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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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  • #46
    Re: My primary reason for having an implantable defib. is...

    Lisa and everyone else: This week on Wednesday (10/17/12) I had received an ICD/pacemaker for the first time in St David's Hospital in Austin, Texas. I was due for one for a long time now when I was advised almost a decade ago by Dr. Barry Maron in Minneapolis based on my septal thickness and ventricular atrophy making me fall in high risk category. I weighed out the pros and cons of implanting an ICD until now when I had a sudden death experience. Thanks to a UPS delivery guy who found me on the sidewalk and EMS service and all the support staff at the hospital and my family and friends that I feel grateful to have gotten a second chance to live. My ICD is from Boston Scientific. I was informed that they will check my battery power via phone line. Does anyone have experience in this? Thanks, Kushal
    First symptom of SOB and angina in October of 1997.
    Diagnosed with HCM in December of 1997.
    Been on Metoprolol almost always since then.
    SCA on October 10, 2012.
    Was in ICU for 9 days at St. David's Hospital in downtown Austin.
    Underwent ICD implantation on October 17, 2012 by Dr. Shane Bailey.
    Underwent Septal Myectomy and Mitral Valve repair on December 11, 2014 by Dr. Smedira
    Underwent ICD/Pacemaker upgrade on December 16, 2014 by Dr. Mayuga.

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    • #47
      Re: My primary reason for having an implantable defib. is...

      Hi Kushal,
      I have a Boston Scientific device as well. They "read" it weekly via a transmitter that I have next to my bed. It's hooked to my phone line. I do not have to do anything other than be within a few feet of the device for them to get a reading from it. It's wireless and reads it usually when I am asleep, every Tuesday morning. These reads are sent to Boston Scientific to look over and if they see anything out of the ordinary they contact Mayo. Four times a year Mayo receives a wireless read, with one of those being an in-office check of my device and a print out then as well of the past year. It is very low maintenance for me. Good luck to you.

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      • #48
        Re: ICD

        Don't have one yet. Doc told me last week that I should have one. Waiting for the folks that install it to call and schedule an appointment.

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        • #49
          Re: My primary reason for having an implantable defib. is...

          I had a septal thickness of 3.6 and I had much scarring on the septal wall. Dr. Lever from CC said it could cause an electrical problem which could lead to Sudden Cardiac Arrest. That reason coupled with the fact that my normal HR was in the 40's and only got into the 70's with the stress test (so I needed to be paced). It was only common sense to me to get it done to start feeling better. They could not adjust my meds because of my low HR and they needed to be adjusted to relieve some of my symptoms. I am very glad and grateful to Dr. Lever at CC and am feeling better than I have in years!!
          Diagnosed with HCM--August 2012
          ICD--November 20, 2012

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          • #50
            Re: My primary reason for having an implantable defib. is...

            I had a poor blood pressure response during my last stress test. I also had to wear a 30 day event monitor (that monitored all the time, but only recorded if it detected something that it was programmed to record) and on day 15 (day 14 I begged to stop wearing it) I had more than one run of ventricular tachycardia. I was sent to the emergency room during the night and had an ICD implanted on April Fool's Day 2013. Did you know those little monitors are equipped with to page a sleeping patient. I didn't answer the phone, so they paged my device.

            Carol
            Luke 1:37 For with God nothing shall be impossible!
            ***
            2004 Diagnosed with HCM
            2010 Extended Septal Myectomy, Mayo Clinic with Dr. Dearani on 9/23/10
            2011 5 of 8 children tested and found negative
            2012 Hypothyroidism secondary to Thyroid ablation
            2013 A-Fib
            2013 Inconclusive genetic testing
            2013 April Fool's Day found me getting an ICD!!!
            2013 Second Myectomy with papillary muscle resection and tricuspid valve repair, Mayo Clinic with Dr. Dearani on 10/11/13

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            • #51
              Re: My primary reason for having an implantable defib. is...

              I'm about to get an ICD (Jan. 2014). Your words are reassuring.
              Diagnosed 2007
              ICD implanted 1/7/2014

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              • #52
                Re: My primary reason for having an implantable defib. is...

                It really is no problem, I've had mine now since 2003, and the hardest thing is keeping your arm down, let me know how you are after you have you'res put in
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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                • #53
                  Re: My primary reason for having an implantable defib. is...

                  I started a new job just a few days after implant. No one knew. Yes, keeping it immobile or down while sleeping is an effort!
                  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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                  • #54
                    Re: My primary reason for having an implantable defib. is...

                    I got an ICD because I passed out three times in the past 1 and 1/2 years. This reason isn't listed in the survey.
                    Diagnosed 2007
                    ICD implanted 1/7/2014

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                    • #55
                      Re: My primary reason for having an implantable defib. is...

                      Originally posted by NOR35 View Post
                      I got an ICD because I passed out three times in the past 1 and 1/2 years. This reason isn't listed in the survey.
                      Did you pass out because of arrhythmia? That is why I have one..
                      What activities were you doing when you passed out?
                      ICD implanted June 2010
                      Septal/Apical Myectomy at Mayo, Nov 2012
                      Catheter Ablation at Mayo, September 2013
                      2015: can do most activities/sports again, and thankful to be alive

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                      • #56
                        Re: My primary reason for having an implantable defib. is...

                        Getting my new device on 4/12/15. Got my first device (pacemaker) after myectomy; now with the SVT issues, they are replacing it. Nervous but know that it is what I need to do to stay on track with this disease. Thanks, Lisa, for keeping all of us so informed!

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                        • #57
                          Re: My primary reason for having an implantable defib. is...

                          Been forever since I posted, right before I got my ICD. Multiple reasons, but mainly because I passed out in Petsmart on day. I've had it for 2 1/2 years now and don't regret if for a minute.

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                          • #58
                            Re: My primary reason for having an implantable defib. is...

                            My ICD implant was ordered because my heart was stopping 4-9 seconds at a time (recorded by halter).
                            I had a myectomy in 6/08 and have been feeling great since then, well at least after healing. I passed out briefly a few times and went to a new cardiologist who actually was very familiar with HCM, a rarity in my experience, and he placed the halter immediately. Three days later the ICD implant.
                            I just had the ICD adjusted. They had the resting pace threshold at 74bpm, I could not sleep, adjusted down to 55 which allows my normal rate of 60-64 resting.
                            It's only been two weeks so I'm still healing but now that I can sleep I feel 100% better.

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                            • #59
                              Re: My primary reason for having an implantable defib. is...

                              Got My ICD on July 15 at JH in Baltimore. My surgeon said the my hearth went CHB soon after the first .5ml of alcohol.

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                              • #60
                                Re: My primary reason for having an implantable defib. is...

                                I am 4 weeks post myectomy, not excited about anyone even touching my chest at this point but will be having discussion with surgeon regarding an ICD.Can anyone tell me how uncomfortable is the procedure?, how long is it uncomfortable? And any other particulars regarding your experience. Thanks alto to anyone who answers.
                                Dr. R. Damiano at Washington University in St. Louis did my Myectomy
                                Last edited by nkslocum; 09-12-2015, 01:12 AM.

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