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Share your HCM Story with the Today Show

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  • Reenie
    replied
    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.

    Reenie

    Leave a comment:


  • Pam Alexson
    replied
    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

    Leave a comment:


  • john blanchard
    replied
    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!!!!

    Leave a comment:


  • Burton Borrok
    replied
    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.
    Burt

    Leave a comment:


  • shirleymahoney
    replied
    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.

    Shirley

    Leave a comment:


  • Chuck B
    replied
    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.

    Leave a comment:


  • Laura
    replied
    Re: Share your HCM Story with the Today Show

    Maybe they will do one, since the TV show ER aired something with
    someone w/ HCM.
    We could hope.


    laura

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Share your HCM Story with the Today Show

    NO go... at least nothing yet.

    We are gonna keep trying!

    Lisa

    Leave a comment:


  • Marlene Wilkinson
    replied
    Re: Share your HCM Story with the Today Show

    Hello to everyone
    I'm new to this site, and I came across this topic regarding "The Today Show"...well....did they air anything about HCM? No one posted anything after January. Im curious to know if they used anyone's story?
    Thanks for the update

    Leave a comment:


  • Laura
    replied
    Re: Share your HCM Story with the Today Show

    I just saw this!
    I went ahead and sent them my story of travels to boston from Washinton state.
    i went to the attched site and it came up with the right heading.
    it returned me a confirmation.
    I'll have to start watching the show !!

    Leave a comment:


  • shirleymahoney
    replied
    Re: Share your HCM Story with the Today Show

    Wow i never thought about that i don't know where my head is lately, i think these CCB are doing something to me mental wise anyway, I wasn't like this before i started on all this med, i better go my 3 yr old grandaughter is trying on all my clothes LOL:


    Shirley

    Leave a comment:


  • Reenie
    replied
    Re: Share your HCM Story with the Today Show

    Shirley, I was just persistent. I had copied my email and I pasted it back into their form instead of retyping it every time.

    Reenie

    Leave a comment:


  • shirleymahoney
    replied
    Re: Share your HCM Story with the Today Show

    Reenie i got to go through finally at least they sent me a reply to say they got it anyway so we'll see what happens, it would be nice if they did a piece on HCM, i think that would help alot to get the word out about the disease. Take Care



    Shirley

    Leave a comment:


  • shirleymahoney
    replied
    Re: Share your HCM Story with the Today Show

    Reenie
    Did you have to do anything special to get it to go through, i have written mine 3 times and it errors out on me it's getting very frustrating, any thoughts
    Shirley

    Leave a comment:


  • Reenie
    replied
    Re: Share your HCM Story with the Today Show

    I got my story to go through this morning. We'll cross our fingers.

    Reenie

    Leave a comment:

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