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Family Research

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mtlieb Find out more about mtlieb
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  • Reenie
    replied
    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

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  • Lisa Salberg
    replied
    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

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  • mtlieb
    replied
    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

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  • Lisa Salberg
    replied
    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

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  • Pat
    replied
    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

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  • Pat
    replied
    Re: Family Research

    Jim,

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

    Pat

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  • mtlieb
    replied
    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

    Leave a comment:


  • Lisa Salberg
    replied
    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

    Leave a comment:


  • Reenie
    replied
    Re: Family Research

    Jim, sounds that way to me too. We recently found the "genetic link" to my husband's HCM too. It's his grandma, who by the way is now 90 years old. But the doctors still haven't told her that she has HCM. I'm trying to let the rest of the family know about it, but it's hard. My mother in law says she told the family, but knowing her she said something like, "Roger has a heart condition, and we think he got it from Grandma. They say it runs in the family." That's probably all she said to anybody. I'm working now on trying to do a family newsletter or some other form of communication that I can send on. Oh, and mother in law supposedly didn't show the disease about 10 years ago, so she would be one of those rarity cases where you can carry the gene and not express it. Wow, it's all so overwhelming.....

    Reenie

    Leave a comment:


  • mtlieb
    replied
    Re: Family Research

    Reviving an old thread with new info...

    Finally got some medical records from the hospital where dad passed away. They are cryptic and few and this apparently is all they will ever be able to get me, but there is an echo report, hand-written quite badly (even for a doctor) along with some notes from his doctors and i picked out some phrases here and there that caught my eye...

    probable hypertrophy of the left ventricle
    left ventricle markedly dilated
    ventricular tachycardia
    probable arrythmia that caused arrest
    right heart unremarkable

    Now there was a whole lot of stuff going on with dad when he died, not the least of which was pneumonia and coronary artery disease, but it sure sounds to me like he had a case of undiagnosed HCM and maybe i'm not a spontaneous mutation after all.

    Any thoughts?

    Jim

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  • Lisa Salberg
    replied
    Here is a point of view...Every living being on this planet is a spontaneous mutatant... Each human has between 6-50 mutations (nobody is perfect )
    When it comes to HCM we can clearly track the mutation and the progress of the mutation through the generations.
    To those of you who appear to be spontaneous mutation in terms of HCM...it is very possible that you were not the 1st with the mutation but the 1st to express it.
    Off to the meeting!

    Lisa

    Leave a comment:


  • Reenie
    replied
    Guys, I do think that some people are spontaneous mutaters. You have to remember, though, that rarely a person can carry the gene and not express it. So even though they don't show on echo as having HCM, they can carry the mutated gene that causes it. Does that make everything clear as mud?

    Reenie

    Leave a comment:


  • SheliRenee
    replied
    Good morning Jim -

    Just consider yourself very special. My son was born with HCM and developed an arrhythmia at five months. As far as we can find so far, he is the only one who has this also. I guess he's my little spontaneous mutation. Enjoy your day.

    SheliRenee

    Leave a comment:


  • mtlieb
    replied
    Family Research

    Hi All,

    Just to wrap up the family research portion of this thread...

    My specialist has reviewed my father's death certificate, and he does NOT believe that my father suffered a sudden death episode due to HCM, in fact he does NOT think that my dad had HCM at all. I was surprised to hear this and of course it raises the question 'how in the heck did i get this thing if nobody else in my family has it?'. Apparently i am one of those people who spontaneously mutated (ya just gotta love the sound of that).

    It's good news for my siblings as well. Since i did not inherit the HCM, they are at a lower risk of having it. Once again, i am the black sheep of the family. LOL. There's not a single occurence of cancer anywhere in the family tree, and i got it, nor is there any HCM and i got that as well. I'm beginning to think i was switched at birth, or perhaps i should see how the old milkman is faring health-wise

    Jim

    Leave a comment:


  • DLCC2
    replied
    To everybody who posted today, thank you for all the valuable information you all shared.

    As a person with many chronic illnesses I have found it absolutely to be invaluable to have copies of my files (ok, so they're encyclopedia size, I do summarize which was mentioned)for all the reasons discussed.

    If I had done this with just my asthma, allergies and heart murmur (which wasn't just a murmur)I would have found lab notes that told me that I tested positive for Hep C. My PCP found the notes a yr later when we were looking back for something else.

    I do indeed whenever possible make my Dr's appt. and let them know if I'm coming in for more than one thing so they can schedule in the time. I also have written down the questions I might have and try to type them out and give them a copy. (My appts. are usually for more than one thing)My current PCP (Primary Care Physician) is awesome and she appreciates these notes and takes her copy and if she has to get back to me on something she tells me "if I haven't gotten back to you by such and such a time, you call me".

    Faxes and emails are wonderful too. My current cardiologist loves my orignization too and my being interested in research and welcomes most anything I find on the internet that he doesn't already know. Well that's my two cents! Thanks again.

    Diana

    Leave a comment:

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