Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Hi , I am so sorry about the probable Alports diagnosis. How discouraging to know that Alports almost always leads to ESRD. I am just so sorry. I am sure it will be a long week waiting for Saturday. Please do let us know what you hear on Saturday. My heart goes out to you and Rob. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 The nephrologist called tonight and wanted us to bring any of Rob's siblings to the appointment...he wanted to screen them for Alport syndrome, an inherited kidney disorder. Rob is adopted, he had forgotten that fact. He also said that there was NO injury from all the NSAID use over the last 2 years for his arthritis. He said that they suspect Alport's and it could be that or 2 or 3 other things, but he does NOT have iga nephropathy. Alport's syndrome leads to ESRD pretty much inevitably in males. Males can also have eye disorders and hearing loss. The only good news I gathered about this disease is that after transplant, Alport's does not affect the transplanted kidney. He is consulting with other nephrologists and should have more to tell us at the appointment. Our appointment is not until Saturday. Its going to be a long week. and Rob 15 (also with juvenile ankylosing spondylitis) On Mon, 23 Aug 2004 22:12:10 EDT MB10spro@... writes: Hi Billie, I am currently on 50 mg prednisone daily and 150 mg cytoxan, 15mg lisinopril, 1 prevacid, 6 fish oils, a daily vitamin an so on and so on. Started my first week of medication at 80mg prednisone and 200 mg cytoxan. Right now my last CCR was 73 which is still good and my last creatine was 1.5. It started a couple months ago at 1.6 and then went up to 2.0 so I don't know if it was just a one time drop this last time but I hope not. I think my doctor is being aggressive with my case because my first signs of anything IGA related was my first high BP in May of this year. I gave blood in January and April and my BP's were fine although my cholesterol was a little higher in April. Between June and July my creatine went from 1.6 to 2.0 and my BUN from 26 to 33. My neph thinks that the cytoxan was needed to stop the kidney function decline and that the prednisone and Imuran after will have a positive effect on preserving it. My BP is under control and running anywhere from 105 to 120 over 65 to 75. If I can just get my protein under control I will feel a lot better about the situation(currently 3.6g 24hr). Where are your levels at and is your doctor basing your meds on the study posted on the files section of this site??? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 , I'm sorry to hear of his diagnosis. At least you know what you are dealing with now and can move on with it. The good thing is that it doesn't recur within a transplant like IgAN can. I believe I said it before but please feel free to continue posting here with us as many kidney diseases are treated similarly. Let us know what the nephs come up with for him on Sat. Amy Re: 's diagnosis The nephrologist called tonight and wanted us to bring any of Rob's siblings to the appointment...he wanted to screen them for Alport syndrome, an inherited kidney disorder. Rob is adopted, he had forgotten that fact. He also said that there was NO injury from all the NSAID use over the last 2 years for his arthritis. He said that they suspect Alport's and it could be that or 2 or 3 other things, but he does NOT have iga nephropathy. Alport's syndrome leads to ESRD pretty much inevitably in males. Males can also have eye disorders and hearing loss. The only good news I gathered about this disease is that after transplant, Alport's does not affect the transplanted kidney. He is consulting with other nephrologists and should have more to tell us at the appointment. Our appointment is not until Saturday. Its going to be a long week. and Rob 15 (also with juvenile ankylosing spondylitis) On Mon, 23 Aug 2004 22:12:10 EDT MB10spro@... writes: Hi Billie, I am currently on 50 mg prednisone daily and 150 mg cytoxan, 15mg lisinopril, 1 prevacid, 6 fish oils, a daily vitamin an so on and so on. Started my first week of medication at 80mg prednisone and 200 mg cytoxan. Right now my last CCR was 73 which is still good and my last creatine was 1.5. It started a couple months ago at 1.6 and then went up to 2.0 so I don't know if it was just a one time drop this last time but I hope not. I think my doctor is being aggressive with my case because my first signs of anything IGA related was my first high BP in May of this year. I gave blood in January and April and my BP's were fine although my cholesterol was a little higher in April. Between June and July my creatine went from 1.6 to 2.0 and my BUN from 26 to 33. My neph thinks that the cytoxan was needed to stop the kidney function decline and that the prednisone and Imuran after will have a positive effect on preserving it. My BP is under control and running anywhere from 105 to 120 over 65 to 75. If I can just get my protein under control I will feel a lot better about the situation(currently 3.6g 24hr). Where are your levels at and is your doctor basing your meds on the study posted on the files section of this site??? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Thanks , prayers are appreciated. and Rob 15 On Mon, 23 Aug 2004 23:06:45 EDT W4JC@... writes: Hi , I am so sorry about the probable Alports diagnosis. How discouraging to know that Alports almost always leads to ESRD. I am just so sorry. I am sure it will be a long week waiting for Saturday. Please do let us know what you hear on Saturday. My heart goes out to you and Rob. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Thanks Amy. I am searching Yahoo tonight for Alport's groups. But I will stick around here. You guys are amazing. and Rob 15 On Mon, 23 Aug 2004 21:16:28 -0600 " Amy Griswold " writes: , I'm sorry to hear of his diagnosis. At least you know what you are dealing with now and can move on with it. The good thing is that it doesn't recur within a transplant like IgAN can. I believe I said it before but please feel free to continue posting here with us as many kidney diseases are treated similarly. Let us know what the nephs come up with for him on Sat. Amy Re: 's diagnosis The nephrologist called tonight and wanted us to bring any of Rob's siblings to the appointment...he wanted to screen them for Alport syndrome, an inherited kidney disorder. Rob is adopted, he had forgotten that fact. He also said that there was NO injury from all the NSAID use over the last 2 years for his arthritis. He said that they suspect Alport's and it could be that or 2 or 3 other things, but he does NOT have iga nephropathy. Alport's syndrome leads to ESRD pretty much inevitably in males. Males can also have eye disorders and hearing loss. The only good news I gathered about this disease is that after transplant, Alport's does not affect the transplanted kidney. He is consulting with other nephrologists and should have more to tell us at the appointment. Our appointment is not until Saturday. Its going to be a long week. and Rob 15 (also with juvenile ankylosing spondylitis) On Mon, 23 Aug 2004 22:12:10 EDT MB10spro@... writes: Hi Billie, I am currently on 50 mg prednisone daily and 150 mg cytoxan, 15mg lisinopril, 1 prevacid, 6 fish oils, a daily vitamin an so on and so on. Started my first week of medication at 80mg prednisone and 200 mg cytoxan. Right now my last CCR was 73 which is still good and my last creatine was 1.5. It started a couple months ago at 1.6 and then went up to 2.0 so I don't know if it was just a one time drop this last time but I hope not. I think my doctor is being aggressive with my case because my first signs of anything IGA related was my first high BP in May of this year. I gave blood in January and April and my BP's were fine although my cholesterol was a little higher in April. Between June and July my creatine went from 1.6 to 2.0 and my BUN from 26 to 33. My neph thinks that the cytoxan was needed to stop the kidney function decline and that the prednisone and Imuran after will have a positive effect on preserving it. My BP is under control and running anywhere from 105 to 120 over 65 to 75. If I can just get my protein under control I will feel a lot better about the situation(currently 3.6g 24hr). Where are your levels at and is your doctor basing your meds on the study posted on the files section of this site??? Mike Quote Link to comment Share on other sites More sharing options...
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