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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • burnt out stage

    Could someone please tell me of a good web site i could find some reading on the end stage of this disease
    Thank You in advance
    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

  • #2
    Re: burnt out stage

    Information on end stage HCM is poorly understood, it can act in a similar fashion to a dilated cardiomyopathy. However it is important we know WHAT it is we are dealing with before you start getting too far into this. We do not know what is going on and an HCM specialist is the best to advise you, not a website (not even this one).

    Please talk to your doctor.

    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)

    Comment


    • #3
      Re: burnt out stage

      Good advice Lisa. Do not get all worked up over Burn out stage. I actually consider all of us HCM'ers burned out. Aren't we all sick of it, some a little more so than others. As a to be transplant patient they have never told me I am in burn out stage. Keep positive attitudes it helps!!!
      Midge

      Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
      ICD&Pacemaker 1996
      Heart transplant March 19, 2004 @ Mayo Rochester
      Mom of Kaye.

      Comment


      • #4
        Re: burnt out stage

        Midge

        I'm sorry, i am just putting the wagon before the horse as my mother use to say, i will wait til i go to the doctor in Richmond Virginia next Thursday, how are you feeling these days, i could be feeling better, but i have good days and bad days, just like everyone else, So you think your transplant is coming soon? My husband wants me to look imto that but, i don't need that yet, I told him let's see what the new cardio dr. says first, could you tell me what Super ventricular premature beats are, according to my holter monitor, i have several of them a day, well i hope you are feeling well, i haven't seen you much here lately

        Take care
        Shirley
        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

        Comment


        • #5
          Re: burnt out stage

          Shirley, I'm assuming you mean supra-ventricular beats. These are beats that originate above the ventricles and are usually considered to be less concerning than those that start out or originate in the ventricles. They are usually PAC's or premature atrial contractions, but may come from that border area (junctional) between the atria and ventricles, so are still supra-ventricular. Sometimes you will hear about PJC's or premature junctional beats(also supraventricular). PVC's are premature ventricular contractions. Some people are never aware of any of these irregular beats as they happen. Linda

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          • #6
            Re: burnt out stage

            Linda i gotcha, thank you when you explained it i understand, your explaination, the way the dr. had it on paper , it was loosing me, i sure hope i find some answers next week at the doctor, It's driving me nuts not knowing how bad iam, i am grateful that my pcp dr. sent me for the Echo, just like he said i am one of the lucky ones, some people find out after SCD, and only the family is told, and i gave him a great big hug, and said thank you, i know this sight has been a god sent to me, this waiting has been awful, hope you are doing well,
            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

            Comment


            • #7
              Re: burnt out stage

              it is really confusing --they should just say "atrial" but I guess that technically some palpitations arise from not the atria and not the ventricles so they need a name, but whenever you say "ventricle" it scares people b/c vtach and vfib are bad, but supra-ventricular is not ventricular at all, so its not bad (not great, but you aren't going to keel over).

              my two cents

              Comment


              • #8
                Re: burnt out stage

                Good point Sarah... PVC's lets see if we can come up with a clearer way of saying "not so bad VC's"
                Petty Ventricular Contractions????
                Pretty-harmless VC's????
                just a thought
                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)

                Comment

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