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No ICD for me

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Daisy Find out more about Daisy
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  • No ICD for me

    Hello,

    I traveled from Florida over the holidays to meet with Dr. Lever again. I was there all Christmas Eve. I waited over two hours one time and then almost three the second time for him to come in the examination room. He is a busy man. He agreed with me that an ICD might not be needed at this time. The only reason that the doctors in Florida wanted me to have one was that my mom died suddenly. We assume from HCM since I have it.

    I can now tell the doctors in Florida to stop pressuring me.

  • #2
    Re: No ICD for me

    Wow I'm amazed Doctors in Florida pressuring anything? Sorry about that bad experiences down here in the sunshine state!

    I am very happy that you may not need the ICD. I have one after my doctors in Florida told me there was nothing wrong with me when I had 4 of the risk factors for sudden death. OH well, everyone makes mistakes right?

    Mary S.

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    • #3
      Re: No ICD for me

      I am glad to hear you had a second opinion and that you feel comfortable with your choice.

      Send some sunshine - up north if you dont mind - we could use it.

      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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      • #4
        Re: No ICD for me

        Sending lots of warm thoughts your way!

        Mary

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        • #5
          Re: No ICD for me

          let me get this straight, you had indicators of sudden death syndrome, and yet you still didn't have the ICD implanted?

          i'm somewhat jealous. i had NO choice but the put the thing in, and there are NO indicators of sudden death. Yes, my mom died, (same condition) very young, but it was determined to be kidney failure. the doctors all but bullied me into having the device put in.

          on top of that, i had to quit sparring in kenpo because of it. my life, came to a complete stop. well, good for you if got out of it. good luck.

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          • #6
            Re: No ICD for me

            My situation is pretty much similar to yours, I wonder why I HAD to have one put in "immediately"?
            Always and forever, all I do is for you MOM!
            Vicky Keller
            1955-1999

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            • #7
              Re: No ICD for me

              amber -

              well, i had mine put in at barnes-jewish in st. loius; i had built a certain repor with my doctor and he mentioned it as a possibility for future treatment. however, the doctor changed his mind and all but mandated i get it put in...regardless of no occurence of 'sudden-death' in my family history.

              of course i had the ultimate say... but what are going to do; once you discuss it with your family, they're all for it. so i did it. haven't been the same since. feeling that thing pacing me in the middle of the night is scary. made me think i was going to die. mine device paces and delivers the shock if need be.

              hard to get used to, but do i really have a choice?

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              • #8
                Re: No ICD for me

                My look on the whole to ICD or not. I feel an ICD is a great thing. The risk factors are not 100%(but are great indicators). You could have all six and it never fire or you could have none and SCD could occur. Unfortunatly, it is not down to a specific yet. In my case I had 3 so I was strongly recommened for one.

                I've had mine for over a year now and it has done absolutly nothing. I'm not dissapointed in anyway. I had much rather have one the one time I needed than to not have it that one time. If your ICD is pacing you apparently it is there for good reason.

                As far as it interfering with my life I did have to put on hold my volunteer EMS job because state law did not allow me to drive for six months. As far as Disney is concerned I'm never allowed to drive a company car and I don't know how that part will affect me if I decide to go and be an EMT full-time. So yeah you gain some you lose some. But what is more improtant? A past-time or your life?

                Mary S.

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                • #9
                  Re: No ICD for me

                  if you really don't need the pacing, they can turn that off and should if there isn't a good reason for it. i would look into that.

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                  • #10
                    Re: No ICD for me

                    The only thing I can say is that everyones situation is different. I had all the signs of sudden death and nobody in my family has ever died a sudden death. I had mine implanted almost 4 years ago and it has fired correctly 7 times. I am very happy that I have it. I wish you the best of luck.

                    Gary Valentino

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