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Family Research

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mtlieb Find out more about mtlieb
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  • #31
    Re: Family Research

    Jim - good work digging up old data - but heck that your stron suite isnt it!
    Yeh, sounds like dad was a HCM'er too. At least you now have a better idea as to where it came from and we now know that it is important for your sibilings to be check every 5 years and for your nieces and nephews to be checked for HCM also.

    Be well,
    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


    • #32
      Re: Family Research

      I thought i'd revive an old thread rather than starting a new one...

      Does anyone here know of an instance where HCM was mis-diagnosed as a cardiomyopathy due to alcoholism? My dad was never diagnosed with HCM, however in reviewing his medical records from twenty years ago i have found that he died from a fatal arryhthmia of unknown cause. He was 50 yo at the time. His records indicate that he had a cardiomyopathy which could not be explained, and i also have several echo reports, hand written, that say 'probable hypertrophy of the left ventricle'.

      None of these reports say HCM, or IHSS as it probably would have been called at the time. But they all do say that my father must have had a history of alcohol abuse, which i know he did not! I never saw the man take a drink ever, and believe me, i am an alcoholic... i would be able to look back and know whether the man was an alcoholic or not. My dad simply was not.

      His death certificate says that his primary cause of death was from coronary artery disease, although the medical reports that i have read after his death all say that he had no history of high cholesterol, high blood pressure, or any other factor that would lead me to believe that he had coronary artery disease. He simply got out of bed one morning, had a fatal arrythmia, dropped to the floor, and died. No history of heart disease prior to that. That really is all there is to it. He was adopted, so there is no family history prior to his death.

      This is a matter that really concerns me. My father lived to the age of 50, then suddenly dropped dead without warning. My specialist does not believe that my father even had HCM, let alone died from it, because his death certificate says coronary artery disease. I think that my specialist is wrong, and especially given that i am only about a decade away from how old my father was when he died, i am understandably concerned.

      Any ideas? Do i need to seek out another specialist and/or second opinion?

      Thanks,

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

      Comment


      • #33
        Re: Family Research

        Jim,

        I deleted this--it was the draft of the other one!

        Pat

        Comment


        • #34
          Re: Family Research

          Jim,

          I'm not sure I'll give you any real assistance here, but . . . . My father died in 1957 (age 47) after 4 years of angina, treated pretty unsuccessfully with nitroglycerine. He was diagnosed as having CAD--it really was the only reasonable explanation for his symptoms at the time. And when he died suddenly in an airplane without even his seat mate knowing he was having difficulty, my mother was told he had a "heart attack" (MI) and there was no reason for an autopsy. When I was diagnosed with HCM I. like you, started looking in my family medical history. From the POV of 2003 it looks likely that he had HCM and died from Vfib rather than MI. But we'll never know for certain because there was no autopsy.

          An autopsy would have shown the cardiac hypertrophy. Was there an autopsy of your father's body? If so, you should be able to access the pathologist's report and there should be note of the heart muscle thickness. If there wasn't you're stuck with the circumstantial evidence and logic. His other medical records might help. For instance, do you have a copy of his lab tests showing normal blood lipids? But, then, having CAD does not eliminate the possibility that he also had HCM.

          I'd believe your perception about alcoholism. At the time of death the medical examiner had to find some explanation--and alcohol does cause cardiomyopathy. Alcohol-induced cardiomyopathy is, however, dilated cardiomyopathy, not hypertrophic cardiomyopathy. The cardiomyopathy caused by CAD is also a dilated cardiomyopathy. So if the echos showed hypertrophy, I'd believe HCM.

          I'd say the main reason it would be important to convince your specialist--or at least to have a good conversation about it--would be to determine whether your father's death should be included in the risk factors in deciding whether you need to have an AICD. If my specialist hadn't been willing to discuss what I'd learned and what it might mean for me I think I would have sought a second opinion.

          Don't let yourself get too caught up by your age and his. You live in a time with a different level of care and medical knowledge than he did. My father died at age 47; I'm 60 and it looks like I'll keep going awhile more!

          Pat

          Comment


          • #35
            Re: Family Research

            Jim,
            A few things-- I would get the medical records to your specialist. I think they need to see them and review the findings. I do think your on the right path with your thoughts. If your dad had cardiomyopathy mentioned anywhere in his records...well it was likely HCM.
            Re you risk of SD -I think you need to look at the WHOLE picture...your dad, your childhood, your symptoms now and then and your current treatment. You need to lay out all this issues and discuss them with your docs.
            TO JIM AND THE REST OF YOU...
            DO not ASSUME that symptoms that may have occured as a child/teen do not matter if you are diagnosed as an adult and make sure all family history is carefully looked at. It is easy to jump to conclusions about early deaths in our families...but in most cases our guts are correct and it is normally HCM that had claimed the lives of our loved ones many year ago - but we never knew.

            Be well,
            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


            • #36
              Re: Family Research

              Thanks to all !

              Like i said, dad's echo reports from the hospital where he died do say 'probable left venticular hypertrophy', which for a while didn't make a whole lot of sense to me.... either there's hypertrophy or there isn't, right? Then it occured to me (with a big fat duh! and a slap on my head), that my own septum is only 1.5cm and my own cardiologist had problems diagnosing me. Being my father's son, perhaps his septum wasn't all that big either. He also didn't see a cardiologist until his death, and certainly not an HCM specialist. Perhaps like me though, that slightly enlarged septum caused a whole lot of obstruction (100 mm gradient in my case) which also makes sense. He was in a coma for a week, had an episode of ventricular tachycardia, and that was that for dear old dad.

              When you put it all together it just makes sense... probable left ventricular hypertrophy... probably arrythmia that caused his arrest... ventricular tachycardia... no history of heart disease prior to death... it all smells like HCM to me! However, since it was not documented HCM, and the death certificate says coronary artery disease, my specialist does not believe i am at high risk for sudden death. Oh well, we'll just have to see what happens in ten years

              Thanks again to everyone for your input!

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

              Comment


              • #37
                Re: Family Research

                not so fast... TALK to your docs... explain your ideas to them. YOu may be right...but you may be missing something that THEY see. TALK ABOUT IT... I have NO medical records on my grandfather or aunt..yet now we know that they both were HCM related deaths (SD for grandpa and stroke for my aunt). This was in the 50's and 60's so ed records were by todays standards a joke... BUT we do know that they were both HCM by todays understanding.
                Jim - lets not just wait and see lets act... there is no "I told you so's" with this stuff...because you may not be here to hear it

                Please TALK to your docs more about this.

                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


                • #38
                  Re: Family Research

                  Jim, I agree with Lisa. Talk to your docs and let them know your suspicions.(sp) You'll feel better once you talk to them. We like you and want to keep you around for a long time to come.

                  Reenie
                  Reenie

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

                  Comment

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