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Stiff heart

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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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  • #1

    Stiff heart

    I have a question for someone, ok if i have a stiff heart to the point i am being paced at 98% of the time because my heart won't relax, could that be known as Restricted cardiomyopathy now along with HOCM, doctor Gilligan is a little concerned that i'm on the max dose of Diltiazem and my heart rate is still in the 80s and 90s and now i'm starting to get chest pain even sitting in a chair, i talked with him this morning and he said he would like for me to come in and possibly talk about surgery if my echo shows my heart is worse, which concerns me but in a way a big relief as i'm over the being tired all the time and getting up 4 times a night to go to the bathroom, i have always been the type of person on the go, and now i spend alot of my day with my mind wanting to go but my body saying noway, i fold a load of clothes and i have to sit for a while to catch my breath, or make my bed and sit on it so my legs don't collapse on me, i try to push myself and do things around the house and then i pay for it that night or the next day, i'm sure people here go thru the same but i guess i just need to vent from time to time, i don't want to worry my family they worry enough, i think i am going to tell doctor Gilligan i'm ready for the surgery, if he thinks it will give me back just a little of my life,

    Thanks for listening, I hope everyone is doing well today

    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
    Tags: None
  • #2
    Re: Stiff heart

    Hi Shirley,

    Sorry I can't answer any of your questions, but it sure sounds to me like your brain is still working well. It appears your taking all the right steps, and hopefully, all will be resolved satisfactorily - and soon.

    Hang in there kiddo. The Calvary is on the way.

    Burt

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    • #3
      Re: Stiff heart

      I am in a bit of a rush at the moment - I will address this post in the morning.
      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

      • #4
        Re: Stiff heart

        Shirley, It sounds like your symptoms are getting to the point that something needs to be done to help relieve them. If your test results indicate surgery is in order I would give it serious consideration. From what I have read on the board it sounds as if you have been dealing with these symptoms for some time. The idea is to do what you need to do so you can participate in "normal" activities. I hope things take a turn for the better for you.
        Steve.

        Comment

        • #5
          Re: Stiff heart

          Shirley,
          What surgery are u able to have? I would do almost anything now to be
          able to "participate" in life.
          I am unable to do most everything. My husband does everything, Oh i do pick up the broom from time to time or do some dusting but not for very long and then i am really down for days now.
          I have been getting dizzy more too.
          I have no options, the transplant team here at the u of washington do not feel i am bad enough yet to get on the list. i guess i need to be dead first.
          I have tried calling the Dr i saw last year but i think he has given up on me. i don't hear anything back, but then i am too exhausted to be persistent.
          I hope you are able to get some relief. Get it while you can.
          God Bless
          Laura Johnson

          Comment

          • #6
            Re: Stiff heart

            Laura
            i'm hopefully going to have the myectomy, i too have gotten worse over the past year and a half now, i think they are leaning towards a mitral valve repair also, my doctor is telling me that 80% of the people having the surgery get alot of relief from it well i think that is pretty good odds, you sound like you need to go see another doctor that specializes in HCM, if you haven't talked with lisa yet i would she can help a great deal

            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

            • #7
              Re: Stiff heart

              Hi Laura,

              I'm really sorry to hear you are having problems. Do you have obstruction? Have the cardiologists at UW med center told you that you may be a candidate for transplantation?

              I was diagnosed with HOCM back in 1996 at the University of Washington medical center when I was 26. My doctor was April Stempien Otero who was really nice. She was quite knowlegable about HCM, though I'm not sure if this is her area of expertise. I now live in Australia so don't see the docs there anymore. I am contemplating doing surgery (for obstruction) though my main problems are not really related to exercise and chest pain, but rather headaches, confusion and dizziness. The docs here suspect it may be related to low blood pressure (a side effect of beta blockers??), but they have no answers, or solutions! This makes me wonder if surgery would help me.

              Sounds like you difinately need to get in touch with a HCM expert. Lisa etc. should be able to point you in the right direction. I hope things improve for you.

              Take care,

              Paul
              Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

              Comment

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