DELICATE THUNDER
THE SEARCH FOR A CURE
Since I began this journey I have been tested in nearly every form and fashion imaginable. I have been poked, prodded, injected, irradiated, scanned, biopsied, and operated on. I have had echocardiograms, transesophageal echocardiograms, petscans, catscans, EEG's, EKG's, tilt table tests, stress tests, MUGA scans, and I have had gallons and gallons of my blood drained and thrown away.
Below are the results of some of the more relevant of these tests.
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MRI of the Brain: MRI of the brain was normal. There was no evidence of structural lesion.
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EEG: EEG was normal. There was no evidence of seizures or focal disturbances.
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Carotid Ultrasound: Carotid ultrasound showed no significant stenosis but very mild intimal thickening. Vertebral flow was noted to be anterograde bilaterally.
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Echocardiogram: Echocardiogram shows a dilated left ventricle with decreased ejection fraction, mild left atrial dilation, moderate aortic insufficiency, concentric left ventricular hypertrophy, and hypertrophic cardio myopathy. No significant pericardial effusion mass, thrombus, or vegetation is seen. Also notable is that the patient has a bicuspid aortic valve.
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Electrocardiogram: Electrocardiogram shows normal sinus rhythm with nonspecific ST-T changes.
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MUGA scan: MUGA scan shows reduced ventricular function of twenty–seven percent (27%) Jan, 2002.
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Tilt Table Test: Dizziness and syncope were likely related to cardiomyopathy and orthostatic hypotension. (Positive tile table test).
Laboratory blood tests results after diagnosis of polycythemia vera:
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Elevated red blood cell count 6.05 (4.40 to 5.60),
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hemoglobin18.3 (13.7 to 16.7), and
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hematocrit 53.1 (40.0 to 48.0), with
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no normal white blood cell and platelet count.
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Normal electrolytes, glucose, serum urea nitrogen, creatinine, hepatic enzymes, thyrotropin; nonreactive rapid plasma reagin, and negative antinuclear antibodies.
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Bone marrow is normocellular and without tumor or granuloma, consistent with Polycythemia vera.(8)
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Testosterone level; Testosterone levels tested very low. Total testosterone is 56 ng/dL (reference range; 241ng/dL to 827 ng/dL) and free testosterone is 1.2 ng/dL (reference range; 8.7 ng/dL to 25.1 ng/dL)
Laboratory blood test results: 13 months after starting Testosterone therapy
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Serum Insulinlike Growth Factor I: level is low 109 ng/mL [reference range: 249 to 290]
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Growth Hormone Stimulation Test (using levodopa, 10mg/kg by mouth) to evaluate for possible adult onset GH deficiency.
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GH measurements are obtained at 0, 30, 60, and 120 minutes with the following levels: 0.2 ng/mL, 0.5 ng/mL, 2.4 ng/mL, 2.2ng/mL, respectively. Normal response is GH greater than 5 micrograms/L, the test indicates GH deficiency Idiopathic hypogonadotropic (hypothalamic-pituitary) failure.
Diagnosis: Patient has gonadotropin deficiency resulting from a defect in gonadotropin-releasing hormone (GnRH) secretion. Other potential causes of hypothalamic-pituitary failure include a congenital abnormality, tumor, or prior injury involving the hypothalamic-pituitary axis. (8)
Left Ventricular Ejection Fraction (LVEF)
Changes in LVEF during 8-year period as noted from either echocardiogram or MUGA studies. Normal LVEF is greater than 55%.
Date of study: 10/2000
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LVEF: 33% to 38%
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Relevant Findings & Notes: Moderately dilated LV, global hypokinesis, moderate AR
Date of study: 6/2001
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LVEF: 30% Relevant Findings & Notes: Moderately dilated LV, mild left atrial dilation, moderate AR, concentric LV hypertrophy, partially obstructed aorta, HCM.
Date of study: 12/2001
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LVEF: 27%
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Relevant Findings & Notes: Moderately dilated LV, mild left atrial dilation, moderate AR, concentric LV hypertrophy, partially obstructed aorta, HCM.
Date of Study: 1/2002
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LVEF: 27%
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Relevant Findings & Notes: Testosterone therapy started, Teslac and enalapril added, digoxin removed
Date of Study: 4/2003
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LVEF: 33%
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Relevant Findings & Notes: HGH therapy started
Date of Study: 10/2003
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LVEF: 42% Relevant Findings & Notes: LV has thinned and gained a nearly normal size. Other chambers appear normal in size.
Date of Study: 4/2004
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LVEF: 49%
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Relevant Findings & Notes: Mildly dilated LV, normal right ventricular size and contractility, moderate AR
Date of Study: 9/2005
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LVEF: 53%
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Relevant Findings & Notes: Mildly dilated LV, mild concentric LV hypertrophy, no segmental wall abnormalities, RV appears normal in size
Date of Study: 11/2006
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LVEF: 55%
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Relevant Findings & Notes: Mildly dilated LV, normal right ventricular size and contractility, moderate AR
Date of Study: 8/2007
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LVEF: 58%Relevant Findings & Notes: Mildly dilated LV, mild to moderate AR, normal LVEF
Date of Study: 5/2008
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LVEF: 67%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 12/2008
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LVEF: 66%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 7/2009
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LVEF: 65%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 8/2010
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LVEF: 66%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 3/2011
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LVEF: 64%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 9/2011
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LVEF: 65%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 5/2012
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LVEF: 67%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 11/2012
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LVEF: 66%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 4/2013
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LVEF: 67%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 12/2013
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LVEF: 67%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 4/2014
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LVEF: 67%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 12/2014
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LVEF: 65%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 5/2015
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LVEF: 67%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 12/2015
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LVEF: 67%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 5/2016
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LVEF: 66%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 12/2016
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LVEF: 67%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 5/2017
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LVEF: 65%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 12/2017
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LVEF: 67%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF
Date of Study: 5/2018
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LVEF: 67%
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Relevant Findings & Notes: Normal resting LV systolic function, higher than normal LVEF