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  • Thanks to Lisa and the HCMA

    [Thanks to Lisa and the HCMA]

    Author: Ada (---.netcarrier.net)

    Date: 06-12-02 12:08

    Hello, everyone!

    I just want to say a huge "thank you" to Lisa, Sarah, and everyone on this message board. I was diagnosed with HOCM when I was 5 and, at that time, was put on 30 mg of Inderal. By 18, I was on 480 mg of Inderal and had begun experiencing ventricular tacchycardia. Than, at 20, I received an ICD and started taking 800 mg of Norpace. I was always fatigued and experienced other side effects with the medications, but I had been medicated for so long that I didn't know any differently. I had never met anyone else with HCM and did not fully understand the disease, so when the doctors told me everything was fine, I didn't think to question them.

    Then in February, I had a fainting spell at work that was followed by several weeks of dizziness, chest pains, and other symptoms. After visiting the ER, my cardiologist, my general practitioner, and a neurologist, I was told that it might be dehydration or anxiety, but that there was nothing seriously wrong. Then, I was advised not to drive. That's when I posted a message on this board and contacted Lisa. I spoke to Lisa mid-April and, by April 28, was on a plane to the Mayo Clinic. I left for Mayo on my 27th birthday. What a wonderful birthday gift! It was so refreshing to be around medical staff who really understand HOCM and the symptoms I was experiencing.

    I had a myectomy on April 30 at St. Mary's Hospital. I am now finishing up my recovery at home and am getting ready to go back to work. I had to take a low dose of Lopressor while recovering but, as of today, I am medication free! I know that I made need to go back on meds some day (for the arrhythmia), but I'm enjoying this while it lasts. I'm still healing, but I already feel sooooo much better. Just being off those huge doses of Inderal and Norpace has made such a difference. I can only imagine how good I am going to feel once I am completely healed.

    Lisa, I am so grateful to you for helping me find the confidence to seek a second opinion! And thank you to Sarah and everyone on this message board. I read the postings every day. It's such a comfort to know I'm not alone.

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

    [Re: Thanks to Lisa and the HCMA]

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

    Date: 06-12-02 12:30

    Dear Ada

    Thank you so much for sharing your experience with us. That is why we are here and all the thanks I need is to know that our knowledge makes someone else's life better.

    Take care of yourself and continue letting us know how you are doing.

    congratulations!!!

    Sarah

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

    [Re: Thanks to Lisa and the HCMA]

    Author: Matthew Jesaitis (---.disney.com)

    Date: 06-12-02 15:25

    Ada,

    I advise you to talk to Lisa about going off your medications completely following your myectomy. I had my myectomy at 19 and felt great too and was off all medications for 10 years following. But then my heart became enlarged to the point where I went into chronic A-Fib and started experiencing symptoms again such as fainting, congestive heart failure,...

    If I stayed on a "maintenance" beta blocker post-surgery, there is a good chance that I would not have gone into arryhthmia. Or at least as soon as I did.

    Congratulations on your myectomy and I hope you have a speedy recovery. It is a bright new world for you now.

    Matt

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

    [Re: Thanks to Lisa and the HCMA]

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

    Date: 06-12-02 18:21

    Ada,

    Well what a wonderful story! I am very happy to hear you went for the 2nd opinion and that you were, as I had suspected, a candidate for a myectomy. As Matt said I would not be in such a hurry to get of meds altoghether as there may be some benefits to some betablocker therapy. As many of you know I am a "DATA" freak... but in this case there is no data to support my statement just my observations. I am refering to my observation of 100's of patients with HCM...those who have recieved beta blocker therapy earlier in life and for longer periods, appear to have a lower frequency of Atrial Fibrillation...or at least a later onset of A-fib - while this is not scientific I am hoping that a research will conduct to back up my theory.

    Thanks for your kind words, you made my day!

    Great to hear from you and please keep in touch!

    Lisa Salberg

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

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