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  • HCM TNNT2 gene

    Hi, Many members in my family have the TNNT2 gene for HCM. We have had several family members go into cardiac arrest and/or die from this. Both my mother and brother have ICDs. My brother has gone into cardiac arrest 4 times. My sister and I are 40 (fraternal twins) and have had genetic testing done that shows we have the gene, but right now we don't have symptoms. We are terrified of what this gene will do to us and have appointments to see a cardiologist, but am wondering what the likelyhood is of geting ICDs. Realistically, we are terrified since we have seen first hand what this has done to our family. Thoughts?

  • #2
    Re: HCM TNNT2 gene

    While your family's history sounds dire, I want you to slow down a bit and don't jump ahead to any conclusions. We know that a HUGE percentage of cardiologist really aren't that adept at HCM and we know that the best possible care is with someone who's practice is focused around this disease. I suggest, if your not going to a COE (Center of Excellence) then that is where you should start. Yes, it might mean travel, but this is a small price to pay for someone's guidance that can be trusted. Look around this site and you'll see time an again, how our original doctors weren't really capable of treating us! Its a very fickle disease that require someone who is experienced in it. They can work with your local doctors in your care - almost all of us go to a COE and also see a local cardiologist.
    I suggest you order the Hypertrophic Cardiomyopathy book written by Maron and Salberg from Amazon. And after reading it, sharing it with your family. It will help you understand this disease and how unique it is. But until it arrives, do some research, I suggest you look at the COE's listed here: https://www.4hcm.org/wp/hcma-resources/hcm-centers/ and go to their sites and do some research there. Most of the stuff you read on the internet is a bit biased towards the dramatic side. In reality, with proper care and treatment, most of us live a long time! If your family is fairly local, I know most COE's would be interested in researching your family's experience with HCM.
    For more info and to answer any questions you may have, call the HCMA office and see if you can schedule a chat with the author of that book, Lisa Salberg. It'll be the best thing you could do.
    Oh, and to FINALLY answer your ICD question. The doctors look at risk factors - and frankly just one is enough, but sometimes insurance companies require two. Usually a letter pointing out that they could be liable should the unfortunate happen makes them agree. Personally, I think you have more than a couple of factors. Whether or not you want one is a personal choice. Talk to the doctor, ask a ton of questions, get a 2nd opinion if that helps, but the decision is 100% yours. And if you get one, its not a big deal. Kinda like have an EMT around ya, "just in case." You can read other's experience with them in the ICD thread. Good Luck & glad you found us!
    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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    • #3
      Re: HCM TNNT2 gene

      I think Marc has given you good advice. I'd emphasize one point, though: even after you see your cardiologist, it's really a good idea to see a specialist at a COE. Fortunately, there's one at UM. Make an appointment to see Dr. Day there. She has expertise with HCM that even an excellent local cardiologist won't.

      Gordon
      Myectomy on Feb. 5, 2007.

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