Re: How long?

December 1, 2003

Unfortunately, there is no way to tell for sure when you first got IgAN. You

see, usually by the time a lab result picks up an abnormality, you usually

have already lost significant kidney function, often 50% or more. There really

is no way to tell for sure.

The best thing is to keep a record of your lab results going forward, and

those numbers can be used to get an idea of your rate of progression.

December 1, 2003

Hi Dave,

Plot the graph backwards??? I think you're the only one whose come up with

that line! I don't know if it would account for that long initial " :flat

line period " during which people rarely progress.

More seriously tho, these days, the idea that someone could be sick for a

long time without knowing is the good news to me. I've been comparing

kidney disease to other big traumatic illnesses that I've run into. It took

me a full year to come to grips with the fact that my son had MPGN (like

IgAN, only more extreme greater proteinuria, faster time to end stage, more

extreme BP, ect). In retrospect, having that time seems like such a

luxury!!! When my husband was sick, his diagnosis, surgery to remove his

vocal cords and death happened all so fast - without having had time to

adjust to any of it. It had me a wee bit knocked for six! Although

obviously, I'd prefer that my son not be sick, I'm just very grateful that

this time round I have time to deal with it - and prepare him for dealing

with it. Mind you, during that year of learning about kidney disease, I was

as often as not very scared -- and more than a little bit.

Cy

How long?

> Hi everyone,

>

> Hmmmm been a wee bit knocked for six since I realised that I may have had

this thing for a while and not known - ie the viral infection > gross

haematuria could be just a sign rather that the starting line when I just

assumed the virus was the trigger ..... teach me to read more huh? :o/

>

> So, is there any way to establish how long I may have been a member of the

IgAN club? I assume the answer is, over time you'll see your kidney function

and you basically plot the graph backwards? Kinda scaring me a little bit

(

>

December 2, 2003

Morning Dave

I was diagnosed in 1996 with IgAN, I only found this out because of a

routine check with the GP when we moved house. They could not determine when

or how !

On a very positive note, despite recent flare ups that have put me in

hospital, I had some checks done last week by my GP (so i knew for my

specialists appointment in December) and the results I thinks are fantastic.

My blood pressure has settled down after a blip, now 124/87. My urine is

still showing +3 blood and +3 protein when messured with a dipstick.

In the past 10 weeks since my major flare up, I have changed my diet

completely. Not a single drop of alcohol, I have changed my eating habits,

no sugar, salt. Lots of fruit, etc. basically a normal healthy diet.

I was also given the following results, which iam told show a kidney that is

functioning normally. Which i think is the biggest aspect !?

Sodium 141 Guide 135-145

Potassium 4.1 3.5-5.0

Bicarbonate 26 22-32

Creatinine 98 50-130

Does anyone out there understand these, if so are they as good as the GP

says. They look excellent to me !

Anyway, as i keep repeating(sorry), if the only issue i have to cope with is

the pain and fatigue, then no problem.

My best wishes to everyone.

Darren

Huddersfield, UK

How long?

Hi everyone,

Hmmmm been a wee bit knocked for six since I realised that I may have had

this thing for a while and not known - ie the viral infection > gross

haematuria could be just a sign rather that the starting line when I just

assumed the virus was the trigger ..... teach me to read more huh? :o/

So, is there any way to establish how long I may have been a member of the

IgAN club? I assume the answer is, over time you'll see your kidney function

and you basically plot the graph backwards? Kinda scaring me a little bit

(

December 2, 2003

Yeah I realised as soon as I sent it, it was a stupid question ) I

blame it on a particularly bad day! (work was stressful then 12 year

old daughter took a huge strop over algerba <lol> & then to top it

all when fiddling with yahoo settings, I discovered a " friend " played

practical joke and signed me up to some adult groups!!!) I think

having to wait for test results is playing on my mind - fear of the

unknown!

Apologise )

> Unfortunately, there is no way to tell for sure when you first got

IgAN. You

> see, usually by the time a lab result picks up an abnormality, you

usually

> have already lost significant kidney function, often 50% or more.

There really

> is no way to tell for sure.

>

> The best thing is to keep a record of your lab results going

forward, and

> those numbers can be used to get an idea of your rate of

progression.

>

December 2, 2003

Thanks for that Cy, I think it's very easy to forget how fortunate I

am until i read things like this. I'm sorry for your loss - you're a

very strong person!

> Hi Dave,

>

> Plot the graph backwards??? I think you're the only one whose come

up with

> that line! I don't know if it would account for that long

initial " :flat

> line period " during which people rarely progress.

>

> More seriously tho, these days, the idea that someone could be sick

for a

> long time without knowing is the good news to me. I've been

comparing

> kidney disease to other big traumatic illnesses that I've run

into. It took

> me a full year to come to grips with the fact that my son had MPGN

(like

> IgAN, only more extreme greater proteinuria, faster time to end

stage, more

> extreme BP, ect). In retrospect, having that time seems like such

a

> luxury!!! When my husband was sick, his diagnosis, surgery to

remove his

> vocal cords and death happened all so fast - without having had

time to

> adjust to any of it. It had me a wee bit knocked for six! Although

> obviously, I'd prefer that my son not be sick, I'm just very

grateful that

> this time round I have time to deal with it - and prepare him for

dealing

> with it. Mind you, during that year of learning about kidney

disease, I was

> as often as not very scared -- and more than a little bit.

>

> Cy

> How long?

>

> > Hi everyone,

> >

> > Hmmmm been a wee bit knocked for six since I realised that I may

have had

> this thing for a while and not known - ie the viral infection >

gross

> haematuria could be just a sign rather that the starting line when

I just

> assumed the virus was the trigger ..... teach me to read more

huh? :o/

> >

> > So, is there any way to establish how long I may have been a

member of the

> IgAN club? I assume the answer is, over time you'll see your kidney

function

> and you basically plot the graph backwards? Kinda scaring me a

little bit

> (

> >

December 2, 2003

I think it's fair to say that most of the adults here who have IgAN probably

had the condition for some time, perhaps even many years, perhaps since

childhood, before it was detected. Some aren't detected until their serum

creatinine is found to be abnormally high (and it's often not detectable

until half of kidney function has been lost). Others are found to have blood

and/or protein in urine on a routine medical examination. Sometimes, it's

because of sudden cola-coloured urine (usually during or following a cold,

flu, etc.) which brings immediate attention to it. What I think happens is

that, while we all tend to associate an event like a cold, sore throat,

vaccination with the " start " of the disease, it seems probably to me that

the disease was already there (cause unknown) and undiscovered (or perhaps

undiscoverable), and then an event like that causes the flare-up (visible

hematuria) which brings attention to it.

No, you can't really graph kidney function backwards, unfortunately, because

of the reason I already stated above, that is, loss of kidney function

usually has no effect on serum creatinine numbers until it's fairly

significant. And since it literally take years for enough of that loss of

function to occur, any graph tracking it backwards in time would just be a

flat line, or in other words, meaningless.

Under these conditions, it seems plausible that, since the majority of IgAN

seems to " happen " in a person's 20's, the IgAN could easily have actually

started in adolescence or even childhood without anyone knowing, keeping in

mind that not every IgAN patient has episodes of visible hematuria.

I think it's pretty clear by now that there's a genetic component to this

disease. Probably many people (like other family members) have a very mild

form that never evolves or never gets detected in their lifetime.

Pierre

P.S. You won't find this written up anywhere. It's purely speculation on my

part.

> How long?

>

> > Hi everyone,

> >

> > Hmmmm been a wee bit knocked for six since I realised that I may have

had

> this thing for a while and not known - ie the viral infection > gross

> haematuria could be just a sign rather that the starting line when I just

> assumed the virus was the trigger ..... teach me to read more huh? :o/

> >

> > So, is there any way to establish how long I may have been a member of

the

> IgAN club? I assume the answer is, over time you'll see your kidney

function

> and you basically plot the graph backwards? Kinda scaring me a little bit

> (