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So many questions


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Abbygirl2 Find out more about Abbygirl2
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  • So many questions

    Hi, i guess I should have just added this to my last post....When I was pregnant with my last son and then again afterwards my card. did this weird test on me. During the Echo the tech. broke open something and waved it beneath my nose-it smelled and FELT horrible. My Card. said it was to see how my heart reacted under stress?? (He said my heart performed fine).
    Has anyone had this test done?
    I have never had a stress test done and my Card. told me at my last visit(Oct 03) that I was doing great and he wouldn't need to do another echo for a couple of years. Is this reasonable?
    I have never passed out/blacked out, no family history of sudden death, I have a 1.6cm(16mm) septal enlargement, EF 89%. My blood pressure is good(a bit low on the Atenelol), however I have shortness of breath and my heart speeds up quite quickly as I move about, I get lightheaded when I bend over AND I am tired most of the time. I also get skipped beats off and on. I was put on the Atenelol for my fast heart rate.
    My quality of life is quite poor at the time being, but I know a lot of it has to do with my anxiety level.
    How do you all go on every day without the fear that you will drop dead at any second? My Card told me not to participate in competetive sports or lift more that 10lbs. I haven't lifted my 3 yr old since he was about 9 months. I find it hard to enjoy life having to 'think' about everything I do.
    I get stuck in this rut of feeling sorry for myself and I don't want to. I want to participate in life, I am just so afraid of doing anything-going anywhere. My main goal right now is to lose weight(I have about 40lbs to go), so I am hoping that some of my symptoms will ease after. Sorry this is so long but this is the first time I have been able to talk to anyone that knows what I am going through. I don't feel so alone anymore
    It's not what you gather, but what you scatter that tells what kind of life you have lived.

    Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

  • #2
    Re: So many questions

    I am not sure if in your other post it was recommended that you contact the HCMA office and speak to Lisa. With her help, you should be able to get back the quality of life that you are looking for. Our phone number is 973-983-7429 and Lisa is in our office on Tuesdays and Thursdays from 9 a.m. to 5 p.m. Eastern time.

    We look forward to hearing from you soon.

    Life is 10% what happens to you and 90% what you do with what happens to you.


    • #3
      Re: So many questions

      Dear Abby,

      What you had was called a "stress echo" and they are pretty common. It is also standard to do an echo every 2 years unless you are having problems.

      It sounds like you are not properly medicated for your symtpoms. You don't have to feel like crap without a fight.

      I'm also concerned that you think you are going to drop dead even though (according to what you posted) you DON'T have any of the risk factors for sudden death. The VAST majority of HCMers live a full life span. If your doctor has scared you into thinking you are a time bomb, please find one who knows HCM as that one doesn't. And if you don't have the risk factors, there is really no reason to live in fear.

      You are entitled to see a specialist and you obviously require one b/c you aren't feeling up to snuff and current doctor isn't doing anything about it. You don't have to be at death's door to see someone who knows how to treat your condition.

      Good luck and take care,



      • #4
        Re: So many questions


        Welcome to the board. I can only reiterate the advice that others have given and suggest you find yourself a specialist who knows HCM. There is absolutely no reason for you to be living in fear as you are.

        By the way, the stuff they held under your nose during your echo was amyl nitrate, or what they refer to on the street as 'poppers'. It's very popular at the clubs. I had to chuckle a bit during my last echo... i've tried so hard not to do anything bad for my heart, only to have a licensed medical professional hold amyl nitrate under my nose and say 'here, sniff this'. Life's a kick, aint it?

        Take care of yourself,

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


        • #5
          Re: So many questions

          In short our goal at the HCMA is to help you live the best quality of live you can. One way we have helped so many others is to help them get to specialists who have a complete understanding of the condition and ALL treatment options.

          I think it would be a good idea that we help you find a specialist, you get a consult from them and work with your local doc and specialist to maximize your care.

          I will be in the office on Tuesday and Thursday next week and would be happy to help you get started on the road to feeling better!

          Best wishes,
          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)


          • #6
            Re: So many questions

            I grew up, lived and worked in New York City for forty-five years or more, and every time I stepped off the curb I never knew for sure if I would make it safely across the street. I’m now seventy one, and still do not know what will happen tomorrow.

            If you take common sense care of yourself you probably have a good chance to reach a hundred or more. There is absolutely no need to hide in a closet and let life pass you by for fear of what might or might not happen.

            Go talk to Lisa, get a good cardio who knows about HCM, get your medications squared away, and live a long happy life.


            • #7
              Re: So many questions

              I want to echo what the others said about consulting with an HCM specialist. I have a 2 1/2 year old son who weighs 32 lbs., and I pick him up and carry him all the time. I don't, however, carry him up stairs, because this is too hard for me. My doc allows me to do what is comfortable for me. (I do have an ICD now, so I don't worry so much about sudden death anymore), but you should be able to enjoy your life without waiting for the bomb to drop any moment. When you are preoccupied with when you might die (and you will at sometime, but it will probably won't be 40 or 50 years), you are depriving yourself of your children and family now, when you should be enjoying them.

              While competitive athletics are discouraged, every day living like a normal person is not. Please consult with a specialist who could then work with your regular cardiologist about your treatment. Call Lisa and let her advise you about the next step. She helped me, and she has a little girl, so she knows what is required of a mom to a young child.

              Best wishes,

              Daughter of Father with HCM
              Diagnosed with HCM 1999.
              Full term pregnancy - Son born 11/01
              ICD implanted 2/03; generator replaced 2/2005 and 2/2012
              Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.