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  • checking my kids for HCM - need advice

    Ok this is a tough one. A bit of background. I am a 50 ish professional. 3 years ago a sort-of-abnormal borderline EKG lead to an ECHO and the dx of HCM. Recent normal stress test. No symptoms except for perhaps a few ectopics now and then (and I can't drink EtOH now >> ectopics and horrible murmur, hate not having a beer...). I take ramipril for mild HiBP (I know, I know it may not be the right drug but it does wonders for my BP and cardiologist is happy with it as long as I am assymptomatic). I am otherwise in great health with no physical restrictions: I can exercise and am in pretty good shape. 2 of my 3 adult sibs have had negative ECHOs, one hasn't had it done yet. Mom and Dad had normal ECHOs late in life. No sudden death in my family and no hx of HCM, go figure.

    I have 3 kids ages 16-23. I am divorced and Ex-wife is adamantly against telling them about my condition and subsequently having them screened for HCM. Thinks it will cripple them with worry and sees that there is no treatment for them that would alter their outcomes.

    I want to tell the kids so 1) if I have a sudden death, they feel as if I've been open and honest with them and 2) I think (but I'm not sure) that a diagnosis might lead to prevention of problems in them. Comments and suggestions are appreciated.
    David in Indianapolis

  • #2
    Re: checking my kids for HCM - need advice

    David, your ex shouldn't keep this from your kids. And remember, these kids aren't 5 & 6 years old. They're YOUR kids too. They should know what's going on. They may have HCM themselves. If they do, wouldn't you rather them be diagnosed and have proper medical care instead of playing the waiting game? Just my two cents worth.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: checking my kids for HCM - need advice

      It's not true that there is nothing that can be done if your kids were diagnosed. If they had arrythmias or other risk factors for sudden death, they could get an ICD, which prevents sudden cardiac death.

      There are plenty of treatments. Closing your eyes and pretending that its not there doesn't make it go away. I would put my foot down if I were you.

      I have already screened my 2 year old twice....once in utero and once at one year.
      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.

      Comment


      • #4
        Re: checking my kids for HCM - need advice

        first of all, make sure you buy them all the life and health insurance you can and THEN sit them down for a talk. if you had cancer or a family history of diabetes or MS or other things, you would tell them, right?

        a. they have a right to know their family medical history
        b. their kids might have it, too, when they have them
        c. there is treatment and yours sounds very livable, too, so what would be the harm in letting them know they should get echos from time to time to make sure that they don't need any medication. but that if they did need something to help their heart work better, they could get it?

        never lie to your kids. they'll hate your for it.

        good luck,

        sarah

        Comment


        • #5
          Re: checking my kids for HCM - need advice

          Originally posted by Sarah
          never lie to your kids. they'll hate your for it.
          Wow Sarah. Very profound.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: checking my kids for HCM - need advice

            Children are very funny people. My daughter has known since she could understand that I have HCM, we have always been open, and she has been screened since she was in my stomach. As some will know from mine and her post, my daughter was diagnosed in May of 2003 at the age of 12, she had a hard time at first dealing with it, mostly because she couldn't do her favorite sport of tug of war, but with the help of reading the posts on this message board and the kind people in this message board, she is doing much better. She does have her days that she hates having the disease and wonders why, but after a few tears, and a talk with me she is ok. Your kids need to know. What if they have it and collapse at school? What if something happened to them, how would you or your wife feel? Good luck.
            Life is too short to worry about the trival things in life, So live life to the fullest.

            Comment


            • #7
              Re: checking my kids for HCM - need advice

              David,

              I have to caution you and your cardiologist not to be too cavalier about taking an ACE inhibitor. OK, you feel pretty asymptomatic right now, but so did I three or four years ago (although part of that was denial I must admit). At that time I had not been diagnosed with HCM, so the doc put me on verapamil. I cannot say for sure that that accelerated my developing relatively severe symptoms, but I think even my GP thinks so now. You should have seen the speed at which he forbade me to ever take an ACE inhibitor again when he saw what was happening. So, why risk it? There are lots of meds for HiBP that are not going to raise the possibility of increasing symptoms, so why risk it?

              I would like to comment that I think it is extremely admirable that you are willing to consider your ex's wishes with regard to your children. However, I also agree with the others who have posted here that they deserve to know. I recommend that you tell your ex that you really need her to cooperate with you because you really want there to be unity between you in dealing with your kids. BUT also tell her that you have to tell them or you risk bearing the guilt for both of you, if something happens. In other words ask her to cooperate with your telling them instead of her asking you to cooperate with not telling them. I don't knoe whether this will work, but maybe it is worth a try,.

              Rhoda

              Comment


              • #8
                Re: checking my kids for HCM - need advice

                rhoda

                verapamil is a calcium channel blocker, even though it has that "il" ending most ace-inhibitors have (aces are usually "pril" or "ril" endings).

                verapamil made my bp tank like nobody's business.

                they also tried to give me an ace-inhibitor but it made me cough all the time so we stopped.

                most of the time, if a drug isn't going to help, it will do so right away. however, it is possible to take something (eg lanoxin/digitalis) that may not make you feel much different but your heart may be beating too hard and that does long term damage. really hard thing to call.

                s

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                • #9
                  Re: checking my kids for HCM - need advice

                  Just my little imput here.

                  Remember we are all different! I know especially me. What may work for one may be harmful to another. Traditionaly ace- inhibitors and nitrates are contraindicated for most HCMers. But there are some of us who actually do quite well on them.

                  This is where go see a specialist really comes into play.


                  Mary S.

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                  • #10
                    Re: checking my kids for HCM - need advice

                    Oops, sorry! I typed verapamil but meant lisinopril! Big typo goof!!! I also tried verapamil, but could not take it due to its causing me to develop a severe case of diverticulitis. But, the ACE inhibitor I meant was lisinopril.

                    My apologies for the confusion!
                    Rhoda

                    Comment


                    • #11
                      Re: checking my kids for HCM - need advice

                      No problem Rhoda. We all make mistakes.

                      Reenie
                      Reenie

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

                      Comment

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