I look forward to others responses to your thread as I hope to learn a lot more about AICD/pacers. Thanks for the question!

    Toodle pip... Moosedreams
    Diagnosed HCM Nov 2009
    100 mg Atenolol; Baby asprin
    First Trip to CCF June 2010
    HCM Specialist at CCF... Dr. Harry Lever
    Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
    AICD w/pacer at CCF... December 20th 2010

    Once you choose hope, anything's possible. ~ Christopher Reeve

    Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125

    www.TheRhubarbChronicles.com

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    • #3
      Re: question about pacing mode for an ICD

      Mine was also changed. I believe i was told it was to give my HEALING heart some rest post myectomy and like you they changed it to allow it to better react to exercise. I didn't really notice a difference as I assume it was all related to the surgery. I did notice the change (8 weeks post myectomy) when I was biking 20 miles that I "recovered" faster.
      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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      • #4
        Re: question about pacing mode for an ICD

        See below for a nice explanation of pacer codes - if you google it, you can find many others, but this one seems easiest to read and interpret quickly.

        Hope this helps - Linda

        http://anesthesia.slu.edu/pdf/pacemaker.pdf

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        • #5
          Re: question about pacing mode for an ICD

          Excellent find Linda, Thanks!
          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 . . .

          Comment


          • #6
            Re: question about pacing mode for an ICD

            Yes. Thanks Linda for sharing!

            Toodle pip... Moosedreams
            Diagnosed HCM Nov 2009
            100 mg Atenolol; Baby asprin
            First Trip to CCF June 2010
            HCM Specialist at CCF... Dr. Harry Lever
            Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
            AICD w/pacer at CCF... December 20th 2010

            Once you choose hope, anything's possible. ~ Christopher Reeve

            Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125

            www.TheRhubarbChronicles.com

            Comment


            • #7
              Re: question about pacing mode for an ICD

              At my last ICD check the tech told me that my icd wasnt "juicing up " like it should be. I ask her why not and she said it was probably a bad lead. I have had it 3 years. I see her now in 3 mos and the EP in 6 mos. Why is it that everytime I go they "tweek it" a little bit. Its never the same tech. Even when I had a colonoscopy, the tech that came to turn it off for the procedure tweeked it. Mine is at St Judes and for for defib purposes. Its never fired . (yeah)
              Mariab

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              • #8
                Re: question about pacing mode for an ICD

                Boy, you guys are very knowledgeable about pacer settings and codes! I wouldn't now anything, except the fact that the last adjustment was to work with any exertion...I started to feel less SOB and then boom! got the pericarditis and now have pneumonia. I am so SOB that I go around opening windows and had to lean against the wall..just started Azythromycin for the pneumonia this Wednesday...I know I should give this more time...but I have a gut feeling it is not my lung anymore..I REALLY expected to see SOME improvement by now...I have taken almost all of my sick days for the hospitalization and home recovery and just don't know why someone can't figure this out. sorry, getting very frustrated...I couldn't walk around a store today if my life depended on it
                \"It is not length of life, but depth of life.\"

                Ralph Waldo Emerson

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