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Andrew's ICD fired

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Dolly (Andrew's mom) Find out more about Dolly (Andrew's mom)
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  • Andrew's ICD fired

    Andrew’s ICD fired twice this morning. He was sledding with friends and walking up a hill when it shocked him twice. He told me his heart had been “racing” for a couple days even though he never said anything to me about it.

    We called his heart clinic and they had us do a transmission with the CareLink Heart Monitor. They called us back a short time later. Naturally Andrew’s cardiologist is out of town until next week, so the only person I have talked to is the electrophysiologist. I am not sure I understand this all completely but here is what he told me…….

    He said Andrew’s ICD is set to detect and try a burst pacing at 188 bpm. If that doesn’t work it then goes to the next level at 190 bpm and gives a medium shock. He said Andrew received this level shock twice before his heart went back to normal. He said he did not receive the full level shock because it responded to the medium therapy on the second attempt. He told me Andrew was in what is called “normal” sinus tachacardia at 190 bpm. He told me this was not a fatal type rhythm, but his ICD is not able to detect the difference between the “normal” sinus tach and a fatal rhythm. Did I hear and understand that right? Does that mean he was not in danger from that sinus tach but was shocked anyway?

    I am also wondering if he could have been in this sinus tach for several days. He said his heart has been feeling like it was racing for a couple days, long before he started sledding this morning. He even said his heart didn’t feel like it was beating any faster at that moment of the shock then it has been the past two days.

    Anyway, for now I was told to just keep Andrew on a low key activity level, (nothing more then walking) until his cardiologist gets back next week. We then will need to call him. The electro. said his cardiologist might want to increase or change his meds. Right now Andrew takes 50mg of atenolol per day, which is the same dose he started on 7 years ago!
    Dolly~
    mom to Andrew(HCM) 21 years old
    Diagnosed \'95 age 5
    Myectomy \'96 age 6
    ICD implant \'99 age 9
    First ICD shock (X2) \'04
    ICD replacement surgery \'05 age 15

    *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

  • #2
    yes this is possible. I was shocked 10 times in a row because I cleaned the bathroom and got my heart rate up to what mine was set for which was 180. I recieved the full blows and it is very scary and hard to get over. So expect some time where he will be afraid of it firing. Sounds like he needs some more beta-blocker to decrease his heart rate. The ICD can not detect sinus tach from the dangerous rhythms and that's the down fall of them but they can and will save our lives. I'll keep you and your family in my prayers.

    Beverly

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    • #3
      Thanks Beverly. Andrew told me it hurt pretty bad, like someone kicked him in the chest full force, and how it shook his whole body right down to the bones. He said then when he got the second one he almost blacked out. He said he can't immagine how bad the higher level zap must be! So he is pretty scared and nervous now about it going off again. I feel so bad for him, I just can't imagine what it is like
      Dolly~
      mom to Andrew(HCM) 21 years old
      Diagnosed \'95 age 5
      Myectomy \'96 age 6
      ICD implant \'99 age 9
      First ICD shock (X2) \'04
      ICD replacement surgery \'05 age 15

      *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

      Comment


      • #4
        The device can not tell if his rate is normal or VF just that it is fast, this alone can be dangerous. To get his rate back down is what the device did. Was it a life saving shock, no. Could his rate have taken off then converted to VF at that rate, maybe.

        I am sorry he was in pain, thankful he has his device to protect him.

        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)

        Comment


        • #5
          Dolly,

          That must have been quite an experience for Andrew (and you too)! I'm sorry to hear that he had to go through that. On the other hand, you can look at the situation positively, since you now know that the device IS working properly. Had Andrew been in v-tach, the ICD would have fired exactly as it was programmed to do. Probably not the sort of 'test' he was looking for, but nonetheless i do hope that it gives you some peace of mind.

          I do have a question however, for you or anyone else who can answer it.

          There are so many reasons why an HCM heart might go into sinus tachycardia... for instance, if i were to eat a huge meal, or a whole lot of chocolate, or allowed myself to get severely dehydrated... my heart would go into tachycardia pretty quickly. An ICD will give you a shock and get your heart back into normal rhythm, but it's obviously not doing anything about the causal mechanism (i.e. being dehydrated). Is that why some folks get shocked a bunch of times in a row? The ICD is putting the heart back into rhythm just like it's supposed to do... but since whatever is causing the disturbance is still there, the heart goes right back into tachycardia and the ICD has to keep firing?

          At any rate, i hope that Andrew's first shock hasn't been too traumatic for him. The ICD is there to allow him more freedom... not make him afraid to do the things he likes. What a great safety net to have!

          Take care, and i hope you enjoy the rest of your holidays,

          Jim
          "Some days you're the dog... some days you're the hydrant."

          Comment


          • #6
            How is Andrew now?

            Dear Dolly,

            How are you now? What the cardiologist said?
            Is his pacemaker working all the time?
            You said he was doing some effort going up the hill?
            I am so sorry Andrew had to go over it.
            I hope he will still find his AICD as a good and secure. I know he is in a hard age and this event is not helping, but I know you have many powers
            Take care!
            Wishes for healh, peace and love!

            Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
            Haifa - Israel.

            Comment


            • #7
              Hi daniela,

              Andrew is doing fine physically. Emotionally he is struggling. He is scared of the ICD firing again, but hopefully that fear will fade with each passing day and he will soon be back not thinking about it much.

              No, his pacemaker is not used all the time.

              Andrew was indeed walking uphill when the ICD fired, however he said his heart had been racing for a couple days prior to that. Walking up the hill must have been just enough to put his heart rate over the limits set in the ICD. He was not being too overly active because he does have a knee injury right now. He has a completely ruptured ACL, crushed cartalidge plate and "possible" torn MCL. (reconstructive knee surgery is being planned.) So........ because of his knee injury he is physically unable to do anything that would be considered "strenuous" activity. (thank goodness!) The leg brace he has does allow him to walk around quite well, but that is about it.
              Dolly~
              mom to Andrew(HCM) 21 years old
              Diagnosed \'95 age 5
              Myectomy \'96 age 6
              ICD implant \'99 age 9
              First ICD shock (X2) \'04
              ICD replacement surgery \'05 age 15

              *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

              Comment


              • #8
                I think this is one more example of how we all need to monitor our heart rates from time to time. The Beta blockers/ calcium channel blockers are supposed to keep the rates lower. For what ever reason our body decides to use more or need more due to changes of metabolic consumption or heart changes that indicate a need for more , it is important to be aware. With regular monitoring we can see the variations that can occur and may indicate a need for intervention with the medical professionals.

                As a nurse when I worked I would monitor my patients heart rates regularly and teach them how to do it . As patients we sometimes get a little lax with this . I would never consider giving heart meds to a patient if I did not believe the heart rate was high enough for the dose, and the opposite is true too. I would have always wanted a plan in place or communication to the doc if a persons heart was racing or showing a regular increase in rate inspite of compliance with their heart meds.

                So this is a heads up to us all . Andrews misfortunate experience can be a wake up call for us all to stay in touch with our vital statistics.

                Educating ourselves about the function of the devises we have is of utmost importance. I for one was aware that my devise will recognize the high rate but not distinquish that the rhythm is not neccesarilly a dangerous one and a shock can result. From the responses here it is evident that not everyone is aware of the full function and limitations of their AICD. It is a lot to wrap the mind around and to understand just what we do not understand. Let us all use this info and experience to learn what we do not know. Ask questions of the EP's, check on line regarding each manufacturer, ask here and any other place where accurate info is dispersed.

                Andrew, I hope you are doing ok and that the memory of these shocks fade quickly for you. I can only imagine what it was like.

                Pam
                Dx @ 47 with HOCM & HF:11/00
                Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                Lead failure,replaced 12/06.
                SF lead recall:07,extracted leads and new device 2012
                [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                Genetic mutation 4/09, mother(d), brother, son, gene+
                Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                Comment


                • #9
                  Dolly, I'm just happy that Andrew is ok. Tell him not to be too afraid and that next time his heart races for a few days he should let you know. Good luck to both of you.

                  Reenie
                  Reenie

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

                  Comment


                  • #10
                    knee surgery!!!???

                    Please tell Andrew I admire him and that I hope and wish him the best!
                    Write to tell how he is doing .
                    Happy New Year!
                    Wishes for healh, peace and love!

                    Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
                    Haifa - Israel.

                    Comment


                    • #11
                      ICD settings

                      Dolly,
                      I have had my ICD for 5 1/2 years now with it going off 6 times. BUT....
                      it has been about 4 years since any shocks.
                      When I was first implanted the doc set the device to only look at heart rate. Because of that, I received the shocks due to my heart speeding up(which it does from time to time usually for no apparent reason and I am told then are sinus tach so not life threatening). At any rate, the device could not tell the difference so I got the shock.

                      Well since then, my EP has been trying to figure out what is going on and through much tweaking of the device, he now has it set to not only look at heart rate but it also looks at how wide/or close the beats are. ( he has shown me the printouts that the device is reading) If I recall correctly, they are supposed to be close together (don't quote me on that as it could be the other way around but I am pretty sure). If I am having a fast rhythm and they are close together the device will just monitor me. As the doc put it "it may not like it but it will just watch and see". As long as it stays that way even if it is fast I will NOT get shocked. Now of course if it goes fast and gets to my set point which is 188 then I get it no matter what, close or far apart. Now of course if I start speeding up and they are the dangerous (far apart) then I get shocked as soon as the device recognizes this.

                      So what am I saying in this long explanation.. I am saying that the device can do more than look at heart rate, but your EP has to set it to do this as mine did. I have had many fast heart rates in the last 4 years and have yet to be shocked since he did this change. I usually just sit down and breath deeply and it goes back down anywhere between 20 seconds to a few minutes. And each episode as long as it is long enough is recorded so when I get interrogated the EP can see what was going on. Luckily I have not hit my 188.

                      I can always tell obviously when my heart speeds up as it is normally between 45-55 BPM. Prior to the change of the settings when it sped up I would panic and prepared for the big kick. Now since I have had quite a few fast rhythms and no shocks I am much more relaxed and just wait for the ole ticker to slow down. I know if I get shocked there is a possibility it saved my life and as unpleasant as it is it is over VERY quickly.

                      Julie in Cincy
                      Diagnosed HCM at 35 after brother died at 38 playing volleyball

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