Re: [igan]another newcomer

[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]

Hello everyone,

I just wanted to thank you all SO MUCH for all your answers and warm wishes!

I skipped town with friends for a couple days to clear my head, which was

quite nice after all my news last week. whew! Yes, I am spilling 10 g of

protein...I didn't realise that was a lot until I started reading everyone

else's numbers...now I guess I understand why I'm on the cytoxin. My body

seems to be handling it well so far...a bit of an upset stomach but no

vomiting or anything like that. I think the prednisone is bothering me

more...as it keeps me up all hours of the night. Where was this stuff when I

was in college?!

Thanks for the explanations on creatinine and creatinine clearance. It

cleared a lot of things up for me. After reading the posts since I've gotten

back, especially on snacks, I'm wondering -- would anyone mind passing on

their diet recommendations or good websites on what to eat with this

disease? I already eat pretty well, but there's little things I never would

have guessed need to be cut from my diet...like tomato soup! That stuff has

so much salt if I bathed in it I would float. Who knew.

Thanks again, I hope everyone's doing well out there!

take care,

gen

on 3/6/04 8:15 PM, Walter Crosby at wcrosby@... wrote:

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]

Hello everyone,

I just wanted to thank you all SO MUCH for all your answers and warm wishes!

I skipped town with friends for a couple days to clear my head, which was

quite nice after all my news last week. whew! Yes, I am spilling 10 g of

protein...I didn't realise that was a lot until I started reading everyone

else's numbers...now I guess I understand why I'm on the cytoxin. My body

seems to be handling it well so far...a bit of an upset stomach but no

vomiting or anything like that. I think the prednisone is bothering me

more...as it keeps me up all hours of the night. Where was this stuff when I

was in college?!

Thanks for the explanations on creatinine and creatinine clearance. It

cleared a lot of things up for me. After reading the posts since I've gotten

back, especially on snacks, I'm wondering -- would anyone mind passing on

their diet recommendations or good websites on what to eat with this

disease? I already eat pretty well, but there's little things I never would

have guessed need to be cut from my diet...like tomato soup! That stuff has

so much salt if I bathed in it I would float. Who knew.

Thanks again, I hope everyone's doing well out there!

take care,

gen

on 3/6/04 8:15 PM, Walter Crosby at wcrosby@... wrote:

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]

Hello everyone,

I just wanted to thank you all SO MUCH for all your answers and warm wishes!

I skipped town with friends for a couple days to clear my head, which was

quite nice after all my news last week. whew! Yes, I am spilling 10 g of

protein...I didn't realise that was a lot until I started reading everyone

else's numbers...now I guess I understand why I'm on the cytoxin. My body

seems to be handling it well so far...a bit of an upset stomach but no

vomiting or anything like that. I think the prednisone is bothering me

more...as it keeps me up all hours of the night. Where was this stuff when I

was in college?!

Thanks for the explanations on creatinine and creatinine clearance. It

cleared a lot of things up for me. After reading the posts since I've gotten

back, especially on snacks, I'm wondering -- would anyone mind passing on

their diet recommendations or good websites on what to eat with this

disease? I already eat pretty well, but there's little things I never would

have guessed need to be cut from my diet...like tomato soup! That stuff has

so much salt if I bathed in it I would float. Who knew.

Thanks again, I hope everyone's doing well out there!

take care,

gen

on 3/6/04 8:15 PM, Walter Crosby at wcrosby@... wrote:

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 you should talk to a renal dietician regarding diet. There is no one

diet that will fit everyone with IgA. Some of us just need low salt, some

low salt/low protein, some are restricted from potassium and phosphorus,

some aren't...etc. Your best bet for your best health is to talk to a

dietician and go from there. My neph normally doesn't recommend people to a

dietician until they are much closer to dialysis or transplant than I was

but I pushed for it and he gave me the referral. I only went to her twice

and have called her a few times to tweak things. Once she got my diet

worked out for me I did start to feel much better on a daily basis. Which

makes me really wonder why we aren't referred to a dietician earlier on with

this disease.

The diet recommendations on the web or even in books you can pick up are

confusing and you can get very worked up over info that might not even be

right for your situation. It all depends on your lab values.

Amy

[Guest guest]

Gen you should talk to a renal dietician regarding diet. There is no one

diet that will fit everyone with IgA. Some of us just need low salt, some

low salt/low protein, some are restricted from potassium and phosphorus,

some aren't...etc. Your best bet for your best health is to talk to a

dietician and go from there. My neph normally doesn't recommend people to a

dietician until they are much closer to dialysis or transplant than I was

but I pushed for it and he gave me the referral. I only went to her twice

and have called her a few times to tweak things. Once she got my diet

worked out for me I did start to feel much better on a daily basis. Which

makes me really wonder why we aren't referred to a dietician earlier on with

this disease.

The diet recommendations on the web or even in books you can pick up are

confusing and you can get very worked up over info that might not even be

right for your situation. It all depends on your lab values.

Amy

[Guest guest]

Gen you should talk to a renal dietician regarding diet. There is no one

diet that will fit everyone with IgA. Some of us just need low salt, some

low salt/low protein, some are restricted from potassium and phosphorus,

some aren't...etc. Your best bet for your best health is to talk to a

dietician and go from there. My neph normally doesn't recommend people to a

dietician until they are much closer to dialysis or transplant than I was

but I pushed for it and he gave me the referral. I only went to her twice

and have called her a few times to tweak things. Once she got my diet

worked out for me I did start to feel much better on a daily basis. Which

makes me really wonder why we aren't referred to a dietician earlier on with

this disease.

The diet recommendations on the web or even in books you can pick up are

confusing and you can get very worked up over info that might not even be

right for your situation. It all depends on your lab values.

Amy

[Guest guest]

Great, thanks...all my doctor said I had to watch right now was the salt, to

keep my blood pressure under control. No salt shaker at the table, no

packaged foods like chips, but I can still use salt when cooking. This just

keeps getting interesting...I go back in three weeks, so I'll ask him some

more specific questions about what I should eat.

on 3/9/04 9:16 AM, Amy Griswold at purr-fect@... wrote:

Gen you should talk to a renal dietician regarding diet. There is no one

diet that will fit everyone with IgA. Some of us just need low salt, some

low salt/low protein, some are restricted from potassium and phosphorus,

some aren't...etc. Your best bet for your best health is to talk to a

dietician and go from there. My neph normally doesn't recommend people to a

dietician until they are much closer to dialysis or transplant than I was

but I pushed for it and he gave me the referral. I only went to her twice

and have called her a few times to tweak things. Once she got my diet

worked out for me I did start to feel much better on a daily basis. Which

makes me really wonder why we aren't referred to a dietician earlier on with

this disease.

The diet recommendations on the web or even in books you can pick up are

confusing and you can get very worked up over info that might not even be

right for your situation. It all depends on your lab values.

Amy

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