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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  • HCM

    [HCM]

    Author: Phyllis Petrowski (---.NYCM.splitrock.net)

    Date: 03-12-02 20:47

    My 23 year old son died from HCM. He was a Ensign in the Navy and was studying to be a jet pilot. You can imagine the medicals he went through. From recent reports I have seen, it has been said that HCM is genetic. In our case, my husband and I and my two daughters all have had echocardiograms have come up negative. How can it be genetic if neither my husband or I have it?

    Still Grieving Mom after 13 years.

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

    [Re: HCM]

    Author: Cathy Roberts (---.dialup.optusnet.com.au)

    Date: 03-13-02 03:39

    Dear Phyllis

    Hi, I am new to all "this cardiomyopathy stuff", but after reading your email I felt I really wanted to reply to you, I hope you don't mind. I am unable to give you any medical opinions because I am not in that field. Actually, I am still learning about Cardiomyopathy myself, but your story touched my heart, and I felt I may be able to give you a possible 'lead'.

    You may have read my "story" titled "My Husband's Diagnosis", a little under your email, so I won't go into all that again. I just wanted to let you know that we have not found any family link to this disease, yet. There is no medical history of any heart conditions is Neil's family, with the exception of Angina. Neil's younger brother and sister are yet to be tested, and we are still deciding how to go about getting our daughter tested without alarming her. On our first visit to the heart specialist, and subsequent visits, he has told us that it is quite possible that a virus Neil had, in years gone by, could have attacked the heart muscle, causing Cardiomyopathy. Neil has had a couple of overseas trips, so I am wondering if he could have picked something up from there.

    You mentioned that your son was an ensign in the Navy, and I thought perhaps he may have had some overseas tours of duty as well, there may be a link for you.

    Grief is very painful, and I feel deeply for you, particularly after 13 years grieving. I pray that you may find some comfort in my email, but most of all, that you would be surrounded by friends and family who would be able to support you through this time.

    Thinking of you in your loss,

    Cathy Roberts

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    [Re: HCM]

    Author: Phyllis (---.org)

    Date: 03-13-02 10:47

    Dear Cathy,

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

    [Re: HCM]

    Author: Phyllis (---.org)

    Date: 03-13-02 10:59

    Dear Cathy,

    Thank you for your reply. I researched all I could about HCM after Michael died and after 2 years of being obsessed, my husband said "enough". He was right of course. I had to get on with my life for my family's sake. However, lately tthere have been stories on TV that have had HCM as a subject that I think about it more.Thirteen years ago, a virus was mentioned and ruled out. The medical examiner and other heart specialists ruled that out. They concluded that it was a spontaneous mutation. I have two grandchildren and my daughter has told their doctor. She intends to keep on it. Your husband should be comforted by the e-mails you have received via this site. He has been given a chance at life and for all your sakes he should make the most of it. So many who have HCM did not have that chance. There must be a reason that he was diagnosed. In too many cases the diagnoses is made at autopsy as was my son's diagnosis. Good luck to both of you. You are in my prayers. Phyllis

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

    [Re: HCM]

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

    Date: 03-13-02 14:48

    Dear Phyllis

    I'm truly sorry for your loss. Since echocardiograms are not standard for physicals, this type of thing will keep happening. HCM is the number one killer of young atheletes. Perhaps if you talked to Lisa (HCMA president) about what you can do in your community to get echos for the local school's varsity athletes, you would be able to channel your grief in a more positive manner and help others at the same time.

    Also, many communities don't require an ambulance to carry a defibrillitor!!! Police cars should carry them as well, but they don't. Those are two other causes that you may be able to devote some time to.

    Your son can never be replaced but I think his heart would break if he knew that you were not living your life to the fullest. I hope I'm not sounding preachy. I lost my dad 2 years ago (very suddenly) and I miss him every day, so I know a tiny bit about how you feel.

    best wishes,

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

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