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Need some help please


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Fred Find out more about Fred
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  • Need some help please


    I got diagnosed with HCM about 4 years ago. My allergy doctor found a murmur and sent me to a cardiologist. That's when I first heard about HCM or IHSS what he called it.

    Since then I have learned a lot from about HCM through forum and was hoping that somebody here could help me with some questions.

    On Thursday (5/15) I'm going back to my local Cardiologist to get my yearly echo done.
    What I would like some help with is what specific questions I should ask him about
    a) my condition
    b) how much he knows about the HCM
    c) anything else you can think off.

    For the last 4 years I just got told that yes it's bad but you are stable, keep taking your medication and see me in 12 months, over the last year it has gotten a lot worse. Walking uphill or up stairs puts me out of breath for 10 minutes and my hart goes crazy. Numbness in my left arm is also not a strange thing anymore.

    I got the test results from the echo's that where done from the last couple of years but they do not make a lot of sense to me even after doing some research online.

    The numbers on all tests are way of from each other.
    What numbers should I be looking at? What are the ranges that they should be in?

    Sorry lot of questions, hope somebody can help me out.

    Thank you,


  • #2
    Re: Need some help please

    Dear Fred,

    Honestly I think it's time you saw a specialist. If your doctor is a good one he will encourage you to see someone who is more knowledgeable than the routine cardiologist. I've had some tell me that since they are cardiologists and HCM is a heart condition that any cardio should be an expert. That just isn't so. Please call Lisa next week at the contact phone # on the membership page of this site to find a specialist who is nearest you and who would be the best match for you.

    As far as the echos go... Well, you can look up the measurements and compare them to the normal range. Please check out this link - http://www.4hcm.org/phpBB2/viewtopic...ght=echo+lingo. This will give you a lot of information. We will be glad to answer any more specific questions you might have if that doesn't answer most of them.

    Your story is very familiar and sounds very much like many others on this board. I'm sure that you will have others post replies to you soon. Take care of yourself, drink a lot of water, and make sure you get enough rest.


    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.


    • #3
      Re: Need some help please

      Fred - Questions are always welcome... this is how we all learn.

      Lets start with the doc: here is how I would ask about his knowledge about HCM - How many patients do you follow with HCM? Have you attended any special meetings or grand rounds about HCM in the past few years?
      What should you do about his responce? There are MANY great docs out there who just do not have a great deal of experience with HCM - I would look at several options if the person has only seen a handful of patients and has not really taken a great interest in the condition up to this point. I would get a consult from a specialist and let your doc know that he/she is an important part of your health care and that you would like to work with him/her as part of your health care team. Then get to a specialty center for a consult and make sure your care is up to 2003 standards.

      What #'s should you look for - your septal measurement, left free wall measurement your atrial measurement and if you are obstructed your gradient.

      Talk to your doctor about these new symptoms - ask what your options are, such as septal reduction, new meds, diet, or even further testing to check and see why there are more symptoms.

      I hope this all helps. Be well and call if you need us.

      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)


      • #4
        Re: Need some help please

        Hi Fred,

        You will be very happy you found this board and great web site. I have found it to be invaluable for my situation and it quite literally has changed the course of my life.

        I was also diagnosed by a very compitent, personable young female cardiologist who found I had IHSS. I started to research this thing and stumbled almost immediately onto this site. After careful consideration and lots of reading decided no matter how much I liked my new cardiologist, she was not a highly educated cardiologist on THIS subject, HCM. By reading posts here I found I live and work near one of the best clinics in the country that treats this life changing disease.

        My diagnosis about 14 months ago explained a lot of things I could not figure out. I have had this disease a very long time but like you I have also had a very rapid progression of symptoms over the last 18-24 months. I now have the obstructive form of HCM, HOCM.

        I am one of many many people who post here and visit this site every day. You will be glad you found this site and the folks here will help you find everything you need to manage your disease. My 2 cents worth to you is don't waste any time getting in touch with a specialist who knows HOCM. Good luck and let us know.

        NEMC's (Boston) First Myectomy 7-22-2003