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newly diagnosed--many questions


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Terry Edwards Find out more about Terry Edwards
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  • newly diagnosed--many questions

    I have been diagnosed with an enlarged heart just a week and a half ago. I have been short of breath for many years and have been having lightheadedness for quiet a few years. I have been able to do less and less physically without knowing why, and have also been confused, disorganized, and anxious "before" being diagnosed. I finally went into the ER with mild chest pains. I want to know what will change the most in my lifestyle and what safe exercise I can do to help lose weight.

  • #2
    Terry welcome to the club you never wanted to join. You have some valid points that you asked. But, hcm is very different in each person. Some people can pretty much lead a normal life with few symptoms then some of us have debilitating symptoms. Look over this website it has some great info esp at the beginning. If you have questions feel free to ask them.

    Some things you want to think about is if you have a family getting them screened. HCM is genetic and can be passed on to your children. Tell your family and encourage them to get screened as well. You can also call Lisa her number is at the bottom of the page. She is a wealth of info and she can send out an info packet.

    As far as exercise goes you need to discuss it with your doc. There have also been some good threads here. Just type it into the search feature.

    And lastly take a deep breath its not a death sentence if treated responsibly!

    Mary S.


    • #3
      Enlarged heart may mean many things. You will have to speak to your doctor and ask him/her for a formal diagnosis. You likely have a form of cardiomyopathy, howerver which one is the question. Your echo report holds the key to this door, call the doc ask for a copy of the report and feel free to call the office so we can help you turn it into english.

      Best wishes,
      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)


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