failed AVS story - long, please read carefully before commenting

[Guest guest]

My nephrologist has gone over my AVS and concluded that it was not correctly done. No surprises there - we all know that the failure rate is pretty high. He believes that the entire time the interventional radiologist was in my left hepatic vein, rather than adrenal vein. You may recall that my results came back showing that the RIGHT adrenal was overproducing aldo, while the left was normal. My tumor is on the LEFT.I asked him if it is possible that the LEFT could have a tumor that is doing nothing, and the RIGHT is overproducing due to a tumor that is too small to be seen by imaging methods, or, if the more likely conclusion is that the disease is bilateral. He told me both are possibilities and the only way to know is to have AVS done correctly.Seems simple enough to me - the obvious thing to do is repeat the AVS. Except the nephrologist is unwilling to have it repeated at UCLA. His recommendation is that I go to Mayo or NIH.That is NOT an option for me. I have no funds for travel and as a lifelong Californian, I do not have friends in those parts of the country with whom I could stay. I am not wealthy, have no savings, no credit, and no income other than my paycheck, and thanks to massive student loans I live paycheck-to-paycheck.The nephrologist wants to try me on eplerenone, rather than repeat the AVS. I do not want this to happen - I turn 46 years YOUNG on Friday and I do not want a lifetime of meds unless it is the last resort. If there is the possibility to not be a sick person for the rest of my life, I think I have a right to that chance.Please keep in mind:I can't take spiro due to severe gynecomastia and nonstop polymenorrheaI can't DASH due to hereditary fructose intoleranceI believe the only way I can accept a future of meds only is with conclusive proof that my disease is bilateral. Bottom line: I need to have UCLA repeat the AVS, and I need my insurance to cover it. I'm not sure how to go about this, since the physician who ordered it in the first place seems to have a personal bias against having it done there again. I'm meeting with my primary care doctor later today and hope to get him on my side to persuade the nephrologist to order the test again. If I can't persuade him to do that, I have no idea what to do next. Allegedly the specialists I have seen are the top experts at UCLA with regard to this, and at the moment I feel like they have given up on me.-msmith192845, nulliparous female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 3x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed, fexofenadine 180mg when needed; low sodium, fructose- and grain-free diet due to HEREDITARY FRUCTOSE INTOLERANCE; known drug allergies include PCN, sulfa, tetracycline