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AICD Shock-your experiences

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  • AICD Shock-your experiences

    I had an AICD placed two weeks ago. As I am driving down the road, I am scared stiff that it is going to fire and send me veering off a cliff. I keep hearing terms like "knock me off my knees" and "send me to the floor". What have your experiences been if your device fired? Thanks Becky

  • #2
    Re: AICD Shock-your experiences

    Hello Becky,

    You sound so much like I did ten years ago when I received my first ICD. I was terrified it was going to go off and had all these awful thoughts. After about a month I didn't even think about it being in my chest, but to be truthful I will still be mildly cautious in certain things I do. As my EP always tells me, it is a part of you and it is there to save your life.

    Mine hadn't fired in years until two months ago while I was in afib/aflutter and then went into vtach while standing in front of the triage window in the emergency room. I fell backwards onto the floor because I have a neuromuscular disease too and am not really stable on my feet sometimes and used some foul language about it hurting, but once it fired I felt sooooo much better. It's that feeling better that I focus on, not the shock otherwise I would just get plain crazy.

    I hope you will over come any worries you have quickly.

    Be well, Janet
    Believe in the goodness of mankind.

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    • #3
      Re: AICD Shock-your experiences

      Hi Becky,

      I have had my ICD for almost two years and have had three shocks. The first one was inappropriate as the lead had come loose but it was quite funny when I look back because I was lying in bed watching the tv with the cat lying on my chest and all I remember was feeling as though I had been kicked by a horse (or what I assume it would feel like!) but the poor cat went flying into the air and onto the floor.

      The second time was about 8 months later and I had been feeling very unwell for two days and knew I was in for trouble but unfortunately I was walking through the second busiest airport in Australia. Lucky for me my boss was with me and she caught me before I hit the floor or I might not have found it easy to get going again. However, I refused to go to the hospital and caught my flight home. The third time was while I was in the shower shampooing my hair but that time I didn't black out, I just felt as thought I was kicked by a small pony this time and once I caught my breath I continued on with my ablutions.

      The only thing I can say is don't spend too much time worrying about when or if it will happen, it may never go off but if it does the best thing is that I always feel so much better after that I feel like its worth it. Its normal to have some anxiety and I go for months without worrying or even remembering I have an ICD until I have a shock and then have a couple of days of wondering when it will happen again but it doesn't last. Just remember it's there for a very good reason and if it goes off it could be saving your life.
      “It's not the load that breaks you down, it's the way you carry it.”

      Septal Myectomy & Mitral Valve replacement Oct 2012
      Dx 09/97
      ICD 26/11/10, redone 10/12/10 (lead failure) and replaced Oct 2012 (failed during myectomy surgery).
      Age 51, two children 29 & 27, both currently clear. Father, aunt, cousin and cousin's son all with HCM. Cousin's son had ICD implanted eight years ago (at age 19).
      **my 11 year old cat was diagnosed with feline HCM at 2 and is still going strong!

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      • #4
        Re: AICD Shock-your experiences

        Hi Becky -- I've had an ICD for a several years, no shock ever. Early on is the hardest, so hang in there! There's an ICD Support Group online that's a big group, and a Facebook ICD User Group as well. Checking in with all of those folks helps. For HCM-ers, it's sometimes different than with people who get an ICD following a heart attack or cardiac arrest. Me, I was prone to wonder if I made the right decision, and since then, I've had a myectomy, and since I'm lower-risk now for SCD, I'm hoping that when this one wears out I'm free of the shock box (and shock fear). You never know what's in the future! Best of luck to you.

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        • #5
          Re: AICD Shock-your experiences

          Its quite normal to be focused on the "what if's" right now. Soon as the scar begins to fade, you'll forget you have the darn thing. If you want to read about peoples experience, you can use the search feature. I will say that just like HCM, no 2 shocks are alike. I have no idea the percentage of shocks vs non shocks, but I'll say its very low, especially if your early in your progression (if any) with the disease. This my opinion and not based on any facts.
          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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          • #6
            Re: AICD Shock-your experiences

            I was sleeping when I heard this strange noise. All I could think of was that "I should know that noise." Then I remember hearing it when my mother died of HCM and her machine went off. I realized I was at a crazy angle in bed and that mine had gone off. My next thought was I hope I can go back to sleep I have to wake up in a couple hours.

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            • #7
              Re: AICD Shock-your experiences

              Thanks everyone. I am slowly getting used to this thing. I work as an RN on a telemetry floor, so I knew just enough to be really freaked out. When I talked to the nurse at the clinic, she told me the parameters for the device to fire. They are super high! If my heart is doing that, I want it to shock me. And I don't think my heart is going to go that nuts anytime soon (fingers crossed).

              Comment


              • #8
                Re: AICD Shock-your experiences

                I've had 7 shocks in one day !
                First 4 taken at home and the other three being on the road in my car. Since than I take Xanax for my anxiety regarding device!
                The shocks i have received there are wrong because the Medtronic Maximo Vr 7232 Cx has an problem with oversensing the atrial impulse an makeing some confusions.
                So , after some research over the internet regarding this device I found this :

                http://europace.oxfordjournals.org/c...ce.eum186.full

                http://www.youtube.com/watch?v=kaN4fIRCPOg

                http://www.youtube.com/watch?v=Wcy0ZT93gE4

                http://www.youtube.com/watch?v=X6yHX...eature=related

                I was freaking out by the first link while i saw this :

                " Major complications that may arise from ICD implantation and malfunction include operative failures. The incidence for inappropriately delivered ICD therapies has been reported to be up to 10–25%. The literature reports an incidence of 1.5–5% for RV lead dislodgement. In this case, the RV lead dislodged resulted in over-sensing of the atrial chamber, suggesting retraction of the lead to the tricuspid annulus or possibly inadvertent displacement to the coronary sinus. This culminated in an inappropriate shock during tachycardia, which would have otherwise been ignored on the basis of cycle length. As a result of the synchronization with an atrial event, the shock fell within the vulnerable period of the T-wave to become pro-arrhythmic and induced VF, which was unable to be reverted."

                So talk with you're EP and ask him about the device parameters.
                Also , there are some issues with the lead. Some leads are fracturing by the years.

                My experience there are very scary for me! I dont drive my car anymore alone ( just with somebody biside me ! I usually take the buss to the work because I've listen some music ore watching to some movies and make anything to relax.My maximum dose of xanax was 3 gram a day . 1 gram a three times a day. Now i take only 0,5 in the morning and 0,5 on sleep . There will be three monts from the event and nothing wrong was happened.

                After the forth shock I was feeling wonderful. My wife was sow scaryed and I asked her a good tea to go on. I was feeling very good after the shoks.
                Second time I was very scaryed because I was alone in traffic and I was driving very fast withouth thincking at anything only Emergency .

                I can now say that is like a horse kick in the chest ! But is better to be only One Shock not seven on a day !

                Also I'm thinking that this device is my 911 Personal Ambulance. If something wrong goes is faster than an Romanian Ambulance Service . Just watch this movie , 8 seconds for a schock :

                http://www.youtube.com/watch?v=DU_i0ZzIV5U



                And he request to continue to play !

                http://www.youtube.com/watch?v=UjZK4HgoY2Q
                Last edited by aygun; 09-30-2012, 03:31 PM.

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