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GaryV Find out more about GaryV
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  • ICD Fire

    I have had my ICD for almost 3 years now, it has fired properly 3 times, and on one occasion it fired 4 consecutive times. The first time kind of freaked me out, I had all the symtoms, the rapid heart rate dizziness and shortness of breath. I was all alone at the time and I was trying to make my way to a door to get some air when all of a sudden It felt like i was kicked in the chest. I was unsure of what happened for a moment but I did notice that I felt fine after that shock. Then I realized that it had fired, I called my Dr. and told him what had happened and he said "congradulations, thats what it's there for". The time it fired 4 times was the absolute worst, it was painful and it turned out that it fired because it was reading double, during the time since I was diagnosed my t waves changed and were twice as long as when the device was implanted. So when my heart rate was actually 150bpm it read 300bpm. That was a bit frustrating but I got over it. after that I went about a year and a half before it fired again this was the only time anyone had witnessed it firing. my brother was right there when out of no where I felt my heart kind of quiver and beat irregularly andf boom it fired. Same as the other times it hurt but this time it didn't really faze me at all, my brother on the other hand was really freaked by it, I told him I was ok and that is what it's there for, that was 8/24/03. On 10/21/03 it fired again, this time I was the one freaked out all the same symptoms but a little worse with the addition of chest pains, I was actually scared this time. It seemed like an eternity before the ICD fired and when it did everything returned to "normal". I am very gratefull that I have the ICD because it has saved my life three times sinced being diagnosed, but at the same time I have become somewhat disturbed by all of this. I don't think that i have really been able to deal with this since the beginig and it is finally getting to me. Anyhow, thats my story and I am sticking to it. I know that there are a lot of details that I have left out but I can't type that much............ Oh yea I was diagnosed in Feb. of 2000, just 3 months after turning 30 and having my first child.

  • #2
    Re: ICD Fire

    Gary, thank goodness you have that ICD. I don't really have any words of wisdom for you to ease the feelings you are having. I'd be surprised if you said you weren't frustrated or frightened or if you said you were dealing with it all "just fine". You'd be trying to fool us all. As a mother of one with HCM, the HCM was hard to deal with and accept, but when we were told an ICD was necessary, I was freaking out. It wasn't even the ICD that was the problem. It was the reality that our child was really serious enough to need such life-saving technology - no more hiding from it. I'm glad you've posted your message because I'm sure it will open the door for many others to offer suggestions for how they cope, talk about their concerns, and let us all know one more time, that others are dealing with some of the same issues. I'm really sorry I can't offer any better words, but I'm thinking of you and wishing you the best. Linda

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    • #3
      Re: ICD Fire

      Mortality is a pretty scary thing for us all. You've been saved three times, which is pretty incredible and quite natural for you to freak about it from time to time. writing about it or talking about it helps. or even not thinking about it --whatever works for you is the path to take. what a gift to have more time.

      take care,

      s

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      • #4
        Re: ICD Fire

        Gary -
        I am so happy that you have that device!!!!!!!!!!!!!!!!!!!!!!!
        I can not believe what an amazing story you have - not only saved once..twice...three...BUT four times.
        Well, that is really something. I am glad you were not alone painting again (that story always gets to me)

        I am glad you are ok and please send my love to your wife!

        Best wishes,
        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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        • #5
          Re: ICD Fire

          Hey neighbor,

          We are just up the mountain from you! I haven't been on this site lately, I have a lot of catching up to do this morning. I don't think I'll get to the 795 posts since my last visit though!!!

          You are a very lucky man and so is your family just as our family is too. My husbands device fired on two occasions. One of those times it took 3 shocks and the other took two to return to a normal rhythm. Your first time reminded me of Roys first experience. He felt a fast heartrate and dizziness then tried to make it to the couch when the shock was delivered. Roy didn't realize it was the ICD. He turned around to see who came into our home and hit him with a 2 x 4 and was confused to see no one behind him then it fired again. I got to him just before the third shock was being fired as he fell into a chair. For Roy the shocks were very painful. I hear it varies greatly from person to person.

          The second time came out of the blue...no symptoms. He just pulled off the highway and parked the car. While he and our daughter walked to the ballfield it fired twice. That was a bit more frightening because there was no warning, no symptoms, nothing. We figured it was an inappropriate firing, but quickly found out that it was v tach and was very appropriate.

          I can relate to you and your brother being freaked out. Our oldest daughter was with us when it happened the first time. It was hard for Jamie especially when he began losing consciousness. She also has a device after going down in the gym last year so I'm sure she was frightened for herself as well. It was difficult for our other daughter the second time. I wasn't even around to help.

          It took me a good deal of time to feel comfortable again. I didn't want him out of my sight!! lol. Most importantly, Roy is more comfortable in his own skin again. While it's hard on family members it doesn't compare to what you guys go through. HCM is difficult to deal with, I agree with you. This website is a great place for support and information. What doctors do you use in the area?

          Take care Gary.

          Karen

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          • #6
            Re: ICD Fire

            WOOOOWWWW!!!
            I have no words!
            There is no research about the psychological influence of the AICD - but
            I guess the fact that you survived - means you had a gift and it means all!!!
            I heard many people give the device a name - Did you also?
            I think it is your best friend!
            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.

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            • #7
              Re: ICD Fire

              Gary:

              I can relate to your story. My husband is 35, has only had his device for 6 weeks and it fired 3 times one night a few weeks ago. He is very freaked out. Was OK with the first shock, but startled. Then the second two came the same night and we went to the hospital. He's physically OK, but mentally a little shock-shy. I know he worries constantly about when it will zap him next and whether it'll happen at work or a public place. I saw the second and third zaps and was actually touching him for one. Didn't hurt, but freaked me out a little too. He obviously needs the device, but I don't want him to worry about it. Have you talked to anyone? I think he and I may go see a therapist, but I'd rather talk to someone who understands what it is like. I only found one ICD support group in our area, and they only meet quarterly.

              Lena

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              • #8
                Re: ICD Fire

                lena,

                Hi, I can totally relate with your husbands anxieties about when and where it will fire next. My ICD has fired a total of 7 times none of which were fun. I have been seeing a therapist for 4 years now and even though she is not an expert on this she really has helped me. Also for a period of time I saw a psychiatrist I take an antidepressant as well as an anti anxiety pill as needed. Both of them have helped me trmendously. I always had a problem with the where and when but I don't anymore. It will fire when needed and then everything is fine. It is a life saving device and I am happy to have it. I was in Mexico this past winter and it fired twice in one week. I was upset that it fired but I didn't let it get to me. I am at the point where it doesn't really bother me. I take time and think about what had happened and went on about my business. I don't know what kind or if any meds your husband is on but they do work. I really suggest seeing some kind of therapist just so he can talk about his feelings and fears. You might want to think about seeing one yourself to help you through this troueling time. If you have any questions please feel fre to contact me.

                Gary

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                • #9
                  Re: ICD Fire



                  Thanks, Gary. Good luck with everything.

                  -Lena

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                  • #10
                    Re: ICD Fire

                    Bless all of you!
                    Jen

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