Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Welcome to the group. It's not that long ago that I was a 35 year old father, except my kids were older than yours. Everyone's different in how fast IgAN progresses to end-stage renal failure, if it does at all, but for comparison's sake, to give you an idea... I had what looked like fairly mild IgAN, diagnosed via biopsy in the summer of 1993, but with micro blood and protein in urine long before that. At the time of my biopsy, my serum creatinine was about the same as yours is now, 150 more or less. It took 9 years before I reached the point where I had to start dialysis, in October of 2002. But, while I never had visible blood in my urine, and I never had heavy proteinuria, I did have some pretty wicked, hard to control high blood pressure. So, maybe if you can control that, you might be able to go a long way. But don't despair. You've got a lot of life to live before you ever get to dialysis or transplant, and a lot of life even after that. When do you start having symptoms. Well, in a way, you already have with the high blood pressure. Other than that though, with the possible exception of anemia which seems to vary greatly from one person to the next (for example, I didn't have to be treated for it until months after I started dialysis), I would say that some people might start some symptoms of chronic renal insufficiency at 30% kidney function or thereabouts, and almost certainly some between 20 and 30% kidney function. You are probably in the neighbourhood of around 50% right now, maybe a bit more, depending on how big you are and how much muscle you have. Look over the list of symptoms I posted in the " Renal Insufficiency Notebook " section of www.igan.ca . You may or may not have some of the early ones. Some people feel no symptoms at all until they are pretty close to dialysis. Me, I started feeling some around 30%, and, I suspect, excessive fatigue some time before that. During the time between 20 and 30%, I had a pale grey complexion, and I tired very easily. I also didn't have much appetite sometimes, and I tended to easily feel nauseated. Pierre Re: New to the Group Hi I'm new to the group. I think this forum is marvellous and has taught me so much about my condition. I was diagnosed with IgA when I was 28 though obviously it has started some years before. Other than the high blood pressure I had no other symptoms, my serum creatinine was 133. I am now 35 and my creatinine has started to rise and is now 157. My question is when do you start developing symptoms of renal failure? As a husband and a father of an 18 month old child (with another on the way) I have moments of despair but this group does help me. I was also wondering how long it will be before I end up on dialysis, I have pretty much accepted that it is not a matter of if but when. Two other pieces of information may be of interest to the group. Firstly I am a celiac and have been on a gluten and diary free diet for about 4 years now. My neph doesn't think there is a link and my creatinine has increased during this time, so a gluten free diet doesn't seem to affect things. Secondly IgA seems genetic in my case as males in the last 3 generations of my family have suffered from kidney disease. I hope to learn a lot more from many of you. Many thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Welcome to the group. It's not that long ago that I was a 35 year old father, except my kids were older than yours. Everyone's different in how fast IgAN progresses to end-stage renal failure, if it does at all, but for comparison's sake, to give you an idea... I had what looked like fairly mild IgAN, diagnosed via biopsy in the summer of 1993, but with micro blood and protein in urine long before that. At the time of my biopsy, my serum creatinine was about the same as yours is now, 150 more or less. It took 9 years before I reached the point where I had to start dialysis, in October of 2002. But, while I never had visible blood in my urine, and I never had heavy proteinuria, I did have some pretty wicked, hard to control high blood pressure. So, maybe if you can control that, you might be able to go a long way. But don't despair. You've got a lot of life to live before you ever get to dialysis or transplant, and a lot of life even after that. When do you start having symptoms. Well, in a way, you already have with the high blood pressure. Other than that though, with the possible exception of anemia which seems to vary greatly from one person to the next (for example, I didn't have to be treated for it until months after I started dialysis), I would say that some people might start some symptoms of chronic renal insufficiency at 30% kidney function or thereabouts, and almost certainly some between 20 and 30% kidney function. You are probably in the neighbourhood of around 50% right now, maybe a bit more, depending on how big you are and how much muscle you have. Look over the list of symptoms I posted in the " Renal Insufficiency Notebook " section of www.igan.ca . You may or may not have some of the early ones. Some people feel no symptoms at all until they are pretty close to dialysis. Me, I started feeling some around 30%, and, I suspect, excessive fatigue some time before that. During the time between 20 and 30%, I had a pale grey complexion, and I tired very easily. I also didn't have much appetite sometimes, and I tended to easily feel nauseated. Pierre Re: New to the Group Hi I'm new to the group. I think this forum is marvellous and has taught me so much about my condition. I was diagnosed with IgA when I was 28 though obviously it has started some years before. Other than the high blood pressure I had no other symptoms, my serum creatinine was 133. I am now 35 and my creatinine has started to rise and is now 157. My question is when do you start developing symptoms of renal failure? As a husband and a father of an 18 month old child (with another on the way) I have moments of despair but this group does help me. I was also wondering how long it will be before I end up on dialysis, I have pretty much accepted that it is not a matter of if but when. Two other pieces of information may be of interest to the group. Firstly I am a celiac and have been on a gluten and diary free diet for about 4 years now. My neph doesn't think there is a link and my creatinine has increased during this time, so a gluten free diet doesn't seem to affect things. Secondly IgA seems genetic in my case as males in the last 3 generations of my family have suffered from kidney disease. I hope to learn a lot more from many of you. Many thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Pierre, Many thanks for the reply. When I go the neph my heart is racing and all I want to do is get out as quickly as possible. Your information is so valuable. I am quite short ( 5 foot 6 inches) about 145 lbs - so is that a good thing when it comes to renal problems ie. will my kidneys have a bit less stress on them than say a larger person? . Pierre L wrote: Welcome to the group. It's not that long ago that I was a 35 year old father, except my kids were older than yours. Everyone's different in how fast IgAN progresses to end-stage renal failure, if it does at all, but for comparison's sake, to give you an idea... I had what looked like fairly mild IgAN, diagnosed via biopsy in the summer of 1993, but with micro blood and protein in urine long before that. At the time of my biopsy, my serum creatinine was about the same as yours is now, 150 more or less. It took 9 years before I reached the point where I had to start dialysis, in October of 2002. But, while I never had visible blood in my urine, and I never had heavy proteinuria, I did have some pretty wicked, hard to control high blood pressure. So, maybe if you can control that, you might be able to go a long way. But don't despair. You've got a lot of life to live before you ever get to dialysis or transplant, and a lot of life even after that. When do you start having symptoms. Well, in a way, you already have with the high blood pressure. Other than that though, with the possible exception of anemia which seems to vary greatly from one person to the next (for example, I didn't have to be treated for it until months after I started dialysis), I would say that some people might start some symptoms of chronic renal insufficiency at 30% kidney function or thereabouts, and almost certainly some between 20 and 30% kidney function. You are probably in the neighbourhood of around 50% right now, maybe a bit more, depending on how big you are and how much muscle you have. Look over the list of symptoms I posted in the " Renal Insufficiency Notebook " section of www.igan.ca . You may or may not have some of the early ones. Some people feel no symptoms at all until they are pretty close to dialysis. Me, I started feeling some around 30%, and, I suspect, excessive fatigue some time before that. During the time between 20 and 30%, I had a pale grey complexion, and I tired very easily. I also didn't have much appetite sometimes, and I tended to easily feel nauseated. Pierre Re: New to the Group Hi I'm new to the group. I think this forum is marvellous and has taught me so much about my condition. I was diagnosed with IgA when I was 28 though obviously it has started some years before. Other than the high blood pressure I had no other symptoms, my serum creatinine was 133. I am now 35 and my creatinine has started to rise and is now 157. My question is when do you start developing symptoms of renal failure? As a husband and a father of an 18 month old child (with another on the way) I have moments of despair but this group does help me. I was also wondering how long it will be before I end up on dialysis, I have pretty much accepted that it is not a matter of if but when. Two other pieces of information may be of interest to the group. Firstly I am a celiac and have been on a gluten and diary free diet for about 4 years now. My neph doesn't think there is a link and my creatinine has increased during this time, so a gluten free diet doesn't seem to affect things. Secondly IgA seems genetic in my case as males in the last 3 generations of my family have suffered from kidney disease. I hope to learn a lot more from many of you. Many thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Pierre, Many thanks for the reply. When I go the neph my heart is racing and all I want to do is get out as quickly as possible. Your information is so valuable. I am quite short ( 5 foot 6 inches) about 145 lbs - so is that a good thing when it comes to renal problems ie. will my kidneys have a bit less stress on them than say a larger person? . Pierre L wrote: Welcome to the group. It's not that long ago that I was a 35 year old father, except my kids were older than yours. Everyone's different in how fast IgAN progresses to end-stage renal failure, if it does at all, but for comparison's sake, to give you an idea... I had what looked like fairly mild IgAN, diagnosed via biopsy in the summer of 1993, but with micro blood and protein in urine long before that. At the time of my biopsy, my serum creatinine was about the same as yours is now, 150 more or less. It took 9 years before I reached the point where I had to start dialysis, in October of 2002. But, while I never had visible blood in my urine, and I never had heavy proteinuria, I did have some pretty wicked, hard to control high blood pressure. So, maybe if you can control that, you might be able to go a long way. But don't despair. You've got a lot of life to live before you ever get to dialysis or transplant, and a lot of life even after that. When do you start having symptoms. Well, in a way, you already have with the high blood pressure. Other than that though, with the possible exception of anemia which seems to vary greatly from one person to the next (for example, I didn't have to be treated for it until months after I started dialysis), I would say that some people might start some symptoms of chronic renal insufficiency at 30% kidney function or thereabouts, and almost certainly some between 20 and 30% kidney function. You are probably in the neighbourhood of around 50% right now, maybe a bit more, depending on how big you are and how much muscle you have. Look over the list of symptoms I posted in the " Renal Insufficiency Notebook " section of www.igan.ca . You may or may not have some of the early ones. Some people feel no symptoms at all until they are pretty close to dialysis. Me, I started feeling some around 30%, and, I suspect, excessive fatigue some time before that. During the time between 20 and 30%, I had a pale grey complexion, and I tired very easily. I also didn't have much appetite sometimes, and I tended to easily feel nauseated. Pierre Re: New to the Group Hi I'm new to the group. I think this forum is marvellous and has taught me so much about my condition. I was diagnosed with IgA when I was 28 though obviously it has started some years before. Other than the high blood pressure I had no other symptoms, my serum creatinine was 133. I am now 35 and my creatinine has started to rise and is now 157. My question is when do you start developing symptoms of renal failure? As a husband and a father of an 18 month old child (with another on the way) I have moments of despair but this group does help me. I was also wondering how long it will be before I end up on dialysis, I have pretty much accepted that it is not a matter of if but when. Two other pieces of information may be of interest to the group. Firstly I am a celiac and have been on a gluten and diary free diet for about 4 years now. My neph doesn't think there is a link and my creatinine has increased during this time, so a gluten free diet doesn't seem to affect things. Secondly IgA seems genetic in my case as males in the last 3 generations of my family have suffered from kidney disease. I hope to learn a lot more from many of you. Many thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Pierre, Many thanks for the reply. When I go the neph my heart is racing and all I want to do is get out as quickly as possible. Your information is so valuable. I am quite short ( 5 foot 6 inches) about 145 lbs - so is that a good thing when it comes to renal problems ie. will my kidneys have a bit less stress on them than say a larger person? . Pierre L wrote: Welcome to the group. It's not that long ago that I was a 35 year old father, except my kids were older than yours. Everyone's different in how fast IgAN progresses to end-stage renal failure, if it does at all, but for comparison's sake, to give you an idea... I had what looked like fairly mild IgAN, diagnosed via biopsy in the summer of 1993, but with micro blood and protein in urine long before that. At the time of my biopsy, my serum creatinine was about the same as yours is now, 150 more or less. It took 9 years before I reached the point where I had to start dialysis, in October of 2002. But, while I never had visible blood in my urine, and I never had heavy proteinuria, I did have some pretty wicked, hard to control high blood pressure. So, maybe if you can control that, you might be able to go a long way. But don't despair. You've got a lot of life to live before you ever get to dialysis or transplant, and a lot of life even after that. When do you start having symptoms. Well, in a way, you already have with the high blood pressure. Other than that though, with the possible exception of anemia which seems to vary greatly from one person to the next (for example, I didn't have to be treated for it until months after I started dialysis), I would say that some people might start some symptoms of chronic renal insufficiency at 30% kidney function or thereabouts, and almost certainly some between 20 and 30% kidney function. You are probably in the neighbourhood of around 50% right now, maybe a bit more, depending on how big you are and how much muscle you have. Look over the list of symptoms I posted in the " Renal Insufficiency Notebook " section of www.igan.ca . You may or may not have some of the early ones. Some people feel no symptoms at all until they are pretty close to dialysis. Me, I started feeling some around 30%, and, I suspect, excessive fatigue some time before that. During the time between 20 and 30%, I had a pale grey complexion, and I tired very easily. I also didn't have much appetite sometimes, and I tended to easily feel nauseated. Pierre Re: New to the Group Hi I'm new to the group. I think this forum is marvellous and has taught me so much about my condition. I was diagnosed with IgA when I was 28 though obviously it has started some years before. Other than the high blood pressure I had no other symptoms, my serum creatinine was 133. I am now 35 and my creatinine has started to rise and is now 157. My question is when do you start developing symptoms of renal failure? As a husband and a father of an 18 month old child (with another on the way) I have moments of despair but this group does help me. I was also wondering how long it will be before I end up on dialysis, I have pretty much accepted that it is not a matter of if but when. Two other pieces of information may be of interest to the group. Firstly I am a celiac and have been on a gluten and diary free diet for about 4 years now. My neph doesn't think there is a link and my creatinine has increased during this time, so a gluten free diet doesn't seem to affect things. Secondly IgA seems genetic in my case as males in the last 3 generations of my family have suffered from kidney disease. I hope to learn a lot more from many of you. Many thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 You're welcome, . I beat you by 3 inches, but I wish it was the other way, 5'9 rather than 5'3 " How big and tall you are or are not makes no difference at all as far as I know, except in what a given serum creatinine number means. For example, 500 was high enough for me to start dialysis, but for a guy 6'2', that magic number might be 800. But it's not like the shorter guy gets there sooner. It's the same. Pierre Re: New to the Group > > > > Hi I'm new to the group. I think this forum is marvellous and has taught me > so much about my condition. > > > > I was diagnosed with IgA when I was 28 though obviously it has started some > years before. Other than the high blood pressure I had no other symptoms, my > serum creatinine was 133. I am now 35 and my creatinine has started to rise > and is now 157. My question is when do you start developing symptoms of > renal failure? > > > > As a husband and a father of an 18 month old child (with another on the way) > I have moments of despair but this group does help me. I was also wondering > how long it will be before I end up on dialysis, I have pretty much accepted > that it is not a matter of if but when. > > > > Two other pieces of information may be of interest to the group. Firstly I > am a celiac and have been on a gluten and diary free diet for about 4 years > now. My neph doesn't think there is a link and my creatinine has increased > during this time, so a gluten free diet doesn't seem to affect things. > > > > Secondly IgA seems genetic in my case as males in the last 3 generations of > my family have suffered from kidney disease. > > > > I hope to learn a lot more from many of you. Many thanks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 You're welcome, . I beat you by 3 inches, but I wish it was the other way, 5'9 rather than 5'3 " How big and tall you are or are not makes no difference at all as far as I know, except in what a given serum creatinine number means. For example, 500 was high enough for me to start dialysis, but for a guy 6'2', that magic number might be 800. But it's not like the shorter guy gets there sooner. It's the same. Pierre Re: New to the Group > > > > Hi I'm new to the group. I think this forum is marvellous and has taught me > so much about my condition. > > > > I was diagnosed with IgA when I was 28 though obviously it has started some > years before. Other than the high blood pressure I had no other symptoms, my > serum creatinine was 133. I am now 35 and my creatinine has started to rise > and is now 157. My question is when do you start developing symptoms of > renal failure? > > > > As a husband and a father of an 18 month old child (with another on the way) > I have moments of despair but this group does help me. I was also wondering > how long it will be before I end up on dialysis, I have pretty much accepted > that it is not a matter of if but when. > > > > Two other pieces of information may be of interest to the group. Firstly I > am a celiac and have been on a gluten and diary free diet for about 4 years > now. My neph doesn't think there is a link and my creatinine has increased > during this time, so a gluten free diet doesn't seem to affect things. > > > > Secondly IgA seems genetic in my case as males in the last 3 generations of > my family have suffered from kidney disease. > > > > I hope to learn a lot more from many of you. Many thanks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 You're welcome, . I beat you by 3 inches, but I wish it was the other way, 5'9 rather than 5'3 " How big and tall you are or are not makes no difference at all as far as I know, except in what a given serum creatinine number means. For example, 500 was high enough for me to start dialysis, but for a guy 6'2', that magic number might be 800. But it's not like the shorter guy gets there sooner. It's the same. Pierre Re: New to the Group > > > > Hi I'm new to the group. I think this forum is marvellous and has taught me > so much about my condition. > > > > I was diagnosed with IgA when I was 28 though obviously it has started some > years before. Other than the high blood pressure I had no other symptoms, my > serum creatinine was 133. I am now 35 and my creatinine has started to rise > and is now 157. My question is when do you start developing symptoms of > renal failure? > > > > As a husband and a father of an 18 month old child (with another on the way) > I have moments of despair but this group does help me. I was also wondering > how long it will be before I end up on dialysis, I have pretty much accepted > that it is not a matter of if but when. > > > > Two other pieces of information may be of interest to the group. Firstly I > am a celiac and have been on a gluten and diary free diet for about 4 years > now. My neph doesn't think there is a link and my creatinine has increased > during this time, so a gluten free diet doesn't seem to affect things. > > > > Secondly IgA seems genetic in my case as males in the last 3 generations of > my family have suffered from kidney disease. > > > > I hope to learn a lot more from many of you. Many thanks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Pierre, I promise this will be my last quick question as I'm sure you've got better things to do. By being smaller does that mean that you require less dialysis and / or dialysis has a better effect on you as you have less blood to clean etc etc Thanks, Pierre L wrote: You're welcome, . I beat you by 3 inches, but I wish it was the other way, 5'9 rather than 5'3 " How big and tall you are or are not makes no difference at all as far as I know, except in what a given serum creatinine number means. For example, 500 was high enough for me to start dialysis, but for a guy 6'2', that magic number might be 800. But it's not like the shorter guy gets there sooner. It's the same. Pierre Re: New to the Group > > > > Hi I'm new to the group. I think this forum is marvellous and has taught me > so much about my condition. > > > > I was diagnosed with IgA when I was 28 though obviously it has started some > years before. Other than the high blood pressure I had no other symptoms, my > serum creatinine was 133. I am now 35 and my creatinine has started to rise > and is now 157. My question is when do you start developing symptoms of > renal failure? > > > > As a husband and a father of an 18 month old child (with another on the way) > I have moments of despair but this group does help me. I was also wondering > how long it will be before I end up on dialysis, I have pretty much accepted > that it is not a matter of if but when. > > > > Two other pieces of information may be of interest to the group. Firstly I > am a celiac and have been on a gluten and diary free diet for about 4 years > now. My neph doesn't think there is a link and my creatinine has increased > during this time, so a gluten free diet doesn't seem to affect things. > > > > Secondly IgA seems genetic in my case as males in the last 3 generations of > my family have suffered from kidney disease. > > > > I hope to learn a lot more from many of you. Many thanks. > > > To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Pierre, I promise this will be my last quick question as I'm sure you've got better things to do. By being smaller does that mean that you require less dialysis and / or dialysis has a better effect on you as you have less blood to clean etc etc Thanks, Pierre L wrote: You're welcome, . I beat you by 3 inches, but I wish it was the other way, 5'9 rather than 5'3 " How big and tall you are or are not makes no difference at all as far as I know, except in what a given serum creatinine number means. For example, 500 was high enough for me to start dialysis, but for a guy 6'2', that magic number might be 800. But it's not like the shorter guy gets there sooner. It's the same. Pierre Re: New to the Group > > > > Hi I'm new to the group. I think this forum is marvellous and has taught me > so much about my condition. > > > > I was diagnosed with IgA when I was 28 though obviously it has started some > years before. Other than the high blood pressure I had no other symptoms, my > serum creatinine was 133. I am now 35 and my creatinine has started to rise > and is now 157. My question is when do you start developing symptoms of > renal failure? > > > > As a husband and a father of an 18 month old child (with another on the way) > I have moments of despair but this group does help me. I was also wondering > how long it will be before I end up on dialysis, I have pretty much accepted > that it is not a matter of if but when. > > > > Two other pieces of information may be of interest to the group. Firstly I > am a celiac and have been on a gluten and diary free diet for about 4 years > now. My neph doesn't think there is a link and my creatinine has increased > during this time, so a gluten free diet doesn't seem to affect things. > > > > Secondly IgA seems genetic in my case as males in the last 3 generations of > my family have suffered from kidney disease. > > > > I hope to learn a lot more from many of you. Many thanks. > > > To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Well I was just listening to a radio talk show being co-broadcast on CPAC (the Canadian equivalent of CSPAN, more or less), so I guess I *don't* have anything better to do What can I say. We're in the last two weeks of a federal election campaign here, and it was interesting to hear the follow-up to last night's leaders' debate on TV. It depends. Generally, given an equal amount of residual kidney function, the smaller person with less muscle mass can make do with a bit shorter hemodialysis treatment... but for most people, we're talking like half an hour's difference, so, not that much - and an hour at the most. But it's hard to give a definitive answer, because it depends on how much dialysis a person needs, how well they follow the diet, etc. I'm on for 3-1/2 hours and that gives me excellent dialysis (they measure this continuously). Other people I dialyze with are on for 4, some 4-1/2, a very few I've know are longer than that. A person can be on dialysis and still have some significant residual kidney function for a long time, and that certainly helps, because it eases the dietary restrictions quite a bit. Pierre Re: Re: New to the Group > Pierre, > > I promise this will be my last quick question as I'm sure you've got better things to do. > > By being smaller does that mean that you require less dialysis and / or dialysis has a better effect on you as you have less blood to clean etc etc > > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Well I was just listening to a radio talk show being co-broadcast on CPAC (the Canadian equivalent of CSPAN, more or less), so I guess I *don't* have anything better to do What can I say. We're in the last two weeks of a federal election campaign here, and it was interesting to hear the follow-up to last night's leaders' debate on TV. It depends. Generally, given an equal amount of residual kidney function, the smaller person with less muscle mass can make do with a bit shorter hemodialysis treatment... but for most people, we're talking like half an hour's difference, so, not that much - and an hour at the most. But it's hard to give a definitive answer, because it depends on how much dialysis a person needs, how well they follow the diet, etc. I'm on for 3-1/2 hours and that gives me excellent dialysis (they measure this continuously). Other people I dialyze with are on for 4, some 4-1/2, a very few I've know are longer than that. A person can be on dialysis and still have some significant residual kidney function for a long time, and that certainly helps, because it eases the dietary restrictions quite a bit. Pierre Re: Re: New to the Group > Pierre, > > I promise this will be my last quick question as I'm sure you've got better things to do. > > By being smaller does that mean that you require less dialysis and / or dialysis has a better effect on you as you have less blood to clean etc etc > > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Dawn,,,,my daughter who has igan also,,,she is 11,,,she is always complaining with leg pains,,she says her muscles ache all the time,,,i am not sure if this has anythingt o do with having igan or not thou,,,and 0.8 is a great number,,,my daughters was 0.6 3 months ago,,and now it is raised to 0.9,,kinda scares me,,,good luck...and god bless you,,,,crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Dawn,,,,my daughter who has igan also,,,she is 11,,,she is always complaining with leg pains,,she says her muscles ache all the time,,,i am not sure if this has anythingt o do with having igan or not thou,,,and 0.8 is a great number,,,my daughters was 0.6 3 months ago,,and now it is raised to 0.9,,kinda scares me,,,good luck...and god bless you,,,,crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Dawn,,,,my daughter who has igan also,,,she is 11,,,she is always complaining with leg pains,,she says her muscles ache all the time,,,i am not sure if this has anythingt o do with having igan or not thou,,,and 0.8 is a great number,,,my daughters was 0.6 3 months ago,,and now it is raised to 0.9,,kinda scares me,,,good luck...and god bless you,,,,crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Dawn, Sorry your Neph is so " blah " about everything. I don't get arm pain, but I have had leg pain for years, I especially notice it when I get sick, my legs hurt first. I'm not sure why though, someone on this board could probably tell you. I also have had pain in my right side, I was wondering if it was gallbladder or not. It will be interesting to see what kind of responses you get. Welcome to the board, I hope you find it helpful. I don't know what I would do without it. I have so many questions, my Neph is great, but he tends to " leave me hanging " a lot of times until my next appt. Fortunately, because of this board, I get a lot of my questions answered and I have learned tons! Jill > > > > > Hello, > > > > My name is Dawn. I have been diagnosed with IGA for about two years now. > Only problem is, My Neph doesn't seem to think it's a big deal. I don't > know. My creatine level was 1.0 in 02 now it 0.8 which they say is normal. > My bp is also always normal. However, I get these pains on my right side all > the time. My urine is dark all the time and most of the time has a real > pungent smell. Can anyone tell me more about what I am feeling since my > doctor just says. Yeah, that's normal, par for the course (what does that > mean)? Thanks. It's awesome to have people to talk to about this. Everyone I > know has never even heard of it. Oh yeah. Does any one get pain through out > their body? I do and it's like a aching pain mostly in my arms and legs. > Thanks > > Dawn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Dawn, Sorry your Neph is so " blah " about everything. I don't get arm pain, but I have had leg pain for years, I especially notice it when I get sick, my legs hurt first. I'm not sure why though, someone on this board could probably tell you. I also have had pain in my right side, I was wondering if it was gallbladder or not. It will be interesting to see what kind of responses you get. Welcome to the board, I hope you find it helpful. I don't know what I would do without it. I have so many questions, my Neph is great, but he tends to " leave me hanging " a lot of times until my next appt. Fortunately, because of this board, I get a lot of my questions answered and I have learned tons! Jill > > > > > Hello, > > > > My name is Dawn. I have been diagnosed with IGA for about two years now. > Only problem is, My Neph doesn't seem to think it's a big deal. I don't > know. My creatine level was 1.0 in 02 now it 0.8 which they say is normal. > My bp is also always normal. However, I get these pains on my right side all > the time. My urine is dark all the time and most of the time has a real > pungent smell. Can anyone tell me more about what I am feeling since my > doctor just says. Yeah, that's normal, par for the course (what does that > mean)? Thanks. It's awesome to have people to talk to about this. Everyone I > know has never even heard of it. Oh yeah. Does any one get pain through out > their body? I do and it's like a aching pain mostly in my arms and legs. > Thanks > > Dawn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Dawn, Sorry your Neph is so " blah " about everything. I don't get arm pain, but I have had leg pain for years, I especially notice it when I get sick, my legs hurt first. I'm not sure why though, someone on this board could probably tell you. I also have had pain in my right side, I was wondering if it was gallbladder or not. It will be interesting to see what kind of responses you get. Welcome to the board, I hope you find it helpful. I don't know what I would do without it. I have so many questions, my Neph is great, but he tends to " leave me hanging " a lot of times until my next appt. Fortunately, because of this board, I get a lot of my questions answered and I have learned tons! Jill > > > > > Hello, > > > > My name is Dawn. I have been diagnosed with IGA for about two years now. > Only problem is, My Neph doesn't seem to think it's a big deal. I don't > know. My creatine level was 1.0 in 02 now it 0.8 which they say is normal. > My bp is also always normal. However, I get these pains on my right side all > the time. My urine is dark all the time and most of the time has a real > pungent smell. Can anyone tell me more about what I am feeling since my > doctor just says. Yeah, that's normal, par for the course (what does that > mean)? Thanks. It's awesome to have people to talk to about this. Everyone I > know has never even heard of it. Oh yeah. Does any one get pain through out > their body? I do and it's like a aching pain mostly in my arms and legs. > Thanks > > Dawn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hi Dawn, Welcome to the group I'm happy you found us. Your creatinine numbers look great! I wish mine were so low. ) Have you been checked for bladder infection? With the highly smelly urine that would be the first thing that pops into my head. Although when you have a lot of blood in the urine it can cause a smell like that without infection. The pains you are having on your right side...where are they located? Is it in your back near the base of your back. Or is it in the front area of your body around your hip/pelvic bone area? I know a few of us, me included, have had sharp stabbing pains on the right side in the hip joint/pelvic area that have been unexplained by our doctors to date. Mine come and go sometimes I go months without pain and then other months its a daily thing. If they are occurring in your back near the base of your back you could be experiencing flank pain, common with IgAN but not recognized as a symptom by most doctors. The pain doesn't come from the kidneys but from the surrounding area...perhaps due to irritation from the blood in the urine. Not much is known about flank pain except that many people have it in varying degrees and some never experience it. Welcome again and I hope we can all be a source of info and aid. Amy new to the group > > > > > Hello, > > > > My name is Dawn. I have been diagnosed with IGA for about two years now. > Only problem is, My Neph doesn't seem to think it's a big deal. I don't > know. My creatine level was 1.0 in 02 now it 0.8 which they say is normal. > My bp is also always normal. However, I get these pains on my right side all > the time. My urine is dark all the time and most of the time has a real > pungent smell. Can anyone tell me more about what I am feeling since my > doctor just says. Yeah, that's normal, par for the course (what does that > mean)? Thanks. It's awesome to have people to talk to about this. Everyone I > know has never even heard of it. Oh yeah. Does any one get pain through out > their body? I do and it's like a aching pain mostly in my arms and legs. > Thanks > > Dawn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hi Dawn, Welcome to the group I'm happy you found us. Your creatinine numbers look great! I wish mine were so low. ) Have you been checked for bladder infection? With the highly smelly urine that would be the first thing that pops into my head. Although when you have a lot of blood in the urine it can cause a smell like that without infection. The pains you are having on your right side...where are they located? Is it in your back near the base of your back. Or is it in the front area of your body around your hip/pelvic bone area? I know a few of us, me included, have had sharp stabbing pains on the right side in the hip joint/pelvic area that have been unexplained by our doctors to date. Mine come and go sometimes I go months without pain and then other months its a daily thing. If they are occurring in your back near the base of your back you could be experiencing flank pain, common with IgAN but not recognized as a symptom by most doctors. The pain doesn't come from the kidneys but from the surrounding area...perhaps due to irritation from the blood in the urine. Not much is known about flank pain except that many people have it in varying degrees and some never experience it. Welcome again and I hope we can all be a source of info and aid. Amy new to the group > > > > > Hello, > > > > My name is Dawn. I have been diagnosed with IGA for about two years now. > Only problem is, My Neph doesn't seem to think it's a big deal. I don't > know. My creatine level was 1.0 in 02 now it 0.8 which they say is normal. > My bp is also always normal. However, I get these pains on my right side all > the time. My urine is dark all the time and most of the time has a real > pungent smell. Can anyone tell me more about what I am feeling since my > doctor just says. Yeah, that's normal, par for the course (what does that > mean)? Thanks. It's awesome to have people to talk to about this. Everyone I > know has never even heard of it. Oh yeah. Does any one get pain through out > their body? I do and it's like a aching pain mostly in my arms and legs. > Thanks > > Dawn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hi Dawn, Welcome to the group I'm happy you found us. Your creatinine numbers look great! I wish mine were so low. ) Have you been checked for bladder infection? With the highly smelly urine that would be the first thing that pops into my head. Although when you have a lot of blood in the urine it can cause a smell like that without infection. The pains you are having on your right side...where are they located? Is it in your back near the base of your back. Or is it in the front area of your body around your hip/pelvic bone area? I know a few of us, me included, have had sharp stabbing pains on the right side in the hip joint/pelvic area that have been unexplained by our doctors to date. Mine come and go sometimes I go months without pain and then other months its a daily thing. If they are occurring in your back near the base of your back you could be experiencing flank pain, common with IgAN but not recognized as a symptom by most doctors. The pain doesn't come from the kidneys but from the surrounding area...perhaps due to irritation from the blood in the urine. Not much is known about flank pain except that many people have it in varying degrees and some never experience it. Welcome again and I hope we can all be a source of info and aid. Amy new to the group > > > > > Hello, > > > > My name is Dawn. I have been diagnosed with IGA for about two years now. > Only problem is, My Neph doesn't seem to think it's a big deal. I don't > know. My creatine level was 1.0 in 02 now it 0.8 which they say is normal. > My bp is also always normal. However, I get these pains on my right side all > the time. My urine is dark all the time and most of the time has a real > pungent smell. Can anyone tell me more about what I am feeling since my > doctor just says. Yeah, that's normal, par for the course (what does that > mean)? Thanks. It's awesome to have people to talk to about this. Everyone I > know has never even heard of it. Oh yeah. Does any one get pain through out > their body? I do and it's like a aching pain mostly in my arms and legs. > Thanks > > Dawn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hello Dawn, Welcome to the group. Your neph thinking it's no big deal really amazes me. Maybe compared with his other patients it is no big deal in the state your in now, but for you it is! What I find a bit strange though is that you have smelling urine. It's something I at least do not recognize as common for Igan. Maybe anyone else in the group has any experience? I'm sure you can find a lot of information and support in this group. Doortje > > > > > Hello, > > > > My name is Dawn. I have been diagnosed with IGA for about two years now. > Only problem is, My Neph doesn't seem to think it's a big deal. I don't > know. My creatine level was 1.0 in 02 now it 0.8 which they say is normal. > My bp is also always normal. However, I get these pains on my right side all > the time. My urine is dark all the time and most of the time has a real > pungent smell. Can anyone tell me more about what I am feeling since my > doctor just says. Yeah, that's normal, par for the course (what does that > mean)? Thanks. It's awesome to have people to talk to about this. Everyone I > know has never even heard of it. Oh yeah. Does any one get pain through out > their body? I do and it's like a aching pain mostly in my arms and legs. > Thanks > > Dawn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hello Dawn, Welcome to the group. Your neph thinking it's no big deal really amazes me. Maybe compared with his other patients it is no big deal in the state your in now, but for you it is! What I find a bit strange though is that you have smelling urine. It's something I at least do not recognize as common for Igan. Maybe anyone else in the group has any experience? I'm sure you can find a lot of information and support in this group. Doortje > > > > > Hello, > > > > My name is Dawn. I have been diagnosed with IGA for about two years now. > Only problem is, My Neph doesn't seem to think it's a big deal. I don't > know. My creatine level was 1.0 in 02 now it 0.8 which they say is normal. > My bp is also always normal. However, I get these pains on my right side all > the time. My urine is dark all the time and most of the time has a real > pungent smell. Can anyone tell me more about what I am feeling since my > doctor just says. Yeah, that's normal, par for the course (what does that > mean)? Thanks. It's awesome to have people to talk to about this. Everyone I > know has never even heard of it. Oh yeah. Does any one get pain through out > their body? I do and it's like a aching pain mostly in my arms and legs. > Thanks > > Dawn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hello Dawn, Welcome to the group. Your neph thinking it's no big deal really amazes me. Maybe compared with his other patients it is no big deal in the state your in now, but for you it is! What I find a bit strange though is that you have smelling urine. It's something I at least do not recognize as common for Igan. Maybe anyone else in the group has any experience? I'm sure you can find a lot of information and support in this group. Doortje > > > > > Hello, > > > > My name is Dawn. I have been diagnosed with IGA for about two years now. > Only problem is, My Neph doesn't seem to think it's a big deal. I don't > know. My creatine level was 1.0 in 02 now it 0.8 which they say is normal. > My bp is also always normal. However, I get these pains on my right side all > the time. My urine is dark all the time and most of the time has a real > pungent smell. Can anyone tell me more about what I am feeling since my > doctor just says. Yeah, that's normal, par for the course (what does that > mean)? Thanks. It's awesome to have people to talk to about this. Everyone I > know has never even heard of it. Oh yeah. Does any one get pain through out > their body? I do and it's like a aching pain mostly in my arms and legs. > Thanks > > Dawn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hi Dawn, First let me welcome you to the group! Glad you found us, but sorry you had reason to look for us. Your creatinine level is normal, and that is just fantastic. If your creatinine and BP are normal, you should be in great shape. One the pains, if it is the lower quadrant, left or right in your back, it could be the flank pain sometimes associated with IgAN, but if it is not in your lower back, it is probably something else. On the dark urine, is there a reddish or tea color? If so, it could be you are spilling small amounts of blood. If it is just dark, but not red or tea colored, it could be dark due to not being hydrated enough. Do you drink lots of water? With your levels, I would doubt you have any dietary restrictions, but I have to offer a disclaimer that none of us are doctors, and it is important not to take any of the posts as medical advise. You might ask your Nephrologist if your phosphorus and potassium levels are ok and if he advises any dietary restrictions. With normal kidney function indicated by your 0.8 creatinine level, I doubt you need to worry about any, but it doesn't hurt to check. No matter what your levels are though, it is important to have a Nephrologist who you feel is supporting you through the process, and that includes emotional as well as physical support. It is only natural to be concerned when you are diagnosed with any chronic illness. Just know that you have a kidney family here who will support you through this. We are here for you each step of the way Dawn! Welcome again, Quote Link to comment Share on other sites More sharing options...
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