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HCM Symtoms and Obstruction Symtoms

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Grecoeuro Find out more about Grecoeuro
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  • HCM Symtoms and Obstruction Symtoms

    Hello,

    I was wondering what the typical HCM symptoms would be verso us additional symptoms caused by obstruction?

    What symptoms are caused by obstruction?
    26 years old, diagnosed April 2005. ICD July 2005.

  • #2
    Hi,

    When you read through the posts you will find many variations on this. ( One of the reasons that many go undiagnosed or some suffer sudden cardiac death and also a reason the the #'s : 1 in 500 with HCM may be too low.) Some people go their entire life without symptoms or sign of the disease either way and others have signs and symptoms of a severe nature. An individual does not have to be obstructed to have severe symptoms either. Yet some who are obstructed feel very severe and very limiting symptoms. It as you can now tell is a very varied disease and each individuals tolerance or expression of their disease is different.

    Now that said I can only speak from my experience. Probably had the disease all my adult life,loud heart murmur at age 18,and misdiagnosed til age 47( obstructed HCM , gradient 70 at reat and 240 + on activity. By that time I had progressive symptoms and by age 50 very poor quality of life. Symptoms were: very SOB on activity of any kind, dizzy spells with blackening episodes that would improve if I stopped and sat or lay down. Congested lungs(CHF), ascites( liver swelling), general body edema and weight gains of 3-4 lbs per day. Unable to eat a good meal. Chest pain that came and went all day some days. Poor sleep( and needing 4 pillows), very , very little tolerance to activity, zero stamina, could not follow a good conversation and could not argue a point at all. Age 50 had a myectomy. Prior to surgery took 350 mgs of Atenolol, 160mgs of Lasix and Cardizem 180 mgs.

    1 1/2 years post myectomy Symptoms much less. Still get pre- syncope , ( don't bend over or move too qickly and it does not happen), SOB only sometimes at rest and always on activity but not to the degree of pre -surgery, CHF in much better control , general edema markedly decreased. Sleep is much improved lately as my weight has gone down and I do have more energy. I am also eating better with very liitle carbs and higher protein. I worked my way up to Atenolol 200-250 mgs depending on my tolerance and the chest pain that I experience daily, I can walk now and deal with the SOB because I do not feel like I will blow up, But I still do not have very good tolerance for much physical activity other then walking for a short period and then resting. I take Lasix 40 mg a day now with occasional increases and I am back on Cardizem 180 mgs. I still lose 4-5 pounds a day generally after my Lasix but always take plenty of water to keep that left ventricle supplied with enough hydration so it does not collapse. Overall I am much better.!

    Do you see a pattern here? See for me we can see what now my non- obstructed heart acts like as opposed to my presurgery obstructed heart acts like. AGAIN everyone is different , this is my experience.

    Variabilities are a big factor. Gradients or not, people will have different symptoms and those with different degrees of ventricle stiffness as well will describe different symptoms. After a myectomy the doctors are able to compare the differences for that individual. They can now see how the individuals non-obstructd heart works and feels apart from the prior obstruction. Some people with non- obstucted are very debilitated as are some with the obstruction may often be debilitated too.

    Hope you are not too confused.

    Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

    Comment


    • #3
      Thanks Pam that helps a lot. I am glad to hear that you are doing much better post surgery.

      My work means a lot to me. It gives me the greatest satisfaction. I am wondering how it will be affected at the worst times. How did you handle work or your responsibilities?

      Theo
      26 years old, diagnosed April 2005. ICD July 2005.

      Comment


      • #4
        Hi Theo,

        I am sure others will have some input here. Because I was and still am disabled.

        I was never able to work past my diagnosis. Sometimes it seems bizarre but I was basicly barely able to function for about a year and my employer was very lenient and understanding. There were times working up to the formal diagnosis, when I was being mis-diagnosed , negative test after negative test, that they would look at me cock-eyed and I know they were thinking I just might be a hypochondriac. The result was that my then small town cardiologist I'm guessing probably bought his medical licence on the internet?? There sometimes seems no other explanation. He was my doctor for 18 years, said for years he never heard my heart murmur and when Boston diagnosed me , he disagreed and some of the diagnosis was based on his test results . He finally said," oh this must have just suddenly happened there was no evidence before now." Yeah right You can imagine my employer and fellow workers were and still are angry at him .

        So even after the myectomy even though things are much better, I have yet to experience a day without something that takes its' toll on my heart function. I do not wish to have anything push me so hard that it potentiates further decline. For me emotional stress and physical activity seem to be a bit too much currently. I keep trying though, everyday I see if I can get through the barricade of some kind of tolerance. Ever optimistic . I like this moderator job because it is volunteer and a flex thing . There are enough of us so if one of us needs to step back we can.
        It is also a great thing to do to still be able to help people like myself and also be a part of a wonderful vision: The HCMA.

        I am sure someone can relate their story of work and HCM ...Hello anyone out there?

        My best,

        Pam
        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

        Comment


        • #5
          well, since no one else is throwing in their two cents I will.

          First, I am non-obstructed. But, I still get sob, fatigue, and my worse symptom is chest pain. I was diagnosed only three years ago at the age of 21 but had symptoms since my teens. I could not figure out why I could not run the mile like my other cadets (ROTC). I trained five days a week and still could only pull off a 12 minute mile! I didn't realize how bad that was until I was looking at some sights that show you how to measure you're Vo2 without all the fancy equipment.

          So, at this point we are looking at the option of heart transplant due to the fact that I am young and have no quality of life. I've had to give up just about everything from my EMT job, to nursing school, and now I can't even do a Unit Secretary job. Before my diagnosis I was working long hours and going to school full-time. It seemed as if overnight I got this way.

          I wish there were other options besides transplant at this point in my life but we've exhausted all the meds and even some of the experimental ones.

          I guess anyone with hcm can exhibit symptoms whether they are obstructed or not!

          Mary S.

          Comment


          • #6
            Re: HCM Symtoms and Obstruction Symtoms

            Originally posted by Grecoeuro
            I was wondering what the typical HCM symptoms would be verso us additional symptoms caused by obstruction?... What symptoms are caused by obstruction?
            Theo,

            If I may comment on your original question...

            In my experience from reading posts here on the board, and studying a bit of the research out there, and also from speaking with my own doctors, I don't think that there are specific symptoms that are unique to those with obstruction. Shortness of breath, chest pain, dizziness, fatique, CHF, arrhythmia, heart murmer, syncope, and all the rest... these are all symptoms that HCM'ers in general can experience whether obstructed or not. Therefore it's impossible to say that if you have a certain symptom, then you must be obstructed.

            One thing I can tell you though, based on several studies of post-myectomy patients (one by Dr. Ommen comes to mind): In cases of HCM'ers with obstruction, the obstruction itself tends to be the cause of the majority of symptoms. This is documented by the amount of relief from symptoms observed following the procedure.

            I also theorize that this is why many of us get diagnosed later in life and/or experience a sudden onset of symptoms. My septum is actually pretty thin at 1.8cm. Although I've most likely had HCM my entire adult life, maybe my septum isn't thick enough to have caused any major problems on it's own, and that's why it went unnoticed for so many years. It wasn't until I developed a significant obstruction in my late 30's that I was even diagnosed, and it went downhill pretty rapidly from there. That's just my theory though, so pay no attention to my ramblings.

            Take care,

            Jim
            "Some days you're the dog... some days you're the hydrant."

            Comment


            • #7
              HCM varies so widely that it would be hard to catagorize symptoms in that way. As pointed out above, with obstruction you have a "gradient" which can make everything worse but the fundamental symptoms such as shortness of breath (sob), tachycardia, chest pain, etc are similar.

              as for work, stress is what makes my heart worse since i can't even get up enough of a head of steam to really exert myself.

              Comment

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