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cynthiaG Find out more about cynthiaG
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  • ACE inhibitors-

    I'm 49 yrs. old and may have congestive heart failure. I have not received a definite word, but it's leaning towards that. I'm a wreck. I have known I have had HCM for approx. 20 yrs and have had no problems up until know. I believe my doctor said that my ejection fraction was good, but my left ventricle is beefy. I was told that there were no significant changes on my echo i had done in early December to the one I had previously in 1998. I saw my new primary care doctor yesterday and he is wonderful....he is a family practioner but is well educated about HCM. I'm on Furosimide every other day. He listened to my heart and did not hear any wheezing, etc. and my lungs were clear. He was concerned about the echo of the left ventricle. He is referring me to a HCM doctor in Boston. I hear they are excellent. He said that I would probably be put on an ACE inhibitor....has anyone been taking these for a long period of time will success? Of course my primary thought is long term. THANKS!
    \"It is not length of life, but depth of life.\"

    Ralph Waldo Emerson

  • #2
    probably not...

    Dear Cynthia,

    You need to be very careful about taking a diuretic with HCM. Be sure you are taking electrolytes and drinking water. You should be getting your electrolytes checked periodically, too.

    You are more likely to end up on a beta-blocker than an ace-inhibitor, if statistitcs win the day. Both drugs are very well tolerated by most people and are often taken very long term. I have been on both and the ace-inhibitor actually did nothing for me but put my potassium out of wack (or was it my thyroid? maybe both--thyroid is already a problem).

    I've been on a beta-blocker since 1984 without any major problems.

    The HCM team at Tufts-NEMC is great and will take very good care of you, whatever meds they recommend.

    Let us know how it goes and hang in there.

    S

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    • #3
      Some ACE inhibitors have increased symptoms in those with obstruction. ACE is not very common to ue in HCM and there is little data available on the subject.
      A visit to a specailist is well advised - also do not panic about being in heart failure - it is easy to manage with a good doctor.
      Best wishes,
      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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      • #4
        Thanks, Sarah

        Thank you so much for your speedy reply! I am taking Klor-Con (potassium) along with the diuretic. My doctor had mentioned that the ACE inhibitor would probably be what the doctor in Boston will prescribe as they don't "dry" up your heart as diuretics do. I have been researching different meds for treatment of CHF and came across one on the AHA website...it is called "omapatrilat". Have you heard of this new med? It said that it is a potential "breakthrough" for treatment of CHF. Can people with CHF live many years while taking medication?
        \"It is not length of life, but depth of life.\"

        Ralph Waldo Emerson

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        • #5
          Thanks, Lisa

          I'm sure I'll be in good hands in Boston. Have you heard of a new treatment of CHF called "omapatrilat"? I found this info on the American Heart Association website and it is called a "breakthrough" in the treatment of CHF
          \"It is not length of life, but depth of life.\"

          Ralph Waldo Emerson

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          • #6
            Cynthia, the ACE inhibitors are a part of the common treatment for congestive heart failure in coronary artery disease patients, but need careful evaluation with HCM, even tho there may be congestive heart failure with HCM also. So, you are quite lucky to have a doctor who is so well informed on both, and taking the first step to referring to an HCM specialist. Good for you. You are headed in the right direction. See what they have to say, Best wishes, we'll be waiting to hear. Linda

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            • #7
              Cynthia, guess we were posting at the same time. Now I see your question about the new drug - omapatrilat. I don't know a lot about it, it is a new thing - a real breakthru. It's a combination med, an ACE inhibitor and a new treatment drug for CHF(congestive heart failure). It is a chemical normally released by the body to get rid of extra fluid when the heart muscle senses extra work load due to high pressures(resulting from fluid buildup which causes failure). The short story is that it supplements the body's own natural responses in addition to the action of the ACE inhibitor. Can anyone else jump in with a better/more easily understood answer? Linda

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