Re: Back from the Neph....

September 6, 2004

Hi Shara,

I know your biopsy is tomorrow, and I will be praying for you! Don't get too

worried about it tonight, just try to get some sleep and it will be over

before you know it.

In a message dated 9/6/2004 7:13:39 PM Pacific Daylight Time,

sharareece@... writes:

> , this is the perfect place to express your emotions. Being as

> many of the people have been at my stage, and yours before, they

> understand. I guess being the night before my biopsy I'm a little

> nervous, but not because of the actual procedure. I'm just starting

> to feel/realize, whatever, that there is something wrong with my

> body. Anyway I'll post Wednesday or whenever I can. - Shara

September 6, 2004

Hi ,

Please always feel free to write anything you are feeling. Just because some

of us are more advanced does not mean you should not feel the way you

do...and just for the record, expressing yourself is definitely not whining.

I would not worry too much about the protein/creatinine ration going from 89

to 98, that is still within what could be a normal variation from test to

test.

The good news is that your still have total kidney function AND that you get

to start weaning down on the Prednisone. Both causes to celebrate.

Keep us informed on how you progress.

In a message dated 9/6/2004 7:14:01 PM Pacific Daylight Time,

sneekersmom@... writes:

> Hello!

>

> I got my test results from the Neph on Friday..

>

> My Protein /Creatin is back up to 98 from 89 ( I had to smile about the

> reversal of numbers, being dyslexic and all! )

>

> I can't seem to remember all the numbers right now, but basically it was a

> bit of a back slide.

>

> I do still have total kidney function.

>

> He decided to reduce my Prednisone to 20 mg every other day from 30 mg, and

> he doesn't want to do the third IV Press. I was having a hard time with the

> test results, I was expecting (hoping) for more " WOW this is GREAT " - type

> results. So he had to spend some time explaining to me that reducing the

> Prednisone was the way to go. " This isn't some type of an endurance thing

> here, . Reducing the Prednisone will reduce the side affects, but it

> will still be suppressing your immune system. There isn't anything written

> in stone saying that 30 mg is the Magic number. 20 Mg may well do the trick

> here. "

>

> I have been feeling sort of like I want to Blast this IgA thing right out of

> my Kidneys, you know, if 30 mg is good, let's do 60! I know that isn't the

> way it works, I am just being silly, but MAN I just want to be well again!

>

> I feel kinda dumb whining about where I am, when there are others here with

> far more advanced stages.

>

> But you all are the only ones that REALLY understand.

>

> I thank God for finding this group!

>

September 6, 2004

, this is the perfect place to express your emotions. Being as

many of the people have been at my stage, and yours before, they

understand. I guess being the night before my biopsy I'm a little

nervous, but not because of the actual procedure. I'm just starting

to feel/realize, whatever, that there is something wrong with my

body. Anyway I'll post Wednesday or whenever I can. - Shara

> Hello!

>

> I got my test results from the Neph on Friday..

>

> My Protein /Creatin is back up to 98 from 89 ( I had to smile

about the

> reversal of numbers, being dyslexic and all! )

>

> I can't seem to remember all the numbers right now, but basically

it was a

> bit of a back slide.

>

> I do still have total kidney function.

>

> He decided to reduce my Prednisone to 20 mg every other day from

30 mg, and

> he doesn't want to do the third IV Press. I was having a hard time

with the

> test results, I was expecting (hoping) for more " WOW this is

GREAT " - type

> results. So he had to spend some time explaining to me that

reducing the

> Prednisone was the way to go. " This isn't some type of an

endurance thing

> here, . Reducing the Prednisone will reduce the side affects,

but it

> will still be suppressing your immune system. There isn't anything

written

> in stone saying that 30 mg is the Magic number. 20 Mg may well do

the trick

> here. "

>

> I have been feeling sort of like I want to Blast this IgA thing

right out of

> my Kidneys, you know, if 30 mg is good, let's do 60! I know that

isn't the

> way it works, I am just being silly, but MAN I just want to be

well again!

>

> I feel kinda dumb whining about where I am, when there are others

here with

> far more advanced stages.

>

> But you all are the only ones that REALLY understand.

>

> I thank God for finding this group!

>

September 6, 2004

,

No matter where you are with this disease your thoughts, concerns, fears and

joys are always welcome here. Remember it's only whining if you are 2 yrs old

and want attention, if you have valid concerns then voice them and we will

listen no matter how advanced we are. We are all adapting to life with a

chronic disease on a daily basis, it's a journey and we are all here to keep

each other pointing forward. I'm glad to hear your clearance went up but sorry

to hear about the rest of the backslide. Hopefully it will be a minor one and

things will continue to stay stable for you for a long time to come.

I know what you mean about the prednisone, after being on it for nearly a year

I'm fearing weaning off for good. I'm down to that 5mg daily dose and hope to

see stability yet again on my labs (drawn tomorrow). It's done wonders for

brining my protein spill down and if I could stay on it forever and have it keep

my progression suppressed I would do it in a heartbeat....alas they don't work

it that way due to the other nasty side effects it has on your body. One step

at a time and bless each day we walk upright.

Amy

Back from the Neph....

Hello!

I got my test results from the Neph on Friday..

My Protein /Creatin is back up to 98 from 89 ( I had to smile about the

reversal of numbers, being dyslexic and all! )

I can't seem to remember all the numbers right now, but basically it was a

bit of a back slide.

I do still have total kidney function.

He decided to reduce my Prednisone to 20 mg every other day from 30 mg, and

he doesn't want to do the third IV Press. I was having a hard time with the

test results, I was expecting (hoping) for more " WOW this is GREAT " - type

results. So he had to spend some time explaining to me that reducing the

Prednisone was the way to go. " This isn't some type of an endurance thing

here, . Reducing the Prednisone will reduce the side affects, but it

will still be suppressing your immune system. There isn't anything written

in stone saying that 30 mg is the Magic number. 20 Mg may well do the trick

here. "

I have been feeling sort of like I want to Blast this IgA thing right out of

my Kidneys, you know, if 30 mg is good, let's do 60! I know that isn't the

way it works, I am just being silly, but MAN I just want to be well again!

I feel kinda dumb whining about where I am, when there are others here with

far more advanced stages.

But you all are the only ones that REALLY understand.

I thank God for finding this group!

September 7, 2004

Doh! Talk about being dyslexic....I was reading your post as things were

improving from 98 to 89....not that they went up from 89 to 98. I blame it on

the sinus infection and lack of sleep. )

Your Creatinine of 1.5 is your serum creatinine reading. You are right that

it isn't too far off from high normal readings as the range is usually listed as

0.8-1.4

From Medline Plus website regarding creatinine clearance and GFR:

" The creatinine clearance test compares the level of creatinine in urine with

the creatinine level in the blood, usually based on measurements of a 24-hour

urine sample and a blood sample drawn at the end of the 24-hour period.

Clearance is often measured as milliliters/minute (ml/min).

Because creatinine is found in stable plasma concentrations, is freely filtered

and not reabsorbed, and is minimally secreted by the kidneys, creatinine

clearance is used to estimate the glomerular filtration rate (GFR). The GFR in

turn is the standard by which kidney function is assessed. "

Have you had a 24 hour urine collection done? (I'm assuming you have if you are

on prednisone). The lab values from that will include your creatinine

clearance. Your creatinine clearance is close enough to the GFR to make the

values interchangeable...basically your clearance is your GFR.

As for how your protein spill figures into all of this....well the more protein

you are spilling the higher your risk for reaching end stage renal failure.

They like to try and keep the protein spill down if they can to help prolong the

life of your kidneys and to aid in keeping your cholesterol levels down. The

more protein you spill the greater chance your cholesterol levels will go up due

to the lack of protein in your bloodstream.

I know what you mean about information overload. The first 6 months after my

diagnosis I spent just trying to wrap my head around everything....the extent of

the damage I have didn't hit me until I started posting here and then it was

like ....dang I guess the doctor wasn't joking when he said we need to treat me

aggressively RIGHT NOW. ) Believe it or not you will learn the terminology

and then it will feel natural to talk about these things over lunch.