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Hadrianswall I am married with three children (5,10 and 13). I am working part time having had an extended career break to be a full time mother. I was diagnosed with HCM just before Christmas (2012) following screening which had been rather overdue. My father died of SCD at 54 from his HCM in 1984. I have just found out that my grandmother(his mother) died at age 48 from HCM related SCD too. Find out more about Hadrianswall
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  • ICD wait

    Hi. I'm a 43 year old mother of three diagnosed with HCM four months ago. I have just completed my risk assessment tests and have been advised to get an ICD fitted as I have a family history of SCD, scarring found on MRI and my blood pressure dropped on the treadmill test. I have also been suffering some sort of arrhythmia but that wasn't recorded on the 24 hour tape. I live in the UK and I have been put on a waiting list to have the ICD fitted, either with sedation or general anaesthetic but thankfully there are no issues around health insurance thanks to our National Health Service. I'm not sure how long the wait will be but it could be several months or longer.
    I have several questions for those of you who have experience of ICDs. What is the experience of patients with general anaesthetic as opposed to sedation? Also, is it common to feel far more anxious about the possibility of SCD once you know you are in the high risk group? ( I have even contemplated hiring an external defibrillator). I keep reminding myself that the ICD is my life insurance policy and my doctor was reassuring telling me that hopefully it will never need to fire. Also, I have been advised not to drive for a month after the operation ( no previous cardiac arrest) but am not sure how I will feel driving my kids about- and live in a rural area without much public transport. Thank you for your thoughts....

  • #2
    Re: ICD wait

    I don't think the beta blocker would make your blood pressure drop during exercise. I think you should discuss with your doctor what he/she thinks about the wait and if you should be moved up the list due to risk. Regarding sedation versus general anesthesia, my husband has only had general anesthesia. If others here have had sedation they can speak up. And yes, it would be normal to feel more anxious once you know you're in the high risk group. I can't imagine not being anxious at that point. Once your have your ICD fitted you'll feel much better. As far as driving shortly after ICD implant goes, you will need time for the leads to set in. You shouldn't be doing much with your left arm, including lifting it over your head, for a time. Things will get more normal once the ICD is in and you've gotten used to it.
    Reenie

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

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    • #3
      Re: ICD wait

      Hello, I believe the anesthesia used varies with the doctor's preference, but why not ask about it? If you would prefer a local anesthetic with some "happy gas," it's certainly okay to ask about it. I had the general anesthesia, but only because I didn't ask about it, and the general was hard on me --I HATE the "coming out of it" part, so I will be sure to specify no general for a replacement. But some people prefer to be *completely* out, so everyone's different!

      In the U.S., the standard recommendation is not to drive for 7 days after an implant, not a month (which seems excessive to me, but if it's the law in the UK, you might be stuck).

      I was the opposite of you -- I actually procrastinated after the recommendation for an ICD -- but I'm sure your reaction is more normal! Good luck and hang in there!

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      • #4
        Re: ICD wait

        It is a minimum one month driving ban in the UK:

        IMPLANTABLE CARDIOVERTER DEFIBRILLATOR (ICD) implanted for sustained ventricular arrhythmia which did not cause incapacity
        If the patient presents with a non- disqualifying cardiac event, i.e. haemodynamically stable non- incapacitating sustained ventricular tachycardia, the patient can drive 1/12 after ICD implantation providing all of the following conditions are met:

        - LVEF > than 35%
        - No fast VT induced on electrophysiological study (RR< 250 msec)
        - Any induced VT could be pace-terminated by the ICD twice, without acceleration, during the post implantation study.

        DVLA need not be notified.

        ...

        PROPHYLACTIC ICD IMPLANT
        Asymptomatic individuals with high risk of significant arrhythmia. Driving should cease for 1/12.
        DVLA need not be notified.
        Should the ICD subsequently deliver ATP and/or shock therapy (except during normal clinical testing) then the licensing criteria on the previous page applies and DVLA should be notified.

        ...


        Rest of this document is at http://www.dft.gov.uk/dvla/medical/~..._a_glance.ashx - worth reading the whole of pages 22 and 23
        Last edited by orangeorchid; 04-15-2013, 04:50 PM. Reason: Edited to add more of the referenced document for clarity

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        • #5
          Re: ICD wait

          The anesthesia is usually up to the doctor. You can have input. Frankly, I was "lightly sedated" (I seriously believe my doctor is a sadist) and fully support being completely out. They do test the device so you definitely want to be out for that part!
          Marc
          Diagnosed @ 48
          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
          AICD - Valentines Day '08, Spark Plug replaced 11/14
          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
          Quietly going insane . . .

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          • #6
            Re: ICD wait

            I am not sure that the law that Orange Orchid quoted above applies to you. That law applies to people who have had a sustained event of ventricular tachycardia. Not to a person who is getting a device prophylactically. I personally have had a device for over 10 years, and only waited the one week period before driving again each time I have had a new device implanted (which is now 3 times). Also, my device has never fired, so I have it only as an insurance policy.
            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.

            Comment


            • #7
              Re: ICD wait

              Sorry, I meant the page (23) that starts with these words. The one month ban for someone getting a device prophylactically is further down the same page.

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              • #8
                Re: ICD wait

                Thanks everyone. I have found out it'll be a month off driving for me in the UK as I have not had VT. And hooray- I am going in for my ICD insertion next Tuesday! That will've been quite a short wait for me so very lucky.

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                • #9
                  Re: ICD wait

                  Wishing you the best - will be watching for updates - Linda

                  Comment


                  • #10
                    Re: ICD wait

                    That's great! You won't regret it.

                    Gordon
                    Myectomy on Feb. 5, 2007.

                    Comment


                    • #11
                      Re: ICD wait

                      Originally posted by Hadrianswall View Post
                      I am going in for my ICD insertion next Tuesday! That will've been quite a short wait for me so very lucky.
                      So glad to hear that you will be getting your ICD so quickly. The wait must seem excruciating, but you've made it this far (43 years)... there is no reason to believe something will happen in the next week or so!
                      "Some days you're the dog... some days you're the hydrant."

                      Comment


                      • #12
                        Re: ICD wait

                        Originally posted by gfox42 View Post
                        That's great! You won't regret it.

                        Gordon
                        Hi there everyone. Well, I'm pleased to report I got my ICD ( Boston Scientific INCEPTA) implanted a week ago. I had the procedure under sedation ( diazepam) and it went really well. Was a little sore afterwards but nothing too bad and am trying not to raise my arm and use it too much. I feel much safer now, though a little scared of inappropriate shocks and the pacemaker function feels a bit like palpitations when pacing me to 60 bpm.

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                        • #13
                          Re: ICD wait

                          I'm glad it's going well. Hopefully you'll get accustomed to your new friend quickly.

                          Gordon
                          Myectomy on Feb. 5, 2007.

                          Comment

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