Guest guest Posted June 22, 2011 Report Share Posted June 22, 2011 This is what baffles me - it seems like the folks on this board who are doing really well have room for things they enjoy but aren't exactly healthy(soda contains sodium, right? hence " soda " ?) or fast food or whatever. My indulgences - Asian food cooked by someone else (I HATE COOKING but do it anyway) - always end in headaches, elevated BP, and a 2 to 5 pound gain in water weight. From a single meal! Here's hoping the spiro or eplerenone offers me at least that much freedom... > >> > >> >> > > >> > >> >> > 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 > >> > >> >> > polymenorrhea > >> > >> >> > * I can't DASH due to hereditary fructose intolerance > >> > >> >> > > >> > >> >> > I 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. > >> > >> >> > > >> > >> >> > > >> > >> >> > -msmith1928 > >> > >> >> > 45, 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 > >> > >> >> > > >> > >> >> > >> > >> > > >> > >> > > >> > >> > > >> > >> > > >> > >> > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2011 Report Share Posted June 23, 2011 Maybe you have a nut allergy? Try cutting them out and double down on the scrambled eggs? You can make your own asian chow without the salt. I make a pretty mean dish without any added salt. I love Asian food too, but i pretty much gave it up unless I make them myself. ============================================================================45-Male-Caucasian, 5'9"- 234lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 1800mg Calcium, 1000mg Magnesium, 100,000UI Vit D (weekly), 20mg OmeprazoleSide effects: Gynecomastia, stomach inflammationOther Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head and Pelvis. Benign Lung Nodules, Fibromyalgia, Scarring on Right Kidney Lower Pole, Right Flank Pain DASH: Started "sort of" DASHing 5/3/2011 To: hyperaldosteronism Sent: Thursday, June 23, 2011 12:24 AMSubject: Re: eat better This is what baffles me - it seems like the folks on this board who are doing really well have room for things they enjoy but aren't exactly healthy(soda contains sodium, right? hence "soda"?) or fast food or whatever. My indulgences - Asian food cooked by someone else (I HATE COOKING but do it anyway) - always end in headaches, elevated BP, and a 2 to 5 pound gain in water weight. From a single meal!Here's hoping the spiro or eplerenone offers me at least that much freedom...> >> > >> >> >> >> > >> >> > 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> >> > >> >> > polymenorrhea> >> > >> >> > * I can't DASH due to hereditary fructose intolerance> >> > >> >> >> >> > >> >> > I 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.> >> > >> >> >> >> > >> >> >> >> > >> >> > -msmith1928> >> > >> >> > 45, 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> >> > >> >> >> >> > >> >>> >> > >> >> >> > >> >> >> > >> >> >> > >> >> >> > >>> >> > >> >> > >> >> > >> >> > >> >> > >> >> >> >>> >> >> Quote Link to comment Share on other sites More sharing options...
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