Re: Symptoms

[Guest guest]

Hi, Welcome to the group, I'm very glad you found us. I'm not quite down to

your levels yet but I do understand the deep depression this disease can send

you into. As your sister is being worked up for a donor do they anticipate

doing a pre-emptive transplant? If so have they given you a timeline for it?

I have also been thru therapy and it helped some, this support group has helped

more. Just knowing there are others out there, who are going thru exactly what

you are, who you can write anything to and get an understanding nod is awesome.

This is the place to vent when you need to and to help support others when you

are up. Acceptance is a place we all eventually reach but when you are looking

at it from the distance of depression or denial it seems forever and a day away.

I've been there and I've come back from there, this group can help with that.

The symptoms you describe are very much like the ones I was experiencing when I

was in the midst of nephrotic syndrome (caused by high 3.5g/24hrs or so protein

spills). I could hardly get out of bed, I had quite a few " nervous breakdown "

type episodes where I would start crying uncontrollably and not be able to stop,

I felt ill all the time and just didn't see the point in getting dressed most

days. I was not only in nephrotic syndrome but I was seriously depressed on top

of it all. This all happened before I was diagnosed, after my diagnosis showed

rapidly progressing IgAN where I had gone from normal kidney function to 35%

kidney function in less than 6 months my depression got worse....though high

doses of prednisone brought the protein spill under control and in doing so

greatly reduced the nephrotic syndrome part of my problems.

Normal for you is just that, normal for you. For me normal is walking around

puffy all the time from the steroids, taking 24 pills a day (prednisone,

lisinopril, 10 fish oil, 2 garlic, 3 calcium, 3 acidophilus, 1 multi-vitamin,

and 2 melatonin to sleep at night), and getting up roughly 3 times a night to

pee. Waking up in the morning not knowing how I'm going to be feeling...will I

have a headache all day, will I have a lot of energy, will I be begging for a

nap in just a few hours? That's normal for me, the days I wake up with a ton of

energy I try to use to my advantage and I get as much done as I can, the days I

don't...well I just get thru the day the best I can. Also, just because my

husband goes to sleep without problems, just takes a few vitamins and

supplements at night and sleeps like a toddler (we all know babies don't sleep

people) doesn't mean I'm any less normal than he is....I'm normal for me.

There is a great website, if you haven't read this yet it might help some, with

the Spoon Theory on it. It was written by a woman with Lupus but it thoroughly

explains the way those of us with a chronic disease feel on a daily basis. If

you have time give it a read: http://www.butyoudontlooksick.com/spoons.htm

If you haven't yet check out our sister site www.igan.ca there is a lot of info

on there from a patients point of view that may help you understand things you

are going thru a bit better. Please remember you never have to be alone with

this, many of us here have been there before you and some of us will be shortly

following in your foot steps. What you learn along the way will help more

people than you know.

Hang in there,

Amy G.

Symptoms

I was diagnosed 20 years ago with iga. It has been a slow but steady

decline in function. Right now my creatine is at 3.8 - 4.0, my

function is at 22%. This is the first time I have sought out any type

of support group. It has been hard to accept this since for so long I

have had no symptoms other than high blood pressure. I have done all

of the testing along with my sister and she is a perfect match.

That's another issue, acceptance. I have been going to therapy for

about 1 and 1/2 years for this issue and other personal matters. It

has helped some. I now find myself some days just unable to get up.

Sometimes it is just a labor to breath. I get tired during the day

and just want to sleep. I know my blood count can affect this. Last

blood work showed I was borderline anemic. No shots yet. I'm kinda

confused (sometimes literally) about the way I feel. I guess I was

not expecting to have any symptoms until my function fell below 10%.

Sometimes it is hard to concentrate on what i am doing. I feel like I

am not a complete person. I feel like my life as I know it is

slipping away, and I can only watch. Until I begin dialysis or

prepare for the transplant, it feels like I am in limbo. Like I have

no right to feel poorly. It has already begun to affect my job by my

taking days off of work when I just can't seem to get out of bed. I

guess I'm just looking for other people with my blood levels and

fuction to see how they feel. I guess i am trying to find a reference

because for so long I have lived with this. It's hard to tell what is

normal anymore. To me it is normal to take 8 pills a day. Get up six

to eight times a night to use the bathroom. Take a sleeping pill to

help me sleep without getting up so much so I can rest better, and

feel better in the morning. Although I will feel tired anyway. Oh

well any response would be appreciated.

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 Amy,

My name is , I have been here for a long time now and I want to say that

web site you gave for us to read is so close to home. I truely appreciate that

you shared that with the group. Thanks again.

Sincerely,

Amy Griswold purrfect@...> wrote:

Hi, Welcome to the group, I'm very glad you found us. I'm not quite down to

your levels yet but I do understand the deep depression this disease can send

you into. As your sister is being worked up for a donor do they anticipate

doing a pre-emptive transplant? If so have they given you a timeline for it?

I have also been thru therapy and it helped some, this support group has helped

more. Just knowing there are others out there, who are going thru exactly what

you are, who you can write anything to and get an understanding nod is awesome.

This is the place to vent when you need to and to help support others when you

are up. Acceptance is a place we all eventually reach but when you are looking

at it from the distance of depression or denial it seems forever and a day away.

I've been there and I've come back from there, this group can help with that.

The symptoms you describe are very much like the ones I was experiencing when I

was in the midst of nephrotic syndrome (caused by high 3.5g/24hrs or so protein

spills). I could hardly get out of bed, I had quite a few " nervous breakdown "

type episodes where I would start crying uncontrollably and not be able to stop,

I felt ill all the time and just didn't see the point in getting dressed most

days. I was not only in nephrotic syndrome but I was seriously depressed on top

of it all. This all happened before I was diagnosed, after my diagnosis showed

rapidly progressing IgAN where I had gone from normal kidney function to 35%

kidney function in less than 6 months my depression got worse....though high

doses of prednisone brought the protein spill under control and in doing so

greatly reduced the nephrotic syndrome part of my problems.

Normal for you is just that, normal for you. For me normal is walking around

puffy all the time from the steroids, taking 24 pills a day (prednisone,

lisinopril, 10 fish oil, 2 garlic, 3 calcium, 3 acidophilus, 1 multi-vitamin,

and 2 melatonin to sleep at night), and getting up roughly 3 times a night to

pee. Waking up in the morning not knowing how I'm going to be feeling...will I

have a headache all day, will I have a lot of energy, will I be begging for a

nap in just a few hours? That's normal for me, the days I wake up with a ton of

energy I try to use to my advantage and I get as much done as I can, the days I

don't...well I just get thru the day the best I can. Also, just because my

husband goes to sleep without problems, just takes a few vitamins and

supplements at night and sleeps like a toddler (we all know babies don't sleep

people) doesn't mean I'm any less normal than he is....I'm normal for me.

There is a great website, if you haven't read this yet it might help some, with

the Spoon Theory on it. It was written by a woman with Lupus but it thoroughly

explains the way those of us with a chronic disease feel on a daily basis. If

you have time give it a read: http://www.butyoudontlooksick.com/spoons.htm

If you haven't yet check out our sister site www.igan.ca there is a lot of info

on there from a patients point of view that may help you understand things you

are going thru a bit better. Please remember you never have to be alone with

this, many of us here have been there before you and some of us will be shortly

following in your foot steps. What you learn along the way will help more

people than you know.

Hang in there,

Amy G.

Symptoms

I was diagnosed 20 years ago with iga. It has been a slow but steady

decline in function. Right now my creatine is at 3.8 - 4.0, my

function is at 22%. This is the first time I have sought out any type

of support group. It has been hard to accept this since for so long I

have had no symptoms other than high blood pressure. I have done all

of the testing along with my sister and she is a perfect match.

That's another issue, acceptance. I have been going to therapy for

about 1 and 1/2 years for this issue and other personal matters. It

has helped some. I now find myself some days just unable to get up.

Sometimes it is just a labor to breath. I get tired during the day

and just want to sleep. I know my blood count can affect this. Last

blood work showed I was borderline anemic. No shots yet. I'm kinda

confused (sometimes literally) about the way I feel. I guess I was

not expecting to have any symptoms until my function fell below 10%.

Sometimes it is hard to concentrate on what i am doing. I feel like I

am not a complete person. I feel like my life as I know it is

slipping away, and I can only watch. Until I begin dialysis or

prepare for the transplant, it feels like I am in limbo. Like I have

no right to feel poorly. It has already begun to affect my job by my

taking days off of work when I just can't seem to get out of bed. I

guess I'm just looking for other people with my blood levels and

fuction to see how they feel. I guess i am trying to find a reference

because for so long I have lived with this. It's hard to tell what is

normal anymore. To me it is normal to take 8 pills a day. Get up six

to eight times a night to use the bathroom. Take a sleeping pill to

help me sleep without getting up so much so I can rest better, and

feel better in the morning. Although I will feel tired anyway. Oh

well any response would be appreciated.

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 Nameless :-)

Welcome to the group.

I don't know about anyone else, but I have to say, I know exactly how you

feel.

For one thing, my situation was somewhat similar, reaching a serum cr of

about 4.0 some 25 years after my kidney disease symptoms first were

discovered. Most of those 25 years, I didn't have any symptoms at all,

really, except when the high blood pressure kicked in after the first 10

years or so. I just went on living a completely normal life.

But boy, once I got into more advanced renal failure, say, above a

creatinine of 300 or so (very roughly about 3 in US terms), did I ever start

having problems. I pretty much felt exactly as you describe it.

There is a strange thing about renal failure. Some people don't even know

they have it until they learn they have to start dialysis. But others are

really affected by it after they start getting down below 30% kidney

function, and even more as they approach 20%. The people who aren't affected

much by it don't really understand how those who are feel. Are you of slight

build, by any chance? I find that smaller people and people of slight build

seem to feel it more.

Similarly to you, I was anemic, but not enough to trigger the use of EPO. I

only started taking EPO about 6 months after I had started dialysis.

I remember even using the same expression as you did in your message when

talking about this with my wife, saying that I felt like I was in limbo

waiting to start dialysis - too sick to function, but not quite bad enough

to start dialysis.

Everything you describe sounds to me like it is exactly what one would

expect from having 20% kidney function, even the mental changes, difficulty

sleeping, etc. Don't worry, it's not you, it's the kidney failure. Don't

beat yourself up over it. You have every " right " to feel as you do. Just do

the best you can.

Good luck.

Pierre

Symptoms

>I was diagnosed 20 years ago with iga. It has been a slow but steady

> decline in function. Right now my creatine is at 3.8 - 4.0, my

> function is at 22%. This is the first time I have sought out any type

> of support group. It has been hard to accept this since for so long I

> have had no symptoms other than high blood pressure. I have done all

> of the testing along with my sister and she is a perfect match.

> That's another issue, acceptance. I have been going to therapy for

> about 1 and 1/2 years for this issue and other personal matters. It

> has helped some. I now find myself some days just unable to get up.

> Sometimes it is just a labor to breath. I get tired during the day

> and just want to sleep. I know my blood count can affect this. Last

> blood work showed I was borderline anemic. No shots yet. I'm kinda

> confused (sometimes literally) about the way I feel. I guess I was

> not expecting to have any symptoms until my function fell below 10%.

> Sometimes it is hard to concentrate on what i am doing. I feel like I

> am not a complete person. I feel like my life as I know it is

> slipping away, and I can only watch. Until I begin dialysis or

> prepare for the transplant, it feels like I am in limbo. Like I have

> no right to feel poorly. It has already begun to affect my job by my

> taking days off of work when I just can't seem to get out of bed. I

> guess I'm just looking for other people with my blood levels and

> fuction to see how they feel. I guess i am trying to find a reference

> because for so long I have lived with this. It's hard to tell what is

> normal anymore. To me it is normal to take 8 pills a day. Get up six

> to eight times a night to use the bathroom. Take a sleeping pill to

> help me sleep without getting up so much so I can rest better, and

> feel better in the morning. Although I will feel tired anyway. Oh

> well any response would be appreciated.

>

>

[Guest guest]

Thanks everyone,

My name is Todd.

> Hi Nameless :-)

>

> Welcome to the group.

>

> I don't know about anyone else, but I have to say, I know exactly

how you

> feel.

>

> For one thing, my situation was somewhat similar, reaching a serum

cr of

> about 4.0 some 25 years after my kidney disease symptoms first were

> discovered. Most of those 25 years, I didn't have any symptoms at all,

> really, except when the high blood pressure kicked in after the

first 10

> years or so. I just went on living a completely normal life.

>

> But boy, once I got into more advanced renal failure, say, above a

> creatinine of 300 or so (very roughly about 3 in US terms), did I

ever start

> having problems. I pretty much felt exactly as you describe it.

>

> There is a strange thing about renal failure. Some people don't even

know

> they have it until they learn they have to start dialysis. But

others are

> really affected by it after they start getting down below 30% kidney

> function, and even more as they approach 20%. The people who aren't

affected

> much by it don't really understand how those who are feel. Are you

of slight

> build, by any chance? I find that smaller people and people of

slight build

> seem to feel it more.

>

> Similarly to you, I was anemic, but not enough to trigger the use of

EPO. I

> only started taking EPO about 6 months after I had started dialysis.

>

> I remember even using the same expression as you did in your message

when

> talking about this with my wife, saying that I felt like I was in limbo

> waiting to start dialysis - too sick to function, but not quite bad

enough

> to start dialysis.

>

> Everything you describe sounds to me like it is exactly what one would

> expect from having 20% kidney function, even the mental changes,

difficulty

> sleeping, etc. Don't worry, it's not you, it's the kidney failure.

Don't

> beat yourself up over it. You have every " right " to feel as you do.

Just do

> the best you can.

>

> Good luck.

>

> Pierre

>

> Symptoms

>

>

> >I was diagnosed 20 years ago with iga. It has been a slow but steady

> > decline in function. Right now my creatine is at 3.8 - 4.0, my

> > function is at 22%. This is the first time I have sought out any type

> > of support group. It has been hard to accept this since for so long I

> > have had no symptoms other than high blood pressure. I have done all

> > of the testing along with my sister and she is a perfect match.

> > That's another issue, acceptance. I have been going to therapy for

> > about 1 and 1/2 years for this issue and other personal matters. It

> > has helped some. I now find myself some days just unable to get up.

> > Sometimes it is just a labor to breath. I get tired during the day

> > and just want to sleep. I know my blood count can affect this. Last

> > blood work showed I was borderline anemic. No shots yet. I'm kinda

> > confused (sometimes literally) about the way I feel. I guess I was

> > not expecting to have any symptoms until my function fell below 10%.

> > Sometimes it is hard to concentrate on what i am doing. I feel like I

> > am not a complete person. I feel like my life as I know it is

> > slipping away, and I can only watch. Until I begin dialysis or

> > prepare for the transplant, it feels like I am in limbo. Like I have

> > no right to feel poorly. It has already begun to affect my job by my

> > taking days off of work when I just can't seem to get out of bed. I

> > guess I'm just looking for other people with my blood levels and

> > fuction to see how they feel. I guess i am trying to find a reference

> > because for so long I have lived with this. It's hard to tell what is

> > normal anymore. To me it is normal to take 8 pills a day. Get up six

> > to eight times a night to use the bathroom. Take a sleeping pill to

> > help me sleep without getting up so much so I can rest better, and

> > feel better in the morning. Although I will feel tired anyway. Oh

> > well any response would be appreciated.

> >

> >

[Guest guest]

Welcome to the group, Todd.

Are you on a pre-dialysis renal diet at this point?

Pierre

Re: Symptoms

> Thanks everyone,

>

> My name is Todd.

>

>

>

>

>

>

>

>

>> Hi Nameless :-)

>>

>> Welcome to the group.

>>

>> I don't know about anyone else, but I have to say, I know exactly

> how you

>> feel.

>>

>> For one thing, my situation was somewhat similar, reaching a serum

> cr of

>> about 4.0 some 25 years after my kidney disease symptoms first were

>> discovered. Most of those 25 years, I didn't have any symptoms at all,

>> really, except when the high blood pressure kicked in after the

> first 10

>> years or so. I just went on living a completely normal life.

>>

>> But boy, once I got into more advanced renal failure, say, above a

>> creatinine of 300 or so (very roughly about 3 in US terms), did I

> ever start

>> having problems. I pretty much felt exactly as you describe it.

>>

>> There is a strange thing about renal failure. Some people don't even

> know

>> they have it until they learn they have to start dialysis. But

> others are

>> really affected by it after they start getting down below 30% kidney

>> function, and even more as they approach 20%. The people who aren't

> affected

>> much by it don't really understand how those who are feel. Are you

> of slight

>> build, by any chance? I find that smaller people and people of

> slight build

>> seem to feel it more.

>>

>> Similarly to you, I was anemic, but not enough to trigger the use of

> EPO. I

>> only started taking EPO about 6 months after I had started dialysis.

>>

>> I remember even using the same expression as you did in your message

> when

>> talking about this with my wife, saying that I felt like I was in limbo

>> waiting to start dialysis - too sick to function, but not quite bad

> enough

>> to start dialysis.

>>

>> Everything you describe sounds to me like it is exactly what one would

>> expect from having 20% kidney function, even the mental changes,

> difficulty

>> sleeping, etc. Don't worry, it's not you, it's the kidney failure.

> Don't

>> beat yourself up over it. You have every " right " to feel as you do.

> Just do

>> the best you can.

>>

>> Good luck.

>>

>> Pierre

>>

[Guest guest]

Hi Todd,

A very warm welcome to you. I am sorry to hear that you have an advanced

stage of IgAN. You are certainly not alone in your symptoms. I am down to 13%

function, and I completely understand feeling in limbo knowing dialysis

and/or transplant are around the corner but not knowing exactly when.

If your hematocrit is low, that can certainly contribute to feeling tired.

I know I need to take a nap most weekend days now. I still am working full

time, traveling extensively and the thing that really helps my energy level,

the fatigue and also feeling poorly is exercise. I get on my treadmill for 4

miles five days a week. I think that sweating out some of the toxins really

helps tremendously. I can really feel a difference on the days off exercise.

I have not yet found that IgAN has impacted my work. I have not missed any

days due to illness this year, although there certainly are days that the

hours drag by because I am so tired.

For me, the fatigue, persistent low level nausea, and lack of appetite are

my biggest challenges. I just decided long ago that I was not going to allow

IgAN to dictate my life so I work hard to not let it have a negative impact

on me. I do know it is hard, and some days harder than others, but when I

just focus on all the blessings I have, it helps keep IgAN in perspective and

that helps to not let it get overwhelming.

I am very glad to hear that your sister is a perfect match. Are you trying

for a preemptive transplant?

Just know you are not alone, and you have certainly found a group of people

who completely understand what you are going through both emotionally and

physically.

Welcome again!

[Guest guest]

my doctor advises me to limit protein intake along with sodium and

potassium. Given what i like to eat and what i can't have, it doesn't

leave me with to many options. i don't eat a lot anyway. I'm 6'1 "

and 240 lbs. I think that contributes to people saying " he doesn't

look sick' What does a sick person look like? I wanted a transplant

about a year ago, but the doctors said it was too soon. Apparently

they want you to begin feeling poorly and have function down as low as

possible to extend the life of the new kidney. I guess i'm just tired

of feeling fine one day and exhausted the next.

> Welcome to the group, Todd.

>

> Are you on a pre-dialysis renal diet at this point?

>

> Pierre

>

[Guest guest]

I just wanted to add my welcome to you also! Many of us have been or will

be in your shoes, so we understand what you are experiencing. My suggestion

is to continue to read the posts, you will be amazed at what you will learn

and what others will learn from you. Hugs, Rita

[Guest guest]

I found out I had IGAN when I was 31 and my creatine was over 4.0-I

had approx 20% function. over the past 10 months my creatine is

between 5 and 6.Now 4 yrs later, I am closer to 10% function and my

brother is getting worked up for transplant. When my HCT was around

28-30, I was so tired and didn't know how I could get thru the day,

then I started aranesp and my HCT is around 33 and I am better, but

still tired at the end of the day. Some days I have a lot of energy

and others none.I am happy and have a wonderful husband, I love to

laugh. I am also nervous and scared at times, but I try to live for

the moment and enjoy what I can because the future will be as it

will. I am very fortunate I don't feel blue alot,sometimes I do. Do

you think you are depressed or just so fatigued. Sorry if I am

rambling on, but I think it is normal to have a variety of

feelings,but I am worried you seem so sad and I hope you can fix

whatever is causing you to feel like not getting up.I sometimes find

I feel better when I have more to do than when I am off and can lay

around.-hopes this helps,christine

> I was diagnosed 20 years ago with iga. It has been a slow but

steady

> decline in function. Right now my creatine is at 3.8 - 4.0, my

> function is at 22%. This is the first time I have sought out any

type

> of support group. It has been hard to accept this since for so

long I

> have had no symptoms other than high blood pressure. I have done

all

> of the testing along with my sister and she is a perfect match.

> That's another issue, acceptance. I have been going to therapy for

> about 1 and 1/2 years for this issue and other personal matters. It

> has helped some. I now find myself some days just unable to get

up.

> Sometimes it is just a labor to breath. I get tired during the day

> and just want to sleep. I know my blood count can affect this.

Last

> blood work showed I was borderline anemic. No shots yet. I'm kinda

> confused (sometimes literally) about the way I feel. I guess I was

> not expecting to have any symptoms until my function fell below

10%.

> Sometimes it is hard to concentrate on what i am doing. I feel

like I

> am not a complete person. I feel like my life as I know it is

> slipping away, and I can only watch. Until I begin dialysis or

> prepare for the transplant, it feels like I am in limbo. Like I

have

> no right to feel poorly. It has already begun to affect my job by

my

> taking days off of work when I just can't seem to get out of bed. I

> guess I'm just looking for other people with my blood levels and

> fuction to see how they feel. I guess i am trying to find a

reference

> because for so long I have lived with this. It's hard to tell what

is

> normal anymore. To me it is normal to take 8 pills a day. Get up

six

> to eight times a night to use the bathroom. Take a sleeping pill

to

> help me sleep without getting up so much so I can rest better, and

> feel better in the morning. Although I will feel tired anyway. Oh

> well any response would be appreciated.