Re: [igan]another newcomer

[Guest guest]

Gen:

Your spirit and outlook are the best thing that you have going for you. I

was diagnosed in early December 2000, and went through a rough patch,

primarily because of reaction to all of the drugs that they gave me. After

recovering from that, I have felt better and better every day. 3 years

later, and I am back doing the things I love. Unless I tell somebody about

my situation, they wouldn't know. My friends who saw me so sick still can't

believe how good I look in comparison to my lowest point. My kidney

function is staying relatively stable, and I feel that with the proper care,

I should be able to maximize the amount of time I have with my own

functioning kidneys.

I'm married, so I can't give you advice on the guy that you just started

seeing. Try making it clear to him that there's really no major change --

just that you have to take some medicine from time to time. If he is truly

interested, I would hope that he would be supportive.

Your extended family and friends should be your closest support. We'll be

here to help answer questions as you need some information -- I know that

this group was incredibly important to me. I would have gone crazy if I

didn't have people that had already gone through this provide the kind of

assistance this group is capable of.

Good luck.

By the way, Tahoe is one of my favorite places to ski. I haven't been back

there since getting sick, but I have been to Utah once or twice!

Walt

_____

From: Genevieve Bookwalter

Sent: Friday, March 05, 2004 1:20 AM

To: iga-nephropathy

Subject: Re: another newcomer

Hello out there,

My name is Genevieve and I've been reading your postings for the past few

days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

Thursday, and tomorrow is my first appointment since the nephrologist

called to tell me the news. Anyway, I was really impressed with how

supportive, encouraging and upbeat everyone seems so I thought I'd write in

myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills of

California near Yosemite National Park. It's a blast, I love it. This

disease, however, has put a damper on things. I'm pretty nervous about

it...especially the drugs. The doc told me he was going to put me on

prednisone and cytoxin for a while, then after a few months switch the

cytoxin to imuran...what do you guys think of those? I've been on prednisone

before for poison oak and swelled up like the marshmellow man...but the doc

swears if I only take it every other day, like he's going to prescribe, I

shouldn't have that problem. My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one...but I'm

concerned with more day to day questions, like will I still be able to go

out drinking with my friends, will I still fit into my new jeans, and will

the guy I just started seeing jump ship because of all this.

The biggest things I have going for me now are a very large, very close

extended family and a tight group of friends that keeps me laughing. As one

of my buddies said, " At least it's not NECROpathy. Then you'd be dead! " Sick

sense of humor, but it makes me smile!

Thanks to whoever posted the list of questions, I saw them online yesterday

and plan on taking them to my appointment tomorrow. And thanks for letting

me tune in the past few days before I had the guts to write something

myself. I hope everyone's doing well--

take care

gen

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]

HI Jen,

Yes, I am in San . I live close enough to get up your way and enjoy the

beauty of Yosemite in about 3 hours or so. My Nephrologist is Dr. Mazbar. He

is EXCELLENT! I can't say enough good things about him!

That is excellent news that you clearance and creatinine are doing so well,

but 10 grams is too much protein to be spilling. That much protein can cause

further damage to your kidneys, so it is important to get that and your BP

under control. Prednisone is usually a first line of defense to attach the

protein when you are spilling that much, but Cytoxan is more normally used for

the

more aggressive cases. Not too many of our members have been on Cytoxan. When

I was spilling 10 grams in 24 hours, my doctor talked to me about Cytoxan,

but held off, and fortunately it came down without it.

I will past a link to a website that explains lab results for you:

http://www.coloradohealthsite.org/dialysis/bc/blood_chem.html

Hope you find it useful.

[Guest guest]

HI Jen,

Yes, I am in San . I live close enough to get up your way and enjoy the

beauty of Yosemite in about 3 hours or so. My Nephrologist is Dr. Mazbar. He

is EXCELLENT! I can't say enough good things about him!

That is excellent news that you clearance and creatinine are doing so well,

but 10 grams is too much protein to be spilling. That much protein can cause

further damage to your kidneys, so it is important to get that and your BP

under control. Prednisone is usually a first line of defense to attach the

protein when you are spilling that much, but Cytoxan is more normally used for

the

more aggressive cases. Not too many of our members have been on Cytoxan. When

I was spilling 10 grams in 24 hours, my doctor talked to me about Cytoxan,

but held off, and fortunately it came down without it.

I will past a link to a website that explains lab results for you:

http://www.coloradohealthsite.org/dialysis/bc/blood_chem.html

Hope you find it useful.

[Guest guest]

HI Jen,

Yes, I am in San . I live close enough to get up your way and enjoy the

beauty of Yosemite in about 3 hours or so. My Nephrologist is Dr. Mazbar. He

is EXCELLENT! I can't say enough good things about him!

That is excellent news that you clearance and creatinine are doing so well,

but 10 grams is too much protein to be spilling. That much protein can cause

further damage to your kidneys, so it is important to get that and your BP

under control. Prednisone is usually a first line of defense to attach the

protein when you are spilling that much, but Cytoxan is more normally used for

the

more aggressive cases. Not too many of our members have been on Cytoxan. When

I was spilling 10 grams in 24 hours, my doctor talked to me about Cytoxan,

but held off, and fortunately it came down without it.

I will past a link to a website that explains lab results for you:

http://www.coloradohealthsite.org/dialysis/bc/blood_chem.html

Hope you find it useful.

[Guest guest]

Hello everyone...

Thank you all SO much for your encouragement! Yes, where I live is quite

beautiful...I'm also fortunate that my job for the local paper requires me

to write stories about rivers, wildfires, Yosemite...I can't complain much

at all! I wish I could somehow localize a story about IgAN...I feel like I

have a second job trying to learn as much as I can about this newfound

disease. I also wish I had paid more attention in physiology class!

So I went to the doctor yesterday, and while I will be ingesting a new and

exciting daily concoction of chemicals (before this I could barely remember

to take my vitamins) there was some positive news as well. I'm very

fortunate that my general practitioner didn't dismiss my high blood pressure

as " white coat hypertension " last fall and began ordering blood tests, as it

seems they've caught this early. My creatine clearance is 1.2, or 70 ml/min,

which the neph said means I still have almost all my kidney function (On a

side note, could anyone PLEASE provide, or send me to a web page with, a

quick primer on what the heck creatine clearance is and signifies?? My

doctor explained it to me and I thought I understood it at the time, but now

that I " m home I'm confused again....). However, I'm leaking about 10 g of

protein. So he put me on 80 mg prednisone every other day, 160 mg Diavan

every day, I think 60 mg cytoxan every day, and 1000 mg fish oil every day.

What do you think? Should I get a second opinion, or just go with this right

now? From what I've read it sounds like a pretty standard first attack...

-- where in Northern California do you live? Are you in the Bay Area?

Who/where is your nephrologist? I live in Sonora and I'm going to Dr.

Golden in Modesto...I like him so far.

Walt -- yep, Tahoe rocks! I'm an avid snowboarder myself. I rode Brighton in

Utah a few years ago, that was awesome too. I hope this disease doesn't

dampen your downhill adventures too much!

Thank you all again for your help and kind words. I hope everything's going

well--

gen

on 3/5/04 8:22 PM, Walter Crosby at wcrosby@... wrote:

Gen:

Your spirit and outlook are the best thing that you have going for you. I

was diagnosed in early December 2000, and went through a rough patch,

primarily because of reaction to all of the drugs that they gave me. After

recovering from that, I have felt better and better every day. 3 years

later, and I am back doing the things I love. Unless I tell somebody about

my situation, they wouldn't know. My friends who saw me so sick still can't

believe how good I look in comparison to my lowest point. My kidney

function is staying relatively stable, and I feel that with the proper care,

I should be able to maximize the amount of time I have with my own

functioning kidneys.

I'm married, so I can't give you advice on the guy that you just started

seeing. Try making it clear to him that there's really no major change --

just that you have to take some medicine from time to time. If he is truly

interested, I would hope that he would be supportive.

Your extended family and friends should be your closest support. We'll be

here to help answer questions as you need some information -- I know that

this group was incredibly important to me. I would have gone crazy if I

didn't have people that had already gone through this provide the kind of

assistance this group is capable of.

Good luck.

By the way, Tahoe is one of my favorite places to ski. I haven't been back

there since getting sick, but I have been to Utah once or twice!

Walt

_____

From: Genevieve Bookwalter

Sent: Friday, March 05, 2004 1:20 AM

To: iga-nephropathy

Subject: Re: another newcomer

Hello out there,

My name is Genevieve and I've been reading your postings for the past few

days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

Thursday, and tomorrow is my first appointment since the nephrologist

called to tell me the news. Anyway, I was really impressed with how

supportive, encouraging and upbeat everyone seems so I thought I'd write in

myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills of

California near Yosemite National Park. It's a blast, I love it. This

disease, however, has put a damper on things. I'm pretty nervous about

it...especially the drugs. The doc told me he was going to put me on

prednisone and cytoxin for a while, then after a few months switch the

cytoxin to imuran...what do you guys think of those? I've been on prednisone

before for poison oak and swelled up like the marshmellow man...but the doc

swears if I only take it every other day, like he's going to prescribe, I

shouldn't have that problem. My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one...but I'm

concerned with more day to day questions, like will I still be able to go

out drinking with my friends, will I still fit into my new jeans, and will

the guy I just started seeing jump ship because of all this.

The biggest things I have going for me now are a very large, very close

extended family and a tight group of friends that keeps me laughing. As one

of my buddies said, " At least it's not NECROpathy. Then you'd be dead! " Sick

sense of humor, but it makes me smile!

Thanks to whoever posted the list of questions, I saw them online yesterday

and plan on taking them to my appointment tomorrow. And thanks for letting

me tune in the past few days before I had the guts to write something

myself. I hope everyone's doing well--

take care

gen

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]

Hello everyone...

Thank you all SO much for your encouragement! Yes, where I live is quite

beautiful...I'm also fortunate that my job for the local paper requires me

to write stories about rivers, wildfires, Yosemite...I can't complain much

at all! I wish I could somehow localize a story about IgAN...I feel like I

have a second job trying to learn as much as I can about this newfound

disease. I also wish I had paid more attention in physiology class!

So I went to the doctor yesterday, and while I will be ingesting a new and

exciting daily concoction of chemicals (before this I could barely remember

to take my vitamins) there was some positive news as well. I'm very

fortunate that my general practitioner didn't dismiss my high blood pressure

as " white coat hypertension " last fall and began ordering blood tests, as it

seems they've caught this early. My creatine clearance is 1.2, or 70 ml/min,

which the neph said means I still have almost all my kidney function (On a

side note, could anyone PLEASE provide, or send me to a web page with, a

quick primer on what the heck creatine clearance is and signifies?? My

doctor explained it to me and I thought I understood it at the time, but now

that I " m home I'm confused again....). However, I'm leaking about 10 g of

protein. So he put me on 80 mg prednisone every other day, 160 mg Diavan

every day, I think 60 mg cytoxan every day, and 1000 mg fish oil every day.

What do you think? Should I get a second opinion, or just go with this right

now? From what I've read it sounds like a pretty standard first attack...

-- where in Northern California do you live? Are you in the Bay Area?

Who/where is your nephrologist? I live in Sonora and I'm going to Dr.

Golden in Modesto...I like him so far.

Walt -- yep, Tahoe rocks! I'm an avid snowboarder myself. I rode Brighton in

Utah a few years ago, that was awesome too. I hope this disease doesn't

dampen your downhill adventures too much!

Thank you all again for your help and kind words. I hope everything's going

well--

gen

on 3/5/04 8:22 PM, Walter Crosby at wcrosby@... wrote:

Gen:

Your spirit and outlook are the best thing that you have going for you. I

was diagnosed in early December 2000, and went through a rough patch,

primarily because of reaction to all of the drugs that they gave me. After

recovering from that, I have felt better and better every day. 3 years

later, and I am back doing the things I love. Unless I tell somebody about

my situation, they wouldn't know. My friends who saw me so sick still can't

believe how good I look in comparison to my lowest point. My kidney

function is staying relatively stable, and I feel that with the proper care,

I should be able to maximize the amount of time I have with my own

functioning kidneys.

I'm married, so I can't give you advice on the guy that you just started

seeing. Try making it clear to him that there's really no major change --

just that you have to take some medicine from time to time. If he is truly

interested, I would hope that he would be supportive.

Your extended family and friends should be your closest support. We'll be

here to help answer questions as you need some information -- I know that

this group was incredibly important to me. I would have gone crazy if I

didn't have people that had already gone through this provide the kind of

assistance this group is capable of.

Good luck.

By the way, Tahoe is one of my favorite places to ski. I haven't been back

there since getting sick, but I have been to Utah once or twice!

Walt

_____

From: Genevieve Bookwalter

Sent: Friday, March 05, 2004 1:20 AM

To: iga-nephropathy

Subject: Re: another newcomer

Hello out there,

My name is Genevieve and I've been reading your postings for the past few

days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

Thursday, and tomorrow is my first appointment since the nephrologist

called to tell me the news. Anyway, I was really impressed with how

supportive, encouraging and upbeat everyone seems so I thought I'd write in

myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills of

California near Yosemite National Park. It's a blast, I love it. This

disease, however, has put a damper on things. I'm pretty nervous about

it...especially the drugs. The doc told me he was going to put me on

prednisone and cytoxin for a while, then after a few months switch the

cytoxin to imuran...what do you guys think of those? I've been on prednisone

before for poison oak and swelled up like the marshmellow man...but the doc

swears if I only take it every other day, like he's going to prescribe, I

shouldn't have that problem. My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one...but I'm

concerned with more day to day questions, like will I still be able to go

out drinking with my friends, will I still fit into my new jeans, and will

the guy I just started seeing jump ship because of all this.

The biggest things I have going for me now are a very large, very close

extended family and a tight group of friends that keeps me laughing. As one

of my buddies said, " At least it's not NECROpathy. Then you'd be dead! " Sick

sense of humor, but it makes me smile!

Thanks to whoever posted the list of questions, I saw them online yesterday

and plan on taking them to my appointment tomorrow. And thanks for letting

me tune in the past few days before I had the guts to write something

myself. I hope everyone's doing well--

take care

gen

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]

Hello everyone...

Thank you all SO much for your encouragement! Yes, where I live is quite

beautiful...I'm also fortunate that my job for the local paper requires me

to write stories about rivers, wildfires, Yosemite...I can't complain much

at all! I wish I could somehow localize a story about IgAN...I feel like I

have a second job trying to learn as much as I can about this newfound

disease. I also wish I had paid more attention in physiology class!

So I went to the doctor yesterday, and while I will be ingesting a new and

exciting daily concoction of chemicals (before this I could barely remember

to take my vitamins) there was some positive news as well. I'm very

fortunate that my general practitioner didn't dismiss my high blood pressure

as " white coat hypertension " last fall and began ordering blood tests, as it

seems they've caught this early. My creatine clearance is 1.2, or 70 ml/min,

which the neph said means I still have almost all my kidney function (On a

side note, could anyone PLEASE provide, or send me to a web page with, a

quick primer on what the heck creatine clearance is and signifies?? My

doctor explained it to me and I thought I understood it at the time, but now

that I " m home I'm confused again....). However, I'm leaking about 10 g of

protein. So he put me on 80 mg prednisone every other day, 160 mg Diavan

every day, I think 60 mg cytoxan every day, and 1000 mg fish oil every day.

What do you think? Should I get a second opinion, or just go with this right

now? From what I've read it sounds like a pretty standard first attack...

-- where in Northern California do you live? Are you in the Bay Area?

Who/where is your nephrologist? I live in Sonora and I'm going to Dr.

Golden in Modesto...I like him so far.

Walt -- yep, Tahoe rocks! I'm an avid snowboarder myself. I rode Brighton in

Utah a few years ago, that was awesome too. I hope this disease doesn't

dampen your downhill adventures too much!

Thank you all again for your help and kind words. I hope everything's going

well--

gen

on 3/5/04 8:22 PM, Walter Crosby at wcrosby@... wrote:

Gen:

Your spirit and outlook are the best thing that you have going for you. I

was diagnosed in early December 2000, and went through a rough patch,

primarily because of reaction to all of the drugs that they gave me. After

recovering from that, I have felt better and better every day. 3 years

later, and I am back doing the things I love. Unless I tell somebody about

my situation, they wouldn't know. My friends who saw me so sick still can't

believe how good I look in comparison to my lowest point. My kidney

function is staying relatively stable, and I feel that with the proper care,

I should be able to maximize the amount of time I have with my own

functioning kidneys.

I'm married, so I can't give you advice on the guy that you just started

seeing. Try making it clear to him that there's really no major change --

just that you have to take some medicine from time to time. If he is truly

interested, I would hope that he would be supportive.

Your extended family and friends should be your closest support. We'll be

here to help answer questions as you need some information -- I know that

this group was incredibly important to me. I would have gone crazy if I

didn't have people that had already gone through this provide the kind of

assistance this group is capable of.

Good luck.

By the way, Tahoe is one of my favorite places to ski. I haven't been back

there since getting sick, but I have been to Utah once or twice!

Walt

_____

From: Genevieve Bookwalter

Sent: Friday, March 05, 2004 1:20 AM

To: iga-nephropathy

Subject: Re: another newcomer

Hello out there,

My name is Genevieve and I've been reading your postings for the past few

days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

Thursday, and tomorrow is my first appointment since the nephrologist

called to tell me the news. Anyway, I was really impressed with how

supportive, encouraging and upbeat everyone seems so I thought I'd write in

myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills of

California near Yosemite National Park. It's a blast, I love it. This

disease, however, has put a damper on things. I'm pretty nervous about

it...especially the drugs. The doc told me he was going to put me on

prednisone and cytoxin for a while, then after a few months switch the

cytoxin to imuran...what do you guys think of those? I've been on prednisone

before for poison oak and swelled up like the marshmellow man...but the doc

swears if I only take it every other day, like he's going to prescribe, I

shouldn't have that problem. My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one...but I'm

concerned with more day to day questions, like will I still be able to go

out drinking with my friends, will I still fit into my new jeans, and will

the guy I just started seeing jump ship because of all this.

The biggest things I have going for me now are a very large, very close

extended family and a tight group of friends that keeps me laughing. As one

of my buddies said, " At least it's not NECROpathy. Then you'd be dead! " Sick

sense of humor, but it makes me smile!

Thanks to whoever posted the list of questions, I saw them online yesterday

and plan on taking them to my appointment tomorrow. And thanks for letting

me tune in the past few days before I had the guts to write something

myself. I hope everyone's doing well--

take care

gen

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]

Hi Gen,

Lab results is something that I've been working on for the website.

Unfortunately, since I started dialysis, I find it harder to get things like

that done.

There are some websites that explain, but I always like to take a stab at

it. I find that while there's a lot of info on the web, it's rarely

consolidated in one place.

Essentially, creatinine is a waste byproduct of the muscle use. When muscles

are used, creatine becomes creatinine. Now, the interest of this for kidney

patients is that creatinine is all cleared by the kidneys, and it builds up

in the blood when there is a loss of kidney function. Given that, when blood

work is done, they measure your " serum creatinine " . This is the amount of

creatinine that is in your blood at the time the blood was drawn (and

presumably, all of the time, more or less).

Now that's blood. Creatinine clearance is measured from urine, not blood.

So, it comes from a urine sample. The idea is to measure how much of it is

" cleared " out of the body by the kidneys, instead of how much there is in

the body. In order to measure this, it has to be done over a period of time,

so, " creatinine clearance " comes from a 24 hour urine collection. Creatinine

clearance is a more accurate measure of kidney function because, unlike

serum creatinine, it's not affected by the amount of muscle mass you might

have. For example, a serum of creatinine of 1.2 does not mean the same level

of renal insufficiency in a person who is 5'2 " , 100 lbs, as in someone who

is 6'2', 200 lbs. But lets's say that if both had a measured creatinine

clearance of 50, it would mean the same thing for each one in terms of

kidney function: about 50%. Creatinine clearance is more or less synonymous

with " glomerular filtration rate " (not quite, but close enough for our

purposes).

As the serum creatinine goes up, it follows that the creatinine clearance

number goes down, since if creatinine is up in the bloodstream, then less of

it is being cleared by the kidneys.

In your case, it looks like you still have virtually normal kidney function.

Your immediate problem appears to be quite heavy proteinuria, so the drugs

your doctor wants to use seem like the appropriate thing to do, in my

layman's view. This is because heavy proteinuria is your enemy. It causes

it's own symptoms beyond those of the IgAN itself, and it's a clear risk

factor for progression. So, they will want to get that number down with oral

steroids and/or other types of immunosuppressants. If that number, 10 grams

is 10 grams per day, as it seems to be, that is very heavy proteinuria for a

disease like IgAN. The Diovan will also help with that to some extent, but

it's main role at this point is more to control blood pressure, and to help

retard progression of the disease. Fish oil is also thought by some in the

nephrology community to help retard progression somewhat (this one is more

debatable than the Diovan and its cousins, though).

Pierre

Re: another newcomer

> Hello everyone...

>

> Thank you all SO much for your encouragement! Yes, where I live is quite

> beautiful...I'm also fortunate that my job for the local paper requires me

> to write stories about rivers, wildfires, Yosemite...I can't complain much

> at all! I wish I could somehow localize a story about IgAN...I feel like I

> have a second job trying to learn as much as I can about this newfound

> disease. I also wish I had paid more attention in physiology class!

>

> So I went to the doctor yesterday, and while I will be ingesting a new and

> exciting daily concoction of chemicals (before this I could barely

remember

> to take my vitamins) there was some positive news as well. I'm very

> fortunate that my general practitioner didn't dismiss my high blood

pressure

> as " white coat hypertension " last fall and began ordering blood tests, as

it

> seems they've caught this early. My creatine clearance is 1.2, or 70

ml/min,

> which the neph said means I still have almost all my kidney function (On a

> side note, could anyone PLEASE provide, or send me to a web page with, a

> quick primer on what the heck creatine clearance is and signifies?? My

> doctor explained it to me and I thought I understood it at the time, but

now

> that I " m home I'm confused again....). However, I'm leaking about 10 g of

> protein. So he put me on 80 mg prednisone every other day, 160 mg Diavan

> every day, I think 60 mg cytoxan every day, and 1000 mg fish oil every

day.

> What do you think? Should I get a second opinion, or just go with this

right

> now? From what I've read it sounds like a pretty standard first attack...

>

> -- where in Northern California do you live? Are you in the Bay

Area?

> Who/where is your nephrologist? I live in Sonora and I'm going to Dr.

> Golden in Modesto...I like him so far.

>

> Walt -- yep, Tahoe rocks! I'm an avid snowboarder myself. I rode Brighton

in

> Utah a few years ago, that was awesome too. I hope this disease doesn't

> dampen your downhill adventures too much!

>

> Thank you all again for your help and kind words. I hope everything's

going

> well--

>

> gen

>

>

>

[Guest guest]

Hi Gen,

Lab results is something that I've been working on for the website.

Unfortunately, since I started dialysis, I find it harder to get things like

that done.

There are some websites that explain, but I always like to take a stab at

it. I find that while there's a lot of info on the web, it's rarely

consolidated in one place.

Essentially, creatinine is a waste byproduct of the muscle use. When muscles

are used, creatine becomes creatinine. Now, the interest of this for kidney

patients is that creatinine is all cleared by the kidneys, and it builds up

in the blood when there is a loss of kidney function. Given that, when blood

work is done, they measure your " serum creatinine " . This is the amount of

creatinine that is in your blood at the time the blood was drawn (and

presumably, all of the time, more or less).

Now that's blood. Creatinine clearance is measured from urine, not blood.

So, it comes from a urine sample. The idea is to measure how much of it is

" cleared " out of the body by the kidneys, instead of how much there is in

the body. In order to measure this, it has to be done over a period of time,

so, " creatinine clearance " comes from a 24 hour urine collection. Creatinine

clearance is a more accurate measure of kidney function because, unlike

serum creatinine, it's not affected by the amount of muscle mass you might

have. For example, a serum of creatinine of 1.2 does not mean the same level

of renal insufficiency in a person who is 5'2 " , 100 lbs, as in someone who

is 6'2', 200 lbs. But lets's say that if both had a measured creatinine

clearance of 50, it would mean the same thing for each one in terms of

kidney function: about 50%. Creatinine clearance is more or less synonymous

with " glomerular filtration rate " (not quite, but close enough for our

purposes).

As the serum creatinine goes up, it follows that the creatinine clearance

number goes down, since if creatinine is up in the bloodstream, then less of

it is being cleared by the kidneys.

In your case, it looks like you still have virtually normal kidney function.

Your immediate problem appears to be quite heavy proteinuria, so the drugs

your doctor wants to use seem like the appropriate thing to do, in my

layman's view. This is because heavy proteinuria is your enemy. It causes

it's own symptoms beyond those of the IgAN itself, and it's a clear risk

factor for progression. So, they will want to get that number down with oral

steroids and/or other types of immunosuppressants. If that number, 10 grams

is 10 grams per day, as it seems to be, that is very heavy proteinuria for a

disease like IgAN. The Diovan will also help with that to some extent, but

it's main role at this point is more to control blood pressure, and to help

retard progression of the disease. Fish oil is also thought by some in the

nephrology community to help retard progression somewhat (this one is more

debatable than the Diovan and its cousins, though).

Pierre

Re: another newcomer

> Hello everyone...

>

> Thank you all SO much for your encouragement! Yes, where I live is quite

> beautiful...I'm also fortunate that my job for the local paper requires me

> to write stories about rivers, wildfires, Yosemite...I can't complain much

> at all! I wish I could somehow localize a story about IgAN...I feel like I

> have a second job trying to learn as much as I can about this newfound

> disease. I also wish I had paid more attention in physiology class!

>

> So I went to the doctor yesterday, and while I will be ingesting a new and

> exciting daily concoction of chemicals (before this I could barely

remember

> to take my vitamins) there was some positive news as well. I'm very

> fortunate that my general practitioner didn't dismiss my high blood

pressure

> as " white coat hypertension " last fall and began ordering blood tests, as

it

> seems they've caught this early. My creatine clearance is 1.2, or 70

ml/min,

> which the neph said means I still have almost all my kidney function (On a

> side note, could anyone PLEASE provide, or send me to a web page with, a

> quick primer on what the heck creatine clearance is and signifies?? My

> doctor explained it to me and I thought I understood it at the time, but

now

> that I " m home I'm confused again....). However, I'm leaking about 10 g of

> protein. So he put me on 80 mg prednisone every other day, 160 mg Diavan

> every day, I think 60 mg cytoxan every day, and 1000 mg fish oil every

day.

> What do you think? Should I get a second opinion, or just go with this

right

> now? From what I've read it sounds like a pretty standard first attack...

>

> -- where in Northern California do you live? Are you in the Bay

Area?

> Who/where is your nephrologist? I live in Sonora and I'm going to Dr.

> Golden in Modesto...I like him so far.

>

> Walt -- yep, Tahoe rocks! I'm an avid snowboarder myself. I rode Brighton

in

> Utah a few years ago, that was awesome too. I hope this disease doesn't

> dampen your downhill adventures too much!

>

> Thank you all again for your help and kind words. I hope everything's

going

> well--

>

> gen

>

>

>

[Guest guest]

Hi Gen,

Lab results is something that I've been working on for the website.

Unfortunately, since I started dialysis, I find it harder to get things like

that done.

There are some websites that explain, but I always like to take a stab at

it. I find that while there's a lot of info on the web, it's rarely

consolidated in one place.

Essentially, creatinine is a waste byproduct of the muscle use. When muscles

are used, creatine becomes creatinine. Now, the interest of this for kidney

patients is that creatinine is all cleared by the kidneys, and it builds up

in the blood when there is a loss of kidney function. Given that, when blood

work is done, they measure your " serum creatinine " . This is the amount of

creatinine that is in your blood at the time the blood was drawn (and

presumably, all of the time, more or less).

Now that's blood. Creatinine clearance is measured from urine, not blood.

So, it comes from a urine sample. The idea is to measure how much of it is

" cleared " out of the body by the kidneys, instead of how much there is in

the body. In order to measure this, it has to be done over a period of time,

so, " creatinine clearance " comes from a 24 hour urine collection. Creatinine

clearance is a more accurate measure of kidney function because, unlike

serum creatinine, it's not affected by the amount of muscle mass you might

have. For example, a serum of creatinine of 1.2 does not mean the same level

of renal insufficiency in a person who is 5'2 " , 100 lbs, as in someone who

is 6'2', 200 lbs. But lets's say that if both had a measured creatinine

clearance of 50, it would mean the same thing for each one in terms of

kidney function: about 50%. Creatinine clearance is more or less synonymous

with " glomerular filtration rate " (not quite, but close enough for our

purposes).

As the serum creatinine goes up, it follows that the creatinine clearance

number goes down, since if creatinine is up in the bloodstream, then less of

it is being cleared by the kidneys.

In your case, it looks like you still have virtually normal kidney function.

Your immediate problem appears to be quite heavy proteinuria, so the drugs

your doctor wants to use seem like the appropriate thing to do, in my

layman's view. This is because heavy proteinuria is your enemy. It causes

it's own symptoms beyond those of the IgAN itself, and it's a clear risk

factor for progression. So, they will want to get that number down with oral

steroids and/or other types of immunosuppressants. If that number, 10 grams

is 10 grams per day, as it seems to be, that is very heavy proteinuria for a

disease like IgAN. The Diovan will also help with that to some extent, but

it's main role at this point is more to control blood pressure, and to help

retard progression of the disease. Fish oil is also thought by some in the

nephrology community to help retard progression somewhat (this one is more

debatable than the Diovan and its cousins, though).

Pierre

Re: another newcomer

> Hello everyone...

>

> Thank you all SO much for your encouragement! Yes, where I live is quite

> beautiful...I'm also fortunate that my job for the local paper requires me

> to write stories about rivers, wildfires, Yosemite...I can't complain much

> at all! I wish I could somehow localize a story about IgAN...I feel like I

> have a second job trying to learn as much as I can about this newfound

> disease. I also wish I had paid more attention in physiology class!

>

> So I went to the doctor yesterday, and while I will be ingesting a new and

> exciting daily concoction of chemicals (before this I could barely

remember

> to take my vitamins) there was some positive news as well. I'm very

> fortunate that my general practitioner didn't dismiss my high blood

pressure

> as " white coat hypertension " last fall and began ordering blood tests, as

it

> seems they've caught this early. My creatine clearance is 1.2, or 70

ml/min,

> which the neph said means I still have almost all my kidney function (On a

> side note, could anyone PLEASE provide, or send me to a web page with, a

> quick primer on what the heck creatine clearance is and signifies?? My

> doctor explained it to me and I thought I understood it at the time, but

now

> that I " m home I'm confused again....). However, I'm leaking about 10 g of

> protein. So he put me on 80 mg prednisone every other day, 160 mg Diavan

> every day, I think 60 mg cytoxan every day, and 1000 mg fish oil every

day.

> What do you think? Should I get a second opinion, or just go with this

right

> now? From what I've read it sounds like a pretty standard first attack...

>

> -- where in Northern California do you live? Are you in the Bay

Area?

> Who/where is your nephrologist? I live in Sonora and I'm going to Dr.

> Golden in Modesto...I like him so far.

>

> Walt -- yep, Tahoe rocks! I'm an avid snowboarder myself. I rode Brighton

in

> Utah a few years ago, that was awesome too. I hope this disease doesn't

> dampen your downhill adventures too much!

>

> Thank you all again for your help and kind words. I hope everything's

going

> well--

>

> gen

>

>

>

[Guest guest]

Hi Gen,

Glad you found us! Sounds like you are keeping a positive attitude and

that is a good thing. ) As for relationsips take them one day at a time

like anything else in life. If it's meant to be he'll stick around no

matter what.

" My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one. "

Do you and I share a mother?? Mine's been freaking out since my diagnosis

and I'm 34 with a family of my own....I keep telling her to take care of her

health then she can freak out about mine. LOL! When my diagnosis came thru

many of my siblings from Illinois came out to visit me because I might be

" dying " ya know. *sigh*

The cocktail of drugs your nepthologist put you on seems like some of the

most common in the first line of attack with heavy proteinuria. If it were

me I'd roll with it rather than going to another neph for a second opinion.

Does your nepthrologist have associates or is he a single neph in his own

clinic? The thing I enjoy about my nephs office is there are 4 of them in

one office and they discuss all their cases with eachother so you sort of

get 3 " second " opinions without having to see another doctor.

Welcome again and feel free to ask away with questions, someone here should

be able to answer them or at least point you in the direction of an answer.

They all can be true lifesavers when you start to freak out.

Amy

[Guest guest]

Hi Gen,

Glad you found us! Sounds like you are keeping a positive attitude and

that is a good thing. ) As for relationsips take them one day at a time

like anything else in life. If it's meant to be he'll stick around no

matter what.

" My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one. "

Do you and I share a mother?? Mine's been freaking out since my diagnosis

and I'm 34 with a family of my own....I keep telling her to take care of her

health then she can freak out about mine. LOL! When my diagnosis came thru

many of my siblings from Illinois came out to visit me because I might be

" dying " ya know. *sigh*

The cocktail of drugs your nepthologist put you on seems like some of the

most common in the first line of attack with heavy proteinuria. If it were

me I'd roll with it rather than going to another neph for a second opinion.

Does your nepthrologist have associates or is he a single neph in his own

clinic? The thing I enjoy about my nephs office is there are 4 of them in

one office and they discuss all their cases with eachother so you sort of

get 3 " second " opinions without having to see another doctor.

Welcome again and feel free to ask away with questions, someone here should

be able to answer them or at least point you in the direction of an answer.

They all can be true lifesavers when you start to freak out.

Amy

[Guest guest]

Hi Gen,

Glad you found us! Sounds like you are keeping a positive attitude and

that is a good thing. ) As for relationsips take them one day at a time

like anything else in life. If it's meant to be he'll stick around no

matter what.

" My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one. "

Do you and I share a mother?? Mine's been freaking out since my diagnosis

and I'm 34 with a family of my own....I keep telling her to take care of her

health then she can freak out about mine. LOL! When my diagnosis came thru

many of my siblings from Illinois came out to visit me because I might be

" dying " ya know. *sigh*

The cocktail of drugs your nepthologist put you on seems like some of the

most common in the first line of attack with heavy proteinuria. If it were

me I'd roll with it rather than going to another neph for a second opinion.

Does your nepthrologist have associates or is he a single neph in his own

clinic? The thing I enjoy about my nephs office is there are 4 of them in

one office and they discuss all their cases with eachother so you sort of

get 3 " second " opinions without having to see another doctor.

Welcome again and feel free to ask away with questions, someone here should

be able to answer them or at least point you in the direction of an answer.

They all can be true lifesavers when you start to freak out.

Amy

[Guest guest]

Hi Gen,

I just read your post and it made me laugh! I love your humour!

Speaking as someone who is just kinda fairly recently possibly diagnosed (have

you ever read so many qualifications in a sentence?!?!?!) all I can say is, I

have decided not to let it make a difference until I have to - now that doesn't

mean I am not going to think about what I do and how it affects my health, just

that if I am going to change my lifestyle to any significant degree, there has

to be a benefit to it - ie I know I have to stop smoking but now I know I HAVE

to stop smoking - and I will! My BP is ok at the moment - just! so I am not

worrying too much about things I will have to change when it's elevated! That's

just my attitude - as for the boyfriend, well - if he runs a mile then he's not

worth keeping is he?

Welcome to our group )

Dave

From: Genevieve Bookwalter

Sent: Friday, March 05, 2004 1:20 AM

To: iga-nephropathy

Subject: Re: another newcomer

Hello out there,

My name is Genevieve and I've been reading your postings for the past few

days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

Thursday, and tomorrow is my first appointment since the nephrologist

called to tell me the news. Anyway, I was really impressed with how

supportive, encouraging and upbeat everyone seems so I thought I'd write in

myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills of

California near Yosemite National Park. It's a blast, I love it. This

disease, however, has put a damper on things. I'm pretty nervous about

it...especially the drugs. The doc told me he was going to put me on

prednisone and cytoxin for a while, then after a few months switch the

cytoxin to imuran...what do you guys think of those? I've been on prednisone

before for poison oak and swelled up like the marshmellow man...but the doc

swears if I only take it every other day, like he's going to prescribe, I

shouldn't have that problem. My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one...but I'm

concerned with more day to day questions, like will I still be able to go

out drinking with my friends, will I still fit into my new jeans, and will

the guy I just started seeing jump ship because of all this.

The biggest things I have going for me now are a very large, very close

extended family and a tight group of friends that keeps me laughing. As one

of my buddies said, " At least it's not NECROpathy. Then you'd be dead! " Sick

sense of humor, but it makes me smile!

Thanks to whoever posted the list of questions, I saw them online yesterday

and plan on taking them to my appointment tomorrow. And thanks for letting

me tune in the past few days before I had the guts to write something

myself. I hope everyone's doing well--

take care

gen

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]

Hi Gen,

I just read your post and it made me laugh! I love your humour!

Speaking as someone who is just kinda fairly recently possibly diagnosed (have

you ever read so many qualifications in a sentence?!?!?!) all I can say is, I

have decided not to let it make a difference until I have to - now that doesn't

mean I am not going to think about what I do and how it affects my health, just

that if I am going to change my lifestyle to any significant degree, there has

to be a benefit to it - ie I know I have to stop smoking but now I know I HAVE

to stop smoking - and I will! My BP is ok at the moment - just! so I am not

worrying too much about things I will have to change when it's elevated! That's

just my attitude - as for the boyfriend, well - if he runs a mile then he's not

worth keeping is he?

Welcome to our group )

Dave

From: Genevieve Bookwalter

Sent: Friday, March 05, 2004 1:20 AM

To: iga-nephropathy

Subject: Re: another newcomer

Hello out there,

My name is Genevieve and I've been reading your postings for the past few

days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

Thursday, and tomorrow is my first appointment since the nephrologist

called to tell me the news. Anyway, I was really impressed with how

supportive, encouraging and upbeat everyone seems so I thought I'd write in

myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills of

California near Yosemite National Park. It's a blast, I love it. This

disease, however, has put a damper on things. I'm pretty nervous about

it...especially the drugs. The doc told me he was going to put me on

prednisone and cytoxin for a while, then after a few months switch the

cytoxin to imuran...what do you guys think of those? I've been on prednisone

before for poison oak and swelled up like the marshmellow man...but the doc

swears if I only take it every other day, like he's going to prescribe, I

shouldn't have that problem. My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one...but I'm

concerned with more day to day questions, like will I still be able to go

out drinking with my friends, will I still fit into my new jeans, and will

the guy I just started seeing jump ship because of all this.

The biggest things I have going for me now are a very large, very close

extended family and a tight group of friends that keeps me laughing. As one

of my buddies said, " At least it's not NECROpathy. Then you'd be dead! " Sick

sense of humor, but it makes me smile!

Thanks to whoever posted the list of questions, I saw them online yesterday

and plan on taking them to my appointment tomorrow. And thanks for letting

me tune in the past few days before I had the guts to write something

myself. I hope everyone's doing well--

take care

gen

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]

Hi Gen,

I just read your post and it made me laugh! I love your humour!

Speaking as someone who is just kinda fairly recently possibly diagnosed (have

you ever read so many qualifications in a sentence?!?!?!) all I can say is, I

have decided not to let it make a difference until I have to - now that doesn't

mean I am not going to think about what I do and how it affects my health, just

that if I am going to change my lifestyle to any significant degree, there has

to be a benefit to it - ie I know I have to stop smoking but now I know I HAVE

to stop smoking - and I will! My BP is ok at the moment - just! so I am not

worrying too much about things I will have to change when it's elevated! That's

just my attitude - as for the boyfriend, well - if he runs a mile then he's not

worth keeping is he?

Welcome to our group )

Dave

From: Genevieve Bookwalter

Sent: Friday, March 05, 2004 1:20 AM

To: iga-nephropathy

Subject: Re: another newcomer

Hello out there,

My name is Genevieve and I've been reading your postings for the past few

days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

Thursday, and tomorrow is my first appointment since the nephrologist

called to tell me the news. Anyway, I was really impressed with how

supportive, encouraging and upbeat everyone seems so I thought I'd write in

myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills of

California near Yosemite National Park. It's a blast, I love it. This

disease, however, has put a damper on things. I'm pretty nervous about

it...especially the drugs. The doc told me he was going to put me on

prednisone and cytoxin for a while, then after a few months switch the

cytoxin to imuran...what do you guys think of those? I've been on prednisone

before for poison oak and swelled up like the marshmellow man...but the doc

swears if I only take it every other day, like he's going to prescribe, I

shouldn't have that problem. My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one...but I'm

concerned with more day to day questions, like will I still be able to go

out drinking with my friends, will I still fit into my new jeans, and will

the guy I just started seeing jump ship because of all this.

The biggest things I have going for me now are a very large, very close

extended family and a tight group of friends that keeps me laughing. As one

of my buddies said, " At least it's not NECROpathy. Then you'd be dead! " Sick

sense of humor, but it makes me smile!

Thanks to whoever posted the list of questions, I saw them online yesterday

and plan on taking them to my appointment tomorrow. And thanks for letting

me tune in the past few days before I had the guts to write something

myself. I hope everyone's doing well--

take care

gen

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]

My mum is like that too- a real pain in the royal ass! It's like I don't want to

tell her stuff!

grrrrr

Re: another newcomer

Hi Gen,

Glad you found us! Sounds like you are keeping a positive attitude and

that is a good thing. ) As for relationsips take them one day at a time

like anything else in life. If it's meant to be he'll stick around no

matter what.

" My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one. "

Do you and I share a mother?? Mine's been freaking out since my diagnosis

and I'm 34 with a family of my own....I keep telling her to take care of her

health then she can freak out about mine. LOL! When my diagnosis came thru

many of my siblings from Illinois came out to visit me because I might be

" dying " ya know. *sigh*

The cocktail of drugs your nepthologist put you on seems like some of the

most common in the first line of attack with heavy proteinuria. If it were

me I'd roll with it rather than going to another neph for a second opinion.

Does your nepthrologist have associates or is he a single neph in his own

clinic? The thing I enjoy about my nephs office is there are 4 of them in

one office and they discuss all their cases with eachother so you sort of

get 3 " second " opinions without having to see another doctor.

Welcome again and feel free to ask away with questions, someone here should

be able to answer them or at least point you in the direction of an answer.

They all can be true lifesavers when you start to freak out.

Amy

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]

Hi Gen

I hadn't extended a welcome to you yet, so I thought I would do so.

I am glad you found us, although I am sorry that it has to do with

IgA. Your labs seem to look very good though, especially for

starting out early in the game, although the prednisone will work

well to take down that 10 grams you are spilling a day. I

definitely did not have a creatinine of 1.2 when I started out, but

I found out about my IgA too late. The plan that your neph has you

on seems to be pretty standard--I was on Cytoxan for about 5 months,

but mine was intravenous, since my form of the disease is rapidly

progressive. I hope it all works out for you...and welcome to the

site once again!

>

> Gen:

>

> Your spirit and outlook are the best thing that you have going for

you. I

> was diagnosed in early December 2000, and went through a rough

patch,

> primarily because of reaction to all of the drugs that they gave

me. After

> recovering from that, I have felt better and better every day. 3

years

> later, and I am back doing the things I love. Unless I tell

somebody about

> my situation, they wouldn't know. My friends who saw me so sick

still can't

> believe how good I look in comparison to my lowest point. My

kidney

> function is staying relatively stable, and I feel that with the

proper care,

> I should be able to maximize the amount of time I have with my own

> functioning kidneys.

>

> I'm married, so I can't give you advice on the guy that you just

started

> seeing. Try making it clear to him that there's really no major

change --

> just that you have to take some medicine from time to time. If he

is truly

> interested, I would hope that he would be supportive.

>

> Your extended family and friends should be your closest support.

We'll be

> here to help answer questions as you need some information -- I

know that

> this group was incredibly important to me. I would have gone

crazy if I

> didn't have people that had already gone through this provide the

kind of

> assistance this group is capable of.

>

> Good luck.

>

> By the way, Tahoe is one of my favorite places to ski. I haven't

been back

> there since getting sick, but I have been to Utah once or twice!

>

> Walt

>

>

> _____

>

> From: Genevieve Bookwalter [mailto:gbookwalter@u...]

> Sent: Friday, March 05, 2004 1:20 AM

> To: iga-nephropathy

> Subject: Re: another newcomer

>

>

> Hello out there,

>

> My name is Genevieve and I've been reading your postings for the

past few

> days, as I was just diagosed Tuesday with IgaN as well. My biopsy

was last

> Thursday, and tomorrow is my first appointment since the

nephrologist

> called to tell me the news. Anyway, I was really impressed with how

> supportive, encouraging and upbeat everyone seems so I thought I'd

write in

> myself. I'm 27, and I work as a journalist in the Sierra Nevada

foothills of

> California near Yosemite National Park. It's a blast, I love it.

This

> disease, however, has put a damper on things. I'm pretty nervous

about

> it...especially the drugs. The doc told me he was going to put me

on

> prednisone and cytoxin for a while, then after a few months switch

the

> cytoxin to imuran...what do you guys think of those? I've been on

prednisone

> before for poison oak and swelled up like the marshmellow

man...but the doc

> swears if I only take it every other day, like he's going to

prescribe, I

> shouldn't have that problem. My family back in Illinois is

freaking out, I

> think my mother is armed with a scalpel, ready to stockpile all my

> relatives' kidneys in the freezer should I need a new one...but I'm

> concerned with more day to day questions, like will I still be

able to go

> out drinking with my friends, will I still fit into my new jeans,

and will

> the guy I just started seeing jump ship because of all this.

>

> The biggest things I have going for me now are a very large, very

close

> extended family and a tight group of friends that keeps me

laughing. As one

> of my buddies said, " At least it's not NECROpathy. Then you'd be

dead! " Sick

> sense of humor, but it makes me smile!

>

> Thanks to whoever posted the list of questions, I saw them online

yesterday

> and plan on taking them to my appointment tomorrow. And thanks for

letting

> me tune in the past few days before I had the guts to write

something

> myself. I hope everyone's doing well--

>

> take care

> gen

>

>

>

>

>

> 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]

Hi Gen

I hadn't extended a welcome to you yet, so I thought I would do so.

I am glad you found us, although I am sorry that it has to do with

IgA. Your labs seem to look very good though, especially for

starting out early in the game, although the prednisone will work

well to take down that 10 grams you are spilling a day. I

definitely did not have a creatinine of 1.2 when I started out, but

I found out about my IgA too late. The plan that your neph has you

on seems to be pretty standard--I was on Cytoxan for about 5 months,

but mine was intravenous, since my form of the disease is rapidly

progressive. I hope it all works out for you...and welcome to the

site once again!

>

> Gen:

>

> Your spirit and outlook are the best thing that you have going for

you. I

> was diagnosed in early December 2000, and went through a rough

patch,

> primarily because of reaction to all of the drugs that they gave

me. After

> recovering from that, I have felt better and better every day. 3

years

> later, and I am back doing the things I love. Unless I tell

somebody about

> my situation, they wouldn't know. My friends who saw me so sick

still can't

> believe how good I look in comparison to my lowest point. My

kidney

> function is staying relatively stable, and I feel that with the

proper care,

> I should be able to maximize the amount of time I have with my own

> functioning kidneys.

>

> I'm married, so I can't give you advice on the guy that you just

started

> seeing. Try making it clear to him that there's really no major

change --

> just that you have to take some medicine from time to time. If he

is truly

> interested, I would hope that he would be supportive.

>

> Your extended family and friends should be your closest support.

We'll be

> here to help answer questions as you need some information -- I

know that

> this group was incredibly important to me. I would have gone

crazy if I

> didn't have people that had already gone through this provide the

kind of

> assistance this group is capable of.

>

> Good luck.

>

> By the way, Tahoe is one of my favorite places to ski. I haven't

been back

> there since getting sick, but I have been to Utah once or twice!

>

> Walt

>

>

> _____

>

> From: Genevieve Bookwalter [mailto:gbookwalter@u...]

> Sent: Friday, March 05, 2004 1:20 AM

> To: iga-nephropathy

> Subject: Re: another newcomer

>

>

> Hello out there,

>

> My name is Genevieve and I've been reading your postings for the

past few

> days, as I was just diagosed Tuesday with IgaN as well. My biopsy

was last

> Thursday, and tomorrow is my first appointment since the

nephrologist

> called to tell me the news. Anyway, I was really impressed with how

> supportive, encouraging and upbeat everyone seems so I thought I'd

write in

> myself. I'm 27, and I work as a journalist in the Sierra Nevada

foothills of

> California near Yosemite National Park. It's a blast, I love it.

This

> disease, however, has put a damper on things. I'm pretty nervous

about

> it...especially the drugs. The doc told me he was going to put me

on

> prednisone and cytoxin for a while, then after a few months switch

the

> cytoxin to imuran...what do you guys think of those? I've been on

prednisone

> before for poison oak and swelled up like the marshmellow

man...but the doc

> swears if I only take it every other day, like he's going to

prescribe, I

> shouldn't have that problem. My family back in Illinois is

freaking out, I

> think my mother is armed with a scalpel, ready to stockpile all my

> relatives' kidneys in the freezer should I need a new one...but I'm

> concerned with more day to day questions, like will I still be

able to go

> out drinking with my friends, will I still fit into my new jeans,

and will

> the guy I just started seeing jump ship because of all this.

>

> The biggest things I have going for me now are a very large, very

close

> extended family and a tight group of friends that keeps me

laughing. As one

> of my buddies said, " At least it's not NECROpathy. Then you'd be

dead! " Sick

> sense of humor, but it makes me smile!

>

> Thanks to whoever posted the list of questions, I saw them online

yesterday

> and plan on taking them to my appointment tomorrow. And thanks for

letting

> me tune in the past few days before I had the guts to write

something

> myself. I hope everyone's doing well--

>

> take care

> gen

>

>

>

>

>

> 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]

Hi Gen

I hadn't extended a welcome to you yet, so I thought I would do so.

I am glad you found us, although I am sorry that it has to do with

IgA. Your labs seem to look very good though, especially for

starting out early in the game, although the prednisone will work

well to take down that 10 grams you are spilling a day. I

definitely did not have a creatinine of 1.2 when I started out, but

I found out about my IgA too late. The plan that your neph has you

on seems to be pretty standard--I was on Cytoxan for about 5 months,

but mine was intravenous, since my form of the disease is rapidly

progressive. I hope it all works out for you...and welcome to the

site once again!

>

> Gen:

>

> Your spirit and outlook are the best thing that you have going for

you. I

> was diagnosed in early December 2000, and went through a rough

patch,

> primarily because of reaction to all of the drugs that they gave

me. After

> recovering from that, I have felt better and better every day. 3

years

> later, and I am back doing the things I love. Unless I tell

somebody about

> my situation, they wouldn't know. My friends who saw me so sick

still can't

> believe how good I look in comparison to my lowest point. My

kidney

> function is staying relatively stable, and I feel that with the

proper care,

> I should be able to maximize the amount of time I have with my own

> functioning kidneys.

>

> I'm married, so I can't give you advice on the guy that you just

started

> seeing. Try making it clear to him that there's really no major

change --

> just that you have to take some medicine from time to time. If he

is truly

> interested, I would hope that he would be supportive.

>

> Your extended family and friends should be your closest support.

We'll be

> here to help answer questions as you need some information -- I

know that

> this group was incredibly important to me. I would have gone

crazy if I

> didn't have people that had already gone through this provide the

kind of

> assistance this group is capable of.

>

> Good luck.

>

> By the way, Tahoe is one of my favorite places to ski. I haven't

been back

> there since getting sick, but I have been to Utah once or twice!

>

> Walt

>

>

> _____

>

> From: Genevieve Bookwalter [mailto:gbookwalter@u...]

> Sent: Friday, March 05, 2004 1:20 AM

> To: iga-nephropathy

> Subject: Re: another newcomer

>

>

> Hello out there,

>

> My name is Genevieve and I've been reading your postings for the

past few

> days, as I was just diagosed Tuesday with IgaN as well. My biopsy

was last

> Thursday, and tomorrow is my first appointment since the

nephrologist

> called to tell me the news. Anyway, I was really impressed with how

> supportive, encouraging and upbeat everyone seems so I thought I'd

write in

> myself. I'm 27, and I work as a journalist in the Sierra Nevada

foothills of

> California near Yosemite National Park. It's a blast, I love it.

This

> disease, however, has put a damper on things. I'm pretty nervous

about

> it...especially the drugs. The doc told me he was going to put me

on

> prednisone and cytoxin for a while, then after a few months switch

the

> cytoxin to imuran...what do you guys think of those? I've been on

prednisone

> before for poison oak and swelled up like the marshmellow

man...but the doc

> swears if I only take it every other day, like he's going to

prescribe, I

> shouldn't have that problem. My family back in Illinois is

freaking out, I

> think my mother is armed with a scalpel, ready to stockpile all my

> relatives' kidneys in the freezer should I need a new one...but I'm

> concerned with more day to day questions, like will I still be

able to go

> out drinking with my friends, will I still fit into my new jeans,

and will

> the guy I just started seeing jump ship because of all this.

>

> The biggest things I have going for me now are a very large, very

close

> extended family and a tight group of friends that keeps me

laughing. As one

> of my buddies said, " At least it's not NECROpathy. Then you'd be

dead! " Sick

> sense of humor, but it makes me smile!

>

> Thanks to whoever posted the list of questions, I saw them online

yesterday

> and plan on taking them to my appointment tomorrow. And thanks for

letting

> me tune in the past few days before I had the guts to write

something

> myself. I hope everyone's doing well--

>

> take care

> gen

>

>

>

>

>

> 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]

Gen:

I think you may have meant you were leaking 1g or 10mg of protein. I think

if you were leaking 10g of protein, you would be in pretty bad shape. This

number is kind of interesting, because most cellcept trials won't even take

if you are leaking less than 500 mg, because they really can't measure less

than that to see if there is improvement. If you really are leaking 10 g,

you might want to have a followup with your nephrologist.

Creatine clearance is different than serum creatinine. I'm not up on the

complete story of the two numbers, but suffice it to say that it is somewhat

a measure of how well your kidneys are working. I'm at a 4.1, but I'm also

a big guy, so I can tolerate a much higher number.

As for IGaN's effect on my skiing, the hardest thing is the difficulty that

I have breathing at high altitudes. Part of the reason for this is that I

am somewhat anemic (and require Epogen to keep up my blood levels). I had a

very hard time in Snowbird last April, I find that I just don't have the

energy that I used to. But you're younger, and you are living at higher

alititudes anyhow, so more than likely, it should have less of an effect on

you! I find that I have little trouble on the sea-level mountains that we

have out here on the East Coast...

Walt

_____

From: Genevieve Bookwalter

Sent: Saturday, March 06, 2004 2:49 PM

To: iga-nephropathy

Subject: Re: another newcomer

Hello everyone...

Thank you all SO much for your encouragement! Yes, where I live is quite

beautiful...I'm also fortunate that my job for the local paper requires me

to write stories about rivers, wildfires, Yosemite...I can't complain much

at all! I wish I could somehow localize a story about IgAN...I feel like I

have a second job trying to learn as much as I can about this newfound

disease. I also wish I had paid more attention in physiology class!

So I went to the doctor yesterday, and while I will be ingesting a new and

exciting daily concoction of chemicals (before this I could barely remember

to take my vitamins) there was some positive news as well. I'm very

fortunate that my general practitioner didn't dismiss my high blood pressure

as " white coat hypertension " last fall and began ordering blood tests, as it

seems they've caught this early. My creatine clearance is 1.2, or 70 ml/min,

which the neph said means I still have almost all my kidney function (On a

side note, could anyone PLEASE provide, or send me to a web page with, a

quick primer on what the heck creatine clearance is and signifies?? My

doctor explained it to me and I thought I understood it at the time, but now

that I " m home I'm confused again....). However, I'm leaking about 10 g of

protein. So he put me on 80 mg prednisone every other day, 160 mg Diavan

every day, I think 60 mg cytoxan every day, and 1000 mg fish oil every day.

What do you think? Should I get a second opinion, or just go with this right

now? From what I've read it sounds like a pretty standard first attack...

-- where in Northern California do you live? Are you in the Bay Area?

Who/where is your nephrologist? I live in Sonora and I'm going to Dr.

Golden in Modesto...I like him so far.

Walt -- yep, Tahoe rocks! I'm an avid snowboarder myself. I rode Brighton in

Utah a few years ago, that was awesome too. I hope this disease doesn't

dampen your downhill adventures too much!

Thank you all again for your help and kind words. I hope everything's going

well--

gen

on 3/5/04 8:22 PM, Walter Crosby at wcrosby@... wrote:

Gen:

Your spirit and outlook are the best thing that you have going for you. I

was diagnosed in early December 2000, and went through a rough patch,

primarily because of reaction to all of the drugs that they gave me. After

recovering from that, I have felt better and better every day. 3 years

later, and I am back doing the things I love. Unless I tell somebody about

my situation, they wouldn't know. My friends who saw me so sick still can't

believe how good I look in comparison to my lowest point. My kidney

function is staying relatively stable, and I feel that with the proper care,

I should be able to maximize the amount of time I have with my own

functioning kidneys.

I'm married, so I can't give you advice on the guy that you just started

seeing. Try making it clear to him that there's really no major change --

just that you have to take some medicine from time to time. If he is truly

interested, I would hope that he would be supportive.

Your extended family and friends should be your closest support. We'll be

here to help answer questions as you need some information -- I know that

this group was incredibly important to me. I would have gone crazy if I

didn't have people that had already gone through this provide the kind of

assistance this group is capable of.

Good luck.

By the way, Tahoe is one of my favorite places to ski. I haven't been back

there since getting sick, but I have been to Utah once or twice!

Walt

_____

From: Genevieve Bookwalter

Sent: Friday, March 05, 2004 1:20 AM

To: iga-nephropathy

Subject: Re: another newcomer

Hello out there,

My name is Genevieve and I've been reading your postings for the past few

days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

Thursday, and tomorrow is my first appointment since the nephrologist

called to tell me the news. Anyway, I was really impressed with how

supportive, encouraging and upbeat everyone seems so I thought I'd write in

myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills of

California near Yosemite National Park. It's a blast, I love it. This

disease, however, has put a damper on things. I'm pretty nervous about

it...especially the drugs. The doc told me he was going to put me on

prednisone and cytoxin for a while, then after a few months switch the

cytoxin to imuran...what do you guys think of those? I've been on prednisone

before for poison oak and swelled up like the marshmellow man...but the doc

swears if I only take it every other day, like he's going to prescribe, I

shouldn't have that problem. My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one...but I'm

concerned with more day to day questions, like will I still be able to go

out drinking with my friends, will I still fit into my new jeans, and will

the guy I just started seeing jump ship because of all this.

The biggest things I have going for me now are a very large, very close

extended family and a tight group of friends that keeps me laughing. As one

of my buddies said, " At least it's not NECROpathy. Then you'd be dead! " Sick

sense of humor, but it makes me smile!

Thanks to whoever posted the list of questions, I saw them online yesterday

and plan on taking them to my appointment tomorrow. And thanks for letting

me tune in the past few days before I had the guts to write something

myself. I hope everyone's doing well--

take care

gen

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]

Gen:

I think you may have meant you were leaking 1g or 10mg of protein. I think

if you were leaking 10g of protein, you would be in pretty bad shape. This

number is kind of interesting, because most cellcept trials won't even take

if you are leaking less than 500 mg, because they really can't measure less

than that to see if there is improvement. If you really are leaking 10 g,

you might want to have a followup with your nephrologist.

Creatine clearance is different than serum creatinine. I'm not up on the

complete story of the two numbers, but suffice it to say that it is somewhat

a measure of how well your kidneys are working. I'm at a 4.1, but I'm also

a big guy, so I can tolerate a much higher number.

As for IGaN's effect on my skiing, the hardest thing is the difficulty that

I have breathing at high altitudes. Part of the reason for this is that I

am somewhat anemic (and require Epogen to keep up my blood levels). I had a

very hard time in Snowbird last April, I find that I just don't have the

energy that I used to. But you're younger, and you are living at higher

alititudes anyhow, so more than likely, it should have less of an effect on

you! I find that I have little trouble on the sea-level mountains that we

have out here on the East Coast...

Walt

_____

From: Genevieve Bookwalter

Sent: Saturday, March 06, 2004 2:49 PM

To: iga-nephropathy

Subject: Re: another newcomer

Hello everyone...

Thank you all SO much for your encouragement! Yes, where I live is quite

beautiful...I'm also fortunate that my job for the local paper requires me

to write stories about rivers, wildfires, Yosemite...I can't complain much

at all! I wish I could somehow localize a story about IgAN...I feel like I

have a second job trying to learn as much as I can about this newfound

disease. I also wish I had paid more attention in physiology class!

So I went to the doctor yesterday, and while I will be ingesting a new and

exciting daily concoction of chemicals (before this I could barely remember

to take my vitamins) there was some positive news as well. I'm very

fortunate that my general practitioner didn't dismiss my high blood pressure

as " white coat hypertension " last fall and began ordering blood tests, as it

seems they've caught this early. My creatine clearance is 1.2, or 70 ml/min,

which the neph said means I still have almost all my kidney function (On a

side note, could anyone PLEASE provide, or send me to a web page with, a

quick primer on what the heck creatine clearance is and signifies?? My

doctor explained it to me and I thought I understood it at the time, but now

that I " m home I'm confused again....). However, I'm leaking about 10 g of

protein. So he put me on 80 mg prednisone every other day, 160 mg Diavan

every day, I think 60 mg cytoxan every day, and 1000 mg fish oil every day.

What do you think? Should I get a second opinion, or just go with this right

now? From what I've read it sounds like a pretty standard first attack...

-- where in Northern California do you live? Are you in the Bay Area?

Who/where is your nephrologist? I live in Sonora and I'm going to Dr.

Golden in Modesto...I like him so far.

Walt -- yep, Tahoe rocks! I'm an avid snowboarder myself. I rode Brighton in

Utah a few years ago, that was awesome too. I hope this disease doesn't

dampen your downhill adventures too much!

Thank you all again for your help and kind words. I hope everything's going

well--

gen

on 3/5/04 8:22 PM, Walter Crosby at wcrosby@... wrote:

Gen:

Your spirit and outlook are the best thing that you have going for you. I

was diagnosed in early December 2000, and went through a rough patch,

primarily because of reaction to all of the drugs that they gave me. After

recovering from that, I have felt better and better every day. 3 years

later, and I am back doing the things I love. Unless I tell somebody about

my situation, they wouldn't know. My friends who saw me so sick still can't

believe how good I look in comparison to my lowest point. My kidney

function is staying relatively stable, and I feel that with the proper care,

I should be able to maximize the amount of time I have with my own

functioning kidneys.

I'm married, so I can't give you advice on the guy that you just started

seeing. Try making it clear to him that there's really no major change --

just that you have to take some medicine from time to time. If he is truly

interested, I would hope that he would be supportive.

Your extended family and friends should be your closest support. We'll be

here to help answer questions as you need some information -- I know that

this group was incredibly important to me. I would have gone crazy if I

didn't have people that had already gone through this provide the kind of

assistance this group is capable of.

Good luck.

By the way, Tahoe is one of my favorite places to ski. I haven't been back

there since getting sick, but I have been to Utah once or twice!

Walt

_____

From: Genevieve Bookwalter

Sent: Friday, March 05, 2004 1:20 AM

To: iga-nephropathy

Subject: Re: another newcomer

Hello out there,

My name is Genevieve and I've been reading your postings for the past few

days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

Thursday, and tomorrow is my first appointment since the nephrologist

called to tell me the news. Anyway, I was really impressed with how

supportive, encouraging and upbeat everyone seems so I thought I'd write in

myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills of

California near Yosemite National Park. It's a blast, I love it. This

disease, however, has put a damper on things. I'm pretty nervous about

it...especially the drugs. The doc told me he was going to put me on

prednisone and cytoxin for a while, then after a few months switch the

cytoxin to imuran...what do you guys think of those? I've been on prednisone

before for poison oak and swelled up like the marshmellow man...but the doc

swears if I only take it every other day, like he's going to prescribe, I

shouldn't have that problem. My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one...but I'm

concerned with more day to day questions, like will I still be able to go

out drinking with my friends, will I still fit into my new jeans, and will

the guy I just started seeing jump ship because of all this.

The biggest things I have going for me now are a very large, very close

extended family and a tight group of friends that keeps me laughing. As one

of my buddies said, " At least it's not NECROpathy. Then you'd be dead! " Sick

sense of humor, but it makes me smile!

Thanks to whoever posted the list of questions, I saw them online yesterday

and plan on taking them to my appointment tomorrow. And thanks for letting

me tune in the past few days before I had the guts to write something

myself. I hope everyone's doing well--

take care

gen

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]

Gen:

I think you may have meant you were leaking 1g or 10mg of protein. I think

if you were leaking 10g of protein, you would be in pretty bad shape. This

number is kind of interesting, because most cellcept trials won't even take

if you are leaking less than 500 mg, because they really can't measure less

than that to see if there is improvement. If you really are leaking 10 g,

you might want to have a followup with your nephrologist.

Creatine clearance is different than serum creatinine. I'm not up on the

complete story of the two numbers, but suffice it to say that it is somewhat

a measure of how well your kidneys are working. I'm at a 4.1, but I'm also

a big guy, so I can tolerate a much higher number.

As for IGaN's effect on my skiing, the hardest thing is the difficulty that

I have breathing at high altitudes. Part of the reason for this is that I

am somewhat anemic (and require Epogen to keep up my blood levels). I had a

very hard time in Snowbird last April, I find that I just don't have the

energy that I used to. But you're younger, and you are living at higher

alititudes anyhow, so more than likely, it should have less of an effect on

you! I find that I have little trouble on the sea-level mountains that we

have out here on the East Coast...

Walt

_____

From: Genevieve Bookwalter

Sent: Saturday, March 06, 2004 2:49 PM

To: iga-nephropathy

Subject: Re: another newcomer

Hello everyone...

Thank you all SO much for your encouragement! Yes, where I live is quite

beautiful...I'm also fortunate that my job for the local paper requires me

to write stories about rivers, wildfires, Yosemite...I can't complain much

at all! I wish I could somehow localize a story about IgAN...I feel like I

have a second job trying to learn as much as I can about this newfound

disease. I also wish I had paid more attention in physiology class!

So I went to the doctor yesterday, and while I will be ingesting a new and

exciting daily concoction of chemicals (before this I could barely remember

to take my vitamins) there was some positive news as well. I'm very

fortunate that my general practitioner didn't dismiss my high blood pressure

as " white coat hypertension " last fall and began ordering blood tests, as it

seems they've caught this early. My creatine clearance is 1.2, or 70 ml/min,

which the neph said means I still have almost all my kidney function (On a

side note, could anyone PLEASE provide, or send me to a web page with, a

quick primer on what the heck creatine clearance is and signifies?? My

doctor explained it to me and I thought I understood it at the time, but now

that I " m home I'm confused again....). However, I'm leaking about 10 g of

protein. So he put me on 80 mg prednisone every other day, 160 mg Diavan

every day, I think 60 mg cytoxan every day, and 1000 mg fish oil every day.

What do you think? Should I get a second opinion, or just go with this right

now? From what I've read it sounds like a pretty standard first attack...

-- where in Northern California do you live? Are you in the Bay Area?

Who/where is your nephrologist? I live in Sonora and I'm going to Dr.

Golden in Modesto...I like him so far.

Walt -- yep, Tahoe rocks! I'm an avid snowboarder myself. I rode Brighton in

Utah a few years ago, that was awesome too. I hope this disease doesn't

dampen your downhill adventures too much!

Thank you all again for your help and kind words. I hope everything's going

well--

gen

on 3/5/04 8:22 PM, Walter Crosby at wcrosby@... wrote:

Gen:

Your spirit and outlook are the best thing that you have going for you. I

was diagnosed in early December 2000, and went through a rough patch,

primarily because of reaction to all of the drugs that they gave me. After

recovering from that, I have felt better and better every day. 3 years

later, and I am back doing the things I love. Unless I tell somebody about

my situation, they wouldn't know. My friends who saw me so sick still can't

believe how good I look in comparison to my lowest point. My kidney

function is staying relatively stable, and I feel that with the proper care,

I should be able to maximize the amount of time I have with my own

functioning kidneys.

I'm married, so I can't give you advice on the guy that you just started

seeing. Try making it clear to him that there's really no major change --

just that you have to take some medicine from time to time. If he is truly

interested, I would hope that he would be supportive.

Your extended family and friends should be your closest support. We'll be

here to help answer questions as you need some information -- I know that

this group was incredibly important to me. I would have gone crazy if I

didn't have people that had already gone through this provide the kind of

assistance this group is capable of.

Good luck.

By the way, Tahoe is one of my favorite places to ski. I haven't been back

there since getting sick, but I have been to Utah once or twice!

Walt

_____

From: Genevieve Bookwalter

Sent: Friday, March 05, 2004 1:20 AM

To: iga-nephropathy

Subject: Re: another newcomer

Hello out there,

My name is Genevieve and I've been reading your postings for the past few

days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

Thursday, and tomorrow is my first appointment since the nephrologist

called to tell me the news. Anyway, I was really impressed with how

supportive, encouraging and upbeat everyone seems so I thought I'd write in

myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills of

California near Yosemite National Park. It's a blast, I love it. This

disease, however, has put a damper on things. I'm pretty nervous about

it...especially the drugs. The doc told me he was going to put me on

prednisone and cytoxin for a while, then after a few months switch the

cytoxin to imuran...what do you guys think of those? I've been on prednisone

before for poison oak and swelled up like the marshmellow man...but the doc

swears if I only take it every other day, like he's going to prescribe, I

shouldn't have that problem. My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one...but I'm

concerned with more day to day questions, like will I still be able to go

out drinking with my friends, will I still fit into my new jeans, and will

the guy I just started seeing jump ship because of all this.

The biggest things I have going for me now are a very large, very close

extended family and a tight group of friends that keeps me laughing. As one

of my buddies said, " At least it's not NECROpathy. Then you'd be dead! " Sick

sense of humor, but it makes me smile!

Thanks to whoever posted the list of questions, I saw them online yesterday

and plan on taking them to my appointment tomorrow. And thanks for letting

me tune in the past few days before I had the guts to write something

myself. I hope everyone's doing well--

take care

gen

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[Guest guest]

HI Gen,

I am glad you were able to get away for a couple of days and relax while you

were starting your treatment. I am relieved that the cytoxan isn't upsetting

your system too much, but I hope the Prednisone does not continue to keep you

up at night. Getting adequate rest is really so important!

On your question of diet, it really is imperative that your Nephrologist

advise you on diet. They must be highly individualized according to your

particular lab results. For some, we are on protein restrictions, for others

restrictions on potassium and/or phosphorus, but it really depends on if you are

running high or low on those levels. About the only really common thing is

watching sodium, the rest your doctor will have to advise you on.

In a message dated 3/9/2004 8:57:33 AM Pacific Standard Time,

gbookwalter@... writes:

> would anyone mind passing on

> their diet recommendations or good websites on what to eat with this

> disease?

[Guest guest]

HI Gen,

I am glad you were able to get away for a couple of days and relax while you

were starting your treatment. I am relieved that the cytoxan isn't upsetting

your system too much, but I hope the Prednisone does not continue to keep you

up at night. Getting adequate rest is really so important!

On your question of diet, it really is imperative that your Nephrologist

advise you on diet. They must be highly individualized according to your

particular lab results. For some, we are on protein restrictions, for others

restrictions on potassium and/or phosphorus, but it really depends on if you are

running high or low on those levels. About the only really common thing is

watching sodium, the rest your doctor will have to advise you on.

In a message dated 3/9/2004 8:57:33 AM Pacific Standard Time,

gbookwalter@... writes:

> would anyone mind passing on

> their diet recommendations or good websites on what to eat with this

> disease?