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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  • Your Web-site

    [Your Web-site]

    Author: Joanne Bintliff (---.proxy.aol.com)

    Date: 05-05-02 07:09

    I have read your entire web-site. You make it sound like this disease is not serious. I found out I had cardiomyopathy about 10 years ago. Just recently I flew to FL from NJ and had severe aches in my arms. This alerted me to see my cardiologist. 10 years ago my EF was 40% which is extremely mild. This week my EF is 25% which they say is extremely severe. I also have blood pooling in my left ventricle. Which is a blood clot. I will be on blood thinners for the rest of my llife. My father died from this at age 58. He had sudden death.

    I need to know at what point do they recommend surgery. Such as pace maker or heart transplant. I feel I would be a good candidate for transplant. My arteries are completely clear. My energy level is not good. I am only good for about 4 hours before I need a nap. If my EF went from 40 to 25 in 10 years then what is my heart function going to be by the time I am 50 years old. I just turned 40. I am too young to die. My children are 12 and 10. I need help!!!!!!!!!!!!!!

    Joanne Bintliff

    (Just released from Deborah Heart and Lung Center)

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

    [Re: Your Web-site]

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

    Date: 05-05-02 10:50

    Dear Joanne,

    HCM is a very broad name for a very broad disease. Many people with HCM don't have the sudden death strain of it, and even those that do, can live a long life. The web site is designed to give people an overview of the disease. It would not be possible to present every permutation of the disease progression on the site as everyone --even in the same family -- can have very different experiences.

    The key is to having the proper treatment. The previous generations died more often from this because it wasn't a known disease and treatments were limited at best.

    I'm very sorry for the loss of your father, but it doesn't mean you are going to go to.

    Please call the HCMA office at 973-983-7429 to get the name of an HCM specialist so you can be evluated for an implantable defibrillator. You can read the other threads in this board on the ICD. They make combo ICD/pacemakers, too. The ICD shocks the heart back to normal when it trys to go into a potentially fatal arrhythmia. It is not possible to tell you here if you are a candidate for an ICD or pacemaker, but the HCMA can hook you up with the most qualified person to be able to do that.

    Please call first thing Monday morning.

    Sarah

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

    [Re: Your Web-site]

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

    Date: 05-05-02 11:32

    Joanne,

    I am sorry to hear that you lost your dad to HCM. I do not believe the web site minimizes the seriousness of HCM, it is a balanced site, some people present severe symptoms and disease progression then others.

    Regarding your case, it sounds to me like you have a "burnt out" case of HCM, this meaning that your heart may have "crossed over" to more of a dilated cardiomyuopathy. In HCM you will normally note ejection fractions of 60+, in your case the EF has lowered a great deal and therefore you also have a change in the structure of your heart. There are medications such as ACE Inhibitors that can help your heart fuction, if in fact you have a persentation of the condition that is more like a dilated cardiomyopathy, Althought the numbers are not that great in the medical data it is estimated that 10-15% of cases of HCM turn into the "burnt out" form.

    I do have a bit of personal experience with this as this is what has happened to my father. About 1 year ago his EF was about 15%, he had been in chronic A fib for several weeks and his heart had thinned out a great deal. Now one year later he has a defib., new medications and his EF is around 40%, Yes he gets tired, but he is feeling rather well.

    Transplant may become an option for you, as it may for him. I would strongly suggest you see a doctor how specializes in HCM, I can recommend several. Dr. Barry Maron at the Minneapolis Heart Institute , is who I see as my HCM specialist, then I am followed at home be a local cardiologist. My point is you do not have to keep traveling every time you need a Dr's appointment.

    Have your children been screened yet?

    Wishing you all the best,

    Lisa Salberg

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

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