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Daniel X Find out more about Daniel X
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  • Do I really need this?

    Just wondering....

    I was implanted with a defibulator when I was 14 years old. When I was 17 I had a myectomy and after that a few months ago my defibulator got recalled so I had to get another one put in. But this is the punch....my defibulator (the first and the second) has never fired. It hasn't done anything for me. Ever. I am now 18 and I was wondering, if it doesn't go off in the next 5 years, do I still need it? How many people get devices and they never need them?

  • #2
    Daniel,
    You ask a very good question and I am going to answer it with a story - actually more of a case study. This is reality and is actually part of Dr. Barry Marons talk... I am going to do this from memory so forgive me if I am slightly off on numbers but it is gonna be close!
    A man had a defib in for about 5 yrs (implanted in 1992)and the battery drained. He asked if it needed to be replaced, he was told yes. It was replaced and about 3 yrs later (in about 1999) the device fired at about 1:30am while he was sleeping and it saved his life. In 2003 his device was replaced again.

    In a different case a 12 yr old was implanted with a device and it was replaced when he was 16 for reasons I do not recall (I do not think there was a problem) then when he was 18 sitting with his friends one night his device fired and saved his life.

    In data that I have seen it can take as long as 15+ years for a device to fire and save someones life.

    Regardless of the current concerns in the ICD world the fact is these are on the average good devices that do save lives. Yes, we all need to work together to fix the problems with the current system...but we can all be grateful that this technology is available!

    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


    • #3
      Thanks for the stories Lisa.

      I can only say that I feel much more secure with my device and it has never fired. However, it has recorded several episodes of non-sustained v-tach which, had they lasted a second or two longer, would have caused the device to discharge.

      It also helps my kids to relax, knowing that I have my "gizmo". That alone it worth having it.

      Peace,

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

      Comment


      • #4
        Even though your ICD may not have fired --yet--, the reasons for having it put in have not vanished. They are still there.

        Medtronic seems to still have very reliable devices.

        The stakes are too high to gamble with.

        Take care,

        S

        Comment


        • #5
          It is your insurance policy for life, peace of mind for those who love you and the best device to save your life. Have it checked regularly and tested yearly to make it will shock you when needed.
          Joe Del

          Diagnosed @ age 45 with HCM June 2004; ICD Implant: September 2004. Fifteen years prior was tested and told had an anxiety attack. Second ICD implanted May 5, 2009 with adding second lead.

          My biggest part is the depression and now on disability.

          Tested positive for HCM gene and all three children are negative.

          Husband and father of three children: Son 18 and two daughters 13 and 7.

          Comment


          • #6
            I’m NOT suggesting that you have it removed; however, let us remember that not everyone with HCM needs to have a defibrillator. The first cardio I saw wanted to immediately implant one in me. After getting 3rd and 4th opinions, I found that he was the only one who wanted to do this. He didn’t even conduct any tests.

            Nick

            Comment


            • #7
              You are correct not everyone needs a device. However if you have been found to have 1 or more risk factors for sudden death then it is something you need to think about. In Daniels case I know he has been evaluated by a specialty center and a local cardiologist so we can be rather sure he needs the device.

              Best to all,
              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


              • #8
                You're right, not everyone with HCM has risk factors that suggest an ICD would be a good idea. However, if someone already has the ICD there was probable cause to get one. Not every doctor will agree 100% on which risk factors (or how many risk factors) a person needs in order to get an ICD. That being said, I would definitely feel better having an ICD if it's been determined that I needed one. My husband has asked this question too, "Do I really need this?" since his ICD hasn't ever fired. But when his battery is drained he'll get another one because it's the right thing for him to do in his circumstance.

                Reenie
                Reenie

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

                Comment


                • #9
                  i got my icd in 12/03 it has never shocked me but i was wondering i get my check every three months when they are checking it does that mean they are checking for its ability
                  to shock me too or is this another test you get done once in a while they are checking the battery's right every three months make things easier what are they checking my icd for every three months?????????????

                  also i have a machine you hook to the phone line but my doctor has never set me up for this i have talk to people that have this they say they use it every three month to check their icd instead of going to doctors then if any problems dr calls them. then if they have a problem they call dr also saves dr visits iam thinking people with hcm don't do things that way may be

                  Comment


                  • #10
                    When you have your ICD checked they are checking for battery life, how much juice it would take to shock you if you needed it, and whether or not it recorded anything the doctor might needto know about like if you've had ventricular tachycardia, and all sorts of other things.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      To clarify a bit ,

                      The battery power( life expectancy) of the overall devise is checked as well as lead voltage reading ( energy being consumed by the leads). The various irregular , benign or potentially fatal heart rhythms recorded over the 3 month period and any therapies discharged by your devise to your heart and you are also recorded. This is also the time that settings can be changed and new therapies programmed. Much of the quarterly exams and interrogation focuses on the pacemaker component.

                      The actual defibrilator and its ability to shock our hearts back into normal sinus rhythm can not be tested except at the yearly interrogations ( we are put under anesthesia) that some of us have and are often referred to as NIPS( non- invasive programmed stimulation) or DFT's. There is no other way to determine if, when called upon, our devise would charge up and deliver an appropriate shock. ( and hopefully not shortcircuit in the process).

                      There is controversey on yearly testing of this nature and some EP's do not do it . Personnally in light of the fact that I have had V-Tach and a recently top of the list recall of a shortcircuiting devise , I am happy with my EP's continued plan.

                      Hope this makes sense.

                      Pam
                      Dx @ 47 with HOCM & HF:11/00
                      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                      Lead failure,replaced 12/06.
                      SF lead recall:07,extracted leads and new device 2012
                      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                      Genetic mutation 4/09, mother(d), brother, son, gene+
                      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                      Comment

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