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  • Newly Implanted!!

    Who'd have thought that I would ever get implants!! Ok, AN implant...just one. I got an ICD implanted on April 28th. I was diagnosed with HOCM in Jan. and had a myectomy on March 1st. Just a few days after my 6 week check up I had an episode of heart palps and dizziness. Luckily, I was wearing a heart scan monitor and recorded the rhythm. Long story short, my doc called me and told me that I went into V-tach and I HAD to go to the hospital right away!!! Needless to say, I was NOT happy about the thought of being back in the hospital and going through ANOTHER procedure I did what I was told and went into the hospital on MOn and didn't have the implant done until Thursday! I tried to be as patient as I could be My EP ended up putting me on Sotolol so I had to stay in the hospital over the weekend so I could be monitered. I got out on Mon night and I'm now back home trying to get all of this wrapped around my brain! My pacer is set at 190....not sure how long after that the defib will kick in. People are telling me I should name my new little buddy....I, however, am still in the "I want to rip this sucker out of me" stage. Any info you fellow implantees can offer up would be greatly appreciated! I was telling my buddies on the myectomy forum...hey, now I can write on BOTH! I'm reaching, I know. All of this has happended so fast for me and I'm still kinda pissed off about the whole thing...Can anyone relate to that? I KNOW it's for my safety and all but I just need time to adjust. What's gonna happen if/when it fires? What happens if it malfunctions? I only have 1 lead in, so I'm happy about that. I just needed to vent alittle I guess...Thanks again for listening and for any help you can give Steph
    Had myectomy on March 1 2005 and was implanted w/an ICD on April 28 2005....please refer to me now as the Bionic Woman

  • #2
    Steph--Sorry about your one-two punch. You got more than most. However, don't worry about your ICD. Most of us with HCM don't have a lot of firings of our ICDs. I've had one in my 2 1/2 years with my little pal and I really asked for it by eating and drinking LOTS OF every possible arrhythmic I could (without thinking, of course).

    My ICD is now set to pace me out of VT and has done so several times. I'm not even aware of it but find out on my interrogations. Sometimes I can remember what I was doing on that date and it was a day when I just felt yukky but not terribly aware of my heart. When you go for your interrogation, ask if yours is, or can be, set that way. I don't think mine was set to pace me until, perhaps, after it had fired once but I'm not sure.

    And after about three months you will begin for forget you even have an ICD except for the peace of mind it will give you--unless someone bops you hard on the chest---which again happens very seldom!

    Best wishes, Sue

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    • #3
      I have had my ICD for two years. Actually, I am now on my second ICD, the first one having been recalled recently.

      I have never been shocked, although I also have been documented with short runs of v-tach. The ICD won't shock you unless you have enough beats in a row higher than where the device is set that will trigger it.

      I basically have forgotten that the device is even there. Mine is under the muscle so you don't see it. It doesn't bother me at all.

      You will adjust to it and soon you will be grateful for the protection it offers and you will see that it doesn't hinder your lifestyle. I don't know if you have had many of these episodes of palpitations/lightheadedness before, but I find them much scarier than I do having the device that I know will save my life if need be.

      Good luck. Sorry you have been through so much lately. It will all be better soon.
      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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      • #4
        Hey Steph,

        The ICD bit isn't too much. I know it sucks right now but like everyone says it slowly fades into the background. I've had mine for going on three years now and it hasn't fired once. I've been paced out of v-tach and I'm 100% paced so it is a good piece of equipment for me.


        a lot of people name their icd sparky, or portable ER. But, mine is my borg implant or so my friend says. Because he saw an xray and you could read the serial number on it. so I'm now 1880 of 2000.

        Just keep a good attitude about it


        Mary S.

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        • #5
          Hey Steph.

          Ditto on all that was said above. I have had my "gizmo" for almost 2.5 years. It has caught several bouts of V-tach, a not so good thing in my case. I rarely even think about gizzy sitting just south of my left clavicle. I golf and was hoping that gizzy would help my game, but so far I am just as bad as ever.

          After a while you truly will forget it is there. But when I go out for a walk, when I feel strange palpitations etc. I also feel a sense of security. My friend is there protecting me. And my kids, who lost their birth mom to cancer, love my gizmo! They know that I have extra protection and think it is great.

          I am sorry you have had so much to take in in such a short period of time. But I am very glad you have your "friend" to watch over your heart rhythms.

          Keep venting. It helps. We will keep you in our thoughts and prayers.

          Peace,

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

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