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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  • New to Website

    [New to Website]

    Author: Chris Brown (209.77.217.---)

    Date: 07-17-02 14:42

    Hello,

    I just found your website yesterday. And all I can say is WOW! After reading all the responses on the message board I had a hard time sleeping last night thinking about everything I read. I always felt alone, that I was the only person I knew with this condition. I learned a lot reading all the different stories.

    Here is my story.

    I was diagnosed with IHSS 8 years ago when I was 34 years old. I was put on medication and got my first pacemaker when I was 34. Since then I have developed constant Atrial Fib. And when I was 36 yrs old I developed subacute bacterial Endocarditis after going to the dentist, I took my premeds but the germ I received was resistent to amoxicillan. I received over 2 months of IV antibiotics-Rocephalin and Gentomyacin(excuse the spelling). And I have Scarring on heart from the Endocarditis.

    During the summer of 1999 when I was 39 years old I had 6 different episodes in the hospital when my heart was beating over 150bpm. The representative for Guidant convinced my Cardiologist to put a new improved pacemaker in. The dual chamber model pacer has controlled my heart from going into fast beats. and I have not been in the hospital since.Yea!

    My current daily doses of Medications:

    Metroprolo 400mg total

    Lanoxin .375

    Coumadin 8 mg

    Being a 42 year old male ,Height 6'1", weight 235. I exercise lightly 4-5 days a week on my exercise bike. I want to make sure I am being proactive not reactive to my health. I know I need to lose weight. What diets do you suggest? I saw the Atkins Diet on T.V. Last night.

    What are the long term effects of the medicines I am taking?

    I have 2 children . How often and when should they be tested? what type of test?

    I guess I have gone on long enough. I am glad I found you.

    Sincerely,

    Chris Brown

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    [Re: New to Website]

    Author: Lisa Salberg (208.47.172.---)

    Date: 07-17-02 16:10

    Chris,

    I am limited in time now so I will be brief - - WELCOME TO THE HCMA! YOU are not ALONE!!!

    I too had endocarditis after dental work - 12years ago - I had IV antibotics for 7 weeks - - what FUN..NOT.

    The kids should be screened every 12-18 months from age 10-20 and every 5 years there after.

    RE the drugs I will have to look it up and post later.

    WELCOME!! and I hope we see you often on the board.

    Sincerely,

    Lisa Salberg

    President

    HCMA

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

    [Re: New to Website]

    Author: Chris Brown (209.77.217.---)

    Date: 07-17-02 16:34

    Lisa,

    Thanks for the quick response. What type of screening are you talking about?. I have a referral for a chest x-ray for my 10 year old. Is a x-ray enough or should it be a full Echocardiogram.

    Thanks for the WELCOME.

    I have so many questions and concerns!!!!!. Again, I am glad I found the site.

    SIncerely,

    Chris Brown

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    [Re: New to Website]

    Author: Board Moderator (Sarah Beckley (---.50.1.89.chcg.grid.net)

    Date: 07-17-02 17:00

    Dear Chris

    Welcome to the board!

    Regarding screening: an echocardiogram is the only way to really know what is going on in there. In fact, I don't think x-rays are even used much for anything. I only ever get them if I'm admitted to the ER and I swear they do that just to make sure the darn thing hasn't moved out. ; )

    You can call the HCMA office at 973-983-7429 if you want the name of a pediatric HCM specialist (or an HCM specialist for yourself if you haven't found one yet).

    Everyone's experience of HCM is very different, so there are no general guidelines for how much exercise or what kind of diet to have. Common sense and reading your body and how it feels will tell you alot. As for diet, everything in moderation and you can't be far wrong.

    take care

    sarah

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    [Re: New to Website]

    Author: Brie Rodighiero (---.dialup.sndg02.pacbell.net)

    Date: 07-17-02 17:04

    Hey Chris. Welcome to the board!

    From what I think I've learned with checking this board often, is that children should be screened with a full echocardiogram. That is children who have family members effected by HCM. But I could be wrong! In any case....welcome aboard!

    Good luck,

    Brie

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    [Re: New to Website]

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

    Date: 07-17-02 18:24

    A full Echo, Ekg and a check up with a cardiologist who knows the family history of HCM. That is a screening.

    More later!

    Lisa

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    [Re: New to Website]

    Author: Chris Brown (209.77.217.---)

    Date: 07-18-02 16:45

    Hi Lisa And Sara,

    I have called the phone number you gave me the last 2 days and I have gotten your answering service. I left a message today.I was asking for a HCM specialist you recommend for Northern California.

    sincerely

    Chris Brown

    P.S.

    For your information I do not have a lot of family history information. My parents both passed away in a car accident when I was 3. I know my father was in the process of getting tests done for a possible heart condition. My grandmother is 92 years old had a triple bypass and a stent put in when she was 80.

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    [Re: New to Website]

    Author: Lisa Salberg (208.47.172.---)

    Date: 07-19-02 14:52

    Chris - I did get your message last night - but as much as I hate to admit this - Last night was not a good night for me (heart wise) - I had to take my own advise and just rest - I will try to get to you later today or over the weekend.

    Best wishes to all!

    Lisa

    PS - Feeling better now...but may be time to re-evaluate meds...not sure yet.

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

    [Re: New to Website]

    Author: Stephen H (---.114.93.164.connectohio.net)

    Date: 07-20-02 04:32

    Hi, Chris I'm new here too,I'm 45 about your age,and have 2 daughters aged 11 and 13.I'm newly diagnosed,you can read how mine came about,and if we have different conditions we are both in our 40's with kids.My buddies call me Stashua.I'd like to hear from you if you can offer advise or like dumb jokes.

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

    [Re: New to Website]

    Author: Board Moderator: Sarah Beckley (---.dialup.mindspring.com)

    Date: 07-20-02 12:45

    HOT TIP: Click on the author's name in any post and an e-mail message box will pop up if possible.

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

    [Re: New to Website]

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

    Date: 07-22-02 09:02

    Hi Chris,

    I had a question or two about the meds you are taking. I was under the impression that Lanoxin/digoxin was not a good medication for patients with HCM. It gives the heart a kick or a force which we try to actually reduce with the betablockers. Lanoxin doesn't allow our stiffened hearts to relax and allow the blood to enter the ventricles more easily. I'll double check that. Lisa & Sarah...are you there? Let me know what you think.

    Chris, when you say coumadin 8 mg - how do you take that...every day? every other day?

    I'm glad to hear you've been hospital admission free since 1999! That's a great stretch!
    NOTE: This is a post from the previous forum message board.

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