If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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  • Son Diagnosed w/ HCM

    [Son Diagnosed w/ HCM]

    Author: Brody Barnes (61.73.49.---)

    Date: 10-28-02 07:57

    Last week after complaining about shortness of breath and chest pain I took my son in to see the doctor. Seeing an abnormal EKG, we were sent to a large medical center here in Seoul, Korea (Asan Medical Center) to see a specialist. After a Echocardiagram he was diagnosed as having HCM.

    I and my wife of course are bewildered trying to find factual information. As a very active 17 year old who runs cross-country, is an Eagle Scout, and has practiced Tae Kwon Do martial arts for 10 years this is a bit overwealming for us.

    We understand it is a life-long condition. At this time it appears to be minimal, but we do not know if it will continue to progress as he ages. Today he was started on beta-blocker drugs.

    It is good to see a site of people who share this condition, or have loved ones who have HCM. We are still learning what will need to change in my son's life, what he will be able to do in the future and what this will now prevent.

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

    [Re: Son Diagnosed w/ HCM]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-28-02 09:33

    Dear Brody ... you found a wonderful site that will provide you with unconditional comfort, support and education! Call Lisa, HCMA President ... she can provide you with all the information you, your family and your son will need! You can reach Lisa at

    973-983-7429, email: [email protected]

    You are not alone! ~Erica : )

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

    [Re: Son Diagnosed w/ HCM]

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

    Date: 10-28-02 10:37

    Dear Brody,

    HCM is genetic. You and your wife, and any other children, should all get ECGs and echos to make sure you are clear. The guidelines suggest echos every 5 years for adults and 1-2 years for kids. Your son will probably get echos every year while he is growing and every 2-4 after in order to watch his hypertrophy.

    Please read the rest of this web site for a lot of good information about HCM. There is also a book available for $25 that answers a lot of questions, too.

    Beta-blockers are good drugs. However, side effects include fatique. If your son's shortness of breath gets worse on the beta-blocker, call the doctor as a rare side effect of bbs is some asthma-like stuff. Also note that he should not stop taking them suddenly or he will feel worse. There are several different kinds of beta-blockers, so if he doesn't get used to the first one, there are others to try. Despite the side effects (which include weird dreams), they are very, very worth while medications.

    HCM is different in each and every individual. Most HCMers life a full life span, despite some scary statistics you may see floating around. While heavy-duty competitive sports are usually discontinued, especially in the young, your son will probably be able to continue some of his activities. The key is to keep him from getting depressed and sitting around the house thinking he can't do anything. He needs to learn to listen to his body (which is sounds like he already has a handle on) and to follow its lead --and also to listen to his doctor and take his or her advice.

    We had a number of Japanese doctors here in the states earlier this month for a summit on HCM, but I don't know of any Korean specialists off the top of my head.

    If you can travel, it may be worth your while to take your son to see an HCM specialist.

    Please read the older postings on this board as they are chuck full of good info. Also find Adam P's post. He is 22 and has HCM and will correspond with any teen who wants to talk to someone about this stuff.

    Take care,

    Sarah

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

    [Re: Son Diagnosed w/ HCM]

    Author: Lisa Salberg (208.47.172.---)

    Date: 10-28-02 12:19

    Brody,

    Welcome to the HCMA and the message board. We are happy that you found us and we know you must have hundereds of questions racing through your mind. Take your time to read some older posting and use the search feature to help you find items of interest to you. I can not say strongly enough how improtant Sarahs message is and that the need for family screenings is critical.

    Should you need further information please let us know.

    So welcome to the club you never wanted to join...but we are glad you found us!

    Best wishes,

    Lisa Salberg

    President

    HCMA

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

    [Re: Son Diagnosed w/ HCM]

    Author: Sharon (---.ph.ph.cox.net)

    Date: 10-29-02 12:57

    Hello Brody,

    Welcome to the HCMA message board. I am so grateful you and your family have taken the first steps to becoming an educated HCM family. Your son's training as an Eagle Scout, and has practice of Tae Kwon Do martial arts will allow him to realized life is full of opportunities and joy. HCM is only a hurdle in his life not an end to it.

    My son, Anthony, died from undiagnosed HCM at age 20, two years ago last July. Anthony was an Eagle Scout, an honor student and a football player at Kansas State University. If he had known his heart was sick his training would have allowed him to find the "plan B" for his life.

    I applaud you for taking the steps to find the answers regarding HCM. This is a wonderful forum for you, your son and your family. Welcome and I wish all the best for you and yours in your pursuit of knowledge and understanding to this sometimes tragic disease. Early detection and education for the families and doctors is the key to long productive lives for those efflicted with HCM. You have taken the first steps and you should be commended!

    Best Regards,

    Sharon Bates

    Anthony Bates Foundation

    <www.AnthonyBates.org>

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

    [Re: Son Diagnosed w/ HCM]

    Author: Sharon (---.ph.ph.cox.net)

    Date: 10-29-02 12:57

    http://www.AnthonyBates.org

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

    [Re: Son Diagnosed w/ HCM]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-29-02 18:04

    When a Loved One Has Heart Disease

    http://www.heartcenteronline.com/myh....cfm?ARTID=550

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

    [Re: Son Diagnosed w/ HCM]

    Author: Brody Barnes (218.145.25.---)

    Date: 11-01-02 20:16

    Sharon,

    thank you for the email and sharing your experience, I know at times it must be difficult. You help me realize that even though our family is facing a challenge, it we have opportunities to succeed.

    Brody

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

    [Re: Son Diagnosed w/ HCM]

    Author: Brody Barnes (61.73.20.---)

    Date: 11-01-02 21:19

    Lisa and all who have responded. Thank you for the support. I am still reading, researching and learning...you are providing a great resource. Through this I and others are finding answers, strength and hope, thank you again.

    Brody

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

    [Re: Son Diagnosed w/ HCM]

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

    Date: 11-03-02 16:05

    Brody - that is what we are here for. I know the learning curve takes some time... do not try to become an overnight scholar on HCM... take your time as it is stressful, complicated and emotional.

    We are here whenever you need to us.

    Lisa

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

    [Re: Son Diagnosed w/ HCM]

    Author: Brody Barnes (218.145.25.---)

    Date: 11-15-02 02:55

    All,

    on the recommendation of the peditrician, I took Lee for a 2nd opinion at another major medical center in Seoul - Samsung Medical Center. The doctor there agreed with the initial doctor's analysis - Asymetric HCM. All functions appear to be ok, but the left ventrical has lower capacity. He did change the medication from 50mg Atenolol to 25mb Atenolol and added 25mg of Losartan. Lee's symptom have decreased but he still has some shortness of breath, but he is very lethargic to the point of falling asleep in his classes. We will see if the change of medications helps.

    Thank you all for the help. The good news for Lee is that he has been told by two cardiologists that he may resume some exercise activities and school activities - at a reduced rate that he did before.

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

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