Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Hi , I was not officially diagnosed until 1997. I have had symptoms since I was a teenager, and had my first " inconclusive " biopsy in 1987, but it was not until my second biopsy that I had an official diagnosis. I have no doubt that I had IgAN since sometime in my early teens though because I had blood and protein in my urine since sometime in the early 70's. I did not start tracking my labs until my second biopsy in 97. At that time my creatinine was running 1.8-1.9 or so, with a clearance of about 50. Now I am running about 3 on creatinine but my clearance has dropped down to around 20-24. I don't have a lot of body mass so I will not be able to tolerate a very high creatinine level unfortunately. I have just this September been referred to the Renal Care team to start preparing for dialysis/transplant due to some of the problems I have been having the past months with weight loss, trouble eating protein, BP harder to manage, anemia worsening...just all the things that come up as you get closer to ESRD. Let me know if you have any further questions. In a message dated 9/2/2004 10:00:14 PM Pacific Daylight Time, sarahandderek@... writes: > , > thanks for the nice words regarding my post earlier today to . I'm not > the > wordsmith in my home, I'm the visual one, so anytime I'm given a nice > comment like > yours, I'm even more appreciative. > > You say you've had IgNA since your teens, were you diagnosed during your > teens or were > you given the foraml diagnosis much later? I am eager to hear stories of > folks who've lived > long with IgAN and are not yet on dialysis. If I may, where did your labs > begin and where > are they now? > > peace, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Hi Bonnie, Thank you so much for your sweet note. I have not seen the renal dietitian in several years, so I am not even sure if there are renal nutrient supplements such as Ensure or not. I guess I will find out September 13th. The good news is that my weight has been steady since I starting following Pierre's advise, so I am not as concerned about is as I was, except that I still don't think I am getting enough protein. Thanks! \ In a message dated 9/3/2004 3:12:58 PM Pacific Daylight Time, bd4679@... writes: > Hi , Thanks for sharing your personal story. I know we all think of > you daily and your wonderful spirit to continue with your goals, despite not > always feeling quite up to par. I truely wish your stay on the transplant > list is short lived. I am so glad you have such a supportive church group, I > hope and pray you will receive a live donor kidney soon. Regarding your weight > loss etc, are you able to take any type of renal nutrient supplement (like > Boost, Ensure etc) or don't they make anything like that yet for renal > patients? Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Hi , I only took Prednisone for about a month a few years ago. I did not do well on it at all and was quickly weaned off. If you can figure out how to get the clearance above 40 again, let me know! What is your clearance now, and how are they trying to treat you? In a message dated 9/3/2004 3:35:58 PM Pacific Daylight Time, sarahandderek@... writes: > Have you never taken prednisone etc.? > > If I just knew that magic to get my creatnine clearence back above 40??? > > Peace to you and I hope you have a good, informative visit with the renal > team. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Hi , Thanks for sharing your personal story. I know we all think of you daily and your wonderful spirit to continue with your goals, despite not always feeling quite up to par. I truely wish your stay on the transplant list is short lived. I am so glad you have such a supportive church group, I hope and pray you will receive a live donor kidney soon. Regarding your weight loss etc, are you able to take any type of renal nutrient supplement (like Boost, Ensure etc) or don't they make anything like that yet for renal patients? Bonnie W4JC@... wrote:Hi , I was not officially diagnosed until 1997. I have had symptoms since I was a teenager, and had my first " inconclusive " biopsy in 1987, but it was not until my second biopsy that I had an official diagnosis. I have no doubt that I had IgAN since sometime in my early teens though because I had blood and protein in my urine since sometime in the early 70's. I did not start tracking my labs until my second biopsy in 97. At that time my creatinine was running 1.8-1.9 or so, with a clearance of about 50. Now I am running about 3 on creatinine but my clearance has dropped down to around 20-24. I don't have a lot of body mass so I will not be able to tolerate a very high creatinine level unfortunately. I have just this September been referred to the Renal Care team to start preparing for dialysis/transplant due to some of the problems I have been having the past months with weight loss, trouble eating protein, BP harder to manage, anemia worsening...just all the things that come up as you get closer to ESRD. Let me know if you have any further questions. In a message dated 9/2/2004 10:00:14 PM Pacific Daylight Time, sarahandderek@... writes: > , > thanks for the nice words regarding my post earlier today to . I'm not > the > wordsmith in my home, I'm the visual one, so anytime I'm given a nice > comment like > yours, I'm even more appreciative. > > You say you've had IgNA since your teens, were you diagnosed during your > teens or were > you given the foraml diagnosis much later? I am eager to hear stories of > folks who've lived > long with IgAN and are not yet on dialysis. If I may, where did your labs > begin and where > are they now? > > peace, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Hi , Thanks for your reply. How interesting you mention body mass and weight. I am five foot eleven inches, have a medium to small skeleton, and have always weighed around 145#. For a while my weight was around 152#. But, (there's always a but) I have lost weight and am now hovering around 135- 138. My clothes fit great and I am wearing a size 8 for the first time ever, I've always been a size 12, yet I have had a nagging feeling something is wrong and that dropping ten pounds in a couple of months while on the same diet is abnormal. So I find it interesting you mentioning tolerance for higher creatnine levels being related to body mass. Since my son came home last year my diet has been effected, not enough time or energy to feed me after feeding him, and now that he's running I am moving a lot too. If I could just get my calories up. Thanks again for your story. It does help me gain some perspective. My sweet hubby tries to talk with me about my fear that I'm getting closer to renal failure inspite all I've done to take care of myself, inspite deciding to adopt instead of giving birth, inspite how good things looked for so long, but hearing about someone who's in my shoes helps so much. Have you never taken prednisone etc.? If I just knew that magic to get my creatnine clearence back above 40??? Peace to you and I hope you have a good, informative visit with the renal team. Quote Link to comment Share on other sites More sharing options...
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