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  • Genes and Palpitations

    [Genes and Palpitations]

    Author: Micahel Finan (---.proxy.aol.com)

    Date: 08-19-02 12:59

    Author: Micahel Finan (---.proxy.aol.com)

    Date:   08-19-02 12:55

    Hi,

    My cardiologist recently told me to see if I have a "sudden death gene" so that he can determine if I need an ICD. I have no obstructions, but get palpitations daily. My heart also slows and speeds up from time to time, which is why we were considering an ICD. These are coming from the bottom of my heart, I believe.

    Does anyone have any info on this? Is there a lab that I can go to? Is this even necessary? Does anyone else suffer from palpitations? Can they be considered arrythmias?

    Thanks

    Michael

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    [Re: Genes and Palpitations]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-19-02 13:21

    Dear Michael,

    It is very clear from your doctor's suggestion that he is not up to date on HCM. THe HCMA can help you find an HCM specialist so that you can be evaluated for any sudden death risk. It sounds from your description that you may be having ventricular tachycardia, which is a risk factor for sudden death (the others are septal wall measurements, fainting, heart attack, incorrect blood pressure response to exercise and a family history of sudden death). There is no gene for sudden death --that is a fallacy.

    Please read the Sudden Death Gene thread started by Dolly, dated 8-19 as it answers your question very well. Please also go to the Overview of HCM in this web site and read all of the information on HCM (including the other sections on treatment, etc.) This will answer a lot of questions for you. Then you should e-mail the office (using the link on this page --ps I'm not in the office even though I moderate the board) with your doctor's name, address, and phone number ---as well as your own so that the HCMA can send an info packet to your doctor and add you to the mailing list. And ask for an appointment to talk to Lisa via phone to confer about doctors and she can hook you up with the right one for you.

    Most of us with HCM have palpitations. Here is a link to a discussion of palpitations: http://www.nlm.nih.gov/medlineplus/e...cle/003081.htm

    Palpitations are arrhythmias --in general conversation palpitations usually refer to a brief episode or even individual beats that go awry. An arrhythmia is a sustained irregular heart beat.

    Hope this clears a lot up for you,

    Sarah

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    [Re: Genes and Palpitations]

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

    Date: 08-19-02 14:12

    Ditto to what Sarah said...

    Lisa

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    [Re: Genes and Palpitations]

    Author: Dolly W (---.proxy.aol.com)

    Date: 08-19-02 15:16

    Hi Michael,

    I too, have palpitations. As a matter of fact, I've had them all day today.

    I've been told that single palpitations are nothing to worry about. Palpitations that come in multiples are supposed to be the dangerous ones.

    Sarah,

    You mentioned septal wall measurement as an indicator of sudden death risk. Can you elaborate on this?

    So, if I'm experiencing pre-syncope and my biological father died of sudden cardiac death, I'm assuming that I would be considered at higher risk for sudden death. Would this be correct?

    Thanks.

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

    [Re: Genes and Palpitations]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-19-02 15:40

    Dear Dolly W,

    If the septum is 3 or more centimeters thick, then it is considered a risk factor for sudden death. Yes, if you have two or more of the risk factors, you may be a candidate for an implantable cardioverter-defibrillator. Are you seeing an HCM specialist yet? If not, please call Lisa right now to get the name of someone (973-983-7429).

    take care

    Sarah

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    [Re: Genes and Palpitations]

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

    Date: 08-19-02 16:01

    Septal measurements of 3.0 or greater have been linked to a higher rater of sudden death.

    If your father suffered sudden death that does increase your risks. How old was your father when he passed away and what year was it?

    let us know.

    Lisa

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    [Re: Genes and Palpitations]

    Author: Dolly W (---.proxy.aol.com)

    Date: 08-19-02 16:34

    Sarah and Lisa,

    As a matter of fact, I spoke to Mayo today, but still waiting for appointment. My local Cardiologist is not a specialist in this area, but she is making every effort to learn and understand this disease, and I respect her for that. She has talked to Dr. Nishimura on my behalf.

    My father was 31 years old at his death. We knew that he had heart disease, but did not know if it was HCM. We're now assuming it was because he died of sudden death in 1972. I've tried contacting his sister for more information to no avail. The only thing she could tell me was that their mother died of heart disease and that she (the mother) also bore two other children, one stillborn and one who died shortly after birth of heart failure.

    So, I do have some risk factors, but thank goodness my septal thickness is only 1.5cm, according to local doctors. My EP study in January was good, but the same MD also said that I don't have HCM! Now I'm finding out that EP studies mean virtually nothing in HCM.

    I'll mention this to Mayo. If I need ICD, I would like for them to do everything at once.

    Thanks!

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

    [Re: Genes and Palpitations]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-19-02 18:15

    Dear Dolly,

    You will find the Mayo very helpful-- it does sound like you may be a candidate for an ICD and if so, they won't beat around the bush about it.

    I'm sorry that your family history is sad but good for you that you are fighting the battle.

    keep us posted

    Sarah

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

    [Re: Genes and Palpitations]

    Author: Micahel Finan (---.proxy.aol.com)

    Date: 08-19-02 22:24

    Hi Sarah,

    Thanks for your response. What a terrific web site, I'll be visiting this on a regular basis.

    Just to clarify, my cardiologist, Joaquim Correia (know him?), Director of Arrhythmia Services, NJ Medical School, never actually said the words "sudden death gene" but said to get a test to see if I have a gene mutation for sudden death risk.

    I have non-obstructive HCM with an ejection fraction of 56%. The outflow isn't bad, but what concerns me is my palpitations. I have them a lot, and an event monitor found brief sinus bradycardia w/ ventricualr rate as low as 59BPM.

    This Dr thinks I'm borderline for an ICD. On a scale of 1 to 10 he said I was 5. My father died a sudden cardiac death @ 49yrs old, but I can't be sure if it was HCM or his hyperlipidemia and hardening of the arteries. The Dr, thought that since I don't know my family history, (don't know other relatives on his side) perhaps a gene test could let me know of my predisposition? Make any sense? I'm very confused.

    If I should go to get this test, I don't know where. This Dr. told me to go to this site for info.

    Michael

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

    [Re: Genes and Palpitations]

    Author: Micahel Finan (---.proxy.aol.com)

    Date: 08-19-02 22:26

    Hi Sarah,

    Thanks for your response. What a terrific web site, I'll be visiting this on a regular basis.

    Just to clarify, my cardiologist, Joaquim Correia (know him?), Director of Arrhythmia Services, NJ Medical School, never actually said the words "sudden death gene" but said to get a test to see if I have a gene mutation for sudden death risk.

    I have non-obstructive HCM with an ejection fraction of 56%. The outflow isn't bad, but what concerns me is my palpitations. I have them a lot, and an event monitor found brief sinus bradycardia w/ ventricualr rate as low as 59BPM.

    This Dr thinks I'm borderline for an ICD. On a scale of 1 to 10 he said I was 5. My father died a sudden cardiac death @ 49yrs old, but I can't be sure if it was HCM or his hyperlipidemia and hardening of the arteries. The Dr, thought that since I don't know my family history, (don't know other relatives on his side) perhaps a gene test could let me know of my predisposition? Make any sense? I'm very confused.

    If I should go to get this test, I don't know where. This Dr. told me to go to this site for info.

    Michael

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

    [Re: Genes and Palpitations]

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

    Date: 08-20-02 07:23

    Michael -

    Well at this point in genetics, no I do not think it makes much sences as we do not really know what each gene mutation means. If you have children and wish to be screened to know the mutation and then have the kids screened to see if they carry the genee..this makes noe sences then attempting to use genetics to detrimine risk.

    I too am in NJ and can recommend some doctors who work more with HCM and even a specialist in NYC.

    Call the office...we can talk more.

    Lisa

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

    [Re: Genes and Palpitations]

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

    Date: 08-20-02 14:46

    Hi everyone.

    Just thought I would let you know.....

    I was in Houston to see Dr. Spencer last month (my 3-month follow-up after my septal ablation procedure.) During the appointment a lady came in and asked for my permission for them to take some blood. She said they are doing research to try to find a specific gene that only HCM patients have. That way they could do a simple blood test in early childhood to diagnose HCM instead of waiting until symptoms occur or until symptoms present themselves!

    Pretty exciting!

    Shannon

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

    [Re: Genes and Palpitations]

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

    Date: 08-20-02 17:15

    I mean, until symptoms occur or until the Echo shows signs of HCM.

    Duh!

    Shannon

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

    [Re: Genes and Palpitations]

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

    Date: 08-20-02 17:48

    Shannon -

    The news hear is genetic research in HCM has been going on for about 10 years now. We have detected not one...but 10 gene mutations that cause HCM. While at the current time we do not know what each different gene mutation means as far as symptoms and mortality and such go..it is a wonderful way to know if a child has the gene so we know to watch for signs of HCM.

    FYI you do not HAVE to show signs of HCM if you have the gene. The gene may not show itself in anyway...yet your child would then have the chance of passing it to their child.

    To those of you wondering where you can go to get the testing done....most of you will have to wait a few more years... As there are still so many gene mutations that have not yet been idetified the testing is only done in research centers. While some exciting news is brewing in the gentics front...which I can not share at this time...I hope that we will have greater access to genetic testing on a "consumer" level within the forseeable future. When I can say more I will.

    Best to all!

    Lisa
    NOTE: This is a post from the previous forum message board.

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