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Defibulator w/Pace Maker going haywire

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  • Defibulator w/Pace Maker going haywire

    On 2/26, my sister-in-law had a defibulator w/pace maker implanted. The surgery went well and was very happy that she wouldn't have to worry as much (she has a severe case of HOCM).

    On 3/11, her defibulator went off 13 times in a row because her heart was beating 167 bpm. This completely scared the living daylights out of her and rightly so. She was in a public building when it happened. She was rushed to the ER and they did all the normal testing, etc. The defibulator rep made adjustments to the instrument.

    We are curious as to whether others have ever had this same experience initially, and then once it was adjusted was fine? Or was this particular incident a rare case?

    We are aggravated that the doctor didn't have it set right to begin with. They know about her palpitations...they should adjust for that. That is a very common symptom so it isn't something unique to my sister-in-law that they couldn't foresee.

    We'd like any feedback you can give us! Thanks!!!

  • #2
    Re: Defibulator w/Pace Maker going haywire

    When they put my defibrillator with pacemaker in, they initially programmed it in some sort of default way. At my 3 or 6 month interrogation, they changed the programming to deal with my particular set of arrhythmias. It has fired only once in 20 months--and appropriately.

    You would think they could have done better for your sister initially--167 is pretty low for it to fire. I think she should ask for explanations from both her EP and the manufacturer. I hope her device is now programmed properly, she can get over the trauma of having so many shocks, and she can begin to appreciate her ICD as a life-saving rather than a torture device.

    I think her experience is very rare. She has my sympathy.

    Sue

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    • #3
      Re: Defibulator w/Pace Maker going haywire

      I don't know what's going on, but the defibulator went off again on Saturday. It is programmed to go off at 207 bpm. She sat down right away and her husband called 911, but they said she was fine.

      Does anyone have any idea why this is happening to my SIL? She was just to the point of driving short distances again. Now she absolutely refuses to get behind the wheel, hold my 2 year old for fear she may drop her, etc.

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      • #4
        Re: Defibulator w/Pace Maker going haywire

        It sounds to me like maybe she should see the EP who implanted it to find out what is going on. 207 is pretty high. Was her heart really beating that fast? Maybe the ER said that she's fine because the shock restored her heart to normal rhythm? She needs to correlate with the docs.

        Reenie
        Reenie

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

        Comment


        • #5
          Re: Defibulator w/Pace Maker going haywire

          Sometimes the settings do need to be adjusted, what you have explained can happen and does from time to time. One of the reasons we believe in seeking the opinions of HCM specialists is to avoid this type of problem from happening. ALTHOUGH even the best will encounter problems now and again.

          I hope she is feeling better and that things calm down soon.

          Be well,
          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)

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          • #6
            Re: Defibulator w/Pace Maker going haywire

            HI!

            PLease keep us updated how she is doing.
            Any new adjustments?
            Did thay performed any X-Ray (radiology picture)?
            Is she taking any medications, helping and co-working with the AICD?
            Wish you the best!

            Daniela.
            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
              Re: Defibulator w/Pace Maker going haywire

              Hi everyone,

              Cheri visited with her cardiologist Tuesday. She basically told him to fix it or take it out because she'd rather have quality of life than quantity.

              They set new parameters. I'm not exactly sure what all of them are, but I know one is setting it to go off at 210 bpm. They upped her beta blocker to 50 mgs (not sure which one she takes). She mentioned to my husband that the doctor may raise that to 75 mgs at her next visit in 3 weeks.

              She feels a bit better talking to the doctor, but she's still leary of most everything. All of these episodes have really messed her up mentally. It will take time to overcome her fears.

              In the meantime, my husband is reliving his own fears with HOCM and worries about our 2 year old daughter who also has it. I try to be strong for him and not worry about my daughter, but its hard not go hide in a closet and get emotional (but its a great stress reliever ). I'm also patiently waiting for results from the genetic testing Mass General is doing on the family.

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              • #8
                Re: Defibulator w/Pace Maker going haywire

                I'm glad she went to the doctor and they reset the parameters. I hope all goes well now. Try not to worry about your daughter. It's hard, but worry won't help anything.

                On another topic, my friends lived in O'Fallon, IL for a few years until last fall. Are you in MO or IL? Small world, isn't it?

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: Defibulator w/Pace Maker going haywire

                  Thank you for the update.
                  hope for the best now!!!!
                  Also for your daughter!!!!
                  Daniela.
                  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


                  • #10
                    Re: Defibulator w/Pace Maker going haywire

                    Hi Reenie,

                    We live in O'Fallon Missouri.

                    One of the guys I work with lives in O'Fallon IL. He grew up there and is now restoring, with his wife, the house he grew up in. Maybe they know each other.

                    Comment


                    • #11
                      Re: Defibulator w/Pace Maker going haywire

                      My friend's husband was in the Air Force stationed at Scott and their last name is Mater. You can ask if you want. They moved to Germany last fall. I also have a cousin in law who lived in Belleville and now lives in Florrisant. Is that close to you?

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Re: Defibulator w/Pace Maker going haywire

                        Hi Reenie,

                        Florissant is about 20 minutes from my house. I have a ton of family that lives in Florissant.

                        Jennifer[/code]

                        Comment


                        • #13
                          Re: Defibulator w/Pace Maker going haywire

                          Hi Jen, I was implanted with a pacemaker/defibrillator 2 year ago. Three days after my surgery, it went off. Because my "T" waves in my heart beat are as high as my actual heart beat, the defibrillator was counting it as another beat. My heart rate was 90, but the it doubled it and thought it was 180. Since they have adjusted it, I haven't had another incident. By the way, I live in Union Missouri and work in Eureka. If you would like ot call me sometime, pm me and I will send you my phone number and/or email address. GOOD LUCK with everything. I too have a 4-year old son with HCM and several siblings and nieces with the disease. Sometimes it helps just to talk. Let me know.

                          Comment


                          • #14
                            Re: Defibulator w/Pace Maker going haywire

                            If the doctor isn't helping, you should be able to talk to the manufacturer's rep and find out what is up with the device.

                            your sister might want to see what is up on zaplife.org to see how others with inappropriate zaps handle it.

                            take care,

                            s

                            Comment

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