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Where do you get Gene testing done?

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Srmartinson Dx in 1996, ICD in 4/2004, Battery recalled, 2nd ICD lead failure 3/31/07, rec. 26 inappro. shocks Find out more about Srmartinson
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  • #1

    Where do you get Gene testing done?

    I have HCM but have never been tested for the gene. I am interested to see if I carry the gene so that I will know to have my two younger daughters tested. Do you see the cardiologist or the electrophysiologist for this? Thank you in advance for your response.
    Dx 1995 with non-obstructed HCM, verapamil 120mg
    2004, ICD, battery recall and migration x2 (3 surgeries)
    2007, 26 inappropriate shocks fr. Lead failure, two lead extraction surgeries...(total 8 surgeries in 4 years NO FUN)
    Since 2008, Living without ICD.......
    2011 First chest pains, frequent Began thinking about new ICD,,,,
    10-2014 I'm ready!
    Tags: None
  • #2
    Re: Where do you get Gene testing done?

    If you follow this link, you will find a description of the testing and links to the two labs that perform the testing. Any doctor can order the test for you.





    http://www.4hcm.org/WCMS/index.php?id=81,0,0,1,0,0
    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.

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    • #3
      Re: Where do you get Gene testing done?

      Thank you for the reply. Why is the testing so much many and does the healthcare pay any of this?
      Dx 1995 with non-obstructed HCM, verapamil 120mg
      2004, ICD, battery recall and migration x2 (3 surgeries)
      2007, 26 inappropriate shocks fr. Lead failure, two lead extraction surgeries...(total 8 surgeries in 4 years NO FUN)
      Since 2008, Living without ICD.......
      2011 First chest pains, frequent Began thinking about new ICD,,,,
      10-2014 I'm ready!

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      • #4
        Re: Where do you get Gene testing done?

        From what we have learned, whether insurance pays for the testing is quite variable. You need to check with your insurance carrier (we find that you need the specific test name, and preferably a procedure code). Even then, be careful. If it is an covered test, then sometimes it needs to go to an approved (in-network lab) AND, if that lab sends it out to another lab, how it is billed matters.

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        • #5
          Re: Where do you get Gene testing done?

          we got a large check to us from the insurance company yesterday, so apparently BCBC is paying for their part.... The check was sent to us though, and not the lab. So now we need to forward it....

          Sandy

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          • #6
            Re: Where do you get Gene testing done?

            I started my testing in October at NEMC. It was explained that if my insurance did not pay, I would be billed approx $800 for my testing. After that it would only be about $75 per child to test them for my marker.
            Diagnosed at age 21
            First ICD 12/07
            Vfib 12/14 With appropriate shock
            Replacement ICD 10/14
            Sub-Pectoral

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