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Lisa R. Find out more about Lisa R.
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  • hello

    My name is Lisa, I am a 29 year old with HCM. This was found in 1995, while pregnant with my son.
    I was having breathing issues and thought it to be anxiety during the begining of my pregnancy, turns out I was wrong.
    I take medicine which is 25 mg lopressor, 2x's daily, my symptoms are being short of breath, pressure in chest, a few palpitations. I have beliefs that I hope to have dealt with when I meet this new doctor, about hormones, weather, food like sugar affecting this disease. I don't drink the fluids that I should though I am trying to change that bad habit. I deal with life as it comes and talk myself through things, I don't like to give in, now I know I need to know more, I don't ever want the role of being a sick wife, mom, sister, friend.
    So I hope to be informed, empowered and improved by this site and all those that I meet.
    Lisa R.

  • #2
    WOW - what a tale you have to tell.
    I am sure glad you found us. HCM specialists are few and far between, I suggest lots of questions to find out just how much this doctor knows about HCM. With a gradient of 100mm you really need to watch hydration issues - water water water drink drink drink...
    Has your son been screened yet?
    Stay well and keep up that great attitude

    Lisa Salberg
    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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    • #3
      wow!!!

      that gradient was from a file I have from the pregnancy it was the first echo I ever had done, so that was without medication and the stress of pregnancy, I think the end of pregnancy or with medication it was about 40, I really am not sure what it is now, I don't have updated records I hope to have those when I see the new doctor,
      questions for him, I am coming up with some, I don't know really where to start except over, I guess I was a bit younger and a little less wise then,
      The tale IS long and I always feel winded when telling it, there is no way to shorten it either
      My son was screened a few months back at Childrens Hospital in St. Louis Missouri, he is fine, they did an echo on him and found he was ok, they thought there may be a slight murmur there, but the echo turned up nothing, I pray he is healthy the rest of his life and is without this disease.
      Drinking water is an issue for me, I am never really thirsty,I have been told to eat salty foods to make me thirsty and right now drinking is a bit hard with whatever happened during my chicken pox stint, with loss of voice I have troubles sometimes swallowing fluid, small drinks. I make the joke that I am drowning when I am made to drink. That really is how I feel. I have alot to change about the way I view my disease, and stop playing with it. Thank you for reading, I will post info once I have seen the doctor and have my numbers.
      Lisa R.

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