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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    [HCMA]

    Author: Chuck Morrell (---.proxy.aol.com)

    Date: 05-25-02 23:09

    To everyone: After being exposed to HCM and sudden death in my family for many years , I must tell you that this Forum is doing a tremendous service to everyone seeking answers. Lisa has done a wonderfull job. Sarah you are doing great.

    You folks are very lucky to have such a great sourse of information.

    Everything that I had to learn about HCM came thru personal experience.

    It is much better this way.

    Hope your meeting goes well next week, Sincerely...... Chuck Morrell

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    [Re: HCMA]

    Author: Connie (---.proxy.aol.com)

    Date: 05-26-02 10:36

    I AGREE WITH CHUCK..100%.................... I couldent even remember the letters to HCM when i first came here.........there is a wealth of information here ...especially from the people who have been dealing with HCM for many years. Like my MOMA said "THERES NO EXPERIENCE LIKE BOUGHT EXPERIENCE". Connie

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    [Re: HCMA]

    Author: Judith (---.atlantic.net)

    Date: 05-26-02 11:55

    I, too, agree! There is so little known about HCM and it is so often overlooked by our doctors. I have HCM and have recently had "septal ablation" at Emory Univ in Atlanta. I feel GREAT!!! Will be glad to reply to anyone needing info about this relatively new procedure.

    Thanks

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

    [Re: HCMA]

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

    Date: 05-26-02 12:18

    Dear Chuck,

    Thank you very much. Just trying to give a little back.

    Sarah

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    [Re: HCMA]

    Author: Patricia A Grall (---.dwave.org)

    Date: 06-11-02 15:02

    I also had Septal Ethanol Ablation 3 weeks ago (and an ICD placement). I choose this over the Myomectomy for three reasons:

    1. Avoidence of cardiopulmonary bypass and its associated risks

    2. Shorter hospital stay and recovery time

    3. Less espensive.

    I spent alot of time researching both and found this to be - for me - the best choice. I had the procedure done at Loyola University Health System near Chicago by Dr. Fred Leya. He, his staff and the hospital staff were excellent. I had also been seen by one of the advisors to this group in Mayo prior to making the choice for the ablation.

    I am not in the position to speak to the benefits yet. I will continue to assess myself as the weeks pass and only then willI know how much I improve. I definetly have seen some imporvement already. I will speak to more of this at a later date.

    I like others have lived with this for 17 years, quite happily I might add. It can be, with the proper care, a very livable disease. I am now 55. In the past three years my symptoms have increased. My septum was 33 mm.The time came when my symptoms could no longer be controlled with medication, hence, the ablation, This hopefully will buy me some improved "quality of Life" for some time.

    My advise to others is to go and educate yourself as best you can on this disease and it's many different treatments. One good site is " UP TO DATE" at www.uptodate.com. I also got great informatiion from my local hospital Libraian.

    Educating yourself takes time and energy. As they say... you are worth it. Get involoved so you can make the best choices for yourself . My life is good. My attitude has a lot to do with this. I have greatly lessened my fear through the educatiion process. It works for me.

    This site is great. It is my first time to this site and I have enjoyed it very much. I continue to learn every day and my hope for a healthier life just gets better. Thanks for letting me share. Sorry for my spelling errors.

    Patricia Grall

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

    [Re: HCMA]

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

    Date: 06-11-02 20:59

    Patricia,

    Glad to hear you are doing well and hope to see you on the message board more often!

    Please make sure you send youe mailing address into the HCMA so that you will recieve our newsletters.

    Best wishes and keep in touch,

    Lisa Salberg

    President

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

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