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Share your HCM Story with the Today Show


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  • #16
    Re: Share your HCM Story with the Today Show

    I saw the E R that referred to the hypertrophied left ventricle but did not hear a mention of HCM per se. I also saw the episode where a girl came to the emergency room blue. she said she was on an antiarrythmic drug - amiodarone- to control v tach. Sounded too familiar - but l hope they were stretching it a bit, the patient referred to what the kids said she looked like to them - a smurf. If I ever get to that point I think I'll just jump into a tub of bleech or maybe Michael Jackson could help me out.
    Chuck B

    An inch is a cinch, a yard is hard


    • #17
      Re: Share your HCM Story with the Today Show

      As far as i know that is on of the side affects, the pharmacist told my husband it was what she calls smurfism, but it is only in spots or patches my husband was fine on the meds, in fact it didfoibut they said they had to try it before they did anything else like using the paddles on him to straighten out his heart beat which didn't work, either treatment he has chronic A-Fib. Good luck and take care of yourself and don't believe everything you see on tv.

      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


      • #18
        Re: Share your HCM Story with the Today Show

        I believe everything I see on my TV – a plant, books, a picture of my grandkids – why I even believe the dust.


        • #19
          Sudden Decline in Function in HCM

          Is there anybody out there who is able to converse with us through e mail who can share thoughts and expereiences about decline in function and symptoms. My husband is 55 years old and in the past year has declined in health considerably but in recent months/ weeks even more so. We cannot get any help or support from the medical profession here and dont know where to turn. It would at the very least be helpful to know of anyone else with the same symptoms - very tired and weak, headaches and pressure feeling in chest and neck, unable to exercise at al without exhaustion very quick, oxygen levels in blood reduced to 7 or 8 % instead of normal 11%. Finds it difficult to travel anywhere due to nausea and finds flying too exausting. Drs say nothing they can do and that surgery or pacing wont help. Help help help!!!! Please please please!!!!


          • #20
            Re: Share your HCM Story with the Today Show

            Call the number at the bottom of this page and talk with Lisa. She will help you more and relieve some of your anxiety by just getting some answers to you. Johns symptoms and poor feeling is a part of the disease ; dicomfort levels vary from one to the other and in intensity. I'm quessing that John has been given a diagnosis of HCM perhaps the obstructive type? Please try not to worry too much help is on its way to you. You have come to the right place. Welcome to the HCMA board. Pam
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


            • #21
              Re: Share your HCM Story with the Today Show

              You can also check out www.cardiomyopathy.org. That's the UK's HCM site. It may be able to help you get a new doctor.


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


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