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HeartCenteronline website...a question about CHF

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cynthiaG Find out more about cynthiaG
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  • HeartCenteronline website...a question about CHF

    I just read something very disturbing to me on this website. I've gone to several websites learning about CHF. It says that 50 percent of newly diagnosed people with CHF, die within 5 years of diagnosis. Now I'm really having palpitations
    \"It is not length of life, but depth of life.\"

    Ralph Waldo Emerson

  • #2
    Doesn't mean you!

    Dear Cynthia,

    Those numbers are just that ----numbers! They include all the millions of people who have inadequate medical care or no care or the wrong care.

    If you only looked at people with CHF who are getting excellent medical care, I think the numbers are very different --but I don't think anyone is producing this number.

    You can live a long time with CHF when it is managed --as your is/will be.

    Furthermore, new meds, new treatments, etc. are appearing all the time, so as you age, more things will become available to you.

    You can't live your life thinking you only have a 50/50 shot as that number doesn't have anything to do with what you are doing for you and what your situation is and what your treatments are. So carpe diem, take care of yourself and stop reading so much!

    S

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    • #3
      THANK YOU so much, Sarah for your fast response. I'm sitting here crying to myself....thinking of how much I want to see this specialist and get things going..I 'm feeling down in the dumps and feeling sorry for myself...thinking just a few months ago, I was fine and why did this have to happen. I look at my 8 yr. old son and just want to get better and stay around for years to come.
      \"It is not length of life, but depth of life.\"

      Ralph Waldo Emerson

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      • #4
        Hey.. There are many causes for CHF - and for those of us who have been in CHF (even if we do not realize it) it is manageable! You have every right to expect a long life...you many just have to be careful with some things and be on top of your meds.
        Stop crying
        Start smiling
        You are headed to a specialist who will help you LIVE with HCM and CHF!
        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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        • #5
          Thank you, Lisa, for your words of encouragement. I needed to hear that so much! I have to say that when something like this happens, it has some positive things happen along the way. My husband and I have been so much closer and less argumentative! He has been there right by my side all the way. I'm glad he is on the more positive side of things. Maybe I'm just both anxious and nervous about seeing the specialist. I am so fortunate to have come upon this website. Everyone is so supportive and informative...thank you so much....take care
          \"It is not length of life, but depth of life.\"

          Ralph Waldo Emerson

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          • #6
            Cynthia, Have you read any of the postings about our relationship with the American Heart Association? If you have, you have heard many of us voicing disappointment that they seem to be so unaware of the condition of HCM. They deal with coronary artery disease and so many other commonly recognized heart conditions. When calling the national hdqtrs, you most likely will not be able to speak to anyone who has any understanding or even knowledge that HCM exists. So, keep this in mind when you read other websites. If it deals with CHF, it usually is referring to a condition resulting from those other situations. In those cases, the heart has already stretched out and weakened dramatically. It can be managed in those situations also, but needs meticulous care and is very unforgiving in slipups on diet or meds. In HCM, the situation just isn't the same. It can reach that point, but don't dwell what hasn't happened yet. Keeping it under close control is the key, just as a diabetic knows they must be vigilent with blood sugar control. Remember, it is easier to keep it under control than it is to get back under control. Hope this offers some reassurance to you. I have personal knowledge of a 15 yr old who was in pretty severe failure 5yrs ago. That young person, now age 20, is no longer in failure and doing well, since more appropriate treatment was started. Linda

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            • #7
              CHF------ in the elderly

              I see that all of you may be concerned about a statistic that probably reflects the situation of an entirely different population, with problems entirely different from ours.

              I just spent the last 2 years watching my Dad slowly die of CHF. He was living in a nursing home, and it was pretty dreadful, but he was almost 94 when he died! A large number of the patients in this nursing home were in the same situation, slowly dying the same way. I don't think their experiences have anything to do with my own case at all. Or that case of any of us, but these folks are quite a large number, statistically speaking, of the HCF cases that die within 5 years--------

              Maybe some other members can shed some additional light on this----

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              • #8
                Liona, you are so right. It's a totally different situation. What I meant to make note of in my previous post and completely forgot - statistics are never current. Those statistics, in addition to not applying to HCM, are probably at least 5 or more yrs old. In that time frame, more attention has been paid to the treatment and as current guidelines become more routine and followed more closely, I think we will see a much better statistic even for those people. I, too, lost my mother to CHF this past September - not an HCM. She had been in failure off and on for 20+ yrs. The past 10 yrs, she always had some degree of failure. But she lived a pretty good, and active life till the last 6 months. I'm sure some others will post experiences. Linda

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