New to the group

[Guest guest]

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.

[Guest guest]

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.

[Guest guest]

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.

[Guest guest]

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.

[Guest guest]

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.

[Guest guest]

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.

>

>

>

[Guest guest]

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.

>

>

>

[Guest guest]

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.

>

>

>

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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,

>

[Guest guest]

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,

>

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

>

>

>

>

[Guest guest]

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

>

>

>

>

[Guest guest]

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

>

>

>

>

[Guest guest]

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

>

>

>

>

[Guest guest]

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

>

>

>

>

[Guest guest]

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

>

>

>

>

[Guest guest]

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

>

>

>

>

[Guest guest]

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

>

>

>

>

[Guest guest]

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

>

>

>

>

[Guest guest]

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,