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  • hello all

    hope some of you remember me--if you do you'll remember that i don't check in very often because i am one of those people who normally doesn't think about his condition at all but expects to die within a week when he spends too much time reading/talking about it!

    anyway--just checking in. i am still in boulder, colorado (where i moved to last summer). unfortunately my septum has not magically shrunk back to normal. fortunately it hasn't thickened anymore either. i got an echo done a month or so ago and it seems stable. no major symptoms have developed either and the altitude hasn't had any bad effects. don't tell my wife though--i use this as an excuse to do less than my share of snow-shovelling!

    some might remember that i got the big zap in may. turned out to be nothing to worry about (as i'd suspected)--no v.f, because of the argument i was in at the time my heart-rate just shot over the threshold. i was given the opportunity of lowering the threshold but decided i'd rather have the protection if it was ever really needed and could just try to be more zen in the meantime...

    i hope you are all well.

    warm regards, and happy holidays,

    mongo

  • #2
    Hey Mongo,

    Although there is certainly nothing more with being more "zen" in your approach, I wonder whether your ICD is set to shock you too soon. My ICD is set to shock me only if my heartrate reaches 200 bpm. I think that this is high, but is there in case of emergency. Being that I am on large doses of beta blockers, my normal heartrate, even exercising, rarely goes over 100. I sometimes have short episodes of arrythmia, but these haven't recorded my HR over 160 or so. I have never been shocked, appropriately or not, but if you got one after just having an argument or getting upset, something is wrong.

    It should never shock you innappropriately. Talk to your EP. You might want to raise the settings. Do you know where it is set now?
    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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    • #3
      Hi Mongo,
      Just a quick word or two. When I still lived where we had winters I had a lot of trouble shoveling snow. I wasn’t diagnosed for a long time to come, but I was still suffering from the symptoms – especially when I tried to shovel snow or some other heavy labor.

      I solved the problem of mowing the lawn in the summer by hiring a neighborhood kid who was saving for college, but in winter that sort of help was not available so I did the next best thing. I bought a snow blower/thrower with a 5 HP Briggs & Stratton motor. Our drive was about a hundred feet long – one lane wide at the bottom and three lanes wide at the top. There was no way my wife could have done that job.

      Fact is, our last winter there the clutch had burned out on the machine and I hadn’t gotten it fixed when we had a five foot snowfall – and then the winds started. It snowed on Sunday, and we didn’t get out until late Thursday afternoon to go grocery shopping. Yes – that was our last winter there.

      Seasons Greetings,
      Burt

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      • #4
        Hi Mongo. Yep, I remember you. I'm glad to hear that all is well with you. Take care and pop in sometimes.

        Reenie
        Reenie

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

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        • #5
          Originally posted by Cynaburst
          It should never shock you innappropriately. Talk to your EP. You might want to raise the settings. Do you know where it is set now?
          cynthia: hope all's well with you in california.

          technically i didn't get an inappropriate shock--my heart-rate was over 200 for the appropriate length of time. the device reads it as vf but it wasn't vf--that is to say, i didn't get dizzy, pass out or any of the other stuff associated with vf--it literally hit me mid-sentence (and you know what? apart from being a bit of a surprise it wasn't really that bad!--hope for those who dread the first big one). discussed it with my cardio and he said it was up to me as to whether i wanted it raised but he didn't think it was necessary. for context: my icd check rarely catch any episodes of any kind.

          burton: my driveway isn't very big--i'm just lazy! but if the time ever comes when it gets too much i'll look into a blower for sure.

          reenie: i'll try to be a little more regular in my appearances.

          cheers all!

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          • #6
            Mongo, It's nice to get updates - glad all is well. Linda

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            • #7
              hello all,

              here i am again with my near-annual update. i am alive and well, with no change in my condition/symptoms (or none that i know of anyway). still here in colorado. the big news is that after enduring a couple of years of discomfort i finally decided to get my icd implant revised. some of you may remember that my original implant stuck out quite a bit (the leads had popped over a corner of it). anyway, i decided to get it fixed, and it has been 2 weeks. i am kicking myself for not having done it sooner--it is like night and day! plus, the doc made a case for just putting in a new device now (because of pocket problems) and so i have a brand new medtronic entrust. anyone know much about this one? it is marginally smaller than the gem3at that was in there, so that's good--i brought the old one home.

              hope all are doing well, or as well as can be expected. and i really will try to check in more often. see my first post in this thread for an explanation of why i usually don't.

              cheers,

              mongo

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              • #8
                Hey MOngo.

                Good to hear you are alive and kicking!

                I will be seeing my EP guy on Tuesday and will be asking him about replacement since my device is on that Medtronic recall list. So far there have been no problems, but...

                Anyway glad to hear the replacement went well for you. Take care, and do stop in for a chat more often than once a year.

                Peace,

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

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