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Access to ICD data is every patient's right

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hugooc Diagnosed with HCM October 2006. Find out more about hugooc
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  • Access to ICD data is every patient's right

    I'm an HCM patient and ICD recipient who's been on a quest for access to the data collected by my the manufacturer of my device via remote monitoring. I recently spoke at a TEDx event in Boston and would like to share the experience with the HCMA community.

    The HCMA has been instrumental in putting me on the correct treatment path. I am grateful to Lisa and to so many others who were greatly supportive when I needed it most. Thank you.

    Hope you enjoy the video.



    Hugo
    --
    HCM patient on a quest for access to the data collected by my implantable electronic cardiac defibrillator. Diagnosed with HCM with obstruction in October 2006, at age 40. Estimated LVOT gradient of 10-23 mmHg at rest, 147 mmHg with exercise. Passionate about connected health. Join me on my quest.

    On TEDx: http://bit.ly/ICDdata
    On Twitter: http://twitter.com/hugooc
    --

  • #2
    Re: Access to ICD data is every patient's right

    Nice video Hugo. Honestly, I haven't ever thought about the data collected by the ICD's. You've given me a lot to think about.
    Reenie

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

    Comment


    • #3
      Re: Access to ICD data is every patient's right

      Very interesting. Thank you for raising my awareness Hugo.
      LJR
      Dx @ 40
      AICD implant Feb 09
      Father passed in 06 sudden death from HCM

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      • #4
        Re: Access to ICD data is every patient's right

        This is very thought provoking, Hugo. Thank you!
        Sister diagnosed with HCM 1987, died April 2012 of "unknown causes" as her family did not want autopsy
        My testing: 1987 and 1988 misdiagnosed with mitral valve prolapse
        Asthma diagnosis 1991
        Nephew diagnosed with HCM 1999
        Previous misdiagnosis "confirmed" 1999
        Cardiac arrest: 10/4/2010
        Induced hypothermic coma 10/4/2010
        ICD implanted 10/13/2010

        Comment


        • #5
          Re: Access to ICD data is every patient's right

          Hugo - We both DX'd about the same time and since then you've done tons of research and empowered yourself (and many others) to be active and engaged in all issues of ICD therapy. Thank you for your tireless help.
          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: Access to ICD data is every patient's right

            Great video! Thanks for posting it.

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            • #7
              Re: Access to ICD data is every patient's right

              Hugo - very well done - Thanks for the great work you do in speaking for the HCM community and spreading the word about HCM. As several have noted in their comments, you bring forth great points that most of us haven't thought about at length.

              Linda

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              • #8
                Re: Access to ICD data is every patient's right

                And he is a talented public speaker.


                Originally posted by Linda View Post
                Hugo - very well done - Thanks for the great work you do in speaking for the HCM community and spreading the word about HCM. As several have noted in their comments, you bring forth great points that most of us haven't thought about at length.

                Linda

                Comment


                • #9
                  Re: Access to ICD data is every patient's right

                  Hugo! Thanks so much for sharing this info. I just had my ICD implanted 2 days ago. This video was very inspiring and I'd like to know how I can help? What questions should I be asking of my EP to make sure I have access to my data?

                  Comment


                  • #10
                    Re: Access to ICD data is every patient's right

                    Excellent presentation! I am a former endurance athlete with an ICD with no meds or restrictions. I stopped competing in 2008 when Mayo said I had HCM and then tooled around for 3 years contemplating the ICD. I got it last year and have been back on my bikes, running, and playing basketball as if nothing ever happened. I track so much of my data- I have always been connected to me the athlete. I was bummed when Mayo and Boston Scientific would not give me full access to the data that is recorded by the device next to my bed that I PAID for as well as the outdated phone line that I otherwise do not need. When I go to Mayo quarterly, they will give me print outs of whatever I want, but I want it when I want it. There is a login to the Boston Scientific site, but it gives access to ALL accounts. It is so easy to setup a login to the individual accounts- so JUST DO IT!

                    @bigbluetodd3
                    Todd
                    .......__o
                    .......\<,
                    ....( )/ ( )
                    BigBlue'sBlog

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                    • #11
                      Re: Access to ICD data is every patient's right

                      Hugo,
                      Thanks for an excellent presentation. I am not an athlete, but I love to run and ride my bike. I always wear a heart rate monitor because my heart rate spikes without what I consider a lot of exertion, and I don't want to set off my device! I also track my pace, and not only do I not improve despite very regular exercise, some days, I am markedly slower. Other than a little shortness of breath, I have no symptoms, meds or restrictions. So I can't understand the variability in my pace, and sometimes I worry about it.

                      It would be so great to have more DATA, because I feel sure I would be able to pick up on patterns. I might not be happy about what I find out (maybe I am just gettin' old), but knowledge is power.

                      I hope you keep fighting the fight - it would benefit us all. If there are things we can do to help, I hope you will post about it.
                      Susan
                      Diagnosed at age 53 in April 2010 (after having been
                      "cleared" several times)
                      Into running & cycling - cleared to continue at mild to
                      moderate level
                      Extensive family history
                      Lost my mom, aunt and nephew to SCD
                      St. Judes "Fortify VR" ICD implanted 8/30/2010 "Ces't Watt"

                      Comment


                      • #12
                        Thank you for the good work, Hugo!

                        It's astounding that patients can't read their ICD data in the Internet of Things age, but I suppose there are HIPPA and security issues complicating things. There must be a way to intercept the remote monitoring transmissions (e.g., Boston Scientific devices come with the Latitude Communicator device, which sends ICD data to the hospital over phone or Ethernet). It shouldn't even be so technically challenging to sniff these packets while they're being sent -- perhaps even doable without Boston Scientific's technical support.
                        Last edited by armstrong; 06-01-2019, 02:31 PM. Reason: Add details about Latitutde Communicator
                        Diagnosed at age 14 with HCM; ICD Implant at age 24 (first shock less than one year later); Take Verapamil (360mg/daily) and Toprol (50mg/daily)

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