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  • sudden death

    [sudden death]

    Author: beth (---.nyc.rr.com)

    Date: 07-17-02 22:32

    I'm quite bewildered. My best friend of 20 years died suddenly (she was diagnosed with cardiomyopathy in 1997) on May 21st of this year walking up 1st avenue in New York City on a beautiful day.

    I found this site as I was trying to understand her disease and what happened to her. Mostly, I am wondering if she was getting appropriate treatment. I am concerned she should have had a defribullator or pacemaker and that could have saved her from her sudden and untimely death. She was not very communicative with any of us about her disease (her mother died of it at 59 in 2000).

    She had one alcohol ablation which she did say relieved her symptoms for a period of time. However her symptoms persisted again after a year or two although perhaps not to the degree she had them prior to the procedure.

    I want to understand why the sudden death. Her mother was resuscitated several times from cardiac arrest. Why did my friend die this way?

    She was non-compliant with her medication (verilun -- she hated it, made her feel awful) but took good care of herself --- physically fit, good diet, plenty of rest.

    The difficult thing for all of us who were close to her is reconciling how great she looked with how ill she must have been. She never showed any physical symptoms.

    Has anyone else experienced sudden death in your families? Even while being treated by cardiologists?

    Please let me know.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: Anthony DeSpirito (---.rasserver.net)

    Date: 07-17-02 22:42

    I am so sorry to hear about your friend. I do not have an answer to any of it. But what I do know is that HCM has no face...meaning you could be fat, skinny, old beautiful, young and you will never know that this person has this terrible heart condition. My husband has it. Everyone who knows of him and sees him thinks he is okay. But if you were to really listen to him you would know it's true effects. Once again we are truly sorry for your loss.

    Marta

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: beth (---.nyc.rr.com)

    Date: 07-17-02 23:12

    thanks for your kind words.

    yes, we definitely knew that she was not the same

    as she was prior to her diagnosis. mostly, there was a bit of sadness about her and a certain fatigue (don't know which caused which or if they were just both mixed up).

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: Laura (---.proxy.aol.com)

    Date: 07-18-02 00:23

    On December 26, 1991, my mother died suddenly while she rested on the couch. I have a video of her 12 hours prior and she appeared perfectly healthy. It was such a shock. She looked perfectly peaceful on the couch. It was a mystery and no autopsy was performed.

    Surprise on November 21, 1999 I was diagnosed with HCM. Now my Mom's sudden death made sense.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: Sarah B-Board Moderator (---.28.35.16.Dial1.Chicago1.Level3.net)

    Date: 07-18-02 04:19

    Dear Beth

    I am very, truly sorry for you loss. I had a friend die at age 12, and I lost my father suddenly two years ago, so I know what you are going through right now.

    In answer to your questions: Your friend's fatigue was most likely caused by the cardiomyopathy as it is a common side effect. However, it is probably not possible to say for sure that a defibrillator would have saved her life --sometimes the heart stops so completely that even an ICD won't save you. And if her doctors gave her an ablation, it is likely that they evaluated her sudden death risk and thought that it wasn't warranted (implanting an ICD, I mean). It is sadly very true that people with HCM or other cardiomyopathys die, regardless of what treatments they have been trying. The statistic is very low, but that doesn't mean anything when someone you love is a part of it.

    The best thing you can do is be there for her family and take good care of yourself. Your friend doesn't sound like she let her cardiomyopathy really stop her from anything and I suspect she was the kind of person who would want you to remember her by living the best life you can.

    take care and a big hug,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: Glen (---.com)

    Date: 07-18-02 08:21

    Hi Beth, I'm sorry you had to lose a friend to this condition, I can relate to that, both my grandmother & father died of sudden death, I never met my grandmother and lost my father when he was only 43. At that time we were as perplexed as you are now because we didn't know what they had and why they should just go like that. I have been diagnosed as low risk for sudden death, but it is still always in the back of my mind. I was diagnosed over 30 years ago, I am now 52.

    I can also relate to others seeing me as completely healthy as I am rarely sick, I would be the person they described as never a sick day in his life although there are many days I am not quite myself, I just don't show it. I also do not talk about my condition to friends as I do not want them looking at me as a sick or incapacitated person, I am sure your friend felt the same and that may be the reason she kept her condition to herself. I do however talk freely to my family you have to vent once in awhile, just a couple weeks ago I was talking to my wife about a posting on this site and a friend I have know for over 20 years over heard and was completely blown away that I had a heart condition.

    Read the postings on this site and it will give you a very good insight into what some HCM patients have to go thru, and I would also bet that some only talk about it on this site to others that share the same condition.

    Good Luck and stay well

    Glen

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-18-02 08:43

    These are the posting I hate... the loss of one of our own. Could it have been avoided, in my experience, most likely yes an ICD saves most people who expereince a sudden death with HCM. While Sarah is correct and it is not 100% it is darn close to 100%.

    I would be happy to speak with you regarding your questions and concerns for your friend and the remainder of her family. Please feel free to call the HCMA at 973-983-7429.

    God Bless your dear friend.

    Lisa Salberg

    President

    HCMA

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: susan (---.151.OVG.vol.com)

    Date: 07-18-02 11:05

    hi beth, i lost my father when he was 43 years old. he knew he had something wrong with his heart but he didn't know it was as serious as it was. i lost him in '84. he had been sick with a stomach virus, got dehydrated. when he thought he felt better he went outside to work on a trailer he was remodeling. he drove into town to get some wood. on his way home he pulled of the road, he must have known he was in trouble, he went into sudden death, the couldn't revive him. the person who saw him pull of the road was a nurse, she tried to give him cpr, it didn't work. it took along time for me to understand what happened to him, actually it took me until i was diagnosed with hcm to understand what happened.

    i am so sorry about your friend, i know how great a loss that is. your in my prayers.

    susan

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: Mary (---.wi.rr.com)

    Date: 07-18-02 11:48

    Hi Beth. My brother died of HCM when he was 37 years old. He had just returned from a trip to the grocery store, sat down on his couch, and died. At the time none of us understood it--we knew he had "heart problems" but not how serious they were. And then at the age of 35 I was also diagnosed myself, and I understand finally how sick my brother really was. I sympathize with your loss, and hope that all of this information helps you to cope better. Mary

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [autopsy?]

    Author: Kathryn (---.dyn.optonline.net)

    Date: 07-20-02 11:27

    My twin brother died suddenly 2 weeks ago of cardiac arrest. He was healthy, extremely active and never complained of any health problems, except that in the last week he was complaining of being very tired. I read an article in the new York times about hcma and I'm wondering if this might be what happened to my brother. My question is, would it show up in an autopsy?

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: autopsy?]

    Author: beth (---.nyc.rr.com)

    Date: 07-20-02 11:55

    kathryn -

    I'm VERY sorry for your loss. It's absolutely tragic to lose someone close, so young, so unexpectedly. It's tragic to lose anyone. It takes time to get your world back in order after losing someone close. My friend died on May 21st. I'm still reeling. But I've found time does help me deal with the reality of that loss.

    It's a different world for me, one that has something missing, but it is one I can live in and in some ways vow to live in well in memory of my wonderful, cherished friend.

    I am not able to answer your question. You need to talk to professionals

    to understand what happened. And I am a strong believer in getting answers.

    Information and education are the best preventors.

    I strongly suggest you call the HCMA to discuss the circumstances of your brother's death with them as they seem to have a very good understanding of this disease; causes, effects, treatment, specialists, et al.

    I'm certain they will lead you in the right direction. Both in terms of clarifying what happened with your brother, if you had this disease and importantly for yourself.

    If your brother had this disease it seems to me to be critical for you to get to a specialist to be screened and monitored as all of the reseach I have done on this disease suggests a 50/50 risk for the disease if it has been diagnosed in an immediate family member. I witnessed two deaths from this disease in 2 and 1/2 years.

    But again, I caution, I DO NOT KNOW. You absolutely need to talk to people who do. Call them. Take care of yourself. And be kind to yourself during this very difficult time.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: autopsy?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-20-02 11:58

    Yes, HCM is rather easy to detect on autopsy. Although HCM is not the only cause of sudden death to look for. I would request that the slides taken during autopsy be held until you get a clear answer as to cause of death. This information may prove useful to the rest of your family.

    How old was your brother?

    Please know we are all sorry to hear of your loss.

    Best wishes,

    Lisa Salberg

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: autopsy?]

    Author: Board Moderator: Sarah Beckley (---.dialup.mindspring.com)

    Date: 07-20-02 12:44

    Dear Kathryn

    I'm very, truly sorry for your loss. If it was HCM, then you and anyother siblings and your parents should have echocardiograms to make sure none of you have it too, as it is genetic.

    You and your family are in my prayers,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: autopsy?]

    Author: Kathryn (---.dyn.optonline.net)

    Date: 07-20-02 13:16

    first thank you for all of your kind and helpful responses. we will certainly be following this up. My brother was 21 years old. i've read on some of the other posts about dilated cardiomyopathy. in the preliminary autopsy the only thing they were able to tell us was that his heart was dilated or slightly enlarged. Would this be indicative of dcm? Of course, we will know more by talking to professionals, but clues do help. Thanks

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: autopsy?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-20-02 20:11

    It could be either HCM or DCM - In HCM the Atria (top) can be dilated and the bottom/ventricle can be thick or larger - check on the heart weight - I know that sounds harsh and I am sorry but it will be a good indication if it is HCM -

    I am sure your brother was a wonderful person and I am sorry to hear you lost him so young.

    Feel free to call if you need us!

    Regards,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: beth (66.65.116.---)

    Date: 07-24-02 17:44

    laura -

    i'm sorry for your loss. i hope you are doing well in managing your condition.

    i am curious - has an ICD been recommended for you? why or why not?

    appreciate your response.

    beth

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: Barbara (---.vntrcs.pacbell.net)

    Date: 08-03-02 22:08

    My husband and I received the devastating news last Nov. of the sudden death of our 32 yr. old son. We were traveling and hadn't talked with him in a few weeks.

    We were absolutely in shock and had to wait 5 weeks to even know the cause of death, as we had no idea anything was wrong with him. When we got the autopsy results, it was both hypertrophic and dilated cardiomyopathy. We didn't know what this was but researched it on the internet.

    He was in the rest room of a McDonald's when this happened. For some reason, this haunts me. I picture him walking into the rest room, not knowing he would not come out again. Paramedics were called but they were unable to revive him.

    We still do not fully understand how this came about, why and how he had this condition, and we are quite sure he didn't know about it either. He seemed to be very healthy.

    It's so shocking to lose someone suddenly, and we never expect to lose our children before us. I feel like his death will always be a puzzle to me, something I will never fully understand no matter how I try.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: Jan Hendrix (---.proxy.aol.com)

    Date: 08-06-02 09:58

    Kathryn,

    I am so sorry to hear of your twin brother's sudden death. Our 23 year old son collapsed and died on April 18, 2002. He was sitting in his chair in his office at work discussing a project with two other co-workers. Like your brother, he had complained about feeling tired. In fact, he had been in to the doctor for a check-up fifteen days before his death just to make sure things were ok--the exam in the office and blood work revealed no problems. He had always been very healthy and was a highly ranked state swimmer in high school. We had seen him six weeks prior to his death (he lived 13 hours by car away from us) and he looked great. There is no history of sudden cardiac arrest or even heart disease in our family--lots of cancer but healthy hearts as far as we know.

    The autopsy did not find anything except a mildly enlarged heart and bridging of the left anterior descending coronary artery. (The cardiologist who tried to save him in the ER wants to know what triggered the arrhythmia---he does not believe the condition of our son's heart was enough to be a cause of death by itself.) Evidently tissue samples and all other aspects of the heart and valves were normal.) I understand that the long QT syndrome does not show up in an autopsy so I guess that could be a possibility for us.

    It is just impossible to grasp the idea of someone so young just dying like that--just being perfectly fine one minute and dead the next. When the EMS people arrived at the office he had no heartbeat and was not breathing. His co-workers did not begin CPR (they thought he was breathing).

    We have tried to think of any lifestyle changes he might have had but the only thing we could come up with was that he had started drinking "energy" drinks such as 180 while he was at work. We know for sure that he had at least one that day--they contain guarana, a form of caffeine plus B vitamins--no ephedra. These energy drinks were available free where he worked--it was a sports marketing company.

    There seems to be an increase in deaths such as this among young people. There just has to be some common thread.

    I hope that you have been checked thoroughly by a physician. Please accept my deep sympathy to you and to your family. We can identify with the suffering you are going through. Jan

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: sudden death]

    Author: beth (---.nyc.rr.com)

    Date: 08-06-02 20:49

    Hi Barbara;

    I'm terribly sorry for your loss. There are no words to express my sympathy to a parent who loses a child.

    One thing in your e-mail disturbs me; that is, the notation that you cannot understand what happened.

    I think it really important that you do understand it. If the autopsy concluded that he had HCM or HOCM, it is imperative that you understand the implications of that for the living.

    The disease as I understand it is predominantly if not virtually completely genetic. This has real implications for you, your husband, any other children you may have, grandchildren, your siblings, nieces, nephews etc.

    The literature I have read suggests that 50% of all immediate family members are affected by the disease.

    For example, in my friend's family, known family members with the disease were: my friend, her mother, her uncle and her grandfather.

    Therefore, everyone in the immediate family needs to be screened for the disease and screened by people who know going in exactly what they are looking for --- HCM.

    There is nothing anyone can do to change the tragedy that has already happened; however, there is a lot that can and should be done to preempt any future tragedies in your family.

    Please take care of yourself and your family and go to a good specialist to get everyone screened if you have not already done so. I hope you already have.

    Again, my deepest sympathies.
    NOTE: This is a post from the previous forum message board.

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