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  • HCMA Heartlink Newsletter

    [HCMA Heartlink Newsletter]

    Author: Paul Murphy (---.dsl.mindspring.com)

    Date: 03-30-02 00:59

    I just got my first HCMA newsletter in the mail yesterday and am enjoying all the articles and information it contains. Kudos and thanks to Lisa and all those involved in putting it together! One request though-could the 'important dates' information from the front of newsletter be posted on the HCMA website? I would have LOVED to have gone to the ACC meeting here in Atlanta last week (looks like there was an HCMA booth there), but I didn't know about it until the newsletter came yesterday.

    Let me also give an update on our now 12 year old daughter, Caitlyn, who was diagnosed last September with HCM with an obstruction. She is still symptom free, for which we are very thankful (her condition was discovered from a routine doctor visit; we have yet to uncover any family history of HCM). She is now up to taking 160mg of Verapamil a day and her cardiologist is starting to see some good results from that. She is feeling no side effects from the meds yet. She's been having echos and EKGs about every 6 weeks, plus occcasional holter and stress tests. Caitlyn is very good about taking her medicine, but she gets angry about her condition when she has to go to the doctor appts. or he limits her activities. She doesn't like to talk about it and doesn't want any of her friends to know anything is wrong. I feel so for her finding out about her HCM at exactly the same time her world was changing so much already (middle school, puberty, not to mention 9/11). We just pray that she remains stable throughout all these growth years.

    We're very happy with her pediatric cardiologist, Dr. Kenneth Dooley. He's part of the Sibley Heart Center of Children's Healthcare of Atlanta and there's something like 20 ped. cardiologists in the group and they go over their cases with each other at weekly conferences. We found out about HCMA last Fall and joined right away. The HCMA book is a godsend and a must read for I would think anybody in this discussion forum. Now we're hoping to meet other HCMA members and learn more at the upcoming meeting in NJ and the summit in October.

    Paul

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    [Re: HCMA Heartlink Newsletter]

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

    Date: 03-30-02 20:01

    Dear Paul

    I was very angry for the 15 years of my HCM life (I was diagnosed at 13). It was only after reading "Why People Don't Heal and How They Can" by Caroline Myss was I able to learn how to be grateful for the medication for allowing me to lead a quality life. Every six weeks was way more than I ever saw a doctor, ever, so I can understand her anger very well. I'm sure Caitlyn knows that she can talk to you, but I'm sure you know that sometimes talking to your parents isn't enough or difficult. If you join the HCMA's network, they may be able to find another girl in your daughter's age range for her to be an e-mail pal with. Or if she wants to e-mail me, that is cool too (I'm 33).

    Great suggestion about the web site calendar. I'll pass it along to Lisa and Ellen--and I'll see you in June and October (god-willing).

    Take care,

    Sarah

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

    [Re: HCMA Heartlink Newsletter]

    Author: Joan Michaelis (---.proxy.aol.com)

    Date: 03-31-02 14:04

    I would likevery much to go to the meeting in October and would like to know more about it please.

    I have been living with this disease since they called it IHSS. I am 68 years old, not have a pacemaker and having problems. It must be hard for a young person to have it and I try to get my kids to be checked all the time, one will and the other refuses.

    You will get used to the doctor's appointments and all the other things that go along with this medical issue. Years ago when my Mother was alive they did not even know about such a disease and I lost her at a young age so you should be happy that they know so much more about it............Good luck. Joan

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    [Re: HCMA Heartlink Newsletter]

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

    Date: 03-31-02 23:01

    Dear Joan,

    There are two "meetings" coming up. The first is the HCMA's Annual Meeting, May 31st and June 1st. This is in New Jersey and includes presentations by Dr. Maron, Dr. Winters and Dr. Sherrid and a new Teen forum. It is only $25 to attend plus another $25 for a the banquet (but two meals are included in the first 25 dollars). June 3rd is the golf tournament fund raiser, $115. The meeting is very much for the whole family; all HCM members, or people considering becoming members, are encouraged to attend.

    The second meeting is a medical conference called the International Summit II: Diagnosis and Management of HCM, Sudden Death Prevention and Athletes. This is almost exclusively doctors talking to doctors and will be in "doctorese" and it will be graphic (in the medical sense). Lisa will be making a presentation about on-line support groups. The summit costs several hundred dollars (it was $250, I think, last year). Here is the web link for it (this is not sponsored by the HCMA):

    http://www.futuraco.com/Maron_2001.htm

    The most recent newsletter from the HCMA has all the details as well. You can get the newsletter by becoming an HCMA member.

    Sarah

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

    [Re: HCMA Heartlink Newsletter]

    Author: Paul Murphy (---.dsl.mindspring.com)

    Date: 04-02-02 06:47

    Thanks for the responses. Yes Sarah, the teen forum mentioned for the upcoming HCMA meeting in NJ had already caught our eye. I also plan on sending in a network questionaire. We're planning on my wife and Caitlyn to come to the HCMA and hopefully myself, if I can arrange the time off.

    Paul

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    [Re: HCMA Heartlink Newsletter]

    Author: Lisa (---.parnj1.netplay.net)

    Date: 04-02-02 09:02

    Hello all!

    Thanks for the kind words about the newsletter. The Important dates will be posted soon. Also I wil have Lee Ruson former New York Giant and 2 time super bowl champion ,speaking at the meeting on June 1 2002. The topic of his talk is " who are you?", a unique view from a man on the top of his game taken out by an injury and forced to rebuild his life. I thought the topic was perfect for our younger members who may not have sports in their lives anymore due to HCM.

    I have to run now I am off to take my daughter for her echo screening - its been 2 years and she is now 6...so far no HCM ...my fingers are crossed and I hope it stays that way...wish us luck!

    Best wishes,

    Lisa Salberg

    President

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

    [Re: HCMA Heartlink Newsletter]

    Author: midgerollins (---.obmo.socket.net)

    Date: 04-03-02 19:16

    Joan, I too have had this since it was IHSS. I am 55. Have a pacemaker on one side and ICD on the other. I developed further problems last summer and with some medication changes, ( and lifestyle) I seem to be doing a little better as long as I dont exert. I too bug my kids to get tested, one will readily the other just did and wont again. I would love to email with you. Midge
    NOTE: This is a post from the previous forum message board.

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