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Need Advice - Questions I should be asking


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  • Need Advice - Questions I should be asking

    I am newly diagnosed with HCM with obstruction (2 mos.) I am still in shock and trying to understand what this means for my future and the future of my family.
    I am going to the cardiologist this afternoon because I have been feeling very lethargic and dizzy. I am taking a low dose of Metoprolol (25 mg bid.) No history of high blood pressure.
    I am felling very confused and a little frightened.
    What questions should I be asking the cardiologist?

    Does anyone know of a cardiologist in SW Florida who has experience with HCM?
    Is it important to get genetic testing?

    Any advice would be appreciated.

    64 yr old female

  • #2
    Re: Need Advice - Questions I should be asking

    Hi Patti,
    The most important place to start is one bit of knowledge: most people with HCM live about as long as anyone else, and for most people the limitations on activity are actually fairly minor. On this board you'll tend to see a much higher representation of people with serious problems, because . . . well, they're more likely to be posting on a board.

    I think you're starting with the right question, though: how to find a specialist? There are none in SW Florida, or in my area either. However, there are a number of Centers of Excellence for HCM around the country, and a lot of HCM patients go to one of them for their specialized issues. For example, I see a local cardiologist in Tampa, but I also go (usually once a year) to see Dr. Lever at the Cleveland Clinic. It's a new experience for most of us to be jet-set patients, but it's absolutely worth the added expense (which is really just for the travel -- the medical bills aren't any larger than you'd get locally, and often are smaller, and most insurance plans will cover such visits -- though some require a bit of arm-twisting). What I'd suggest you do is call the HCMA office and talk to them; they can help you figure out where to go, how to get an appointment, and, based on what you know so far about your HCM, what questions you should be asking.

    As to what to ask your doctor today, I think one of the most useful questions would be about how they'd feel about working with a specialist.

    At present, the main use of genetic testing would be to identify close relatives who should be monitored closely for HCM. It may be useful for you, but it's not likely to affect your treatment in the short term. This is actually another good question to discuss a bit more when you call the office.

    It's natural to be frightened. We've all been through it at least once! One of the real values of this board is to provide support -- so feel free to use it!

    Myectomy on Feb. 5, 2007.


    • #3
      Re: Need Advice - Questions I should be asking


      Although I'm not a moderator, my advice is to get your hands on the book that this assn has published. It answers a lot of questions. I gave one to my primary physician and she actually put it beside her bed and read a little every night until it was done. I was impressed!

      There's a lot of HCM in my family. My sister, who is 2 yrs younger than I, has obstruction, but, other than mild shortness of breath, has no symptoms and is very active. I have no obstruction, but go in and out of short bursts of V-tach, so, I have an ICD. I am also starting to get pulmonary hypertension, and the valve that has been slamming against my large septum is starting to fail. The point here is that each of us manifests this disease differently. What is good for one of us may not be good for another. If possible, get an opinion from a center of excellence, then, take a deep breath, and continue to post questions. This message board is the best thing happening!



      • #4
        Re: Need Advice - Questions I should be asking

        Thanks for your responses. I am currently working on getting an appointment at Cleveland Clinic...hoping my insurance will pay for it!


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