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  • HCM & DCM

    [HCM & DCM]

    Author: Alison Griffith (---.42.194.203.acc02-wick-bne.comindico.com.)

    Date: 07-19-02 06:17

    Hi from Queensland, Australia. In 1980 my son, then aged 12, was diagnosed with HOCM which didn't respond to medication. A septal myectomy was performed at our excellent Prince Charles Hospital in 1982 and he was really well for a number of years until being diagnosed with Dilated Cardiomyopathy in mid-1995. As a result of left ventricular dysfunction (I believe) he suffered a stroke in 1999, and he is also now being treated for very early heart failure, taking Carvedolol, Lisinopril, Warfarin, Digoxin, etc.

    His father - my husband - was thought to be clear of HCM, but was finally diagnosed with non-obstructive HCM in 1997. He was relatively stable until just before Christmas last year when he was taken to hospital by ambulance. Tests revealed that just 50% of his heart was viable - he now had Dilated Cardiomyopathy and heart failure. He was assessed for a transplant, which was performed in April this year. Sadly, he did not survive.

    My question is: What causes the dilated cardiomyopathy to develop in people with Hypertrophic Cardiomyopathy? This doesn't appear to be terribly common. Does anyone know anything about it, or has it happened to many other people?

    Many thanks - and thanks for a great website!

    Alison Griffith [email protected]

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    [Re: HCM & DCM]

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

    Date: 07-19-02 07:53

    HI Allison,

    I am sorry to hear of your families battles with HCM/DCM. It is more common than people think, I believe, to convert from HCM to DCM - - It is just that many people are not diagnosed with HCM...they are just diagnosed later in life with DCM. Why??? Because they do not have many symptoms of HCM, but it is there. The condition is only detected as things progress and symptoms increase.

    In my family most of those with HCM have died before the age of 55, but my dad (thank God), is now 67...however his HCM has turned into a DCM.

    So to answer the question of WHY? It is in your genetic structure as to how the disease will progress. Unfortunately we do not know enough at this time about genetics to know what they really mean to the life of someone with HCM.

    So we keep supporting our researchers in the hopes that someday we will understand.

    My best wishes to you and your family,

    Lisa Salberg

    President

    HCMA

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    [Re: HCM & DCM]

    Author: Shannon (---.galileo.com)

    Date: 07-19-02 15:43

    Hi Lisa.

    I just read your reply to Allison and it got me thinkin'.........

    Both my dad and my sister had IHSS/HCM. My father died in 1979 after having two massive strokes 5 and 6 years prior. My sister died in 1998 after having a massive stroke 8 years before. Consequently, I always just assumed that strokes were part of the territory with HCM. However, when I mentioned to my cardiologist that I was terrified of having a stroke she said not to worry, that strokes are not common with HCM! I have always wondered how that could be given my father and sister's situation. So after reading your post, I wonder if they had progressed to DHM which caused the stroke.

    Can you give me any information on DHM? How is it different from HCM?

    Thanks you so much for any info.

    You are doing such a great job and helping a lot of people! Keep up the good work!

    Shannon

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    [Re: HCM & DCM]

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

    Date: 07-19-02 19:13

    Shannon - -

    First of all strokes are common in HCM this is due to arrthymia's (mostly A-fib) causing clots to form and thereby causing strokes.

    Second - - DCM - Dilated Cardiomyopathy is just about the opposite pf HCM in DCM the walls become thinned out and lose strength, the walls of the heart stretch out - similar to a balloon that is blown up to many times it losses its elasticity. While in HCM we have STRONG walls that beat hard..in DCM the walls can not pump so well.

    This is a very common confusion between HCM where the heart is "large" meaning muscle bound and heavy and DCM where the heart is "enlarged" the heart is floppy and stretched out.

    While this is not a text book definition I hope it helps some.

    If you have any others questions ... you all know where to find me!

    Lisa

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    [Re: HCM & DCM]

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

    Date: 07-20-02 12:38

    Dear Shannon

    Having had a stroke myself, I would like to chip in my two cents. If strokes are running in your family, you should talk to your doctor about taking aspirin and if you ever go into atrial fibrillation, you should consider taking coumadin on a regular basis. Either will reduce your stroke risk by quite a bit.

    It also sounds like you may want to call the office (973-983-7429) and get the name of an HCM specialist, too.

    take care

    S

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    [Re: HCM & DCM]

    Author: Alison Griffith (---.68.221.203.acc07-wick-bne.comindico.com.a)

    Date: 07-22-02 20:02

    Thank you Shannon and Lisa for your replies and comments re HCM and DCM. Every little bit of info helps me to understand these insidious diseases a bit better. This is a wonderful website to gain information. Keep up the good work!

    Alison

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    [Re: HCM & DCM]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-22-02 20:05

    Thanks!!!

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

    [Re: HCM & DCM]

    Author: Susan McCormick (---.ceg.com)

    Date: 07-23-02 15:14

    Hi!

    I've been reading this board for around 8 mo. now and man I really love it! I have learned soooo much from everyone. I even copy some of these postings and take them to the doc with me so I can ask more questions. I do have a question for you guys though. I read alot about going in and out of a-fib, v-fib. How do you know you have a fib or v fib. Is there a test that they do or do you feel it? How does it feel different from just the regular irregular heart beat, racing heartbeat, or the "flop" feeling you get. Would I know if I were in afib or vfib. I kind of scares me that I may be doing this and just putting it down to another HOCM symptom.

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

    [Re: HCM & DCM]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-23-02 15:33

    Dear Susan,

    My most frequent and least popular answer: everyone is different.

    If you have Vfib, your heart is basically quivering and if you don't get treatment immediately, you will never need anything ever again.

    Atrial fibrillation is a heart rhythm that some people have their whole life. Some people can tell when their heart goes in or out of it (me) and some can't. I know because I literally feel my heartbeat change.

    Ventricular tachycardia, if it lasts long enough, can make you dizzy and you may pass out.

    Everyone has the occaisional blip or bleep palpitation (my technical terms) that you may feel. Also, if you suddenly feel very tired or fuzzy, check your pulse, it may be very fast.

    If you take your pulse and there are no regular beats, you may be in atrial fibrillation. An ECG will tell you what kind of rhythm you are in.

    Basically, tachycardia means the pulse is regular but way too fast. fibrillation means that the beats are coming randomly and if the atria, it is the top half of the heart and the ventricles, it is the bottom half. Fatigue, chest pain, dizzyness and palpitations are all possible with an arrhythmia.

    If you are ever in doubt of your condition, call your doctor or if your symptoms are severe, call 911.

    Sarah

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

    [Re: HCM & DCM]

    Author: Susan McCormick (---.ceg.com)

    Date: 07-24-02 03:46

    Thanks so much Sara, I don't think the doctors could have explained that any better. Your are good!
    NOTE: This is a post from the previous forum message board.

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