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Thanks to Lisa and the HCMA


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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.




    [Re: Thanks to Lisa and the HCMA]

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

    Date: 06-12-02 15:25


    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.



    [Re: Thanks to Lisa and the HCMA]

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

    Date: 06-12-02 18:21


    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

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