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NOT amyloidosis; Water in Heart?

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  • NOT amyloidosis; Water in Heart?

    My sister with HCM has a dual chamber pacemaker and defibrillator. Her pacemaker has three leads but only two were put in; Recently, her doctors wanted to install the 3rd lead but found water in her heart. For the past couple of months, they haven't been able to do schedule the surgery because of this complication and recently thought she had amyloidosis but now thinks that she does not. Her atrial fibrillation is very chronic and she has fatigue, migraines, nausea, blue lips and fingers, etc.
    1) Has anyone had water found in their hearts and did the doctors find out what is causing it or why the water was in their heart?
    2) Has anyone had digestive problems such as chronic reflux, nausea, lactose intolerance, and other symptoms directly linked to their HCM?
    The reason why I ask is because I have celiac disease, a genetic, autoimmune disease in which my immune system attacks and destroys my intestinal lining if I eat gluten, a protein in wheat, rye, and barley Celiac disease has much of these same symptoms (symptomless as well) and can lead to high morbidity and even death if not diagnosed early and treated with a livelong adherence to a gluten-free diet. Celiac disease is associated with dilated cardiomyopathy. The prevalence of celiac disease in the U.S. is 1 in 133 people (Archives of Internal Medicine, February 2003, Vol 163), considered one of the most common genetic diseases of humankind. My sister has not been tested for celiac disease, partly because doctors in the U.S. aren't as educated about the disease as in Europe and have been taught in medical school that it's a rare disease.
    I am a writer for www.celiac.com and I have discussed the heart association with celiac disease at this site if a search of my name is made. I myself began getting chronic heart symptoms and was diagnosed with mitral valve regurgitation after the doctor told me to eat gluten in order to diagnose me. I myself have been evaluated 3 times before for HCM but have not been found to have it nor have been found to have MVR before.
    Any info. you can offer, esp. re: water in the heart will be appreciated. Laura Yick
    HCM & diastolic/systolic HF (burn-out HCM) DX in 2010
    Brother 34, sister 45, & mother 73 passed away from HCM burn-out/CHF/DCM
    Sister @ 41 got heart transplant on Valentine's day 2002
    Oldest sister, diagnosed with HCM in 2010
    only niece cleared by genetic testing; son not genetically tested yet
    Suspected HCM in maternal grandmother (d. 39), 2nd cousin (d. 33),
    maternal grand aunt (d. 51), & maternal great grandmother (d. 50s); with hrt. conditions/hrt. surgery/kidney d.

  • #2
    Re: NOT amyloidosis; Water in Heart?

    Laura, Sounds like maybe "water in the heart" is the doc's way of describing something he should put the official name to so your sister can actually research it. She shouldn't have to speculate on what it might mean. "Not amyloidosis" sounds good, though. Linda

    Comment


    • #3
      Re: NOT amyloidosis; Water in Heart?

      Laura - We have known each other for years now...this is the 1st time I hear you mention MVP in yourself.... This is something you should pay close attention to. Have you seen a specialist for a consult?

      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: NOT amyloidosis; Water in Heart?

        Has anyone heard of "water in the heart" used for any condition, complication, diagnosis, with a name attached to it? My sister's do not know why and I think that's why they haven't come up with a name.
        Thanks, Laura
        HCM & diastolic/systolic HF (burn-out HCM) DX in 2010
        Brother 34, sister 45, & mother 73 passed away from HCM burn-out/CHF/DCM
        Sister @ 41 got heart transplant on Valentine's day 2002
        Oldest sister, diagnosed with HCM in 2010
        only niece cleared by genetic testing; son not genetically tested yet
        Suspected HCM in maternal grandmother (d. 39), 2nd cousin (d. 33),
        maternal grand aunt (d. 51), & maternal great grandmother (d. 50s); with hrt. conditions/hrt. surgery/kidney d.

        Comment


        • #5
          Re: NOT amyloidosis; Water in Heart?

          Has anyone heard of "water in the heart" used for any condition, complication, diagnosis, with a name attached to it? My sister's doctors do not know why she has water in the heart and I think that's why they haven't come up with a name.
          Thanks, Laura
          HCM & diastolic/systolic HF (burn-out HCM) DX in 2010
          Brother 34, sister 45, & mother 73 passed away from HCM burn-out/CHF/DCM
          Sister @ 41 got heart transplant on Valentine's day 2002
          Oldest sister, diagnosed with HCM in 2010
          only niece cleared by genetic testing; son not genetically tested yet
          Suspected HCM in maternal grandmother (d. 39), 2nd cousin (d. 33),
          maternal grand aunt (d. 51), & maternal great grandmother (d. 50s); with hrt. conditions/hrt. surgery/kidney d.

          Comment


          • #6
            Re: NOT amyloidosis; Water in Heart?

            Are they possibly meaning fluid in the sac around the heart? If so, this is something they should be able to explain to her. Are they being vague for a reason? She shouldn't have to make guesses and speculate. Linda

            Comment

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