Re: I don't understand the acceptance

January 3, 2004

In a message dated 1/3/2004 11:05:33 AM Central Standard Time,

pgl-groups@... writes:

(and even that is not that common,

except on the internet, and it's not a permanent condition

I respectfully disagree - for me, such heavy proteinuria was a permanent

condition prior to transplant. I was in nephrotic syndrome, in fact. Just goes

to

show you how different individual clinical conditons are.

Robin s

January 3, 2004

In a message dated 1/3/2004 11:05:33 AM Central Standard Time,

pgl-groups@... writes:

(and even that is not that common,

except on the internet, and it's not a permanent condition

I respectfully disagree - for me, such heavy proteinuria was a permanent

condition prior to transplant. I was in nephrotic syndrome, in fact. Just goes

to

show you how different individual clinical conditons are.

Robin s

January 3, 2004

In a message dated 1/3/2004 11:05:33 AM Central Standard Time,

pgl-groups@... writes:

(and even that is not that common,

except on the internet, and it's not a permanent condition

I respectfully disagree - for me, such heavy proteinuria was a permanent

condition prior to transplant. I was in nephrotic syndrome, in fact. Just goes

to

show you how different individual clinical conditons are.

Robin s

January 3, 2004

In a message dated 1/3/2004 11:05:33 AM Central Standard Time,

pgl-groups@... writes:

The point of all this is to say that children are a lot more resilient than

we think.

This is something I've found to be true as well. I have a 20-year-old. She

has never known me without health problems - literally. You'd be surprised how

resilient they are, although the only change it has made in her life is that

she feels she has to go to work to help pay her fair share of the bills, rather

than go to college. To her, this is normal stuff, not abnormal.

Robin s

January 3, 2004

In a message dated 1/3/2004 11:05:33 AM Central Standard Time,

pgl-groups@... writes:

The point of all this is to say that children are a lot more resilient than

we think.

This is something I've found to be true as well. I have a 20-year-old. She

has never known me without health problems - literally. You'd be surprised how

resilient they are, although the only change it has made in her life is that

she feels she has to go to work to help pay her fair share of the bills, rather

than go to college. To her, this is normal stuff, not abnormal.

Robin s

January 3, 2004

Hi ,

First of all, than you for your honesty and transparency in how you are

feeling. That takes courage.

Let me try to answer your questions:

You ask " How do you accept this and still have a positive attitude? "

The answer to that is faith. I definitely do not mean to be preachy here,

but I can't begin to tell you how strongly my faith carries me. I turn to the

Lord, and it is His strength, and His comfort and the deep thankfulness I draw

from reading the Bible that brings me through. I so strongly believe that

nothing can come into my life that God will not use for His purposes and for His

glory, that no matter what that means, I can still praise Him and say thank

you. I read a life changing book called " The Power of Praise " by Carothers, and

it truly freed me to live in a place of being thankful and counting my

blessings every day. The principles in this book apply to every area of my

life.

For instance, if I am stuck in traffic and late for an appointment, instead of

getting mad, I tell God thank you that I have a car to drive in. So many

people in the world have to walk where they need to go.

With my kidneys, God has blessed me with such a deeper appreciation of life

that I would not have had otherwise without my kidneys. Don't get me wrong, I

have battled depression too, and I have my bad days just like everyone else,

and yes, it IS hard to live with such limitations, but if I focus instead on

the blessings, it makes the road so much easier. Prayer really leaves me

feeling peaceful, calm, thankful and full of praise for all the blessings He

pours

out on my life.

You also say " I want more out of life than that, I don't like being

frightened all the time. PLEASE tell me how to get from where I'm at to where

you are

at. How do you just let this disease take over like that. "

I have been where you are, and at one time I also said I didn't want dialysis

or a transplant so I understand completely what it feels like to be there.

The way I got from where you are to where I am is honestly in prayer. At

first, I had two friends that would come and pray for me because I just could

not

even pray for myself. They came alongside of me and lifted me up in prayer,

and now for years we have prayed together about every Saturday morning and

living a life of disciplined prayer set me free from fear, from despair and

Jesus

honestly took those things and instead gave me His peace and His joy. God

sometimes calms the storms of life, and sometimes He calms His child in the

midst

of the storm, and that is what He has done for me. It all began with a prayer

crying out to God that I was angry and depressed, and I needed help, and He

has been faithful to lift me out of where I was and has truly set me feet upon

a mountain and filled me with joy. Now my circumstances have not changed, in

fact, the kidney function has gotten much worse, but the calm and peace and

joy I feel has deepened dramatically.

I wanted to answer your questions, but I don't want to be offensive to

anyone, so I will leave it here and invite you to email me privately if you

would

like to discuss the process any further. The door is always open to anyone who

wants to talk off-line about my faith.

I am praying for you.

January 3, 2004

You learn to face and accept reality little by little, just by going on with

your life, and crossing every bridge as you come to it, if you ever do come

to it. My parents are of a generation that think they are doing their kids

(all of us over 40 years old) a favour by not telling us when they aren't

well. They don't go to the doctor until a small problem becomes a big

problem, and we can never be sure what's really going on. It's always been

that way with them. To be honest, I've always worried a lot more about them

under those circumstances.

First of all, are you sure it's the kidney disease and not a medication that

is causing you to feel the way you do? IgAN itself, except if there happens

to be an episode with heavy proteinuria (and even that is not that common,

except on the internet, and it's not a permanent condition), is fairly

benign until you finally reach kidney failure - and even that is not a sure

thing. Medications can be changed, and especially in the case of blood

pressure medications, it can take a long period of trial and error before

you and your doctor can finally find one that (1) works, and (2) you can

tolerate.

Kids are stronger and more resilient than you think. When I was young, about

8 years old, my father spent more than 6 months in hospital after he had a

heart attack AND a very bad case of stomach ulcers. In those days, ulcers

were a very serious thing, and there was no medicare yet, and no health

insurance. We lost the house, the car and even some furniture. We had to

move to a rowhouse in a cheaper neighbourhood.

A few years later, when I was about 13, my mother came down with a

mysterious disorder which had her in and out of hospital for months at a

time, over a period of 5 years, or more. We literally didn't see her except

at the hospital window for months at a time, way up on the 5th floor or

something, from our car parked in the hospital parking lot. In those days,

children were not allowed up into the hospital. They never did really know

what she had for sure. One doctor thought Behcet's Syndrome, but other

didn't agree. It eventually went and stayed in remission, but twice around

1969, I was at the hospital (I was about 16 then), when the doctor came out

and told us they didn't expect her to make it through the night. She was

administered the last rites at least twice that I know of. But she is still

here today.

The point of all this is to say that children are a lot more resilient than

we think. It's far better, in my opinion, to let them know what's going on.

All of us kids ended up just fine, despite all the medical adversity.

But I have to be perhaps a little brutal here, . When I read your

email, it sounds like it's from a terminal cancer patient who has been given

5 weeks to live. Is it possible that maybe, just a little, you are looking

at it in a way that is a lot bleaker than the reality is? You're not on

dialysis yet, not by a longshot. Ok, one day you might be. But by that time,

you will probably take it in stride, like everyone else does. I know a lot

of dialysis patients personally, and I can't think of one who would rather

be dead than be on dialysis 3 times a week. It's not that big a deal once

you're on it. People kill themselves for many things, and often things that

appear relatively inconsequential to us, but everyone I know who is on

dialysis has a very strong will to live, and to live as normally as

possible. I even know some who have been told they can never get a kidney

transplant because of a weak heart or whatever. They have no hope of ever

getting off dialysis, but I still see them every time I go in. They are

there, getting their dialysis, like everyone else. Most are diabetics, and

some have had to have toes, fingers or entire legs amputated because of it.

Some walk with a white cane, as diabetes bad enough to affect the kidney

often also affects the eyes, as well as the cardiovascular system. They also

are there, treatment after treatment. Being on dialysis because of IgAN is a

breeze compared to that.

I know you don't feel well right now. First, make sure your doctor knows

this, and that there isn't something else besides the IgAN going on, even

depression (the reality is that depression does happen, and often, the

person who has it is the one least likely to recognise it). Second, you may

need some real life contact, be it a doctor or a social worker, or a live

support group. The Internet is great, but it's somewhat impersonal. Have you

checked with the local chapter of the Kidney Foundation? They may be running

live patient support groups every once in a while, or they may have other

resources, or know of a group that does. A live support group where you meet

and talk with other kidney patients at every stage can be extremely helpful

in helping to put things into proper perspective.

How do we just let this disease take over like that? Well, actually ,

most of us don't, at least not after some time has passed. You are actually

doing that at the moment, but, it's not a permanent thing. It's a phase you

go through. You WILL go through it, but you have to sort ride with it for a

while, without giving in to it too much. Pretty soon, once things stabilize

with the kidneys, as they always do, you will gradually stop thinking about

it and just do whatever life calls for you to do.

I'm sorry if this sounds insensitive, to you or anybody else, but you have

to want to help yourself. The problem is that it's hard to get motivated to

do it at first. Find out enough about the disease, but not to the extent

that you micro-manage everything your doctor does for you. The more you

know, the less scary it is. Then, find out what resources are available

locally. And above all, don't stop doing things and living a normal life.

Get plenty of rest, but balance it out with plenty of activity.

I don't mean to come across as being uncaring or not understanding. I

understand very well. But don't let yourself go down the slippery path of

despair. That's a dead-end road if there ever was one, plus, it may actually

worsen your health in the long run.

If there is absolutely nothing where you live, like support groups, etc.,

then maybe you could consider volunteering at a dialysis centre in a

hospital for a while, or in something else. You can learn a lot by hanging

around with the patients, and talking to the nurses.

As a final thought, if you feel like you could sleep for days, try to do so.

Let yourself get the rest.

Pierre

I don't understand the acceptance

> ,

> This is to everyone here. I have been trying to read all of what's

written to different people and keep hearing you talk about the fatigue and

the amount of sleep you need. I really understand the fatigue. There are

days that it feels like I could sleep for days literally. I can't accept

that. I have too much to do with too little time as it is. How do you

accept this and still have a positive attitude? I am so angry that I'm

tired and I hurt all the time. I have 4 children who need me to be the mom

I used to be. 2 teenage girls and 2 pre-teen boys who need me to be strong

and keep them well centered. How do you tell your children that you're ill

and keep them from worrying. My attitude right now is that I can't be a good

mother and wife if I'm sick all the time. I have stated that if it ever

comes down to dialisys, I won't do it. I want more out of life than that, I

don't like beeing frightened all the time. PLEASE tell me how to get from

where I'm at to where you

> are at. How do you just let this disease take over like that. I don't

want to be sick, but I certainly don't want to prolong life and be miserable

while trying to sustain it. Boy, this is very trying. JULIE

>

January 3, 2004

Pierre,

What a great post. You have so much wisdom. You have been through lots of

losses in your life. It must have been very difficult to lose your home at

such a young age and to have to watch both of your parents go through so much

illness.

It is evident that you have used the storms of life to make you stronger and

a better person. Now I better understand the source of your compassion and

empathy for others. You have taken adversity in your own life and given so much

to others as evidenced by this site :-)

In a message dated 1/3/2004 9:05:26 AM Pacific Standard Time,

pgl-groups@... writes:

> You learn to face and accept reality little by little, just by going on

> with

> your life, and crossing every bridge as you come to it, if you ever do come

> to it. My parents are of a generation that think they are doing their kids

> (all of us over 40 years old) a favour by not telling us when they aren't

> well. They don't go to the doctor until a small problem becomes a big

> problem, and we can never be sure what's really going on. It's always been

> that way with them. To be honest, I've always worried a lot more about them

> under those circumstances.

>

> First of all, are you sure it's the kidney disease and not a medication that

> is causing you to feel the way you do? IgAN itself, except if there happens

> to be an episode with heavy proteinuria (and even that is not that common,

> except on the internet, and it's not a permanent condition), is fairly

> benign until you finally reach kidney failure - and even that is not a sure

> thing. Medications can be changed, and especially in the case of blood

> pressure medications, it can take a long period of trial and error before

> you and your doctor can finally find one that (1) works, and (2) you can

> tolerate.

>

> Kids are stronger and more resilient than you think. When I was young, about

> 8 years old, my father spent more than 6 months in hospital after he had a

> heart attack AND a very bad case of stomach ulcers. In those days, ulcers

> were a very serious thing, and there was no medicare yet, and no health

> insurance. We lost the house, the car and even some furniture. We had to

> move to a rowhouse in a cheaper neighbourhood.

>

> A few years later, when I was about 13, my mother came down with a

> mysterious disorder which had her in and out of hospital for months at a

> time, over a period of 5 years, or more. We literally didn't see her except

> at the hospital window for months at a time, way up on the 5th floor or

> something, from our car parked in the hospital parking lot. In those days,

> children were not allowed up into the hospital. They never did really know

> what she had for sure. One doctor thought Behcet's Syndrome, but other

> didn't agree. It eventually went and stayed in remission, but twice around

> 1969, I was at the hospital (I was about 16 then), when the doctor came out

> and told us they didn't expect her to make it through the night. She was

> administered the last rites at least twice that I know of. But she is still

> here today.

>

> The point of all this is to say that children are a lot more resilient than

> we think. It's far better, in my opinion, to let them know what's going on.

> All of us kids ended up just fine, despite all the medical adversity.

>

> But I have to be perhaps a little brutal here, . When I read your

> email, it sounds like it's from a terminal cancer patient who has been given

> 5 weeks to live. Is it possible that maybe, just a little, you are looking

> at it in a way that is a lot bleaker than the reality is? You're not on

> dialysis yet, not by a longshot. Ok, one day you might be. But by that time,

> you will probably take it in stride, like everyone else does. I know a lot

> of dialysis patients personally, and I can't think of one who would rather

> be dead than be on dialysis 3 times a week. It's not that big a deal once

> you're on it. People kill themselves for many things, and often things that

> appear relatively inconsequential to us, but everyone I know who is on

> dialysis has a very strong will to live, and to live as normally as

> possible. I even know some who have been told they can never get a kidney

> transplant because of a weak heart or whatever. They have no hope of ever

> getting off dialysis, but I still see them every time I go in. They are

> there, getting their dialysis, like everyone else. Most are diabetics, and

> some have had to have toes, fingers or entire legs amputated because of it.

> Some walk with a white cane, as diabetes bad enough to affect the kidney

> often also affects the eyes, as well as the cardiovascular system. They also

> are there, treatment after treatment. Being on dialysis because of IgAN is a

> breeze compared to that.

>

> I know you don't feel well right now. First, make sure your doctor knows

> this, and that there isn't something else besides the IgAN going on, even

> depression (the reality is that depression does happen, and often, the

> person who has it is the one least likely to recognise it). Second, you may

> need some real life contact, be it a doctor or a social worker, or a live

> support group. The Internet is great, but it's somewhat impersonal. Have you

> checked with the local chapter of the Kidney Foundation? They may be running

> live patient support groups every once in a while, or they may have other

> resources, or know of a group that does. A live support group where you meet

> and talk with other kidney patients at every stage can be extremely helpful

> in helping to put things into proper perspective.

>

> How do we just let this disease take over like that? Well, actually ,

> most of us don't, at least not after some time has passed. You are actually

> doing that at the moment, but, it's not a permanent thing. It's a phase you

> go through. You WILL go through it, but you have to sort ride with it for a

> while, without giving in to it too much. Pretty soon, once things stabilize

> with the kidneys, as they always do, you will gradually stop thinking about

> it and just do whatever life calls for you to do.

>

> I'm sorry if this sounds insensitive, to you or anybody else, but you have

> to want to help yourself. The problem is that it's hard to get motivated to

> do it at first. Find out enough about the disease, but not to the extent

> that you micro-manage everything your doctor does for you. The more you

> know, the less scary it is. Then, find out what resources are available

> locally. And above all, don't stop doing things and living a normal life.

> Get plenty of rest, but balance it out with plenty of activity.

>

> I don't mean to come across as being uncaring or not understanding. I

> understand very well. But don't let yourself go down the slippery path of

> despair. That's a dead-end road if there ever was one, plus, it may actually

> worsen your health in the long run.

>

> If there is absolutely nothing where you live, like support groups, etc.,

> then maybe you could consider volunteering at a dialysis centre in a

> hospital for a while, or in something else. You can learn a lot by hanging

> around with the patients, and talking to the nurses.

>

> As a final thought, if you feel like you could sleep for days, try to do so.

> Let yourself get the rest.

>

> Pierre

>

> I don't understand the acceptance

>

> >,

> > This is to everyone here. I have been trying to read all of what's

> written to different people and keep hearing you talk about the fatigue and

> the amount of sleep you need. I really understand the fatigue. There are

> days that it feels like I could sleep for days literally. I can't accept

> that. I have too much to do with too little time as it is. How do you

> accept this and still have a positive attitude? I am so angry that I'm

> tired and I hurt all the time. I have 4 children who need me to be the mom

> I used to be. 2 teenage girls and 2 pre-teen boys who need me to be strong

> and keep them well centered. How do you tell your children that you're ill

> and keep them from worrying. My attitude right now is that I can't be a good

> mother and wife if I'm sick all the time. I have stated that if it ever

> comes down to dialisys, I won't do it. I want more out of life than that, I

> don't like beeing frightened all the time. PLEASE tell me how to get from

> where I'm at to where you

> > are at. How do you just let this disease take over like that. I don't

> want to be sick, but I certainly don't want to prolong life and be miserable

> while trying to sustain it. Boy, this is very trying. JULIE

> >

>

> 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

>

January 3, 2004

I forgot to add that your posts have caused me to really think

about my own feelings about this disease and it's affect on my life. I

just want to say thank you for all your questions, they are helping me

come to terms with things in my own head.

Amy

January 3, 2004

I forgot to add that your posts have caused me to really think

about my own feelings about this disease and it's affect on my life. I

just want to say thank you for all your questions, they are helping me

come to terms with things in my own head.

Amy

January 3, 2004

I forgot to add that your posts have caused me to really think

about my own feelings about this disease and it's affect on my life. I

just want to say thank you for all your questions, they are helping me

come to terms with things in my own head.

Amy

January 3, 2004

I'm just saying that heavy proteinuria with IgAN is the exception to the

rule. What I meant is that we hear more about it on internet groups like

this, simply because nephrotic syndrome is quite a bit more dramatic than

the IgAN itself that it's secondary to. Not permanent in the sense that for

most IgAN patients, it can be treated down to a more manageable level. Of

course, there are always exceptions, and people who don't respond to the

medications. But I don't discount the problems of those who do have it. I

know some FSGS patients who have nephrotic range proteinuria more or less

permanently, and they have to take prednisone for years at a time. Luckily,

most of the people in this group who are on prednisone only have to take it

for a relatively short while compared to that.

Pierre

Re: I don't understand the acceptance

> In a message dated 1/3/2004 11:05:33 AM Central Standard Time,

> pgl-groups@... writes:

> (and even that is not that common,

> except on the internet, and it's not a permanent condition

>

> I respectfully disagree - for me, such heavy proteinuria was a permanent

> condition prior to transplant. I was in nephrotic syndrome, in fact. Just

goes to

> show you how different individual clinical conditons are.

>

> Robin s

>

January 3, 2004

Pierre,

Thanks for taking the time to write an awesome post! There isn't a single

thing I could add to that.

I will never forget when a friend wrote and asked how was doing.

His line " so how is ? Remitted? Cured? Circling the drain and about

to go on dialysis? You know the drill on that one " would have been

entirely glib, if my friend hadn't been struggling with getting

transplanted while simulataneously trying to keep grades high enough for med

schools to take him seriously. Moreover, it brought me back in touch with

that part of me that did " know the drill " . Mundane as it is, sometimes you

just gotta cope.

Your point on generational differences is well taken. Until recently (at

least in my family) hospitals were places you went to die. I think that's

a corollary of " not going to the doctor until a small problem becomes a big

problem " . We've certainly had enough great stories around here lately to

dispell that myth!

Thanks again.

Cy

I don't understand the acceptance

>

> > ,

> > This is to everyone here. I have been trying to read all of what's

> written to different people and keep hearing you talk about the fatigue

and

> the amount of sleep you need. I really understand the fatigue. There are

> days that it feels like I could sleep for days literally. I can't accept

> that. I have too much to do with too little time as it is. How do you

> accept this and still have a positive attitude? I am so angry that I'm

> tired and I hurt all the time. I have 4 children who need me to be the

mom

> I used to be. 2 teenage girls and 2 pre-teen boys who need me to be

strong

> and keep them well centered. How do you tell your children that you're

ill

> and keep them from worrying. My attitude right now is that I can't be a

good

> mother and wife if I'm sick all the time. I have stated that if it ever

> comes down to dialisys, I won't do it. I want more out of life than that,

I

> don't like beeing frightened all the time. PLEASE tell me how to get from

> where I'm at to where you

> > are at. How do you just let this disease take over like that. I don't

> want to be sick, but I certainly don't want to prolong life and be

miserable

> while trying to sustain it. Boy, this is very trying. JULIE

> >

>

> 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

>

January 3, 2004

I just gotta weigh in on the importance of kids helping. This is a vital

life skill that transcends kidney disease. This is how you teach kids to

cope. In our household, it's the 13 year old kidney kid who shoulders his

fair share of the vacuuming, cooking, dusting, changing the oil in the car,

ect. (but clean his room? never in a million years. I happily settle for

a closed door!)

Cy

You will learn to delegate, I know I have. My kids help with laundry now

and they are only 6yrs and 9yrs. My youngest sorts and my oldest washes and

dries.

January 3, 2004

I absolutely agree with this too - kids shouldn't be held in a vacuum - they are

much more resilient and much more perceptive than we sometimes realise - truth

is always the best option although how it's delivered is also important!

Dave

Re: I don't understand the acceptance

In a message dated 1/3/2004 11:05:33 AM Central Standard Time,

pgl-groups@... writes:

The point of all this is to say that children are a lot more resilient than

we think.

This is something I've found to be true as well. I have a 20-year-old. She

has never known me without health problems - literally. You'd be surprised how

resilient they are, although the only change it has made in her life is that

she feels she has to go to work to help pay her fair share of the bills,

rather

than go to college. To her, this is normal stuff, not abnormal.

Robin s

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January 3, 2004

I agree with Cy that was an eye opening one - well done! I think I'm extremely

lucky so far - although I think acceptance would be easier if there's some kind

of path laid out - you know? ie - your results suggest that in 2/5/10/20 years

you will reach ESRF - thing is, it isn't that kind of disease really is it? :o/

Dave

Re: I don't understand the acceptance

Pierre,

Thanks for taking the time to write an awesome post! There isn't a single

thing I could add to that.

I will never forget when a friend wrote and asked how was doing.

His line " so how is ? Remitted? Cured? Circling the drain and about

to go on dialysis? You know the drill on that one " would have been

entirely glib, if my friend hadn't been struggling with getting

transplanted while simulataneously trying to keep grades high enough for med

schools to take him seriously. Moreover, it brought me back in touch with

that part of me that did " know the drill " . Mundane as it is, sometimes you

just gotta cope.

Your point on generational differences is well taken. Until recently (at

least in my family) hospitals were places you went to die. I think that's

a corollary of " not going to the doctor until a small problem becomes a big

problem " . We've certainly had enough great stories around here lately to

dispell that myth!

Thanks again.

Cy

----------

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January 3, 2004

Pierre,

Thanks for sharing all that! I can tell you put a lot of thought and feeling

into that post.

Dana