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My primary reason for having an implantable defib. is...

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Lisa Salberg Find out more about Lisa Salberg
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  • #16
    Re: My primary reason for having an implantable defib. is...

    Kimberly, Best wishes and please keep us posted. Linda

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    • #17
      Re: My primary reason for having an implantable defib. is...

      HCM specialist at the MHI, thought it might be good safety measure for me, and gave me a piece of mind. My local cardiologists concurred. I am setting up an appointment to get my implant

      Comment


      • #18
        Re: My primary reason for having an implantable defib. is...

        Oh let me count the ways!!! I am a unique individual with a unique case of HOCM. My septum gorws and grows and gorws and when I get it ablated it grows again. I also suffer from sustained arrythmia. Hard to believe that I could ever be a Marine at one time.

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        • #19
          Re: My primary reason for having an implantable defib. is...

          i got my ICD because of the septal measurment of 3.0 or higher.

          Steven

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          • #20
            Re: My primary reason for having an implantable defib. is...

            Hello to everyone
            My Septal measurement is 3.0 and I am about to go into NEMC (Tufts) on Tuesday to find out exactly when this will take place. I'm a bit confused reagarding Difibrillator's and their reasons for being.
            My family history is frighting to say the least.
            For the most part I've been feeling pretty good, with the occasional dizzy spell and being tired. They "upped" my dosage of Atenenol to 25mg (after trying Verapamil) and I have felt okay since.
            We'll see Tuesday what my future holds.
            Marlene

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            • #21
              Re: My primary reason for having an implantable defib. is...

              HI Marlene. I have a PCD. The device is designed for two functions (as most are these days).
              1. If and when my heart enters a dangerously irregular rhythm, stops etc. my device recognizes it and gives me a jolt that corrects that rhythm. It is like the big paddles you see on ER and other hospital shows when they yell clear and shock the patient, only it is all inside.
              2. The next function is the pacer. Should my heart go dangerously slow my pace maker would kick in and bring me back up to a normal pulse rate. The pacer is also one of the ways the device attempts to address dangerous rhythms.

              I feel so fortunate to be able to carry such a device around within me. The odds of me seeing my kids grow up are so much better now than they were. The drawbacks are so minimal that I find it hard to name one. The surgery was not that difficult. I had very minimal pain (couple of days) and was back in the office in a week.

              My father would probably have lived to see me get married and meet my children had he had such a device.

              Hopefully your fears will be laid to rest and you will have a good experience at the hospital.

              Peace,

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

              Comment


              • #22
                Re: My primary reason for having an implantable defib. is...

                Hi Marlene. You may already know this but I thought I would post the 5 major risk factors again.

                1. septum at > 3 cm
                2. history of ventricular tachycardia
                3. history of fainting
                4. history of blood pressure failing to rise normally during stress test
                5. family history of sudden cardiac death beore about age 50

                Reenie
                Reenie

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

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                • #23
                  I ended up getting one because my mom had gone into cardiac arrest and her ICD saved her life, and my Cardiologist found some irregular beats on a 24 hour Holter Monitor. I'm VERY thankful I have one of these -- it's my "Cool Metal Box"

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                  • #24
                    I have episodes of V-Tac which cause me to pass out...thats why ive got mine...
                    ~Wendy~
                    Wife to Robert
                    Mom to Sara (almost 16mths)


                    Hypotrophic Cardiomyopathy with ICD placement

                    Comment


                    • #25
                      If you have an ICD and have not participated in this survey - please take moment to do so now.

                      Thanks!
                      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)

                      Comment


                      • #26
                        I experienced sudden cardiac arrest 7 years ago. That's when I got my first defibrillator.

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                        • #27
                          Re: My primary reason for having an implantable defib. is...

                          I got one because I passed out and I have a >3 cm septum. I am still skeptical though, because as you say it will not alleviate symptoms, so I could pass out again. I woke up by myself, so I doubt that the defibrillator will be needed. My cardiologist's selling points were that the data it collects will give him a good indication of what is happening to me, plus it might save my life. That said, I am a worrier who worries about foreign objects in his body. However, he is a cardiologist and I didn't even stay in a Holiday Inn last night. But I am still uneasy about it.
                          First major HCM symptoms at age 50
                          ICD 6/06

                          Comment


                          • #28
                            Re: My primary reason for having an implantable defib. is...

                            Hi all, I have had spetal reducation about 2.5 yeras ago (Mayo) and the life have been much better. However, Cardialogist in my town is recommending IDE for recent arythmya activity. I am very hesitant and going to Mayo again to see if it is realy needed. Reading about IDE I am not convinced if it is useful in my case.

                            Behrang

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                            • #29
                              Re: My primary reason for having an implantable defib. is...

                              Ask your doctor the 3 important questions -
                              What is the diaganosis?
                              What are my options??
                              Why is it important???

                              We Know you have HCM and that is the diagnosis for your condition as a whole but what is the diagnosis in terms of rythm issues? What are your "risk factors" for sudden death? This is the diagnosis I am talking about. You always have options - ICD, medication or even no treatment - no treatment is an treatment option as odd as that sounds. Have the doctor explain why he/she thinks this is important to you.
                              I will be talking more about the 3 questions in coming days.

                              Take care,
                              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)

                              Comment


                              • #30
                                Re: My primary reason for having an implantable defib. is...

                                I honestly don't know why I have my ICD unit - a few days after my myectomy, my cardiologist came in to see me and said they were going to implant the dual unit as a 'safeguard'.
                                ~Neenee~
                                Diagnosed in 2000 at age 47 with IHSS/HOCM. Father died at age 42 in 1975, official diagnosis cardial infarction
                                Feb. 20, 2007 - Septal Myectomy & Mitral Valve repair Feb. 24th 2007- dual pacemaker/ICD implant.
                                Jan. 21, 2009 - surgery to replace fractured lead ( Guidant)
                                Jan. 27, 2009 - inappropriate shock from defib. back into hosp. for another lead replacement ( St. Jude).

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