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The doctor visit - NOW I'm confused

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  • The doctor visit - NOW I'm confused

    [The doctor visit - NOW I'm confused]

    Author: karla (---.proxy.aol.com)

    Date: 06-12-02 06:21

    Hi Gang...

    Like so many of you, I also use this board to 'vent' my frustration and concerns....

    Hubby and I saw the doctor yesterday for heart halter results. (Hubby is the patient) The results from the 24-hr. testing did not show any arrithymias.

    I was a little surprised at that.....I was expecting something to show up based on statistics of arrithymias in HCM patients and hubby's frequent fatigue epiodes.

    The doctor did not prescribe any more meds - hubby is currently on a beta blocker. Told him he didn't need an ICD. Simply put, the doctor told him that he has had this all his life, and to just keep living his life as per usual. He did mention to not do 'weight-lifting' or get dehydrated - after a lot of prompting from us for lifestyle guidelines - that was about it, and the doctor told him to come back in 3-6 months. (Oh, and by the way, he took a cell phone call from his kids during the consult!)

    I asked the doctor how MANY patients do you treat/have seen with HCM, he responded 'several." ...does that mean a total of 3?????

    Maybe I'm blowing things out of porportion here, but I have read the reports on hubby that stated that his hypertrophy was "severely concentric"(not focused on his septum, but he whole left side) and it just seems to me that that in itself is seriously risky, and something more could/should be done.

    I'm so confused by his 'take -2 -aspirin-and-come-back-whenever' attitude!

    I really want to take a trip to Cleveland to see a specialist, and now I'm concerned that hubby won't go as this doctor was so nonchalant about his condition.

    Am I overreacting?

    Keep me on the right track!

    Karl

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    [Re: The doctor visit - NOW I'm confused]

    Author: Kat (---.proxy.aol.com)

    Date: 06-12-02 11:31

    Hi, Karla,

    I think one thing that I've learned from experience is that with doctors you have to go with your gut instinct. If you are not comfortable even after they've explained all they have the time and inclination to tell you, then going on home to sit and wait for the next 3-6 months is not a reasonable alternative. And I think it's important that even if your husband does not currently need any treatment for his HCM, that the reasons for that have been explained to your satisfaction.

    HCM has a wide spectrum of expression, from no symptoms at all to sudden death. Although sudden death isn't all that common, naturally it's scary to think about, as sometimes that's the FIRST symptom of HCM. Since your husband already has chest pains, headaches, and exhaustion, he's somewhere else on the symptom spectrum. I wouldn't think that he would be left with no treatment, but I'm not a doctor. However, doctors are not gods! If you don't both feel that you understand what your husband's doctor thinks and why, and feel reasonably comfortable and reassured with his or her analysis and advice, then you need another doctor!

    Granted, a doctor may not always say what you want to hear. ("Take this pill and you'll be cured by morning," is pretty much what I'm always hoping for.) But if what you are told just doesn't sit right, don't retreat into passivity. From the way you write, I don't think that's a likely route for you. Give your husband a chance to read the materials you've received, get him to read the postings on this board, if possible, and then have a good talk about it. Good luck to you both.

    Kat

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    [Re: The doctor visit - NOW I'm confused]

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

    Date: 06-12-02 12:11

    Dear Karla

    This is exactly why the HCMA encourages patients to see an HCM specialist. Because an HCM specialist knows what to look for in case there is any risk of sudden death and also knows the newest treatments. The research on HCM is progressing rapidly and general cardiologists, for the most part, do not have the time or expertise to stay on top of it, especially when they see only a few people with it.

    My husband always said: "If you had cancer, would you want to go to a doctor who says 'Wow, I almost never get to treat this kind of cancer.' or would you want one who says, 'Well, I treat this all the time.'" Who do you think knows what the latest treatments, procedures and options are?

    If hubby won't go see a specialist, I recommend that you get him on the phone with Lisa. 973-983-7429.

    good luck

    Sarah

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

    [Re: The doctor visit - NOW I'm confused]

    Author: karla (---.proxy.aol.com)

    Date: 06-12-02 12:27

    Thanks for your input...as always, good insight from the HCMA boards!

    Kat, yes I am thinking a lot about where hubby is at on the spectrum, so to speak, with his HCM, and THAT is obviously not being addressed by the cardiologist. The doctor seems to be coming from a "there's nothing you can do about it', "youv'e had it all your life" mindset. That may be true, but I don't feel he is qualified enough to fully asses and treat.

    And, Sarah..great anolagy to put things into perspective as far as 'treatment' goes with a doctor who knows!

    I have to tell you - there is a 'sidebar' to all of this......under my previous post asking What is a Hepatic Mass....we are seeing his primary care physician ths afternoon about that incidental finding. It may turn out that we are facing not one - but two health issues with hubby. What a twist of fate it is that through his HCM symptoms something ELSE was found - which could be just as or more serious in the long run...know that it's way to early to tell, however, steps must be taken to further diagnose what that mass is that they found while doing his echo.

    Hubby does not know that was on the report, and will hear that news for the first time today from dr.

    Will keep you posted......thanks again!

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

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