new to this

[Guest guest]

Hello Everyone,

My name is Colleen and I am new to this group. Why I have sought you out is

because my doctors think that keeping me ignorant about my disease is helpful.

BULL......

I am a Brittle Diabetic and have been on insulin for almost 20 years. But

have had diabetes since I was 19. I'm 53 now. My sugars have yo yoed between 24

and 590 for years. I never know what to expect. I go into insulin shock

CONSTANTLY. two days ago I had 4 insulin shocks, they wear me out. I am

extremely

sensitive to insulin they have said.

But onto what I really want to know. For the last couple of years I have been

feeling poorly, my legs burn constantly now. Some days so severe I cry and it

is very hard to sleep these days.. I was at the doctors 4 days ago and I over

heard them say something about spilling protein at 2,800 whatever that means.

I literally had to insist they tell me about the condition of my kidneys. A

very cold and heartless explanation was that I would need dialysis in about a

year and a half. WHAT, where did that come from. They insist I see a shrink to

deal with this. Forget the shrink I want to know what action I can take to

have the best and safest quality of life possible. Still no helpful answers

other

than they insist I see a shrink.

I travel solo a lot as I am a writer and I love to see America by road. Just

returned from The Badlands, Mt. Rushmore, Yellowstone, The Grand Tetons, the

list goes on. I sleep in my station wagon and eat out of the food I take with

me. I have no intention of going on dialysis ever. It is not my nature and

never has been. For me it will be taking away everything I love in life and that

is traveling America and doing it the hard way.

Please help me out, I am ready to sell everything and hit the road until the

time comes. Any impute is very, very much appreciated.

[Guest guest]

Well, Colleen, this may not be the list for you. This list is primarily for

people who, like me, have IgA disease of the kidneys. I'm not the list owner,

Pierre is, though.

Having said that, I agree that keeping you in the dark is generally not the

best option. I go so far as to read the medical journals whenever I get the

chance to get to a medical library, and I fool a lot of allied health people

into

thinking I work in medicine.

Robin s

http://www.bloggingnetwork.com/Blogs/Affil/?587

[Guest guest]

What is IgA. Explain. I thought it was for people in kidney failure?

[Guest guest]

I have been reading and reading and reading and searching the net. I only

know that I am in end stage renal failure. Is this web site not for that?

[Guest guest]

HI Colleen,

You are our second new member this week who has both IgAN and diabetes. I am

sorry you have been diagnosed with either, much less with both. That is a

pretty heavy burden, especially with the trouble you are having maintaining a

steady blood sugar and the insulin sensitivity.

I can imagine how much a shock it is to hear you are facing kidney trouble on

top of the diabetes. Did they come to the conclusion you have IgAN after a

biopsy? Spilling protein is certainly one of the symptoms, but more important

an indicator for dialysis is your serum creatinine and creatinine clearance.

Do you happen to know either one of those two numbers?

A good place to start is in reading through <A

HREF= " www.igan.ca " >www.igan.ca</A> which presents

information on IgAN from a patient's perspective. I think you will find that a

very

helpful place to start.

One caution on the doctors comment that you may be on dialysis in a year and

a half: I would not take that as gospel truth. There are a number of us who

are 20+ years and still not on dialysis. The best things you can do is of

course stabilize your blood sugar, control your blood pressure, and follow your

doctor's advise on diet. My advise is always to receive each day as a blessing

and to live life to the fullest extent, but don't live your life planning on a

year and a half until dialysis. Doctor's predictions are a guess and

individuals may not necessarily follow the expected path in terms of disease

progression.

Please know we are here to support you and to encourage you along the way.

Welcome again,

[Guest guest]

In a message dated 8/28/2003 7:51:45 PM Pacific Daylight Time,

excat20@... writes:

> What is IgA. Explain. I thought it was for people in kidney failure?

>

>

Diabetes is one of the primary causes of kidney failure, but this group is

one which focuses on IgAN.

From our sister site <A HREF= " www.igan.ca " >www.igan.ca</A>, this is an

explanation of IgAN courtesy of

Pierre, the founder of both this yahoo group as well as the igan.ca web site.

IgA nephropathy (or Berger's Disease) is an immune complex disorder (or

immune-system mediated disease) which causes IgA immune complexes to be

deposited

in the glomeruli (the filters in the kidneys), where they cause inflammation

(called glomerulonephritis), and eventual scarring of the glomeruli (called

glomerulosclerosis).

It is one of a group of kidney diseases which are sometimes referred to as

glomerulonephropathies, or simply, nephropathies - hence the name IgA

nephropathy. IgAN is thought to be the most common type of glomerulonephritis.

Despite

this, IgAN is not the most common cause of end-stage renal disease. According

to some estimates, IgAN accounts for about 10% of end-stage renal failure.

A very variable disease, it can present as an acute or a chronic form, and in

some cases it can be rapidly-progressive. The majority of patients have the

less aggressive chronic form, which may or may not progress to end-stage renal

disease (esrd) over many years (10 to 25 years or more). In the small number

of patients who have the rapidly-progressive form, it can lead to esrd within 5

years or less.

IgAN is suspected when protein and blood (visible or not) are found in the

urine, and is ultimately diagnosed by biopsy.

IgAN can affect people of all ages, but it is most commonly diagnosed from

adolescence until about the age of 40, and it is thought to be three times more

frequent in males than in females. Pediatric IgAN may appear in childhood to

adolescence (and into the early 20's) in its more acute presentation.

>

>

[Guest guest]

IgA Nephropathy is a disease of the kidneys caused primarily by

Immunoglobin A molecules plugging up the nephrons in our kidneys.

From your original description of your condition, it is likely that

your advancing end stage kidney disease is actually caused by the

diabetes that you have been suffering from.

Either way, as you approach end stage, and need to have dialysis to

survive, it doesn't really matter how you got there.

You might be better off trying to find a site that is more familiar

with diabetes and the effect on the kidneys. While we have some

members that have been diagnosed with both IgAN and diabetes, we

really don't have that much experience with the issues associated

with diabetes.

The important thing to keep in mind for you is that without some

kind of serious control of the diabetes, your end stage will

probably advance rapidly. It is important that you get that under

control as soon as possible.

Walt

> What is IgA. Explain. I thought it was for people in kidney

failure?

>

>

>

[Guest guest]

,

I have to go to the Doctor again today. I will get a copy of my last lab

report. Thank you for all the impute.

Colleen

[Guest guest]

,

The state of Texas helps me out with medical since no insurance will touch

me. You get so so help at best and everything is always a long waiting

procedure.

The doctors aren't all that helpful and after a two years in the system my

diabetes is no better off than when I started with them. They are a prescription

source and little else. I take high blood pressure medicine and have very

high cholesterol but unfortunately I have had bad reactions to every medicine

for

that so I am currently taking nothing.

I plan to check out the web site you suggested, again thank you

[Guest guest]

Walt,

Thank you and ditto on getting it under control. That is a serious fear and

after 30 plus years as a diabetic. My numbers are fluctuating worse now than

ever.

I will continue my search for a web site for people in my condition.

Thank you all,

Colleen

[Guest guest]

Hi ,

Well, all this info was fantastic but depressing. Yes, I have blood in my

urine as well.

I will look for a web site I guess more related to my condition which is due

totally to diabetes.

I guess I am just feeling, no I don't guess, I am scared and fearful and feel

very uninformed and kept in the dark by my doctors.

Colleen

[Guest guest]

Bummer Pierre but I understand

[Guest guest]

Hi Colleen,

I certainly do understand you feeling fearful and scared, and feeling

uninformed just makes that worse.

As Pierre said, you may find information more helpful in a diabetic

nephropathy group which might provide better guidance just because we are not

knowledgeable about diabetes in this group. As Pierre mentioned, you are more

than

welcome to hang around this group too, but please be aware that much of what we

discuss may not be applicable to your situation.

Perhaps a diabetes group could provide you with some suggestions/help on

stabilizing your blood sugar too. I just don't want to do you any disservice by

us not being informed about diabetes related issues.

[Guest guest]

As said, this group is specifically for people who have the kidney

disease called IgA nephropathy.

While some of us do have end stage renal disease and are on dialysis, it's

not an end-stage renal disease site (esrd), as such. There are other groups

that are more specifically for that. Look for " diabetic nephropathy " - which

is what it's called when diabetes affects the kidneys.

ESRD is pretty much the same no matter which kidney disease got you there,

including diabetic nephropathy, so, you're more than welcome to hang around.

The only thing is, this group has a lot of message traffic just with IgAN,

so we can't really discuss diabetes issues.

Pierre

Re: Re:New to this

> I have been reading and reading and reading and searching the net. I only

> know that I am in end stage renal failure. Is this web site not for that?

>

>

[Guest guest]

Hi,

I just wanted to say welcome. What a load to get dumped on you! It sounds

like a hit and run accident with the doc giving you dreadful news and not

explaining things... What exactly makes him think you'll be doing dialysis

so soon? As pointed out (and many folks here can attest!), docs are

frequently very wrong with that type of assessment.

Regardless what made the doc reach such a conclusion, the single best thing

you can do is track your own lab values (just like you do with blood sugar)

and know what they mean. I'm probably a little more obsessive than most,

but I keep almost all of my son's lab values in an Excell spread sheet so

that I can look at all of them all at once and determine trends. That way

the doc can't do a hit & run like he did with you because you'll be on top

of it.

I won't comment on whether we're the right place for you, because it's not

clear whether you have IgAN. If it turns out that the kidney damage is more

related to the diabetes or another cause, you may want to check out

www.kidneypatientguide.org.uk/site/BB.html. That's not an email list, but

there's a good crew of folks there - including some diabetes people.

It's sounds like you have a lifestyle many people would envy. I hope you

nothing interupts it for you.

Cy

Re: Re:New to this

> I have been reading and reading and reading and searching the net. I only

> know that I am in end stage renal failure. Is this web site not for that?

>

>

>

[Guest guest]

Colleen,

I just had a kidney transplant. While I was in the hospital for the

almost 2 1/2 weeks post transplant for some transplant related problems,

they did about 5 other transplants. Only one was living. The rest were

cadaver. Most of the recipients were either High blood pressure or

diabetes related. You may want to look at the statistics on the

diabetics who go to ESRF.

Travel. It just takes a little more planning, but you can arrange your

travel around dialysis centers. From what my Doc.s said when they were

talking to me about dialysis, they said that I could go or do anything I

wanted, just make sure I arranged my visits to the dialysis centers. I

also know a man who does peritoneal dialysis and because he does it

every night, he just takes it with him where ever he goes. And I mean

he can be in some really remote areas.

Anyway, I hope that this has helped in some way. By the way, Was this a

nephrologists who said this, or your diabetes DR? If with was not a

Nephrologists, then go to a nephrologists.

Re:New to this

Hello Everyone,

My name is Colleen and I am new to this group. Why I have sought you out

is

because my doctors think that keeping me ignorant about my disease is

helpful.

BULL......

I am a Brittle Diabetic and have been on insulin for almost 20 years.

But

have had diabetes since I was 19. I'm 53 now. My sugars have yo yoed

between 24

and 590 for years. I never know what to expect. I go into insulin shock

CONSTANTLY. two days ago I had 4 insulin shocks, they wear me out. I am

extremely

sensitive to insulin they have said.

But onto what I really want to know. For the last couple of years I have

been

feeling poorly, my legs burn constantly now. Some days so severe I cry

and it

is very hard to sleep these days.. I was at the doctors 4 days ago and I

over

heard them say something about spilling protein at 2,800 whatever that

means.

I literally had to insist they tell me about the condition of my

kidneys. A

very cold and heartless explanation was that I would need dialysis in

about a

year and a half. WHAT, where did that come from. They insist I see a

shrink to

deal with this. Forget the shrink I want to know what action I can take

to

have the best and safest quality of life possible. Still no helpful

answers other

than they insist I see a shrink.

I travel solo a lot as I am a writer and I love to see America by road.

Just

returned from The Badlands, Mt. Rushmore, Yellowstone, The Grand Tetons,

the

list goes on. I sleep in my station wagon and eat out of the food I

take with

me. I have no intention of going on dialysis ever. It is not my nature

and

never has been. For me it will be taking away everything I love in life

and that

is traveling America and doing it the hard way.

Please help me out, I am ready to sell everything and hit the road until

the

time comes. Any impute is very, very much appreciated.

[Guest guest]

Hi ,

Again I have no insurance. Very few options are available to me. The state of

Texas doesn't even offer a pump for me. Let alone any transplant or the

operation to have that artificial vein put in my arm for dialysis. The only

option

I have left as I see it is a clinical trial.

I don't mean to sound like the grim reaper. But so far I have been batting

zero and the one thing I need the most is time which I am running out of.

You all seem like such incredible people, its very touching to me.

Colleen

[Guest guest]

What is ESRF.

I've read so much, I'm getting lost in medicaless.

I live on 1,100 dollars a month. Very, very little is left over for anything.

Its barely survival money.

Colleen

[Guest guest]

Good morning to all of you in kidney land today.

Pierre, I have to start by telling you that this is yet another of your gems!

Very sage advise you gave to Colleen. Colleen I do want to echo what Pierre

and said. It would be very good for you to talk to a social worker who

can assist you with finding the appropriate medical coverage through the

state. There is help out there, and a social worker is the right place to

start.

They will be an advocate for you.

Now, I have a question for all of you. The past month or so I have been

having a terrible time with sleeping. Anyone else have that problem? It seems

like I go through several days of insomnia, then several days of needing ten or

eleven hours of sleep a day. It is getting frustrating on the nights that I

can't sleep. I don't know if it is related to IgAN or not, but whatever the

cause, I wish it would go away :-)

In a message dated 8/30/2003 7:54:20 AM Pacific Daylight Time,

pgl-groups@... writes:

> >Hi Colleen,

> >

> >Many of us face our first serious health problems as we approach end-stage

> >renal disease - and it's always a hard thing to accept. The abbreviation

> for

> >this is ESRD, or sometimes ESRF (where the F stands for failure). It's all

> >the same thing, and it's when dialysis or transplant is needed to stay

> >alive. As I said before, it doesn't matter what kidney disease or other

> >condition got you there. In terms of treating it, as far as the

> >nephrologists are concerned, it's ESRD, and how you got there is only of

> >secondary interest to them. This is normal, because at that point they are

> >treating ESRD.

> >

> >It's hard to face serious health problems, but we all have to, and then we

> >do the things that have to be done to deal with it, both emotionally and

> >medically. It's common to feel so alone, and like nobody could possibly

> >understand. We all go through that sometime.

> >

> >At this point, it appears you've just been told to expect it in about a

> >year. I was told 18 months, about 18 months before I actually started

> >dialysis. It's all a bit bewildering to you now, but, things will fall

> into

> >place as the year goes by. Dialysis and transplants are arranged, one way

> or

> >another. You will not be refused treatment because of your low income or

> >lack of insurance. That's the way it works with ESRD. Even in the U.S., I

> >think it's the only disease for which there is free, universal care (what

> >combination of state and federal programs or agencies that pay for it

> varies

> >from state to state). So, you don't have to worry about that. Ask your

> >nephrologist to put you in touch with the people who deal with that -

> >usually a social worker where at a hospital where dialysis and transplant

> >are performed.

> >

> >Financially, things could be worse. I live on $900 Canadian a month.

> >Luckily, my wife's salary covers the rent. But it's not easy. 99.99% of

> the

> >hundreds of people in my city alone live on some kind of disability

> benefit,

> >and we all manage to make it, somehow. We're all in the same boat,

> although

> >of course, those who have income from a disability insurance plan they had

> >at work are a little better off.

> >

> >I know it's hard, but, you have to take some control of the situation. The

> >best way to start, is to talk to your nephrologist, or, if he or she isn't

> >really the talking type, get a family doctor you can see more regularly.

> >Make sure he or she is aware you are having problems dealing with this.

> They

> >can often help themselves, or put you in touch with the agencies that can.

> >

> >I hope this helps. It's really important to start doing things that make

> you

> >feel you have some control over the situation.

> >

> >Pierre

> >

>

>

>

[Guest guest]

Colleen,

I think you need to go to your local Medicare/medicaid offices and talk to them.

Re: Re:New to this

Hi ,

Again I have no insurance. Very few options are available to me. The state of

Texas doesn't even offer a pump for me. Let alone any transplant or the

operation to have that artificial vein put in my arm for dialysis. The only

option

I have left as I see it is a clinical trial.

I don't mean to sound like the grim reaper. But so far I have been batting

zero and the one thing I need the most is time which I am running out of.

You all seem like such incredible people, its very touching to me.

Colleen

[Guest guest]

Hi Colleen,

Many of us face our first serious health problems as we approach end-stage

renal disease - and it's always a hard thing to accept. The abbreviation for

this is ESRD, or sometimes ESRF (where the F stands for failure). It's all

the same thing, and it's when dialysis or transplant is needed to stay

alive. As I said before, it doesn't matter what kidney disease or other

condition got you there. In terms of treating it, as far as the

nephrologists are concerned, it's ESRD, and how you got there is only of

secondary interest to them. This is normal, because at that point they are

treating ESRD.

It's hard to face serious health problems, but we all have to, and then we

do the things that have to be done to deal with it, both emotionally and

medically. It's common to feel so alone, and like nobody could possibly

understand. We all go through that sometime.

At this point, it appears you've just been told to expect it in about a

year. I was told 18 months, about 18 months before I actually started

dialysis. It's all a bit bewildering to you now, but, things will fall into

place as the year goes by. Dialysis and transplants are arranged, one way or

another. You will not be refused treatment because of your low income or

lack of insurance. That's the way it works with ESRD. Even in the U.S., I

think it's the only disease for which there is free, universal care (what

combination of state and federal programs or agencies that pay for it varies

from state to state). So, you don't have to worry about that. Ask your

nephrologist to put you in touch with the people who deal with that -

usually a social worker where at a hospital where dialysis and transplant

are performed.

Financially, things could be worse. I live on $900 Canadian a month.

Luckily, my wife's salary covers the rent. But it's not easy. 99.99% of the

hundreds of people in my city alone live on some kind of disability benefit,

and we all manage to make it, somehow. We're all in the same boat, although

of course, those who have income from a disability insurance plan they had

at work are a little better off.

I know it's hard, but, you have to take some control of the situation. The

best way to start, is to talk to your nephrologist, or, if he or she isn't

really the talking type, get a family doctor you can see more regularly.

Make sure he or she is aware you are having problems dealing with this. They

can often help themselves, or put you in touch with the agencies that can.

I hope this helps. It's really important to start doing things that make you

feel you have some control over the situation.

Pierre

Re: Re:New to this

> What is ESRF.

>

> I've read so much, I'm getting lost in medicaless.

>

> I live on 1,100 dollars a month. Very, very little is left over for

anything.

> Its barely survival money.

>

> Colleen

>

>

[Guest guest]

This is a resend. It doesn't seem to have gotten through the first time.

Pierre

Re: Re:New to this

> Hi Colleen,

>

> Many of us face our first serious health problems as we approach end-stage

> renal disease - and it's always a hard thing to accept. The abbreviation

for

> this is ESRD, or sometimes ESRF (where the F stands for failure). It's all

> the same thing, and it's when dialysis or transplant is needed to stay

> alive. As I said before, it doesn't matter what kidney disease or other

> condition got you there. In terms of treating it, as far as the

> nephrologists are concerned, it's ESRD, and how you got there is only of

> secondary interest to them. This is normal, because at that point they are

> treating ESRD.

>

> It's hard to face serious health problems, but we all have to, and then we

> do the things that have to be done to deal with it, both emotionally and

> medically. It's common to feel so alone, and like nobody could possibly

> understand. We all go through that sometime.

>

> At this point, it appears you've just been told to expect it in about a

> year. I was told 18 months, about 18 months before I actually started

> dialysis. It's all a bit bewildering to you now, but, things will fall

into

> place as the year goes by. Dialysis and transplants are arranged, one way

or

> another. You will not be refused treatment because of your low income or

> lack of insurance. That's the way it works with ESRD. Even in the U.S., I

> think it's the only disease for which there is free, universal care (what

> combination of state and federal programs or agencies that pay for it

varies

> from state to state). So, you don't have to worry about that. Ask your

> nephrologist to put you in touch with the people who deal with that -

> usually a social worker where at a hospital where dialysis and transplant

> are performed.

>

> Financially, things could be worse. I live on $900 Canadian a month.

> Luckily, my wife's salary covers the rent. But it's not easy. 99.99% of

the

> hundreds of people in my city alone live on some kind of disability

benefit,

> and we all manage to make it, somehow. We're all in the same boat,

although

> of course, those who have income from a disability insurance plan they had

> at work are a little better off.

>

> I know it's hard, but, you have to take some control of the situation. The

> best way to start, is to talk to your nephrologist, or, if he or she isn't

> really the talking type, get a family doctor you can see more regularly.

> Make sure he or she is aware you are having problems dealing with this.

They

> can often help themselves, or put you in touch with the agencies that can.

>

> I hope this helps. It's really important to start doing things that make

you

> feel you have some control over the situation.

>

> Pierre

>

[Guest guest]

---

Dear ,

Sorry that you have had some problems with sleeping these days....

I am lucky not to have such sleeping problems at all or hardly ever...

( even when I need to go to the bathroom during the night)

I think that I had sleeping problems only when I was very,

very stressed or worried or when I had to work till late night hours

( good for me it happens only occasionally)

Maybe a cup of hot milk, reading some not very complicated book, a

bath or hearing to some relaxing kind of music could be of any help ?

Hope you will sleep well today Sweet dreams .

Elvira

In iga-nephropathy , W4JC@a... wrote:

> Good morning to all of you in kidney land today.

>

> Pierre, I have to start by telling you that this is yet another of

your gems!

> Very sage advise you gave to Colleen. Colleen I do want to echo

what Pierre

> and said. It would be very good for you to talk to a social

worker who

> can assist you with finding the appropriate medical coverage

through the

> state. There is help out there, and a social worker is the right

place to start.

> They will be an advocate for you.

>

> Now, I have a question for all of you. The past month or so I have

been

> having a terrible time with sleeping. Anyone else have that

problem? It seems

> like I go through several days of insomnia, then several days of

needing ten or

> eleven hours of sleep a day. It is getting frustrating on the

nights that I

> can't sleep. I don't know if it is related to IgAN or not, but

whatever the

> cause, I wish it would go away :-)

>

>

>

> In a message dated 8/30/2003 7:54:20 AM Pacific Daylight Time,

> pgl-groups@s... writes:

>

> > >Hi Colleen,

> > >

> > >Many of us face our first serious health problems as we approach

end-stage

> > >renal disease - and it's always a hard thing to accept. The

abbreviation

> > for

> > >this is ESRD, or sometimes ESRF (where the F stands for

failure). It's all

> > >the same thing, and it's when dialysis or transplant is needed

to stay

> > >alive. As I said before, it doesn't matter what kidney disease

or other

> > >condition got you there. In terms of treating it, as far as the

> > >nephrologists are concerned, it's ESRD, and how you got there is

only of

> > >secondary interest to them. This is normal, because at that

point they are

> > >treating ESRD.

> > >

> > >It's hard to face serious health problems, but we all have to,

and then we

> > >do the things that have to be done to deal with it, both

emotionally and

> > >medically. It's common to feel so alone, and like nobody could

possibly

> > >understand. We all go through that sometime.

> > >

> > >At this point, it appears you've just been told to expect it in

about a

> > >year. I was told 18 months, about 18 months before I actually

started

> > >dialysis. It's all a bit bewildering to you now, but, things

will fall

> > into

> > >place as the year goes by. Dialysis and transplants are

arranged, one way

> > or

> > >another. You will not be refused treatment because of your low

income or

> > >lack of insurance. That's the way it works with ESRD. Even in

the U.S., I

> > >think it's the only disease for which there is free, universal

care (what

> > >combination of state and federal programs or agencies that pay

for it

> > varies

> > >from state to state). So, you don't have to worry about that.

Ask your

> > >nephrologist to put you in touch with the people who deal with

that -

> > >usually a social worker where at a hospital where dialysis and

transplant

> > >are performed.

> > >

> > >Financially, things could be worse. I live on $900 Canadian a

month.

> > >Luckily, my wife's salary covers the rent. But it's not easy.

99.99% of

> > the

> > >hundreds of people in my city alone live on some kind of

disability

> > benefit,

> > >and we all manage to make it, somehow. We're all in the same

boat,

> > although

> > >of course, those who have income from a disability insurance

plan they had

> > >at work are a little better off.

> > >

> > >I know it's hard, but, you have to take some control of the

situation. The

> > >best way to start, is to talk to your nephrologist, or, if he or

she isn't

> > >really the talking type, get a family doctor you can see more

regularly.

> > >Make sure he or she is aware you are having problems dealing

with this.

> > They

> > >can often help themselves, or put you in touch with the agencies

that can.

> > >

> > >I hope this helps. It's really important to start doing things

that make

> > you

> > >feel you have some control over the situation.

> > >

> > >Pierre

> > >

> >

> >

> >

>

>

>

>

[Guest guest]

---

Hi

I am really very sorry that you have had some sleeping problems

lately...

I am rather lucky not to have such problems at all ( even when I need

to go to the bathroom during the night)

I think that I had such problems only when I was very very stressed,

worried or too tired ( after working late night houres which don't

happen very often).

Maybe a cup of hot milk, reading, listening to some relaxing music

could be of any hepl ???

Hope you will have seet dreams tonight

Take care,

Elvira

In iga-nephropathy , W4JC@a... wrote:

> Good morning to all of you in kidney land today.

>

> Pierre, I have to start by telling you that this is yet another of

your gems!

> Very sage advise you gave to Colleen. Colleen I do want to echo

what Pierre

> and said. It would be very good for you to talk to a social

worker who

> can assist you with finding the appropriate medical coverage

through the

> state. There is help out there, and a social worker is the right

place to start.

> They will be an advocate for you.

>

> Now, I have a question for all of you. The past month or so I have

been

> having a terrible time with sleeping. Anyone else have that

problem? It seems

> like I go through several days of insomnia, then several days of

needing ten or

> eleven hours of sleep a day. It is getting frustrating on the

nights that I

> can't sleep. I don't know if it is related to IgAN or not, but

whatever the

> cause, I wish it would go away :-)

>

>

>

> In a message dated 8/30/2003 7:54:20 AM Pacific Daylight Time,

> pgl-groups@s... writes:

>

> > >Hi Colleen,

> > >

> > >Many of us face our first serious health problems as we approach

end-stage

> > >renal disease - and it's always a hard thing to accept. The

abbreviation

> > for

> > >this is ESRD, or sometimes ESRF (where the F stands for

failure). It's all

> > >the same thing, and it's when dialysis or transplant is needed

to stay

> > >alive. As I said before, it doesn't matter what kidney disease

or other

> > >condition got you there. In terms of treating it, as far as the

> > >nephrologists are concerned, it's ESRD, and how you got there is

only of

> > >secondary interest to them. This is normal, because at that

point they are

> > >treating ESRD.

> > >

> > >It's hard to face serious health problems, but we all have to,

and then we

> > >do the things that have to be done to deal with it, both

emotionally and

> > >medically. It's common to feel so alone, and like nobody could

possibly

> > >understand. We all go through that sometime.

> > >

> > >At this point, it appears you've just been told to expect it in

about a

> > >year. I was told 18 months, about 18 months before I actually

started

> > >dialysis. It's all a bit bewildering to you now, but, things

will fall

> > into

> > >place as the year goes by. Dialysis and transplants are

arranged, one way

> > or

> > >another. You will not be refused treatment because of your low

income or

> > >lack of insurance. That's the way it works with ESRD. Even in

the U.S., I

> > >think it's the only disease for which there is free, universal

care (what

> > >combination of state and federal programs or agencies that pay

for it

> > varies

> > >from state to state). So, you don't have to worry about that.

Ask your

> > >nephrologist to put you in touch with the people who deal with

that -

> > >usually a social worker where at a hospital where dialysis and

transplant

> > >are performed.

> > >

> > >Financially, things could be worse. I live on $900 Canadian a

month.

> > >Luckily, my wife's salary covers the rent. But it's not easy.

99.99% of

> > the

> > >hundreds of people in my city alone live on some kind of

disability

> > benefit,

> > >and we all manage to make it, somehow. We're all in the same

boat,

> > although

> > >of course, those who have income from a disability insurance

plan they had

> > >at work are a little better off.

> > >

> > >I know it's hard, but, you have to take some control of the

situation. The

> > >best way to start, is to talk to your nephrologist, or, if he or

she isn't

> > >really the talking type, get a family doctor you can see more

regularly.

> > >Make sure he or she is aware you are having problems dealing

with this.

> > They

> > >can often help themselves, or put you in touch with the agencies

that can.

> > >

> > >I hope this helps. It's really important to start doing things

that make

> > you

> > >feel you have some control over the situation.

> > >

> > >Pierre

> > >

> >

> >

> >

>

>

>

>

[Guest guest]

Thanks Connie!

I am hoping it is just the stress of having my daughter off to college, and

that I will be sleeping like a baby again soon!

Welcome to the web on weekends too :-)

In a message dated 8/31/2003 5:21:18 PM Pacific Daylight Time,

csink@... writes:

> I'm sorry to hear that you're not sleeping. I hate to even say this, but

> many of my friends who are going through the dreaded change of life have

> experienced the sleep problems that you describe. Check with your Doctor and

see

> what he says about it. Also, I remember that you just sent your daughter

> away to college for this year, possibly it's just the stress of getting her

> ready to go that has changed your sleep patterns. Hopefully you will get back

> into your normal sleep routine soon, if not you may want to see your Doctor.

>

>