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Joanne Find out more about Joanne
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  • I need some medical information

    My son Craig, age 20, died three years ago from what they told us at the time was HCM. Four or five days before he died he had quite strong palpitations for over two days. He was not living at home at the time and we were communicating only through emails. We had no family history of young family members dying so we just assumed his palpitations were caused from too much caffeine or something that wasn't too serious so we were not worried. Craig did not go to the ER before his death. Anyway, last week his older brother Robert had palpitations for a few hours and went to the ER. The palpitations stopped on their own. He had the usual tests, EKG, Echo, blood tests. With the echo they found that his left ventricle was slightly enlarged. The doctor said that the enlargement was so slight that if it wasn't for his brother dying he would not even mention it.

    Of course with this happening I started researching more through Craig's autopsy and through Lisa's book on Hypertrophic Cardiomyopathy. Craig's autopsy says he had "Cardiomegaly (460 grams) with concentric left ventricular hypertrophy." It says "The left ventricle appears thickened and measures 2.2 cm in thickness." In the final comment of the autopsy it says "The only significant finding in this examination is mild cardiomegaly with a hypertrophic left ventricle." On page 11 in the book "Hypertrophic Cardiomyopathy" it says that "The term "concentric" means that all portions of the wall are of about the same thickness; this form of hypertrophy is uncommon, and when strictly defined, is present in only about 2% of HCM patients.... On page 29 of this book it has a chart showing the degrees of hypertrophy with 30 mm thickness giving the highest percentage of death at 16.3% and 15 mm giving the lowest percentage.

    Hopefully I haven't lost everybody here. My question is: Is it possible that my son Craig died from the effects of arrythmia instead of the effects of HCM since the enlargement was not that great? Craig was very athletic and we are wondering if this may be why his heart was enlarged. Besides my son Robert being diagnosed with slight hypertrophy since Craig died the boys' father also had arrythmia two years ago and was found to have mild hypertrophy. His echo says "There appears to be mild concentric left ventricular hypertrophy."

    I have spoken with cardiologists in my area trying to get answers to my questions but the cardiologists here are not that well equipped to explain anything to me. If there is an HCM cardiologist out there who has an answer for me I would appreciate hearing from him. Thank you. Joanne

  • #2
    technically...

    Dear Joanne,

    I'm very sorry for you loss.

    First, let me clarify. When someone dies suddenly from HCM, it is because the HCM has caused the heart to go into an arrhythmia (ventricular tachycardia, most likely) that can't sustain life. So it isn't the arrhythmia instead of, but because of. It is the irregular cell structure of the heart that makes it easier to go into an arrhythmia and the thicker the heart, the worse it gets.

    The best thing you can do is to call Lisa RIGHT NOW at 973-983-7429 (I think she is in the office on Thursdays) and get your other son hooked up with an HCM specialist.

    His situation is too complicated and too important to be dealt with properly on the board. There are no easy answers, however, a specialist is imperative due to the family history.

    Both your husband and son need to be evaluated by a specialist --particulary with an eye to determining if they would benefit from an implantable cardioverter defibrillator (ICD).

    Keep us posted!

    S

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    • #3
      Joanne,

      You are asking some good questions here. I think, although I'm not sure, that if Craig's hypertrophy measured 2.2cm then that would mean it's HCM and not "athlete's heart." Please do a search on this site to read more about athlete's heart. If your husband and other son also have some hypertrophy, that adds more to the genetic HCM case also. You asked about arrhythmias that could've caused Craig's death. Here's the short answer, yes. Many if not most people with HCM have arrhythmia problems. It can range from mild palpitations to ventricular fibrillation, or v-fib. Usually v-fib causes sudden cardiac death.

      Palpitations are mostly harmless, if that's what they really are. But if Robert hasn't had them before he's never felt them and can't be sure what he's actually feeling. I would suggest he see a cardiologist and perhaps get a holter monitor. It's an EKG that runs for 24 hours. They can evaluate that to see just what type of arrhythmias he's having. With Craig's sudden death at such a young age, I would be concerned about Robert's risk of sudden death too. I'm not saying to get in a panic!

      There are ways to prevent sudden death. A HCM specialist can evaluate both your husband and your son for any risk factors he might feel are indicative of problems. Many people who are at high risk get ICD's (implanted cardiodefibrillators.) The risk factors include:

      1) septal thickness above 3 cm
      2) history of fainting or nearly fainting
      3) family history of sudden death
      4) personal history of arrhythmias

      There is one more risk factor, but my mind is mush right now. I suggest you get both your son and your husband to a specialist so that you really know what you're dealing with. I think it would be best medically and to give you peace of mind.

      Reenie
      Reenie

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

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      • #4
        A specialist is in order.
        HCM and arrhthmia's are connected - I am highly concerned for your son. He needs to be seen by someone who understands the entire disease - -it does sound like he has HCM to me.
        Call me -
        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

        Comment


        • #5
          Joanne,

          I am very sorry to hear of the loss of your son, Craig. I do hope that you get the information you need for Robert and his father, so that they can manage their health accordingly. This board is certainly a good place to start, and the folks here should be able to put you in touch with some good specialists.

          Take care,

          Jim
          "Some days you're the dog... some days you're the hydrant."

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