Mended Hearts Open Forum

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  • 1.  I'm new to obstructed hypertrophic cardiomyopathy--please give me advice and what to expect etc?

    Posted 26 days ago
    I'm Jordan, I'm 55, and I live in Los Angeles.
    I'm new to obstructed hypertrophic cardiomyopathy--please give me advice and tell me what to expect etc?  I'm told I'm only mildly obstructed.  I'm taking metroprolol and was told that I could never lift anything over 20 pounds again in my life and that I could not vigorously excercise again in my life.  I've also been reading about the disease, that's it's progressive and potentially deadly with no notice even right now, available treatments that have low success rates--makes me feel hopeless.  There's apparently been a recent potential worsening of my case, and I was told that I might be switched to a different medication that would require monitoring me every 4 or 8 weeks for the rest of my life.  It seems like this disease and its treatment all are still in their infancy and that advances in the science of this heart disease are a long way off.  Anyway, thanks for listening.  I was diagnosed only several weeks ago.

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    Jordan Rudnick
    Los Angeles CA
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  • 2.  RE: I'm new to obstructed hypertrophic cardiomyopathy--please give me advice and what to expect etc?

    Posted 25 days ago
    This sounds like the kind of disorder where you'd want to be sure you're seen by the right cardiologist.  Maybe find a cardiologist who has a specific interest or subspecialty in this discipline area.  These folks are more often found in teaching institutions.  Maybe UCLA or Cedars or USC, not sure.  Narrow specialists are not commonly found in community hospitals.  Here's a paper I stumbled on that might provide some insight:  https://www.ncbi.nlm.nih.gov/books/NBK430820/ 
    Wishing you the best in obtaining the care you need.

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    Ed M
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  • 3.  RE: I'm new to obstructed hypertrophic cardiomyopathy--please give me advice and what to expect etc?

    Posted 25 days ago
    thank you!

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    Jordan Rudnick
    Los Angeles CA
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  • 4.  RE: I'm new to obstructed hypertrophic cardiomyopathy--please give me advice and what to expect etc?

    Posted 16 days ago
    thank you'!

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    Jordan Rudnick
    Los Angeles CA
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  • 5.  RE: I'm new to obstructed hypertrophic cardiomyopathy--please give me advice and what to expect etc?

    Posted 25 days ago
    Hi Jordan, 
    There are outstanding heart facilities in Los Angeles.  Attached is a link that will list some of the local doctors in your geographic area who specialize in hypertrophic cardiomyopathy.  Tried several times to copy link into this page and unable to do so... I hope you can decipher the link....  Wishing you the best...kat

    https://www.medifind.com/conditions/hypertrophic-cardiomyopathy/2634/doctors

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    Kat Edwards
    CA
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  • 6.  RE: I'm new to obstructed hypertrophic cardiomyopathy--please give me advice and what to expect etc?

    Posted 24 days ago
    Hi Jordan,
    I believe there is a new drug, Mavacamten, which might be the drug you are referring to.
    I also saw another reply to you  with the suggestion that you seek help from a large teaching hospital.  I think that is a terrific idea - I have just had a successful open repair of abdominal aortic aneurysm and I chose to have it at a major teaching hospital here in Australia.  It was the best decision I have ever made and I had terrific medical and nursing care.     
    Could you perhaps write or email Mayo or Cleveland Clinics and ask the advice of Cardiothoracic Surgeons there,  hey, maybe they might know a very experienced surgeon or cardiologist who works in your neck of the woods.          You know what I mean Jordan, you'll never know if you don't have a go.


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    frances campbell
    VIC
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  • 7.  RE: I'm new to obstructed hypertrophic cardiomyopathy--please give me advice and what to expect etc?

    Posted 23 days ago
    Thank you 🙏

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    Jordan Rudnick
    Los Angeles CA
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  • 8.  RE: I'm new to obstructed hypertrophic cardiomyopathy--please give me advice and what to expect etc?

    Posted 17 days ago
    thank you :)  You are right--if you don't ask, the answer is always 'no'

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    Jordan Rudnick
    Los Angeles CA
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