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Drawbacks/complications for ICD's?

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Darren1 My real name is Darren, I have HCM and am a VERY active person that loves to exercise. Find out more about Darren1
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  • Drawbacks/complications for ICD's?

    All,

    I posted earlier that I will likely be getting an ICD. I have spoken with my doctor who was trained at an COE and is quite knowledgeble about HCM. I've asked him these questions, but would like the folks here to give me their input...

    1. What are the potential drawbacks to an ICD?
    2. What complications can an ICD cause?
    3. I don't currently need meds, would that likely change with an ICD?
    4. What are the odds of the ICD shocking when not needed (especially if I am VERY active and run/surf/etc)?
    5. Think the ICD will be able to handle me surfing (laying on my chest and paddling)?

    Thanks!

    -Darren

  • #2
    Re: Drawbacks/complications for ICD's?

    Originally posted by Darren1 View Post
    All,

    I posted earlier that I will likely be getting an ICD. I have spoken with my doctor who was trained at an COE and is quite knowledgeble about HCM. I've asked him these questions, but would like the folks here to give me their input...

    1. What are the potential drawbacks to an ICD? MRI are currently not advisable, occasional hand search at airports and concert/public events. Taking meds before going to the dentist.
    2. What complications can an ICD cause? Possible infection (remote), If they need to add leads in the future, it may mean removing one (remote, but not uncommon)
    3. I don't currently need meds, would that likely change with an ICD? ICD do not affect your meds - Only need to pre-medicate if going to dentist (or other minor surgery)
    4. What are the odds of the ICD shocking when not needed (especially if I am VERY active and run/surf/etc)? It happened to me. My device was set very low as I never recorded any HR higher than 130 (unless afib or VT). All it took was a 1/2 mile run to the subway station to catch the last train of the evening after a 14hr stressful day (as I huffed & puffed and looked at the train leaving the station - it fired). They adjust the device all the time so you'll be able to comment on its rate response and recovery mode to make adjustments.
    5. Think the ICD will be able to handle me surfing (laying on my chest and paddling)? yes. it will be sore for a month, and your restricted from repetitive movements (paddling, swimming) for a while as the wires need to "seat" within the artery. but after that, no problem.

    Thanks!

    -Darren
    See above text for reply
    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 . . .

    Comment


    • #3
      Re: Drawbacks/complications for ICD's?

      Originally posted by Darren1 View Post
      All,

      I posted earlier that I will likely be getting an ICD. I have spoken with my doctor who was trained at an COE and is quite knowledgeble about HCM. I've asked him these questions, but would like the folks here to give me their input...

      1. What are the potential drawbacks to an ICD? You have to have surgery, potentially (hopefully) many replacement surgeries in the future.
      2. What complications can an ICD cause? Other then the surgery, like mbcube stated the leads.
      3. I don't currently need meds, would that likely change with an ICD? Not due to the ICD, your overall treatment for HCM will dictate meds
      4. What are the odds of the ICD shocking when not needed (especially if I am VERY active and run/surf/etc)? I think there is always the risk of an inappropriate shock. With proper programming I think the risk is lower. I am very active and have never received an inappropriate shock
      5. Think the ICD will be able to handle me surfing (laying on my chest and paddling)?After healing it wont be an issue at all.

      Thanks!

      -Darren
      Darren, just to put this out there, the next decision you will have to make is placement. Most ICD's are inserted just under the skin. Another option is Sub-Pectoral, this is placed under your Pectoral muscle. each has its advantages and disadvantages. I went Sub-pec and have been very happy with it. Not all doctors do Sub-Pec placement, so keep that in mind when discussing with your Dr. I am more then happy to share pictures of my scars as well as post procedure pictures if you are interested. Another thing to consider is running. You mentioned that you run, remember having the ICD is like having a small weight in your shirt pocket. I dont know if one placement is better then the other in that case.
      Diagnosed at age 21
      First ICD 12/07
      Vfib 12/14 With appropriate shock
      Replacement ICD 10/14
      Sub-Pectoral

      Comment


      • #4
        Re: Drawbacks/complications for ICD's?

        Thanks. I suspect under my pectoral will be best since I want it to stay put when I run/surf/etc. I also wonder what the probability is of me setting it off when I'm surfing and a large set comes in and boosts my adrenaline. Would pretty much suck to get shocked in the water!

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        • #5
          Re: Drawbacks/complications for ICD's?

          The device can tell the difference between normal rhythm and dangerous rhythms. I get my heart rate up quite high often. Now HCM hearts don't like burst activities, but that's what the ICD is for. To save us from a fatal one.
          Diagnosed at age 21
          First ICD 12/07
          Vfib 12/14 With appropriate shock
          Replacement ICD 10/14
          Sub-Pectoral

          Comment


          • #6
            Re: Drawbacks/complications for ICD's?

            I think with fine adjustments of the device then you should be able to do those activities. My device is set to shock at 190 bpm and with all the meds that I'm taking (beta blocker and CCB) it's almost impossible to get my heart rate up there with physical activities.

            Comment


            • #7
              Re: Drawbacks/complications for ICD's?

              Hi LooNToons - I'm potentially getting an ICD put in and was considering sub-pectoral... I noticed your offer above to share pics of your ICD/scars. I would be very interested to see any pics of the procedure and/or your scars if that is an open offer?

              Thanks!
              Pete

              Comment


              • #8
                Re: Drawbacks/complications for ICD's?

                Peter, 100% open offer! so not to hijack this thread why don't you email me directly. [email protected]

                Seth
                Diagnosed at age 21
                First ICD 12/07
                Vfib 12/14 With appropriate shock
                Replacement ICD 10/14
                Sub-Pectoral

                Comment


                • #9
                  Re: Drawbacks/complications for ICD's?

                  Pete - I do hope they post pics. The decision to go sub is completely personal, and I fully understand. I myself have the standard placement and my surgeon is known to do really clean scars. I had no scar and the "projection" was minimal (this varies - safe to say if your thin, it shows more). You should know that sub-pec are a bit more painful as the healing is longer due to the muscle being cut. I recently have a tune-up and new spark plug installed and requested it be moved a bit. Previously, when I had my arm above my head, the zapper would shift a bit towards the armpit. I had the doctor (a different one), create a new pocket and try to get it deeper. He didn't go sub-pec, but did cut into the muscle a wee bit. It was really sore for weeks. My first one I started a new job four days after implant and had relatively no pain. I had a lot of swelling this time but now that its all healed its perfect - only a bit of projection at the top. The scar is in a different direction - in fact when they shaved my chest I could barely make out the old scar. Now they bisect and it looks like the Star Trek logo! Waiting for the hair to come back. . .
                  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 . . .

                  Comment

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