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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  • Our Story

    [Our Story]

    Author: betsy trawick (168.8.208.---)

    Date: 10-08-02 11:36

    Just found this website and message board a couple of days ago and have found it to be VERY informative, supportive, and I guess, comforting. In 1989, my youngest child, Casey, went in for a routine physical and doctor heard a slight murmur - long story short, we went for an echo and HCM (then called IHSS) was detected. Immediately, the entire family was asked to come in and I (age 35) and my other son, Evan, (age 7) were diagnosed with HCM. At the time, not alot was known other than - no sports, don't know if meds will help or not, etc. We were left questioning the whole thing - so we also could walk out the door, be hit in the head with a tree limb and die too! We continued to live our lives normally - worried about the prospects of the boys never being able to be involved in athletics as we all LOVE sports. Evan and Casey continued swimming on a swim team and playing baseball through their youth - Evan being a state champion swimmer as an 8, 9, 10, 11 and 12 year old. Then football entered his life - his real passion - he played until the high school varsity called - and we realized, no way - he can't play at this level. So he was not allowed to play - was devastated, depressed, etc. But we got through it. During all this, Casey, who had a more severe case of HCM, was implanted with a pacemaker in 1990(proved to be a miracle for him-results were outstanding), experienced VTach episode in 1994, and finally had myectomy last Dec.(again, a miraculous procedure for him). It was wierd how the myectomy came about - he was living life to the fullest, we went in for a regular checkup and his gradient had suddenly quadrupled since the last appointment. Why? Can anyone explain?

    >Evan and I talked alcohol ablation with our cardiologist last Jan. - never really went very far with it- just a thought of something in the future, possibly. And then, July 4th! Our now 20 year old college junior, Evan, went out for a jog around the neighborhood and on his 2nd mile, he collapsed. Neighbors and paramedics were on him immediately. There was absolutely nothing anyone could have done to save him. I am very thankful, however, that Evan was allowed to live his life as full as he possibly could - he still dreamed of playing football - and when he entered Ole Miss his comment to me was - "mom, I'm going to walk on the team - no one here in Mississippi will know about my heart condition" - fortunately, he didn't go through with that! But the point it, what is life really all about anyway? As we understand HCM, there is no real cure - yes, we can take meds., have surgeries, etc. and relieve symptoms but we still shouldn't lead an active lifestyle - and I just don't really enjoy being a couch potato.

    > I am so thrilled to have found this message board. The messages I have read about side effects to meds, new ideas to help HCM, getting a HCM specialist doctor, the conferences held, and ideas for helping keep my son's memory alive have been a tremendous support to me. I am an administrator in an elementary school and we will be focusing on Heart Week in February like we always do - this year will have a little more meaning and impact for me - I would LOVE for any of you to share ideas about something we could do at the school during this week to raise awareness and money. Thanks for letting me post this LONG email. God bless all of you with HCM and those who have also lost loved ones - especially the young ones!

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    [Re: Our Story]

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

    Date: 10-08-02 16:56

    Betsy -

    Thank you for sharing your son and your wonderful memories with us. I am sorry for your loss and hope you can find some comfort here, amoung friends who understand what life with HCM is really like.

    I hope you stay on the board and get involved with some of our programs.

    Best Wishes,

    Lisa Salberg

    President, HCMA

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

    [Re: Our Story]

    Author: Teri Emme (---.midco.net)

    Date: 10-08-02 17:47

    I enjoyed hearing your story. On August 23, 2002 My little cousein who was like a sister to me died from HCM. She was 13 and had just started school and the were joggin there 2 minute warm up lap when she just collapsed. The doctors did everything to try and save her. There wasn't any signs that she had it. We got the Autopsy report back that told us about it. The whole family has to go in and be tested for it. Turns out her mom and her little sister, now 4yrs old, also have it. My grandma ended up having it and the rest of the family hasn't been tested yet. I don't know whether it is harder not knowing that she had it or if it would have been any easier if we did know. They placed a defibulator in her mom, my aunt, but were just gonna watch her little sister. They say that HCM skips a child, not a generation ,but there is no real proof I don't think. Thanks for Letting me share my story. It heelps being able to talk about it with ppl that know about it.

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    [Re: Our Story]

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

    Date: 10-08-02 17:51

    Teri -

    God Bless your little cousin -

    I am sorry for your loss, you say it skips children, this is not true at all they just may not have a great deal of thickness yet. I would suggest a specialty center evaluate the little one as she may need a device as well. We have lost little childen to HCM as well as teens. For more information contact our office.

    # above in contact information.

    Best wishes,

    Lisa

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    [Re: Our Story]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 10-08-02 17:51

    Teri,

    I am so sorry for you and your family's loss. I am glad that your family will be tested now. Please follow through on your own screening. I know your aunt and grandmother and other little cousin are happy at least that they now know they have HCM and can adjust their lives accordingly to avoid what happened to the 13-year-old. Thank you for sharing her with us and welcome to our world and our board.

    Reenie

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    [Re: Our Story]

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

    Date: 10-09-02 00:07

    I'm so sorry for everyone's loss.

    Bestsy,

    You may want to talk to your school about installing automatic external defibrillators (AEDs) in the school, especially near the gym and playing fields as you need to be cardioverted within 3 minutes if you have an episode of v fib. Also, screening all the student athletes for heart problems is something communities are looking into. Please call the office for more info.

    Sarah

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    [Re: Our Story]

    Author: betsy trawick (168.8.208.---)

    Date: 10-09-02 15:56

    Thanks for sharing. It definitely helps to hear others experiences. And I do understand about the knowing/not knowing. I would love more information about the defibrillator surgery. I believe this is the route I may take for myself. Is it a pacemaker? My husband keeps saying that's all it is, in which case, I am not a candidate for it - but after reading messages on this board, I am thinking it is something very different. Thanks again for sharing.

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    [Re: Our Story]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 10-09-02 16:14

    Betsy,

    An ICD is not a pacemaker. It can contain a pacemaker but it is more a defibrillator. Have you ever seen tv shows where the patient has a heart attack and they have to put the paddles on them to shock their hearts back into rhythm? This is what a defibrillator is. Only an ICD (implanted cardiodefibrillator) is implanted in your chest and constantly monitors your heart to determine whether or not you need any pacing or shocking to keep your heart in rhythm. Now, that being said, not all defibrillators have pacers in them.

    There are several factors involved in determining whether or not you need an ICD. The doctor will take into consideration your family history, (including sudden deaths), septal thickness, whether or not you've ever fainted, or nearly fainted, if you've had a stress test and your blood pressure didn't react by raising, and if you've ever had any life-threatening arrhythmias such as ventricular tachycardia. There may be more they look at, but these factors are certainly important.

    The surgery itself isn't a terribly big procedure. My husband had his implanted and was out of the hospital the same day. Not everyone has that experience, so don't automatically think that's the norm. I don't know if it is or not. But only a specialist can help you determine whether or not you need one. Please speak to your doctor and tell him your questions, fears, and concerns. If he's good, he will answer everything or find out if he doesn't know.

    Good luck and keep us posted on your decisions.

    Reenie

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

    [Re: Our Story]

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

    Date: 10-09-02 17:34

    Dear Betsy,

    Reenie is correct (as usual!).

    ICDs are NOT pacemakers, although some ICDs are _also_ pacemakers if you need one too.

    Pacemakers just control the heart rate and do not have any shocking ability in them ever.

    ICDs don't pace, they just shock.

    ICD/pacers do both.

    S

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

    [Re: Our Story]

    Author: Teri Emme (---.midco.net)

    Date: 10-10-02 21:34

    Thank you for all of your concerns. It helps alot to hear other ppls experiencesand the information that everyone provides on HCM.

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

    [Re: Our Story]

    Author: betsy trawick (168.8.208.---)

    Date: 10-11-02 14:41

    Thank you so much for the great information. Who is your specialist? I have been seeing what I thought was a good cardiologist at Emory University here in Atlanta - although I feel my doctor is good, he is not a specialist in HCM and I feel was not very aggressive with my son, Evan - now I certainly have no anger towards the way he handled Evan's HCM because Evan would have probably run the other way if any mention of surgery had been made. Anyway, I do feel it is time I spent some travel time and money to get with a true specialist in HCM if I am to continue to live a long life. My youngest son is being followed by people I feel are more specialized with HCM but there again, maybe not. Again, this board and your information is a true help.

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

    [Re: Our Story]

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

    Date: 10-12-02 09:41

    Dear Betsy,

    Please call the office at 973-983-7429 to get info on specialists for you and your son.

    I think everyone in this thread sees someone different!

    take care,

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

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