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  • HCM kids and sports

    [HCM kids and sports]

    Author: Darcy (169.3.221.---)

    Date: 03-26-02 17:31

    Hello,

    My name is Darcy and I just came across this board while looking for info on HCM. I lost my 38 yr old husband, ten months ago, suddenly to a heart attack while he was playing basketball. The coroners report determined the cause of death to be HCM. He never had any symptoms. We have two daughters that have been tested by a cardiologist and they have no signs, but they will continue to be tested yearly. I don't want to scare my kids by keep them out of soccer, swimming, running in PE at school. etc, but I always worry that maybe something could happen to them like to their dad. I asked the Dr. about it but never got a straight answer. Am I putting them in danger by allowing them to continue with sports? Any info. you can give me will be very much appreciated. Thank you.

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    [Re: HCM kids and sports]

    Author: DENNIS J.BASSETT (---.ts14.qui.ma.net1plus.com)

    Date: 03-26-02 18:48

    DARCY you should look into genetic testing for your children. We have 2 boys and a girl, ages 18 -21 -24. We waiting for results from BRIGHAM- AND-WOMENS in Boston. They did say it would take along time. DennisDarcy wrote:

    >

    > Hello,

    > My name is Darcy and I just came across this board while

    > looking for info on HCM. I lost my 38 yr old husband, ten

    > months ago, suddenly to a heart attack while he was playing

    > basketball. The coroners report determined the cause of

    > death to be HCM. He never had any symptoms. We have two

    > daughters that have been tested by a cardiologist and they

    > have no signs, but they will continue to be tested yearly. I

    > don't want to scare my kids by keep them out of soccer,

    > swimming, running in PE at school. etc, but I always worry

    > that maybe something could happen to them like to their dad.

    > I asked the Dr. about it but never got a straight answer. Am

    > I putting them in danger by allowing them to continue with

    > sports? Any info. you can give me will be very much

    > appreciated. Thank you.

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

    [Re: HCM kids and sports]

    Author: Ronnie (---.tnt1.columbus.ms.da.uu.net)

    Date: 03-26-02 18:58

    Sorry to hear about your husband Darcy. As for your kids, that is a tough question. Your family now has a history of early death due to HCM. The decision to let your kids play sports is one that you will have to make with your doctors input. I wish you and your family the best.

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    [Re: HCM kids and sports]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-26-02 20:27

    Dear Darcy,

    I'm so truly sorry for your loss. Sadly, you are not alone in this experience. I understand your worry even though the kids tested negative. Doctors have to cover their *** re: insurance, so he can't say nothing will ever happen to the kids or he could be sued. This is just the way many of them are.

    I wish I could answer your question about exercise. From what I've read, it is usually the varsity-level athletes that "go." I don't know that anyone can really answer it. However, Lisa, the HCMA president may have some insight for you. You can call the office and make an appointment to speak with her.

    Dennis has a good point about genetic testing; I second the motion. If they have the genetic markers, then they can be evaluated for an implantable defibrillator which could save their lives if they developed ventricular tachycardia or v. fibrillation suddenly. People can live long lives with the ICDs.

    Please keep us posted on how you are doing.

    best wishes,

    Sarah

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

    [Re: HCM kids and sports]

    Author: KAREN E (---.proxy.aol.com)

    Date: 04-03-02 21:36

    This is one of the most diffcult challanges we face as parents of children with HCM. I have 2 children son dx 7 yrs ago with HCM an avid hockey player. As soon as dx was made MD said no more competitive sports and I supported him completely but frankly it broke our hearts as parents. But as with many facets of this dz we eventually realized we were lucky to have the chance to make the decision at all reason: he had a syncopal ( fainting ) episode which led to the dx ,recovered spontanousely what if he had not recovered? We have no family hx as a barometer so we made the best decision we could. He is now 20 doing well.

    My daughter diff. story conflicting dx, conflicting advise not sure if she had dz.no symptoms borderline septal wall thickness .But when she was 13 we decided no more competitive sports.That was the best decision for us to make as her parents still very painful process did not get easier going thru it a second time. Still have my doubts sometimes if we made the right decision for her but as parents are are not always second guessing. She is 16 and doing well

    Hope this helps anyone who is going thru this process.

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    [Re: HCM kids and sports]

    Author: lisa (208.47.172.---)

    Date: 04-05-02 17:16

    Hello all...

    the Key to your question is the fact that the kids screen clear at this time. There is no indication that they are at high risk of sudden death at this point. You must keep screening them and IF something shows up THEN worry about taking them out of sports.

    For now as hard as it may be ...let them be kids.

    I too am sorry to hear of your loss and hope you are finding the HCMA helpful.

    Best wishes,

    Lisa Salberg

    President

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

    [Re: HCM kids and sports]

    Author: Sue Ellen (---.gv.shawcable.net)

    Date: 04-12-02 15:54

    The murmur caused by my HCM was detected as early as my mid-teens, but I didn't really "discover" sports really until I was about 22. Then I played about 30 hours of tennis a week for approximately 6 years, when I wasn't playing tennis, I was either surfing or mountain biking. I never even realized that I was engaging in high-risk behavior, other than all the partying inbetween sporting events.

    Then when I was around 40 I finally had to have my heart measurements taken and what do you know - pretty nasty numbers. I sure am glad I wasn't scared away from sports in my 20's though. I loved my games and can't imagine enduring a "waiting to die" mentality from such an early age. It's not right for people in their 40s either and I'm not going to go there if I can help it.

    The first year or two that I knew how bad my HCM was I was sitting around a LOT not doing much that I considered fun. I am not going to live like that anymore. To me - that is not living. Could my husband lose me sooner because I want to LIVE? Yes. Is it still worth it? You bet. What's wrong with letting people live their lives and enjoy their lives, such as they are? My husband can remember me climbing mountains instead of sitting in a chair waiting. I think I like that.

    It's not about how long you live, I know that for sure. I know 90 year old ladies who have lived less than some 22 year olds, as far as exploring an interesting life, world travel, etc. It's about what you do with your life, not how long you can hold out, sitting in a rocking chair.

    No offense. This is what I tell my own Mother when she raises an eyebrow on my acitivity level. I figured if she can take it, maybe it might be of use to others too. It's rock-solid thinking, but I realize life-length is an emotional issue for most people I guess. Hope this doesn't bug anyone. It's just my opinion.

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    [Re: HCM kids and sports]

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

    Date: 04-14-02 12:17

    Sue Ellen,

    While I can agree with you in part there is more than meets the eye when living with HCM. I do not mean this posting directly to you or your posting, I think you bring up some good points.

    Yes, I believe in LIVING ones life rather then just being alive. And Yes I agree that we should not let the fear of death stand in our way of happiness, whatever that means to each individual.

    However, The vast data available to us today show us that with proper risk stratification we can find those at "high risk" and treat them appropriately, granted it is an imperfect science to discover all at high risk but we are getting so much better. If you are detirmined to be at high risk then...take action....and LIVE without the fear. BUT if you are not taking the steps to protect yourself, then is that really living?

    Further, is participating in sports worth living itself if you are a high risk, have not done proper risk statification or you simply want to participate? I believe that is a sheer lack of responsible behavior and frankly selfish. What is left behind should the worst happen? A team of stunned friends who must live with the image of that death for the rest of their lives? Your families grief that if only they held you back you may have lived a long and happy life? Legal problems for the schools, sports, and families?...And if your are an adult what about the burden left to your spouse, children and family?

    While it is OUR Life... one can not help but understand ones importance to others and the responsibilities we have to these people.

    I know many can sound out on there views here and I encourage you all to do so...My point of view is that of an adult who was diagnosed at age 12 w/ HCM and has lost 4 family members to the condition. I was unable to compete in high school level sports, even though I was rather good at softball and gymnastics...but you know what... I am a VERY HAPPY adult with a great little girl of my own, I would NOT change a thing!

    Best wishes to all!

    Lisa Salberg

    President, HCMA

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

    [Re: HCM kids and sports]

    Author: John S (---.qc.sympatico.ca)

    Date: 04-22-02 16:32

    When I wasin my early 30s I was diagnosedwith hcm At the time they didntseem to have alot of information on it..After many tests I was told to go on living my life and come back for check ups..I have always enjoyed some sports and i have canoed, played squash 4-5 times aweek(retired from that becuase my knees gave out)swam and recently 2 years ago found mountain biking What a greatsport for conditioning physical and mental stress relief. Now my piont....I dont want to give up on my off rosd biking but I prefer not to die as well . Are there any established guidelines you ar3e aware of regarding risk stratifacation in relation to strenuous exersie or sources of information I can look to .Has anyone done any resarch or studiesin this area. MY main problem appears to be ventricular arrythmias and I am presenty taking 200 mg daily of Ammiodarone for the last 6 months ..I have not been getting any regular aerobic exersie for at least 12 months for fear of triggering a heart attack...Generally my whole days focus seems to be on my chest and any sensation arising from there..Im gquessing that I have had more symptoms since being on the medication than not and ifeel the need to return to some heavier activity to feel better over all ....Any thoughts or suggestions out there Please........thank you JS
    NOTE: This is a post from the previous forum message board.

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