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Daisy Find out more about Daisy
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  • #16
    Re: end stages

    Hmm that link worked earlier. Im probably doing something wrong!

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    • #17
      Re: end stages

      I can not get that link to work...
      Lisa
      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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      • #18
        Re: end stages

        Dolly, Dobutrex or Dobutamine, is used to strengthen the contraction of the heart muscle, specifically the weakened ventricles in failure. It will strengthen the contraction, thus increasing the amount of cardiac output or blood flow without increasing the heart rate. This is important to the failing heart because an increased heart rate will increase the need for oxygen to the heart muscle beyond that of a slower rate. The harder and faster the heart muscle pumps, the more oxygen it needs to support it. So increasing only the force of the pump is most efficient. It can only be given by IV and one of the advantages is that it has a very short half-life. That means its effects only last a few minutes, another advantage if a person should have a reaction to it. It is not to be confused with Dopamine, which will be used in a more acute situation, due to it's additional effects. Hope this helps. Linda

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        • #19
          Re: end stages

          Tommy,

          To clarify what I meant by doing things I probably should or should not have been doing...

          In 1983 when I had my myectomy and due to mine and my doctor's ignorance on HCM, I thought that I was cured! I felt great! So I went off all my heart medications after my recovery. I also continued to drink too much alcohol, smoke too many "funny" cigarettes as well as trying other non-prescription meds (coke being the stupidest), playing competitive sports, weight lifting, etc. I guess being the first in the whole family diagnosed didn't help either. We didn't know it was hereditary until probably 10 years later when the next relative was diagnosed. This was also around the time that my symptoms began returning.

          So I shouldn't have done many things but even if I had a good heart, I shouldn't have done them either. Kids... they can be so dumb. I'm lucky to be here today and God willing will be around for a lot longer.

          P.S. I still overdo things such as bending over or lifting at times, but my family is helping me get over this by doing things for me. It's hard because I have always lived alone and done all my own work around the house, on the cars too.

          Matt

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          • #20
            Re: end stages

            Hi Daisy

            I was diagnosed in 1987 26 yo. i had very few symptoms until 2 1/2 years ago. In these last few years i have been from the east to west coast in downward spiral searching for help. One of the most helpful things for me is oxygen. I don't know if anyone else has tried this with the chest pain but it does help me. I do almost nothing compared to 3 years ago. I have to say the worst is i can hardly drive, can you imagine, there in my drive is my beautiful "78 CAMARO... My husband really wants to take her out for a spin..............
            My mother aunt uncle & brother did not have any of my symptoms.
            When i got this bad i thought i was crazy, as the heart Dr here, to this day states that my pain is not from HCM. luckily i have a good PC. He has always been willing to send me where i want/need to go and has helped with all the pain i am having.
            I have had,tried & am on different meds,yuck. I have an AICD & I need a new atrial lead. If you need one do it.
            Having non obstruction is the really hard part since there really is nothing other than meds and implants.
            Daisy,I hope this finds you well and fighting.
            If we don't fight no one will hear us!!!!!!!!

            God Bless
            Laura
            Laura Johnson

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