Re: new to the support group

[Guest guest]

Welcome the the group Jeimy.

Your numbers aren't too bad in terms of creatinine. Proteinuria is a little

high, but not dramatically. Have you been diagnosed by kidney biopsy?

Having 50% kidney function left by the time you're diagnosed is pretty

common, because often, nothing much happens to alert doctors until you've

lost that much.

You seem to have an early problem with blood pressure, and it's very, very

important to control that.

My symptoms started sometime in 1977-78, with microscopic blood and protein

in the urine. One started before the other, and I can't remember which now.

By 1993, I still had about 50% kidney function and high blood pressure

problems. My serum creatinine only very gradually increased, year after

year. I reached about 30% kidney function a year or so ago, so these things

can take a long time.

The problem of family not taking it too seriously is also common. In some

cases though, relatives take it too seriously, so it can go both ways.

If you take some time to read the back messages from the beginning of the

message archive, you will find that your experience is repeated time after

time by many other patients, and you will find a lot of very useful

information.

Are you taking anything else besides the lisinopril? Taking prednisone? A

lot of aches and pains are due more to medications than to the kidney

disease itself. Do you have a specific diet to follow, or were you just told

to cut back on salt and protein?

I know it's stressful after the initial shock of finding out you have a

kidney disease, but, you get used to it. I was in my early 20's when I first

found out. Now I'm 48, and still not on dialysis - although at this point,

my nephrologist has said I would probably be on it within 1 to 2 years. I've

only just recently been place officially on a prescribed renal diet. Never

had to follow any diet at all the entire time I've had IgAN before last

autumn. But of course, this is a very variable disease, so one person's

experience may not apply to another's.

Yes, you can certainly find support here, and you can post all the messages

you want. As I said before, it would probably be useful for you to get a

feel for it by reading some of the back messages (there are hundreds every

month, so it could take a while : )

Also, take a look that Files and Bookmark sections for some useful

information.

With IgAN, it's a little unusual for one kidney to be noticeably more

affected than the other one. This is why I asked about a biopsy. What other

tests have you had?

Pierre

new to the support group

> Hi, my name it's Jeimy. I'm 22 years old and six months ago I was

> diagnose with a chronic glomerulonephritis due to IgA nephropathy.

> I was in the United States Navy when I was diagnose, three months

> later I was discharge. I only had nine months left, but they decideted

> to do the discharge right away.

> When I was diagnose I Showed a 2+ proteinuria and 2+ blood on

> urinalysis and a 1.2 grams of protein per day, and also an elevated

> creatinine at 1.4.

> Do to this I developed High blood pressure 156/110. Now my BP is

> under control with Lisinopril. The goal is to have it under 130/80.

> Since that, my protein is increasing, the first time it when up to

> 1.4 grams per day, and the second time when up to 1.5 grams per day.

> Which is really scary for me, because I already have a 50% damage in

> my kidneys(my left kidney is more damage than my right kidney) and I

> have a high potential for end-stage renal failure.

> And I say scary because of the dialysis.

> My life have change a lot. Now I have a low protein no salt diet.

> Sometimes I have pain in my kidneys(like cramps, and I don't have

> kidney stones)that will make me cry, I feel tired(fatige) or the

> muscle pain I get for nothing, nausea(I know they say it's not

> relate) and of course when there is a bug around(flu or cold) I'm

> always the fist one to get sick.

> But the most difficult thing is the emotional pain I have.

> I don't get to go out with my friends and have fun(remember I'm 22

> yrs) I'm always the babysister for them. When we go out to restaurants

> I always end up eating a salad(trust me, when you have this diet,

> there is no much you can eat in a restaurant). My family don't really

> believe that this is something serious(because I'm not in a bed dying)

> And as much as I try to explain this to my boyfriend, He can't

> understand why someone who looks " ok " can be this sick.

> So, in others words, I'm dealing with this by myself. Unfortunately

> in the area where I live there is no support groups that can help me.

> Maybe someone here can help me a little bit with this; When I was

> told about this, I never thought that could be so streesful.

>

>

[Guest guest]

Hi Jeimy,

I want to encourage you to continue to go out and be alive. Kidney

disease is scary, but at least there are options and medicine. I had a

friend die of a brain tumor, and there were not so many options for him. I

try to put it in perspective.

I also encourage you to seek a good nephrologist. Your lab work can be

improved sometimes with good proactive medicine. Has your doctor talked to

you about fish oil?

Try to enjoy each day. If you don't feel well, get good movies or a

good book and rest. If you feel good go out and play. I don't want to

sound like it is easy, because I have had days that aren't, but it really it

better emotionally to seek to find joy in life.

God Bless,

K.

new to the support group

> Hi, my name it's Jeimy. I'm 22 years old and six months ago I was

> diagnose with a chronic glomerulonephritis due to IgA nephropathy.

> I was in the United States Navy when I was diagnose, three months

> later I was discharge. I only had nine months left, but they decideted

> to do the discharge right away.

> When I was diagnose I Showed a 2+ proteinuria and 2+ blood on

> urinalysis and a 1.2 grams of protein per day, and also an elevated

> creatinine at 1.4.

> Do to this I developed High blood pressure 156/110. Now my BP is

> under control with Lisinopril. The goal is to have it under 130/80.

> Since that, my protein is increasing, the first time it when up to

> 1.4 grams per day, and the second time when up to 1.5 grams per day.

> Which is really scary for me, because I already have a 50% damage in

> my kidneys(my left kidney is more damage than my right kidney) and I

> have a high potential for end-stage renal failure.

> And I say scary because of the dialysis.

> My life have change a lot. Now I have a low protein no salt diet.

> Sometimes I have pain in my kidneys(like cramps, and I don't have

> kidney stones)that will make me cry, I feel tired(fatige) or the

> muscle pain I get for nothing, nausea(I know they say it's not

> relate) and of course when there is a bug around(flu or cold) I'm

> always the fist one to get sick.

> But the most difficult thing is the emotional pain I have.

> I don't get to go out with my friends and have fun(remember I'm 22

> yrs) I'm always the babysister for them. When we go out to restaurants

> I always end up eating a salad(trust me, when you have this diet,

> there is no much you can eat in a restaurant). My family don't really

> believe that this is something serious(because I'm not in a bed dying)

> And as much as I try to explain this to my boyfriend, He can't

> understand why someone who looks " ok " can be this sick.

> So, in others words, I'm dealing with this by myself. Unfortunately

> in the area where I live there is no support groups that can help me.

> Maybe someone here can help me a little bit with this; When I was

> told about this, I never thought that could be so streesful.

>

>

>

>

>

>

>

[Guest guest]

Well, when I first got sick, they thought I had Lupus, After my first

kidney biopsy the findings were nonspecific, after the second biopsy

IgA deposits were found. They have done many things to me before been

diagnosed, ultrasounds, all kinds of blood test, scans(also a scan

that is done with nuclear medicine, I fortgot the name of it). Many

of this Labs were done more than twice. And then I was diagnose with

a chronic glomerylonephritis due to IgA nephropathy. My BP is due to

this problem and also is the biggest problem I have. It's hard to

control it. I tried many medications and so far the only one that

works is Lisinopril. Part of the many things I have to do is to check

the BP twice a day, every day! I have to see my doctor every two

months(specially because of the BP). They also check my heart a lot

because the BP can cause me seriuos complications in a furture,

usually when I go and see my doctor is an all day appoinment.

About the diet, the nutritionist with the doctor told me to cut all

salts from my diet, and about the protein, they cut some things

that are to high in protein(they don't really want me to the the 40mg

protein diet for now). About my pains it just started to happen last

month, and I already have an appoinment to see my doctor in a few

weeks.

Well thanks for your feedback, so far I haven't meet anyone who got

this problem in the early 20's like me, usually is people around

their 30's or 40's. The reason why I'm so worry about this is because

of my BP and the problems that is causing me. The doctor told me that

my BP can cause me more damage than the IgAN.

> Welcome the the group Jeimy.

>

> Your numbers aren't too bad in terms of creatinine. Proteinuria is

a little

> high, but not dramatically. Have you been diagnosed by kidney

biopsy?

>

> Having 50% kidney function left by the time you're diagnosed is

pretty

> common, because often, nothing much happens to alert doctors until

you've

> lost that much.

>

> You seem to have an early problem with blood pressure, and it's

very, very

> important to control that.

>

> My symptoms started sometime in 1977-78, with microscopic blood and

protein

> in the urine. One started before the other, and I can't remember

which now.

> By 1993, I still had about 50% kidney function and high blood

pressure

> problems. My serum creatinine only very gradually increased, year

after

> year. I reached about 30% kidney function a year or so ago, so

these things

> can take a long time.

>

> The problem of family not taking it too seriously is also common.

In some

> cases though, relatives take it too seriously, so it can go both

ways.

>

> If you take some time to read the back messages from the beginning

of the

> message archive, you will find that your experience is repeated

time after

> time by many other patients, and you will find a lot of very useful

> information.

>

> Are you taking anything else besides the lisinopril? Taking

prednisone? A

> lot of aches and pains are due more to medications than to the

kidney

> disease itself. Do you have a specific diet to follow, or were you

just told

> to cut back on salt and protein?

>

> I know it's stressful after the initial shock of finding out you

have a

> kidney disease, but, you get used to it. I was in my early 20's

when I first

> found out. Now I'm 48, and still not on dialysis - although at this

point,

> my nephrologist has said I would probably be on it within 1 to 2

years. I've

> only just recently been place officially on a prescribed renal

diet. Never

> had to follow any diet at all the entire time I've had IgAN before

last

> autumn. But of course, this is a very variable disease, so one

person's

> experience may not apply to another's.

>

> Yes, you can certainly find support here, and you can post all the

messages

> you want. As I said before, it would probably be useful for you to

get a

> feel for it by reading some of the back messages (there are

hundreds every

> month, so it could take a while : )

>

> Also, take a look that Files and Bookmark sections for some useful

> information.

>

> With IgAN, it's a little unusual for one kidney to be noticeably

more

> affected than the other one. This is why I asked about a biopsy.

What other

> tests have you had?

>

> Pierre

>

> new to the support group

>

>

> > Hi, my name it's Jeimy. I'm 22 years old and six months ago I was

> > diagnose with a chronic glomerulonephritis due to IgA nephropathy.

> > I was in the United States Navy when I was diagnose, three months

> > later I was discharge. I only had nine months left, but they

decideted

> > to do the discharge right away.

> > When I was diagnose I Showed a 2+ proteinuria and 2+ blood on

> > urinalysis and a 1.2 grams of protein per day, and also an

elevated

> > creatinine at 1.4.

> > Do to this I developed High blood pressure 156/110. Now my BP is

> > under control with Lisinopril. The goal is to have it under

130/80.

> > Since that, my protein is increasing, the first time it when up to

> > 1.4 grams per day, and the second time when up to 1.5 grams per

day.

> > Which is really scary for me, because I already have a 50% damage

in

> > my kidneys(my left kidney is more damage than my right kidney)

and I

> > have a high potential for end-stage renal failure.

> > And I say scary because of the dialysis.

> > My life have change a lot. Now I have a low protein no salt diet.

> > Sometimes I have pain in my kidneys(like cramps, and I don't have

> > kidney stones)that will make me cry, I feel tired(fatige) or the

> > muscle pain I get for nothing, nausea(I know they say it's not

> > relate) and of course when there is a bug around(flu or cold) I'm

> > always the fist one to get sick.

> > But the most difficult thing is the emotional pain I have.

> > I don't get to go out with my friends and have fun(remember I'm 22

> > yrs) I'm always the babysister for them. When we go out to

restaurants

> > I always end up eating a salad(trust me, when you have this diet,

> > there is no much you can eat in a restaurant). My family don't

really

> > believe that this is something serious(because I'm not in a bed

dying)

> > And as much as I try to explain this to my boyfriend, He can't

> > understand why someone who looks " ok " can be this sick.

> > So, in others words, I'm dealing with this by myself.

Unfortunately

> > in the area where I live there is no support groups that can help

me.

> > Maybe someone here can help me a little bit with this; When I was

> > told about this, I never thought that could be so streesful.

> >

> >

[Guest guest]

Thanks for you advice.

I do have a good nephrologist, he's been doing it for a good time and

he is always telling things that I can do to feel better.

The fish oil is part of my diet. I don't take it in capsules(I hear

is better natural), I buy the fish and I cook it. The only problem is

that I don't like fish that much, but I have to do it anyway.

Thanks for you feedback.

> Hi Jeimy,

> I want to encourage you to continue to go out and be alive.

Kidney

> disease is scary, but at least there are options and medicine. I

had a

> friend die of a brain tumor, and there were not so many options for

him. I

> try to put it in perspective.

> I also encourage you to seek a good nephrologist. Your lab

work can be

> improved sometimes with good proactive medicine. Has your doctor

talked to

> you about fish oil?

> Try to enjoy each day. If you don't feel well, get good movies

or a

> good book and rest. If you feel good go out and play. I don't

want to

> sound like it is easy, because I have had days that aren't, but it

really it

> better emotionally to seek to find joy in life.

>

> God Bless,

> K.

> new to the support group

>

>

> > Hi, my name it's Jeimy. I'm 22 years old and six months ago I was

> > diagnose with a chronic glomerulonephritis due to IgA nephropathy.

> > I was in the United States Navy when I was diagnose, three months

> > later I was discharge. I only had nine months left, but they

decideted

> > to do the discharge right away.

> > When I was diagnose I Showed a 2+ proteinuria and 2+ blood on

> > urinalysis and a 1.2 grams of protein per day, and also an

elevated

> > creatinine at 1.4.

> > Do to this I developed High blood pressure 156/110. Now my BP is

> > under control with Lisinopril. The goal is to have it under

130/80.

> > Since that, my protein is increasing, the first time it when up to

> > 1.4 grams per day, and the second time when up to 1.5 grams per

day.

> > Which is really scary for me, because I already have a 50% damage

in

> > my kidneys(my left kidney is more damage than my right kidney)

and I

> > have a high potential for end-stage renal failure.

> > And I say scary because of the dialysis.

> > My life have change a lot. Now I have a low protein no salt diet.

> > Sometimes I have pain in my kidneys(like cramps, and I don't have

> > kidney stones)that will make me cry, I feel tired(fatige) or the

> > muscle pain I get for nothing, nausea(I know they say it's not

> > relate) and of course when there is a bug around(flu or cold) I'm

> > always the fist one to get sick.

> > But the most difficult thing is the emotional pain I have.

> > I don't get to go out with my friends and have fun(remember I'm 22

> > yrs) I'm always the babysister for them. When we go out to

restaurants

> > I always end up eating a salad(trust me, when you have this diet,

> > there is no much you can eat in a restaurant). My family don't

really

> > believe that this is something serious(because I'm not in a bed

dying)

> > And as much as I try to explain this to my boyfriend, He can't

> > understand why someone who looks " ok " can be this sick.

> > So, in others words, I'm dealing with this by myself.

Unfortunately

> > in the area where I live there is no support groups that can help

me.

> > Maybe someone here can help me a little bit with this; When I was

> > told about this, I never thought that could be so streesful.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Jeimy.

Sounds like your in good hands. I agree that the high blood pressure itself

can be more damaging to the kidneys than the IgAN. At least, there's no

argument that it accelerates the damage. I've had very hard to control high

BP too. Lisinopril is a good drug, as are all the ACE inhibitors. Cutting

back on salt in cooking, table salt, and all processed foods should help

control your BP along with lisinopril. I'm sure you already know you can't

use salt substitutes like NoSalt, but there are many spices you can use,

plus commercial products like Mrs. Dash. One product that not too many

people know about is something called Vegit, available in health food

stores. It's on the Ok list for my renal diet, but I've been using it for 10

years. There's a certain kind of edible yeast in it that, unlike other salt

substitutes, actually has a salty taste (even though it contains no salt).

It tastes better on some things than others, but it's worth a try.

We actually have many members in the group whose IgAN started in their 20's.

Pierre

P.S. Exercise and relaxation (even meditation) actually helps with the blood

pressure.

Re: new to the support group

> Well, when I first got sick, they thought I had Lupus, After my first

> kidney biopsy the findings were nonspecific, after the second biopsy

> IgA deposits were found. They have done many things to me before been

> diagnosed, ultrasounds, all kinds of blood test, scans(also a scan

> that is done with nuclear medicine, I fortgot the name of it). Many

> of this Labs were done more than twice. And then I was diagnose with

> a chronic glomerylonephritis due to IgA nephropathy. My BP is due to

> this problem and also is the biggest problem I have. It's hard to

> control it. I tried many medications and so far the only one that

> works is Lisinopril. Part of the many things I have to do is to check

> the BP twice a day, every day! I have to see my doctor every two

> months(specially because of the BP). They also check my heart a lot

> because the BP can cause me seriuos complications in a furture,

> usually when I go and see my doctor is an all day appoinment.

> About the diet, the nutritionist with the doctor told me to cut all

> salts from my diet, and about the protein, they cut some things

> that are to high in protein(they don't really want me to the the 40mg

> protein diet for now). About my pains it just started to happen last

> month, and I already have an appoinment to see my doctor in a few

> weeks.

> Well thanks for your feedback, so far I haven't meet anyone who got

> this problem in the early 20's like me, usually is people around

> their 30's or 40's. The reason why I'm so worry about this is because

> of my BP and the problems that is causing me. The doctor told me that

> my BP can cause me more damage than the IgAN.

>

>

[Guest guest]

This isn't aimed at anyone in particular, but just as friendly advice. One

thing we have in common with just about everyone who has a chronic illness

is that we have to keep on guard for depression. Keeping as active as

possible helps. As the song says, accentuate the positive, decentuate the

negative : )

Pierre

Re: new to the support group

> Hi Jeimy,

> I want to encourage you to continue to go out and be alive. Kidney

> disease is scary, but at least there are options and medicine. I had a

> friend die of a brain tumor, and there were not so many options for him.

I

> try to put it in perspective.

> I also encourage you to seek a good nephrologist. Your lab work can

be

> improved sometimes with good proactive medicine. Has your doctor talked

to

> you about fish oil?

> Try to enjoy each day. If you don't feel well, get good movies or a

> good book and rest. If you feel good go out and play. I don't want to

> sound like it is easy, because I have had days that aren't, but it really

it

> better emotionally to seek to find joy in life.

>

> God Bless,

> K.

[Guest guest]

Hi Jeimy

Patients of any age can get IgA. I was a teenager when I was diagnosed via

biopsy, and just turned 37 (today actually). Although I am on a low sodium

/ low protein diet, and have symptoms of fatigue and occasional nausea, I'm

still going strong. Dialysis and / or transplant is probably in my future,

but I'll deal with that when the times comes.

My advise - don't live your life in a bubble because of your IgA. Do pretty

much what other 22 year olds do, keeping you BP in check, of course.

Good luck,

Curtis in Ontario, Canada

Re: new to the support group

(Snip>

Well thanks for your feedback, so far I haven't meet anyone who got

this problem in the early 20's like me, usually is people around

their 30's or 40's. The reason why I'm so worry about this is because

of my BP and the problems that is causing me. The doctor told me that

my BP can cause me more damage than the IgAN.

> Welcome the the group Jeimy.

>

> Your numbers aren't too bad in terms of creatinine. Proteinuria is

a little

> high, but not dramatically. Have you been diagnosed by kidney

biopsy?

>

> Having 50% kidney function left by the time you're diagnosed is

pretty

> common, because often, nothing much happens to alert doctors until

you've

> lost that much.

>

> You seem to have an early problem with blood pressure, and it's

very, very

> important to control that.

>

> My symptoms started sometime in 1977-78, with microscopic blood and

protein

> in the urine. One started before the other, and I can't remember

which now.

> By 1993, I still had about 50% kidney function and high blood

pressure

> problems. My serum creatinine only very gradually increased, year

after

> year. I reached about 30% kidney function a year or so ago, so

these things

> can take a long time.

>

> The problem of family not taking it too seriously is also common.

In some

> cases though, relatives take it too seriously, so it can go both

ways.

>

> If you take some time to read the back messages from the beginning

of the

> message archive, you will find that your experience is repeated

time after

> time by many other patients, and you will find a lot of very useful

> information.

>

> Are you taking anything else besides the lisinopril? Taking

prednisone? A

> lot of aches and pains are due more to medications than to the

kidney

> disease itself. Do you have a specific diet to follow, or were you

just told

> to cut back on salt and protein?

>

> I know it's stressful after the initial shock of finding out you

have a

> kidney disease, but, you get used to it. I was in my early 20's

when I first

> found out. Now I'm 48, and still not on dialysis - although at this

point,

> my nephrologist has said I would probably be on it within 1 to 2

years. I've

> only just recently been place officially on a prescribed renal

diet. Never

> had to follow any diet at all the entire time I've had IgAN before

last

> autumn. But of course, this is a very variable disease, so one

person's

> experience may not apply to another's.

>

> Yes, you can certainly find support here, and you can post all the

messages

> you want. As I said before, it would probably be useful for you to

get a

> feel for it by reading some of the back messages (there are

hundreds every

> month, so it could take a while : )

>

> Also, take a look that Files and Bookmark sections for some useful

> information.

>

> With IgAN, it's a little unusual for one kidney to be noticeably

more

> affected than the other one. This is why I asked about a biopsy.

What other

> tests have you had?

>

> Pierre

>

> new to the support group

>

>

> > Hi, my name it's Jeimy. I'm 22 years old and six months ago I was

> > diagnose with a chronic glomerulonephritis due to IgA nephropathy.

> > I was in the United States Navy when I was diagnose, three months

> > later I was discharge. I only had nine months left, but they

decideted

> > to do the discharge right away.

> > When I was diagnose I Showed a 2+ proteinuria and 2+ blood on

> > urinalysis and a 1.2 grams of protein per day, and also an

elevated

> > creatinine at 1.4.

> > Do to this I developed High blood pressure 156/110. Now my BP is

> > under control with Lisinopril. The goal is to have it under

130/80.

> > Since that, my protein is increasing, the first time it when up to

> > 1.4 grams per day, and the second time when up to 1.5 grams per

day.

> > Which is really scary for me, because I already have a 50% damage

in

> > my kidneys(my left kidney is more damage than my right kidney)

and I

> > have a high potential for end-stage renal failure.

> > And I say scary because of the dialysis.

> > My life have change a lot. Now I have a low protein no salt diet.

> > Sometimes I have pain in my kidneys(like cramps, and I don't have

> > kidney stones)that will make me cry, I feel tired(fatige) or the

> > muscle pain I get for nothing, nausea(I know they say it's not

> > relate) and of course when there is a bug around(flu or cold) I'm

> > always the fist one to get sick.

> > But the most difficult thing is the emotional pain I have.

> > I don't get to go out with my friends and have fun(remember I'm 22

> > yrs) I'm always the babysister for them. When we go out to

restaurants

> > I always end up eating a salad(trust me, when you have this diet,

> > there is no much you can eat in a restaurant). My family don't

really

> > believe that this is something serious(because I'm not in a bed

dying)

> > And as much as I try to explain this to my boyfriend, He can't

> > understand why someone who looks " ok " can be this sick.

> > So, in others words, I'm dealing with this by myself.

Unfortunately

> > in the area where I live there is no support groups that can help

me.

> > Maybe someone here can help me a little bit with this; When I was

> > told about this, I never thought that could be so streesful.

> >

> >

[Guest guest]

Happy Birthday Curtis.

Pierre

P.S. I agree wholeheartedly with your advice.

RE: Re: new to the support group

> Hi Jeimy

>

> Patients of any age can get IgA. I was a teenager when I was diagnosed

via

> biopsy, and just turned 37 (today actually). Although I am on a low

sodium

> / low protein diet, and have symptoms of fatigue and occasional nausea,

I'm

> still going strong. Dialysis and / or transplant is probably in my

future,

> but I'll deal with that when the times comes.

>

> My advise - don't live your life in a bubble because of your IgA. Do

pretty

> much what other 22 year olds do, keeping you BP in check, of course.

>

> Good luck,

>

> Curtis in Ontario, Canada

[Guest guest]

Jeimy,

My IgAN started when I was 17. Once when I was about 9, I had some visible hematuria, so I may have had it at a much younger age but just did not know it.

Marty

new to the support group> > > > Hi, my name it's Jeimy. I'm 22 years old and six months ago I was> > diagnose with a chronic glomerulonephritis due to IgA nephropathy.> > I was in the United States Navy when I was diagnose, three months> > later I was discharge. I only had nine months left, but they decideted> > to do the discharge right away.> > When I was diagnose I Showed a 2+ proteinuria and 2+ blood on> > urinalysis and a 1.2 grams of protein per day, and also an elevated> > creatinine at 1.4.> > Do to this I developed High blood pressure 156/110. Now my BP is> > under control with Lisinopril. The goal is to have it under 130/80.> > Since that, my protein is increasing, the first time it when up to> > 1.4 grams per day, and the second time when up to 1.5 grams per day.> > Which is really scary for me, because I already have a 50% damage in> > my kidneys(my left kidney is more damage than my right kidney) and I> > have a high potential for end-stage renal failure.> > And I say scary because of the dialysis.> > My life have change a lot. Now I have a low protein no salt diet.> > Sometimes I have pain in my kidneys(like cramps, and I don't have> > kidney stones)that will make me cry, I feel tired(fatige) or the> > muscle pain I get for nothing, nausea(I know they say it's not> > relate) and of course when there is a bug around(flu or cold) I'm> > always the fist one to get sick.> > But the most difficult thing is the emotional pain I have.> > I don't get to go out with my friends and have fun(remember I'm 22> > yrs) I'm always the babysister for them. When we go out to restaurants> > I always end up eating a salad(trust me, when you have this diet,> > there is no much you can eat in a restaurant). My family don't really> > believe that this is something serious(because I'm not in a bed dying)> > And as much as I try to explain this to my boyfriend, He can't> > understand why someone who looks "ok" can be this sick.> > So, in others words, I'm dealing with this by myself. Unfortunately> > in the area where I live there is no support groups that can help me.> > Maybe someone here can help me a little bit with this; When I was> > told about this, I never thought that could be so streesful.> >> >

[Guest guest]

-Welcome Jeimy. I am 38 and I was diagnosed last May with IgA. I

have high protein, but no other signs. My doctor has put me on bp

meds. to help keep it in the low normal range, I am on a 50 gram

protein diet (verrrry hard to do) to try to loose weight, and I try

to walk 2 miles a day. I was depressed for a while, and with the

help of all the wonderful folks here on the message board, I soon got

over it. My life is back to normal, I shoot competion 3-D archery,

bowhunt (am getting ready for a week's vacation to bowhunt for

whitetail deer). Life is what you make it, and I choose not to let

IgA get me down. In some aspects, this was a blessing, as it got me

off my duff and has made me take better care of myself. I actually

feel better than I have in years, as I now try to eat right,

exercise, and my general outlook on life is better. I too get tired

of salads, and fish and chicken ( my neph. has me cutting back on red

meat,about 6 to 8 ounces a week). Your life is going to be

fullfilling, exciting, and wonderful...don't let something like IgA

slow you down! I have a double wammy as I have this disease, and

also a very rare heart disease called epstein's anomoly. I made up

my mind long ago to live life to the fullest, and you should do that

too!

Good luck and vist here when you need too!

-- In iga-nephropathy@y..., jeimym@a... wrote:

> Hi, my name it's Jeimy. I'm 22 years old and six months ago I was

> diagnose with a chronic glomerulonephritis due to IgA nephropathy.

> I was in the United States Navy when I was diagnose, three months

> later I was discharge. I only had nine months left, but they

decideted

> to do the discharge right away.

> When I was diagnose I Showed a 2+ proteinuria and 2+ blood on

> urinalysis and a 1.2 grams of protein per day, and also an elevated

> creatinine at 1.4.

> Do to this I developed High blood pressure 156/110. Now my BP is

> under control with Lisinopril. The goal is to have it under 130/80.

> Since that, my protein is increasing, the first time it when up to

> 1.4 grams per day, and the second time when up to 1.5 grams per day.

> Which is really scary for me, because I already have a 50% damage

in

> my kidneys(my left kidney is more damage than my right kidney) and

I

> have a high potential for end-stage renal failure.

> And I say scary because of the dialysis.

> My life have change a lot. Now I have a low protein no salt diet.

> Sometimes I have pain in my kidneys(like cramps, and I don't have

> kidney stones)that will make me cry, I feel tired(fatige) or the

> muscle pain I get for nothing, nausea(I know they say it's not

> relate) and of course when there is a bug around(flu or cold) I'm

> always the fist one to get sick.

> But the most difficult thing is the emotional pain I have.

> I don't get to go out with my friends and have fun(remember I'm 22

> yrs) I'm always the babysister for them. When we go out to

restaurants

> I always end up eating a salad(trust me, when you have this diet,

> there is no much you can eat in a restaurant). My family don't

really

> believe that this is something serious(because I'm not in a bed

dying)

> And as much as I try to explain this to my boyfriend, He can't

> understand why someone who looks " ok " can be this sick.

> So, in others words, I'm dealing with this by myself. Unfortunately

> in the area where I live there is no support groups that can help

me.

> Maybe someone here can help me a little bit with this; When I was

> told about this, I never thought that could be so streesful.

[Guest guest]

Of course, we all have our little exceptions.

Pierre

RE: new to the support group

I would except the in-laws are coming to visit!!!!!!!!!! Luckily, they are not staying in my house so I don’t have to live with them (whew).

-----Original Message-----From: Pierre Sent: 23 October 2001 01:01To: iga-nephropathy Subject: Re: new to the support group

This isn't aimed at anyone in particular, but just as friendly advice. One thing we have in common with just about everyone who has a chronic illness is that we have to keep on guard for depression. Keeping as active as possible helps. As the song says, accentuate the positive, decentuate the negative : )Pierre