Family Research

[mtlieb]

Hi All,

I'm researching my HCM family tree to help my doctors determine any risk i might have for sudden death, etc. There is no HCM on my mother's side, and my father was adopted, so his death is my only clue as to what may be in store for me. Dad was never diagnosed with HCM. His medical records are proving quite difficult to get, but i was able to obtain his death certificate which lists his cause of death as...

a) Cardiac Asystole, due to
b) Ischemic Cardiomyopathy, due to
c) Coronary Artery Disease


Given that this was 1985, and diagnostic procedures probably weren't what they are today, do you folks think his death fits the profile for someone with HCM? To my family's knowledge, dad never had any artery problems, nor do any of his children, including myself. The fact that i have HCM leads me to believe that he did as well, and that he may have simply been misdiagnosed.

According to my mother, dad did not have any heart problems prior to being diagnosed with an 'unexplained' cardiomyopathy. When he died, mom says he got out of bed, dropped to the floor, and never woke up again. He was in a coma for a week before he passed away. Does this mean that it was not a sudden death?

Thanks for any input you might have. This death certificate may be the only piece of hard information i ever get regarding dad's death, so it is an important link to what the future may hold for me.

Thanks again,

Jim

[annamc]

It seems like a lot of people have or are doing research on this forum. I've never done any research and don't understand why I would. All this talk of sudden death is making my head spin.

If someone has HCM/HOCM, does this mean they will die of sudden death at some point? If you find someone on your family tree that died of sudden death does that mean you will die of sudden death? This is the gist of what I am reading. I thought that if under control by medication and not doing physically streinous activity that I would be okay. Is this not the case?

Sorry to say, but it does sound like your father may have had HCM. I'm not sure though.

[mtlieb]

Anna,

I don't believe that any one risk factor means absolutely that you or i, or anyone else will suffer a sudden death. It is also my understanding that the occurence of sudden death is actually quite low in the HCM population. It's just something that needs to be taken into consideration, and may be an indicator for whether or not someone should have an ICD implanted etc.

My post isn't meant to alarm, but doing a proper risk assessment for sudden death is something that i am taking quite seriously.

Jim

[Lisa Salberg]

Jim, your post is not alarming in fact it is rather good research on your part... but then again isnt that your strong suit? (ask Jim what he does for a living )
Yes, it sounds like your dad had HCM. How old was he when he passed away?
Sudden death would refer to the cardiac event that caused his death. If he lived a few days after the "event" I do think that most doctors would classify that as SD. From what you are saying it sounds like he had an arrythmia and that lead to his death. My sister died in much the same way, she had her cardiac arrest and died 5 days later.

Anna - RE the risks of SD - NO medications do not protect you from sudden death. NO not every one with HCM is going to die from SD, in fact many people with HCM do not die from HCM they die from many other things ... many are not heart related such as cancer, accidents etc...
Re your family history - if you have lost 1 or more family member to SD then your risks of SD are higher.. you must also look at other risk factors which can be found listed on the board elsewhere.
ANNA - I can not say this strongly enough - an evaluation by a doctor within an HCM specialty center can help to detirmine if you are at risk for SD, help to line up medications that will help your heart now and in the future and provide clear information so that you will not feel like your "head is spinning" thinking about HCM.

Peace to all,
Lisa

[mtlieb]

Thanks Lisa,

He was 53 when he died. There is a space on his death certificate, after the cause of death, that says 'interval between onset and death' and none was given, leading me to believe it was possibly quite sudden. None of us children were home at the time so mom is our only witness to the event. She is in her seventies now and, god love her, she just doesn't have the memory of everything that happened at the time. It does sound sudden, however the fact that he lingered in a coma for some days after his collapse made me think it doesn't qualify as a sudden death. It is curious to hear mom speak of this cardiomyopathy dad had that nobody could explain at the time.

It's kind of sad to think that if dad had been diagnosed with HCM and received treatment he might still be alive today BUT... that was almost twenty years ago and things just weren't the same i guess. It doesn't do the brain any good to linger on such things

However, i don't think dad would mind if i learned a thing or two from his death

Jim

[Sarah]

sudden death

I would definitely call that HCM and sudden death, respectively.


Anna, the vast majority of HCMers live to the average life expectancy (or even beyond). However, about 1 to 1.5% die suddenly each year.

THe risk factors for sudden death are these:
personal history of fainting, cardiac arrest, ventricular tachycardia, an incorrect blood pressure response to exercise (it doesn't go up when it should) and a septal wall thicker than 3cm. And a family history of 2 or more family members who had sudden death (some will argue for just 1, but 2 is a lock).

If you don't have any of these, then your risk is the same as anybody else who doesn't have HCM, pretty much. If you have several risk factors, then you can get an implantable cardioverter-defibrillator (ICD) that will shock your heart back to normal if you need it. VP Cheney has one.

We research this and talk about it because there is a solution to it. If you know you are at risk for sudden death, there is something you can do about it. So instead of being morbid, it is a very important and life-affirming thing to do.

Seeing an HCM specialist is the best way to be evaluted properly.

take care,

S

[Linda]

Jim, Below, I have a web site listed that will define sudden cardiac death(SCD). I think you will find the info helpful. Basically, sudden cardiac death means the heart has stopped pumping efficiently enough to supply the rest of the body with adequate oxygen. You will read that sudden cardiac death can often be reversed with defib within the first few minutes. Brain death & permanent death begin after about 4-6 minutes and after 10 minutes, it is rare to be able to reverse sudden cardiac death. So, it is possible to reverse SCD and still have permanent brain damage such as most likely happened to your father. This would allow him to pass away at a later time. So it would have been a SCD event, reversed, with the significance of SCD being in your family even though he suffered permanent death some time after the SCD event. Hope this makes some sense for you. It will after you read the site.

Defibrillators are wonderful, both implanted and the external units, but they are limited in their capabilities also. If the offending rhythm is not a rhythm that can be shocked back to normal, such as ventricular fibrillation, a shock cannot restore a normal rhythm. Other problems can occur to cause sudden death such as asystole, (no heart beat), but vent fib is by far the most common. We do the best we can , take all precautions, and then live our lives. That puts us back to the "knowledge is power". Linda

http://www.americanheart.org/present...dentifier=4741

[Lisa Salberg]

nicely put Linda...Jim does that help?
Lisa

[mtlieb]

Everyone has been very helpful. Thanks much!

Linda, i will check out the site shortly, and thanks for the link and informative post! Since my dad's cause of death was listed as ischemic cardiomyopathy, that means that he had a thickening of the heart muscle that prevented it from supplying oxygen to the body, right? Kinda sounds like HCM to me. Also, isn't ischemia something that is often tested in persons with HCM?

I don't know where the coronary artery disease comes from. To my knowledge he didn't have anything like that and his death came very unexpectedly. Perhaps with nothing else to pin it on they just listed the 'works' on his death certificate.

Sarah, good information, and i was wondering... my dad was adopted, so basically the HCM history stops there for me. If he did in fact suffer a sudden death, i think my doctors would likely treat it as if there were more than just him, since we just don't know. There's no written record of my dad's biological parents. From what i understand it was quite the scandal for it's day so everything was kept very hush hush

However i do remember hearing that my grandmother once met the girl who gave birth to my dad, and described her as a very frail and sickly girl who died quite young. It wouldn't take much of a leap to imagine that she might have had HCM as well, but of course that is purely speculation. I'm just having fun with the research now

Thanks everyone

Jim

[SheliRenee]

If the offending rhythm is not a rhythm that can be shocked back to normal, such as ventricular fibrillation, a shock cannot restore a normal rhythm.

Linda -

What is ventricular fibrillation? I tried looking it up, however, everything kept coming back "not found."

Thanks,

SheliRenee

[Sarah]

from americanheart.org...

Ventricular Fibrillation

What is ventricular fibrillation?

The heart beats when electrical signals move through it. Ventricular fibrillation (ven-TRIK'u-ler fib"rih-LA'shun) ("V fib") is a condition in which the heart's electrical activity becomes disordered. When this happens, the heart's lower (pumping) chambers contract in a rapid, unsynchronized way. (The ventricles "flutter" rather than beat.) The heart pumps little or no blood.

AHA Scientific Position

Ventricular fibrillation is very serious. Collapse and sudden cardiac death will follow in minutes unless medical help is provided immediately. If treated in time, V fib and ventricular tachycardia (ven-TRIK'u-ler tak"eh-KAR'de-ah) (extremely rapid heartbeat) can be converted into normal rhythm. This requires shocking the heart with a device called a defibrillator (de-FIB'rih-la-tor).

Today one effective way to correct life-threatening rhythms is by using an electronic device called an implantable cardioverter-defibrillator. This device shocks the heart to normalize the heartbeat if the heart's own electrical signals become disordered.

[SheliRenee]

Okay - Cool - but if I read correctly (and it's a bit late when you only get five hours of sleep a night), Linda said that shocking the heart won't help V fib and you said it would.... Did I get it wrong?

[Lisa Salberg]

Please re-read Lindas post, she is talking about OTHER rythms that can not be shocked..unlike "V-Fib" which can be shocked.
Lisa

[annamc]

Everyone seems to be wanting me to call Lisa. Granted I am sure she's helped many and that is applauded. It's just that I don't have any answers I can give Lisa. It's not that I'm stupid, its just that I've never done any research and I am unable to pinpoint any family members that died of HCM. I'm not down on research, I think its great for someone to look into what is best for them! SARAH - I really wasn't trying to be morbid. Glad to know something can preved SD!

Does everyone have their own medical folder? I was told that I should keep a medical folder of my own? I thought that doctors records were their records and I couldn't touch them. Is this true? If I had that information - LISA we could talk, but unfortunately I do not. So, I'm not trying to ignore you, I'm just without information.

Oh and about an HCM specialist, if there is not one in my area, I will not be able to go to one. I am not able to do a stress test due to the risk factors involved.

One more thing, Ischemic Cardiomyopathy (wasn't that just another term for HCM?)

[Toogoofy317]

Anna,

Even if you don't have much information Lisa is still an awesome person to talk to. When I first touched base with her I had no family history per say. She helped me to ask the questions I needed to ask. It is also good to let all of your family know you have this so they can get tested! Once, you start talking to them stories typically start. I thought I was the only one with it but one of my family members I barely know said that one of my cousins died at 29 of a heart attack. So yes talking to someone and getting the information you need is crucial.

Your medical records are yours. No medical facility can keep you from viewing your medical records. It is in the patient's rights. Anytime I have a hospital admit or something that is relative to my heart I ask for a copy. I have quite a few doctors and faxes sometimes doesn't get to them. So it is a good idea to have a hard copy on hand.

As far as seeing a specialist is concerned this is one part where I would be running and not walking to see. I live in Florida and ended up having to fly to Boston for treatment. I did not have the money to go but I begged and borrowed from my friends. I even ended staying with a friends parents when I was up there because I was so hard up on cash. If you don't have insurance most offices are pretty good with creating a payment plan. Some hospitals even offer charity help to those in need. I qualified at my local hosptal for the help and it has taken a lot of stress off of me.

I hope this helps and don't give in to medicore care. You have to be an informed patient

Mary S.