Guest guest Posted September 25, 2004 Report Share Posted September 25, 2004 Hi na, Feeling angry is really a part of grief which is the process of accepting the loss of your expectation for good health. The five stages are: denial, anger, bargaining, depression and acceptance. Please know the anger you are feeling this week is normal, and it will pass. It sounds like your frustration is largely from not being diagnosed earlier, but really, it would not have changed the course of IgAN much. Unfortunately, many of us are not diagnose until year after we first have symptoms. I myself had symptoms since the mid 70s, but did not have my first diagnosis until 1987. The good news is that you seem to have a very stable IgAN because after seven years your labs are near normal values. A normal creatinine clearance for a female is 90-120, and you are just below 90 at 86 ml/min. The absence of protein is also a very good sign, and a serum creatinine of 0.75 is just excellent! The best thing you can do is to take care of your blood pressure and make sure it stays low. When I was at your stage, I saw the Neph once a year, so it seems your new doctor is monitoring you very closely which is good. Remember that for the majority of people with IgAN it does not ever progress to end stage renal disease. I hope this is of some encouragement to you. In a message dated 9/24/2004 8:03:58 PM Pacific Daylight Time, farizada_mardel@... writes: > > Hi, everyone, I would like to thank all your loving replies. I > appreciate so much. > I want to say that I'm in my " anger " week. > I can't stop thinking if killing my former stupid ignorant doctor > would help me to solve any problem, obviously I'm not saying that > seriously. > My first macrohematuria was in November 1996, and from then I went to > the urologist, with a major reputation in my city, 1 or 2 times a > year, because of episodes of gross hematuria. When tired of, what I > thought were, useless visits to the doctor's, ecografias and Rx, that > showed the absense of kidney stones, I asked the doctor for a > definitive diagnosis; he always said I had NO CANCER, as a joke (can > you believe it?)and that I was OK. He answered that 15 % of hematuria > have no reason, and I assumed I had nothing, at least important. I > also asked if the 48/72 hs previous flu symptoms and the anemia had > something to do, and he said " NOTHING " , as if the ALWAYS-THE-SAME- > SYMPTOMS were merely by chance.I did believe so at that time. I trust > him.I stopped visiting him, I think it was in 1999. > After that, I had other episodes of macrohematuria, about once a > year. Many doctors read my lab results, and they always sent me to do > a Rx, that were normal. In 2003 my urine lab results were NORMAL, > nothing there. Doctor said it was not necessary a visit to the neph. > In january 2004, I had a gross hematuria that did last 4 days, after > a throat infection, with fieber, nauseas, vomits, loss of appetite, I > thought I was going to die. My lab results 15 days later were anemia, > microhematuria, and proteinuria, but my blood creatinine was 0.96 > mg/dl, still normal.The lab results after visiting the neph 15 days > later were blood creatinine 0.75 mg/dl, clearence of creat 112.84 > ml/min, proteinuria 0.62 g/24 hs, and of course the never-ending > microhematuria. My neph wanted to wait 4 months, but my proteinuria > in July was 1.04 g/24 hs, and clearence of creat. 88 ml/min, 848 > mg/24 hs, and again the microhemy. > So, He decided the biopsy, which result was glomerulosclerosis > segmentaria and global focal with IgA and IgG mesangial(two of the 19 > glomeruli taken were esclerosados), and tubular atrofia. > My neph said almost nothing has happened, because I'm not in renal > failure, but I know the damage. I cant'stop thinking I could take > much care, and there can be less damage after apparently 8 years of > unknown disease. > Now my clearance of creatinine is 968 mg/24 hs, 86 ml/min, and no > proteinuria, but microhemy, I have to go to doctor's in 3 months. > Thanks again for being there and read this late-at-night-complaining. > Kisses. > na Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2004 Report Share Posted September 25, 2004 Hi na, I got the runaround with this diagnosis too. My ob/gyn was the first to discover I had blood in my urine, but she told me that I was probably just getting my period. Then a few months later when I had visible blood, she referred me to a urologist who did all the tests to look for kidney stones. When they came back normal, he told me " Oh you're just going to be one of those people who has blood and protein in their urine. Don't worry about it. " Then I had another episode of visible blood and I called the urologist back and insisted that there had to be a connection between the respiratory infections and the blood and he assured me that there was no connection. So my husband typed in " respiratory infection and hematuria " into Google and found the IgA Nephropathy. So I printed out what he found and took it to my general doctor who finally got me referred to a neph. Fortunately so far I have a mild case, but it is frustrating to have to keep insisting that something is wrong when doctors seem to want to dismiss it as nothing to worry about. I've learned to be more assertive about my own health too. I'm so glad your igan didn't progress while you were trying to find out what was wrong. I hope everything stays stable for you. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Hi , thanks again for your words, they really help me a lot, I know my feelings are jumping up and down, fighting one to each other, in my confusing mind. Today I'm still feeling this kind of frustation, but I'm better than friday, and sometimes I feel I have no right to be angry or sad, because my lab results are fine. As you said this will pass, I hope quikly. Kisses. na > Hi na, > > Feeling angry is really a part of grief which is the process of accepting the > loss of your expectation for good health. The five stages are: denial, > anger, bargaining, depression and acceptance. Please know the anger you are > feeling this week is normal, and it will pass. > > It sounds like your frustration is largely from not being diagnosed earlier, > but really, it would not have changed the course of IgAN much. Unfortunately, > many of us are not diagnose until year after we first have symptoms. I > myself had symptoms since the mid 70s, but did not have my first diagnosis until > 1987. > > The good news is that you seem to have a very stable IgAN because after seven > years your labs are near normal values. A normal creatinine clearance for a > female is 90-120, and you are just below 90 at 86 ml/min. The absence of > protein is also a very good sign, and a serum creatinine of 0.75 is just > excellent! The best thing you can do is to take care of your blood pressure and make > sure it stays low. When I was at your stage, I saw the Neph once a year, so it > seems your new doctor is monitoring you very closely which is good. Remember > that for the majority of people with IgAN it does not ever progress to end > stage renal disease. > > I hope this is of some encouragement to you. > > > > > In a message dated 9/24/2004 8:03:58 PM Pacific Daylight Time, > farizada_mardel@y... writes: > > > > > Hi, everyone, I would like to thank all your loving replies. I > > appreciate so much. > > I want to say that I'm in my " anger " week. > > I can't stop thinking if killing my former stupid ignorant doctor > > would help me to solve any problem, obviously I'm not saying that > > seriously. > > My first macrohematuria was in November 1996, and from then I went to > > the urologist, with a major reputation in my city, 1 or 2 times a > > year, because of episodes of gross hematuria. When tired of, what I > > thought were, useless visits to the doctor's, ecografias and Rx, that > > showed the absense of kidney stones, I asked the doctor for a > > definitive diagnosis; he always said I had NO CANCER, as a joke (can > > you believe it?)and that I was OK. He answered that 15 % of hematuria > > have no reason, and I assumed I had nothing, at least important. I > > also asked if the 48/72 hs previous flu symptoms and the anemia had > > something to do, and he said " NOTHING " , as if the ALWAYS-THE-SAME- > > SYMPTOMS were merely by chance.I did believe so at that time. I trust > > him.I stopped visiting him, I think it was in 1999. > > After that, I had other episodes of macrohematuria, about once a > > year. Many doctors read my lab results, and they always sent me to do > > a Rx, that were normal. In 2003 my urine lab results were NORMAL, > > nothing there. Doctor said it was not necessary a visit to the neph. > > In january 2004, I had a gross hematuria that did last 4 days, after > > a throat infection, with fieber, nauseas, vomits, loss of appetite, I > > thought I was going to die. My lab results 15 days later were anemia, > > microhematuria, and proteinuria, but my blood creatinine was 0.96 > > mg/dl, still normal.The lab results after visiting the neph 15 days > > later were blood creatinine 0.75 mg/dl, clearence of creat 112.84 > > ml/min, proteinuria 0.62 g/24 hs, and of course the never-ending > > microhematuria. My neph wanted to wait 4 months, but my proteinuria > > in July was 1.04 g/24 hs, and clearence of creat. 88 ml/min, 848 > > mg/24 hs, and again the microhemy. > > So, He decided the biopsy, which result was glomerulosclerosis > > segmentaria and global focal with IgA and IgG mesangial(two of the 19 > > glomeruli taken were esclerosados), and tubular atrofia. > > My neph said almost nothing has happened, because I'm not in renal > > failure, but I know the damage. I cant'stop thinking I could take > > much care, and there can be less damage after apparently 8 years of > > unknown disease. > > Now my clearance of creatinine is 968 mg/24 hs, 86 ml/min, and no > > proteinuria, but microhemy, I have to go to doctor's in 3 months. > > Thanks again for being there and read this late-at-night- complaining. > > Kisses. > > na > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Hi Cheryl, beautiful name, you're right, and it's awful to be treated like a neurotic by doctors, from whom I was expenting what I consider is their due, to take much care of a person's health, listen the patient opinion, that knows what is uncommon in her body. Thanks for sharing your case with me, and I'm glad you're doing well. Kisses from the heart. na > Hi na, > I got the runaround with this diagnosis too. My ob/gyn was the first to > discover I had blood in my urine, but she told me that I was probably just getting > my period. Then a few months later when I had visible blood, she referred me > to a urologist who did all the tests to look for kidney stones. When they > came back normal, he told me " Oh you're just going to be one of those people who > has blood and protein in their urine. Don't worry about it. " Then I had > another episode of visible blood and I called the urologist back and insisted > that there had to be a connection between the respiratory infections and the > blood and he assured me that there was no connection. So my husband typed in > " respiratory infection and hematuria " into Google and found the IgA Nephropathy. > So I printed out what he found and took it to my general doctor who finally > got me referred to a neph. Fortunately so far I have a mild case, but it is > frustrating to have to keep insisting that something is wrong when doctors seem > to want to dismiss it as nothing to worry about. I've learned to be more > assertive about my own health too. I'm so glad your igan didn't progress while you > were trying to find out what was wrong. I hope everything stays stable for > you. > Cheryl > > > Quote Link to comment Share on other sites More sharing options...
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