Re: Well not what I expected...

[Guest guest]

Hi Amy,

You can vent here any time you need to. I am sorry you did not get the Pred

dose reduced. I was so hopeful your Neph would agree to go a step further in

your wean.

The good news is that your labs are great! I would love to trade with

you...well, no, I take that back. How about if we both have your labs? I

could

not let you have mine :-)

I am thrilled that your protein spill is so good and that your creatinine is

stable.

On the ESRD, well, I disagree with that. I think he made a mistake that he

carried through his paperwork. 2.2 is certainly not ESRD.

We'll take the good news and rejoice in that :-)

I hope the Melatonin helps you get some good sleep Amy.

In a message dated 4/4/2005 8:22:42 P.M. Pacific Daylight Time,

purrfect@... writes:

but it could have been worse I guess. Saw my neph for another follow up

today and had hopes that my pred dose would be lowered. No such luck I

guess..... My labs are stable and stable is good, creatinine at 2.2, protien

spill

at 200mg/24hr, everything else was in good ranges so I was very happy. Well

my neph went over all this, talked about my insomnia (I'm going to try

melatonin for it), looked over my b/p record, then made out my lab request for

my

next appointment. I was sort of expecting a reduction in the pred since

everything is stable again. I asked him about it only to get the answer " Well

it's such a small dose you are on....and you've been on for 18 months

now.....lets keep you there and see how things look in Sept once you've been on

for 2

years " (sound familiar ?) I asked straight out " So do you think I'm pred

dependent now? " He didn't give me a direct answer and just said " I'm sure

you'll come off it eventually " Ya like when I start on dialysis right?

*sigh* I guess if it's keeping me stable then it's still better than having to

be

on dialysis. I think having all the results from the endoscopy and gastric

emptying scan made him feel more comfortable keeping me on it since now he

knows the pred isn't causing the nausea I have been having. At my last

appointment in Jan all he could talk about was how we had to get me off due to

the

stomach problems I was having.

The other downer part of this visit was when he handed me all of my lab

forms and my sheet to take to the receptionist to check out with....all my

prior

visits had IgAN listed as my diagnosis....today all of them read ESRD in the

diagnosis space.....I think it was a major shock to me to see it in writing

like that, though it shouldn't have been. I could use a good stiff drink

right about now.

Thanks for letting me vent,

Amy G.

[Guest guest]

Hi Amy,

I am so sorry if I minimized the Prednisone disappointment. I really did not

mean to do that. I know you have suffered through many many months on

Prednisone and I was also hopeful that you could be further weaned. I do hate

for

you to have to stay on it. You are on 10 mg right? I really don't trust my

memory these days.

I am happy that your labs are stable of course, but I know that was

overshadowed by not getting your Pred lowered. I pray you are not Pred

dependent

Amy.

I am praying for you to get a good night's sleep tonight dear Amy.

Sweet dreams!

In a message dated 4/4/2005 9:27:21 P.M. Pacific Daylight Time,

purrfect@... writes:

The pred thing really bothers me though. I mean, if he didn't think I was

pred dependent why didn't he reduce my dose...heaven knows I've been on it

long enough. If he does feel I'm pred dependent I wish he would just come

right out and say it so I can just live with the fact. Right now I feel like I

have to just accept that I'm pred dependent and if I manage to come off it I

will be pleasantly surprised, I can't live with this " Maybe at your next

visit " hope dashing stuff. It's been " maybe at your next visit " for over a

year

now....

I'm also hoping for a good nights sleep...instead of a glass of wine I'm

having a small glass of chocolate soy milk. :-)

Amy G.

[Guest guest]

Hi Amy,

I am so sorry if I minimized the Prednisone disappointment. I really did not

mean to do that. I know you have suffered through many many months on

Prednisone and I was also hopeful that you could be further weaned. I do hate

for

you to have to stay on it. You are on 10 mg right? I really don't trust my

memory these days.

I am happy that your labs are stable of course, but I know that was

overshadowed by not getting your Pred lowered. I pray you are not Pred

dependent

Amy.

I am praying for you to get a good night's sleep tonight dear Amy.

Sweet dreams!

In a message dated 4/4/2005 9:27:21 P.M. Pacific Daylight Time,

purrfect@... writes:

The pred thing really bothers me though. I mean, if he didn't think I was

pred dependent why didn't he reduce my dose...heaven knows I've been on it

long enough. If he does feel I'm pred dependent I wish he would just come

right out and say it so I can just live with the fact. Right now I feel like I

have to just accept that I'm pred dependent and if I manage to come off it I

will be pleasantly surprised, I can't live with this " Maybe at your next

visit " hope dashing stuff. It's been " maybe at your next visit " for over a

year

now....

I'm also hoping for a good nights sleep...instead of a glass of wine I'm

having a small glass of chocolate soy milk. :-)

Amy G.

[Guest guest]

Hi Amy,

I am so sorry if I minimized the Prednisone disappointment. I really did not

mean to do that. I know you have suffered through many many months on

Prednisone and I was also hopeful that you could be further weaned. I do hate

for

you to have to stay on it. You are on 10 mg right? I really don't trust my

memory these days.

I am happy that your labs are stable of course, but I know that was

overshadowed by not getting your Pred lowered. I pray you are not Pred

dependent

Amy.

I am praying for you to get a good night's sleep tonight dear Amy.

Sweet dreams!

In a message dated 4/4/2005 9:27:21 P.M. Pacific Daylight Time,

purrfect@... writes:

The pred thing really bothers me though. I mean, if he didn't think I was

pred dependent why didn't he reduce my dose...heaven knows I've been on it

long enough. If he does feel I'm pred dependent I wish he would just come

right out and say it so I can just live with the fact. Right now I feel like I

have to just accept that I'm pred dependent and if I manage to come off it I

will be pleasantly surprised, I can't live with this " Maybe at your next

visit " hope dashing stuff. It's been " maybe at your next visit " for over a

year

now....

I'm also hoping for a good nights sleep...instead of a glass of wine I'm

having a small glass of chocolate soy milk. :-)

Amy G.

[Guest guest]

you know I would give you my labs in a heartbeat if I only could! :-) I

am taking the good news of the stability to heart. After all if one of my

doctors associates would have gotten my case I might be on dialysis right now

since a few felt I was untreatable.

The pred thing really bothers me though. I mean, if he didn't think I was pred

dependent why didn't he reduce my dose...heaven knows I've been on it long

enough. If he does feel I'm pred dependent I wish he would just come right out

and say it so I can just live with the fact. Right now I feel like I have to

just accept that I'm pred dependent and if I manage to come off it I will be

pleasantly surprised, I can't live with this " Maybe at your next visit " hope

dashing stuff. It's been " maybe at your next visit " for over a year now....

I'm also hoping for a good nights sleep...instead of a glass of wine I'm having

a small glass of chocolate soy milk. :-)

Amy G.

Re: Well not what I expected...

Hi Amy,

You can vent here any time you need to. I am sorry you did not get the Pred

dose reduced. I was so hopeful your Neph would agree to go a step further in

your wean.

The good news is that your labs are great! I would love to trade with

you...well, no, I take that back. How about if we both have your labs? I

could

not let you have mine :-)

I am thrilled that your protein spill is so good and that your creatinine is

stable.

On the ESRD, well, I disagree with that. I think he made a mistake that he

carried through his paperwork. 2.2 is certainly not ESRD.

We'll take the good news and rejoice in that :-)

I hope the Melatonin helps you get some good sleep Amy.

In a message dated 4/4/2005 8:22:42 P.M. Pacific Daylight Time,

purrfect@... writes:

but it could have been worse I guess. Saw my neph for another follow up

today and had hopes that my pred dose would be lowered. No such luck I

guess..... My labs are stable and stable is good, creatinine at 2.2, protien

spill

at 200mg/24hr, everything else was in good ranges so I was very happy. Well

my neph went over all this, talked about my insomnia (I'm going to try

melatonin for it), looked over my b/p record, then made out my lab request

for my

next appointment. I was sort of expecting a reduction in the pred since

everything is stable again. I asked him about it only to get the answer

" Well

it's such a small dose you are on....and you've been on for 18 months

now.....lets keep you there and see how things look in Sept once you've been

on for 2

years " (sound familiar ?) I asked straight out " So do you think I'm

pred

dependent now? " He didn't give me a direct answer and just said " I'm sure

you'll come off it eventually " Ya like when I start on dialysis right?

*sigh* I guess if it's keeping me stable then it's still better than having

to be

on dialysis. I think having all the results from the endoscopy and gastric

emptying scan made him feel more comfortable keeping me on it since now he

knows the pred isn't causing the nausea I have been having. At my last

appointment in Jan all he could talk about was how we had to get me off due

to the

stomach problems I was having.

The other downer part of this visit was when he handed me all of my lab

forms and my sheet to take to the receptionist to check out with....all my

prior

visits had IgAN listed as my diagnosis....today all of them read ESRD in the

diagnosis space.....I think it was a major shock to me to see it in writing

like that, though it shouldn't have been. I could use a good stiff drink

right about now.

Thanks for letting me vent,

Amy G.

[Guest guest]

How disappointing! I know your struggles with pred have been enormous.

Hopefully, there will be better news in September. At least he's

provisioned you against further let down re pred until then.

It's hard not to take the billing codes for diagnoses they put down on the

sheets seriously. I'm always explaining to folks that they shouldn't be

taken as gospil, but as the jargon that gets the doc paid. Still, it's hard

to remember that when it's in front of you in black and white. I agree with

. 2.2 does not equal ESRD.

Cy

Well not what I expected...

>

> but it could have been worse I guess. Saw my neph for another follow up

today and had hopes that my pred dose would be lowered. No such luck I

guess..... My labs are stable and stable is good, creatinine at 2.2,

protien spill at 200mg/24hr, everything else was in good ranges so I was

very happy. Well my neph went over all this, talked about my insomnia (I'm

going to try melatonin for it), looked over my b/p record, then made out my

lab request for my next appointment. I was sort of expecting a reduction in

the pred since everything is stable again. I asked him about it only to get

the answer " Well it's such a small dose you are on....and you've been on for

18 months now.....lets keep you there and see how things look in Sept once

you've been on for 2 years " (sound familiar ?) I asked straight out

" So do you think I'm pred dependent now? " He didn't give me a direct answer

and just said " I'm sure you'll come off it eventually " Ya like when I start

on dialysis right? *sigh* I guess if it's keeping me stable then it's

still better than having to be on dialysis. I think having all the results

from the endoscopy and gastric emptying scan made him feel more comfortable

keeping me on it since now he knows the pred isn't causing the nausea I have

been having. At my last appointment in Jan all he could talk about was how

we had to get me off due to the stomach problems I was having.

>

> The other downer part of this visit was when he handed me all of my lab

forms and my sheet to take to the receptionist to check out with....all my

prior visits had IgAN listed as my diagnosis....today all of them read ESRD

in the diagnosis space.....I think it was a major shock to me to see it in

writing like that, though it shouldn't have been. I could use a good stiff

drink right about now.

>

> Thanks for letting me vent,

> Amy G.

>

>

[Guest guest]

How disappointing! I know your struggles with pred have been enormous.

Hopefully, there will be better news in September. At least he's

provisioned you against further let down re pred until then.

It's hard not to take the billing codes for diagnoses they put down on the

sheets seriously. I'm always explaining to folks that they shouldn't be

taken as gospil, but as the jargon that gets the doc paid. Still, it's hard

to remember that when it's in front of you in black and white. I agree with

. 2.2 does not equal ESRD.

Cy

Well not what I expected...

>

> but it could have been worse I guess. Saw my neph for another follow up

today and had hopes that my pred dose would be lowered. No such luck I

guess..... My labs are stable and stable is good, creatinine at 2.2,

protien spill at 200mg/24hr, everything else was in good ranges so I was

very happy. Well my neph went over all this, talked about my insomnia (I'm

going to try melatonin for it), looked over my b/p record, then made out my

lab request for my next appointment. I was sort of expecting a reduction in

the pred since everything is stable again. I asked him about it only to get

the answer " Well it's such a small dose you are on....and you've been on for

18 months now.....lets keep you there and see how things look in Sept once

you've been on for 2 years " (sound familiar ?) I asked straight out

" So do you think I'm pred dependent now? " He didn't give me a direct answer

and just said " I'm sure you'll come off it eventually " Ya like when I start

on dialysis right? *sigh* I guess if it's keeping me stable then it's

still better than having to be on dialysis. I think having all the results

from the endoscopy and gastric emptying scan made him feel more comfortable

keeping me on it since now he knows the pred isn't causing the nausea I have

been having. At my last appointment in Jan all he could talk about was how

we had to get me off due to the stomach problems I was having.

>

> The other downer part of this visit was when he handed me all of my lab

forms and my sheet to take to the receptionist to check out with....all my

prior visits had IgAN listed as my diagnosis....today all of them read ESRD

in the diagnosis space.....I think it was a major shock to me to see it in

writing like that, though it shouldn't have been. I could use a good stiff

drink right about now.

>

> Thanks for letting me vent,

> Amy G.

>

>

[Guest guest]

How disappointing! I know your struggles with pred have been enormous.

Hopefully, there will be better news in September. At least he's

provisioned you against further let down re pred until then.

It's hard not to take the billing codes for diagnoses they put down on the

sheets seriously. I'm always explaining to folks that they shouldn't be

taken as gospil, but as the jargon that gets the doc paid. Still, it's hard

to remember that when it's in front of you in black and white. I agree with

. 2.2 does not equal ESRD.

Cy

Well not what I expected...

>

> but it could have been worse I guess. Saw my neph for another follow up

today and had hopes that my pred dose would be lowered. No such luck I

guess..... My labs are stable and stable is good, creatinine at 2.2,

protien spill at 200mg/24hr, everything else was in good ranges so I was

very happy. Well my neph went over all this, talked about my insomnia (I'm

going to try melatonin for it), looked over my b/p record, then made out my

lab request for my next appointment. I was sort of expecting a reduction in

the pred since everything is stable again. I asked him about it only to get

the answer " Well it's such a small dose you are on....and you've been on for

18 months now.....lets keep you there and see how things look in Sept once

you've been on for 2 years " (sound familiar ?) I asked straight out

" So do you think I'm pred dependent now? " He didn't give me a direct answer

and just said " I'm sure you'll come off it eventually " Ya like when I start

on dialysis right? *sigh* I guess if it's keeping me stable then it's

still better than having to be on dialysis. I think having all the results

from the endoscopy and gastric emptying scan made him feel more comfortable

keeping me on it since now he knows the pred isn't causing the nausea I have

been having. At my last appointment in Jan all he could talk about was how

we had to get me off due to the stomach problems I was having.

>

> The other downer part of this visit was when he handed me all of my lab

forms and my sheet to take to the receptionist to check out with....all my

prior visits had IgAN listed as my diagnosis....today all of them read ESRD

in the diagnosis space.....I think it was a major shock to me to see it in

writing like that, though it shouldn't have been. I could use a good stiff

drink right about now.

>

> Thanks for letting me vent,

> Amy G.

>

>

[Guest guest]

I'm actually down to 5mg daily now. I've been at this dose since January.

The last time I was at 5mg for two months my labs took a nosedive, which is why,

when I saw great labs this time round, I automatically figured I'd be weaned

further. It took bumping me back to 10mg for 3 months then starting the wean

slowly again for things to stay stable. I don't really understand the thinking

on this one but I'll trust that he is doing the right thing....had I been with

one of his associates who felt I was untreatable I wouldn't have been treated

with the pred at all and would probably be on dialysis right now so I guess I

have to trust his gut feeling on this one....as much as I hate the fact.

Amy G.

Re: Well not what I expected...

Hi Amy,

I am so sorry if I minimized the Prednisone disappointment. I really did not

mean to do that. I know you have suffered through many many months on

Prednisone and I was also hopeful that you could be further weaned. I do

hate for

you to have to stay on it. You are on 10 mg right? I really don't trust my

memory these days.

I am happy that your labs are stable of course, but I know that was

overshadowed by not getting your Pred lowered. I pray you are not Pred

dependent

Amy.

I am praying for you to get a good night's sleep tonight dear Amy.

Sweet dreams!

In a message dated 4/4/2005 9:27:21 P.M. Pacific Daylight Time,

purrfect@... writes:

The pred thing really bothers me though. I mean, if he didn't think I was

pred dependent why didn't he reduce my dose...heaven knows I've been on it

long enough. If he does feel I'm pred dependent I wish he would just come

right out and say it so I can just live with the fact. Right now I feel like

I

have to just accept that I'm pred dependent and if I manage to come off it I

will be pleasantly surprised, I can't live with this " Maybe at your next

visit " hope dashing stuff. It's been " maybe at your next visit " for over a

year

now....

I'm also hoping for a good nights sleep...instead of a glass of wine I'm

having a small glass of chocolate soy milk. :-)

Amy G.

[Guest guest]

I'm actually down to 5mg daily now. I've been at this dose since January.

The last time I was at 5mg for two months my labs took a nosedive, which is why,

when I saw great labs this time round, I automatically figured I'd be weaned

further. It took bumping me back to 10mg for 3 months then starting the wean

slowly again for things to stay stable. I don't really understand the thinking

on this one but I'll trust that he is doing the right thing....had I been with

one of his associates who felt I was untreatable I wouldn't have been treated

with the pred at all and would probably be on dialysis right now so I guess I

have to trust his gut feeling on this one....as much as I hate the fact.

Amy G.

Re: Well not what I expected...

Hi Amy,

I am so sorry if I minimized the Prednisone disappointment. I really did not

mean to do that. I know you have suffered through many many months on

Prednisone and I was also hopeful that you could be further weaned. I do

hate for

you to have to stay on it. You are on 10 mg right? I really don't trust my

memory these days.

I am happy that your labs are stable of course, but I know that was

overshadowed by not getting your Pred lowered. I pray you are not Pred

dependent

Amy.

I am praying for you to get a good night's sleep tonight dear Amy.

Sweet dreams!

In a message dated 4/4/2005 9:27:21 P.M. Pacific Daylight Time,

purrfect@... writes:

The pred thing really bothers me though. I mean, if he didn't think I was

pred dependent why didn't he reduce my dose...heaven knows I've been on it

long enough. If he does feel I'm pred dependent I wish he would just come

right out and say it so I can just live with the fact. Right now I feel like

I

have to just accept that I'm pred dependent and if I manage to come off it I

will be pleasantly surprised, I can't live with this " Maybe at your next

visit " hope dashing stuff. It's been " maybe at your next visit " for over a

year

now....

I'm also hoping for a good nights sleep...instead of a glass of wine I'm

having a small glass of chocolate soy milk. :-)

Amy G.

[Guest guest]

I'm actually down to 5mg daily now. I've been at this dose since January.

The last time I was at 5mg for two months my labs took a nosedive, which is why,

when I saw great labs this time round, I automatically figured I'd be weaned

further. It took bumping me back to 10mg for 3 months then starting the wean

slowly again for things to stay stable. I don't really understand the thinking

on this one but I'll trust that he is doing the right thing....had I been with

one of his associates who felt I was untreatable I wouldn't have been treated

with the pred at all and would probably be on dialysis right now so I guess I

have to trust his gut feeling on this one....as much as I hate the fact.

Amy G.

Re: Well not what I expected...

Hi Amy,

I am so sorry if I minimized the Prednisone disappointment. I really did not

mean to do that. I know you have suffered through many many months on

Prednisone and I was also hopeful that you could be further weaned. I do

hate for

you to have to stay on it. You are on 10 mg right? I really don't trust my

memory these days.

I am happy that your labs are stable of course, but I know that was

overshadowed by not getting your Pred lowered. I pray you are not Pred

dependent

Amy.

I am praying for you to get a good night's sleep tonight dear Amy.

Sweet dreams!

In a message dated 4/4/2005 9:27:21 P.M. Pacific Daylight Time,

purrfect@... writes:

The pred thing really bothers me though. I mean, if he didn't think I was

pred dependent why didn't he reduce my dose...heaven knows I've been on it

long enough. If he does feel I'm pred dependent I wish he would just come

right out and say it so I can just live with the fact. Right now I feel like

I

have to just accept that I'm pred dependent and if I manage to come off it I

will be pleasantly surprised, I can't live with this " Maybe at your next

visit " hope dashing stuff. It's been " maybe at your next visit " for over a

year

now....

I'm also hoping for a good nights sleep...instead of a glass of wine I'm

having a small glass of chocolate soy milk. :-)

Amy G.

[Guest guest]

Hi Amy. A serum creatinine of 2.2 is definitely not esrd. It's probably just

a convenient billing shorthand your doctor uses, or just an oversight. Esrd

is usually understood as being when a person has under 20%, or is

approaching 10-15%. The proper description for where you are now is CRI

(chronic renal insufficiency), or PRI (progressive renal insufficiency).

Where I live, you wouldn't even be seen at the PRI clinic yet, where people

start going for follow-ups when they are at or near 30%.

Re continuing the prednisone, I guess your doctor just doesn't want to mess

with what seems to be working for you in keeping that proteinuria pretty

close to normal range. That might be a logical thing to do, as long as

you're tolerating the small dose of prednisone relatively well. That's the

kind of thing where one doctor might continue it, and another might not.

Pierre

P.S. Well, enough of the email. I guess I should start getting ready to go

to the hospital in an hour. By the way, just so there's no confusion, the

angioplasty and possible stenting I'm having done this morning is for the

fistula (at the veinous outflow, where the narrowing is). It's similar in

concept to angioplasty for the coronary arteries, but, obviously, not in the

same league as that. Still, I can't say I'm particularly looking forward to

it.

Well not what I expected...

>

>

> >

> > but it could have been worse I guess. Saw my neph for another follow up

> today and had hopes that my pred dose would be lowered. No such luck I

> guess..... My labs are stable and stable is good, creatinine at 2.2,

> protien spill at 200mg/24hr, everything else was in good ranges so I was

> very happy. Well my neph went over all this, talked about my insomnia

(I'm

> going to try melatonin for it), looked over my b/p record, then made out

my

> lab request for my next appointment. I was sort of expecting a reduction

in

> the pred since everything is stable again. I asked him about it only to

get

> the answer " Well it's such a small dose you are on....and you've been on

for

> 18 months now.....lets keep you there and see how things look in Sept once

> you've been on for 2 years " (sound familiar ?) I asked straight out

> " So do you think I'm pred dependent now? " He didn't give me a direct

answer

> and just said " I'm sure you'll come off it eventually " Ya like when I

start

> on dialysis right? *sigh* I guess if it's keeping me stable then it's

> still better than having to be on dialysis. I think having all the

results

> from the endoscopy and gastric emptying scan made him feel more

comfortable

> keeping me on it since now he knows the pred isn't causing the nausea I

have

> been having. At my last appointment in Jan all he could talk about was

how

> we had to get me off due to the stomach problems I was having.

> >

> > The other downer part of this visit was when he handed me all of my lab

> forms and my sheet to take to the receptionist to check out with....all my

> prior visits had IgAN listed as my diagnosis....today all of them read

ESRD

> in the diagnosis space.....I think it was a major shock to me to see it in

> writing like that, though it shouldn't have been. I could use a good

stiff

> drink right about now.

> >

> > Thanks for letting me vent,

> > Amy G.

> >

[Guest guest]

Hi Amy. A serum creatinine of 2.2 is definitely not esrd. It's probably just

a convenient billing shorthand your doctor uses, or just an oversight. Esrd

is usually understood as being when a person has under 20%, or is

approaching 10-15%. The proper description for where you are now is CRI

(chronic renal insufficiency), or PRI (progressive renal insufficiency).

Where I live, you wouldn't even be seen at the PRI clinic yet, where people

start going for follow-ups when they are at or near 30%.

Re continuing the prednisone, I guess your doctor just doesn't want to mess

with what seems to be working for you in keeping that proteinuria pretty

close to normal range. That might be a logical thing to do, as long as

you're tolerating the small dose of prednisone relatively well. That's the

kind of thing where one doctor might continue it, and another might not.

Pierre

P.S. Well, enough of the email. I guess I should start getting ready to go

to the hospital in an hour. By the way, just so there's no confusion, the

angioplasty and possible stenting I'm having done this morning is for the

fistula (at the veinous outflow, where the narrowing is). It's similar in

concept to angioplasty for the coronary arteries, but, obviously, not in the

same league as that. Still, I can't say I'm particularly looking forward to

it.

Well not what I expected...

>

>

> >

> > but it could have been worse I guess. Saw my neph for another follow up

> today and had hopes that my pred dose would be lowered. No such luck I

> guess..... My labs are stable and stable is good, creatinine at 2.2,

> protien spill at 200mg/24hr, everything else was in good ranges so I was

> very happy. Well my neph went over all this, talked about my insomnia

(I'm

> going to try melatonin for it), looked over my b/p record, then made out

my

> lab request for my next appointment. I was sort of expecting a reduction

in

> the pred since everything is stable again. I asked him about it only to

get

> the answer " Well it's such a small dose you are on....and you've been on

for

> 18 months now.....lets keep you there and see how things look in Sept once

> you've been on for 2 years " (sound familiar ?) I asked straight out

> " So do you think I'm pred dependent now? " He didn't give me a direct

answer

> and just said " I'm sure you'll come off it eventually " Ya like when I

start

> on dialysis right? *sigh* I guess if it's keeping me stable then it's

> still better than having to be on dialysis. I think having all the

results

> from the endoscopy and gastric emptying scan made him feel more

comfortable

> keeping me on it since now he knows the pred isn't causing the nausea I

have

> been having. At my last appointment in Jan all he could talk about was

how

> we had to get me off due to the stomach problems I was having.

> >

> > The other downer part of this visit was when he handed me all of my lab

> forms and my sheet to take to the receptionist to check out with....all my

> prior visits had IgAN listed as my diagnosis....today all of them read

ESRD

> in the diagnosis space.....I think it was a major shock to me to see it in

> writing like that, though it shouldn't have been. I could use a good

stiff

> drink right about now.

> >

> > Thanks for letting me vent,

> > Amy G.

> >

[Guest guest]

Hi Amy. A serum creatinine of 2.2 is definitely not esrd. It's probably just

a convenient billing shorthand your doctor uses, or just an oversight. Esrd

is usually understood as being when a person has under 20%, or is

approaching 10-15%. The proper description for where you are now is CRI

(chronic renal insufficiency), or PRI (progressive renal insufficiency).

Where I live, you wouldn't even be seen at the PRI clinic yet, where people

start going for follow-ups when they are at or near 30%.

Re continuing the prednisone, I guess your doctor just doesn't want to mess

with what seems to be working for you in keeping that proteinuria pretty

close to normal range. That might be a logical thing to do, as long as

you're tolerating the small dose of prednisone relatively well. That's the

kind of thing where one doctor might continue it, and another might not.

Pierre

P.S. Well, enough of the email. I guess I should start getting ready to go

to the hospital in an hour. By the way, just so there's no confusion, the

angioplasty and possible stenting I'm having done this morning is for the

fistula (at the veinous outflow, where the narrowing is). It's similar in

concept to angioplasty for the coronary arteries, but, obviously, not in the

same league as that. Still, I can't say I'm particularly looking forward to

it.

Well not what I expected...

>

>

> >

> > but it could have been worse I guess. Saw my neph for another follow up

> today and had hopes that my pred dose would be lowered. No such luck I

> guess..... My labs are stable and stable is good, creatinine at 2.2,

> protien spill at 200mg/24hr, everything else was in good ranges so I was

> very happy. Well my neph went over all this, talked about my insomnia

(I'm

> going to try melatonin for it), looked over my b/p record, then made out

my

> lab request for my next appointment. I was sort of expecting a reduction

in

> the pred since everything is stable again. I asked him about it only to

get

> the answer " Well it's such a small dose you are on....and you've been on

for

> 18 months now.....lets keep you there and see how things look in Sept once

> you've been on for 2 years " (sound familiar ?) I asked straight out

> " So do you think I'm pred dependent now? " He didn't give me a direct

answer

> and just said " I'm sure you'll come off it eventually " Ya like when I

start

> on dialysis right? *sigh* I guess if it's keeping me stable then it's

> still better than having to be on dialysis. I think having all the

results

> from the endoscopy and gastric emptying scan made him feel more

comfortable

> keeping me on it since now he knows the pred isn't causing the nausea I

have

> been having. At my last appointment in Jan all he could talk about was

how

> we had to get me off due to the stomach problems I was having.

> >

> > The other downer part of this visit was when he handed me all of my lab

> forms and my sheet to take to the receptionist to check out with....all my

> prior visits had IgAN listed as my diagnosis....today all of them read

ESRD

> in the diagnosis space.....I think it was a major shock to me to see it in

> writing like that, though it shouldn't have been. I could use a good

stiff

> drink right about now.

> >

> > Thanks for letting me vent,

> > Amy G.

> >

[Guest guest]

Amy,

It doesn't matter if we are expecting it or not. The

word ESRD is a shock to us. When my neph told me I was

in the hospital CC unit after have bypass surgery. We

expected the dyes would finish off my kidney function.

I was still shocked when it happened. I will keep you

on my prayer list. -Ray

--- Amy Griswold wrote:

> but it could have been worse I guess. Saw my neph

> for another follow up today and had hopes that my

> pred dose would be lowered. No such luck I

> guess..... My labs are stable and stable is good,

> creatinine at 2.2, protien spill at 200mg/24hr,

> everything else was in good ranges so I was very

> happy. Well my neph went over all this, talked

> about my insomnia (I'm going to try melatonin for

> it), looked over my b/p record, then made out my lab

> request for my next appointment. I was sort of

> expecting a reduction in the pred since everything

> is stable again. I asked him about it only to get

> the answer " Well it's such a small dose you are

> on....and you've been on for 18 months now.....lets

> keep you there and see how things look in Sept once

> you've been on for 2 years " (sound familiar ?)

> I asked straight out " So do you think I'm pred

> dependent now? " He didn't give me a direct answer

> and just said " I'm sure you'll come off it

> eventually " Ya like when I start on dialysis right?

> *sigh* I guess if it's keeping me stable then it's

> still better than having to be on dialysis. I think

> having all the results from the endoscopy and

> gastric emptying scan made him feel more comfortable

> keeping me on it since now he knows the pred isn't

> causing the nausea I have been having. At my last

> appointment in Jan all he could talk about was how

> we had to get me off due to the stomach problems I

> was having.

>

> The other downer part of this visit was when he

> handed me all of my lab forms and my sheet to take

> to the receptionist to check out with....all my

> prior visits had IgAN listed as my

> diagnosis....today all of them read ESRD in the

> diagnosis space.....I think it was a major shock to

> me to see it in writing like that, though it

> shouldn't have been. I could use a good stiff drink

> right about now.

>

> Thanks for letting me vent,

> Amy G.

>

> [Non-text portions of this message have been

> removed]

>

>

(In Christ Love) -Ray

__________________________________________________

[Guest guest]

I had remembered that you went up to 10, but not that you dropped back down

to 5. I guess the praise is that your protein spill is remaining stable at 5

mg this time. Maybe they can try 5 mg every other day at the next

appointment. I know Prednisone is a nasty drug and you have really not had an

easy

time with it.

I'm so sorry you did not get to drop the dose this time around Amy.

In a message dated 4/4/2005 10:41:13 P.M. Pacific Daylight Time,

purrfect@... writes:

I'm actually down to 5mg daily now. I've been at this dose since

January. The last time I was at 5mg for two months my labs took a nosedive,

which is why, when I saw great labs this time round, I automatically figured

I'd

be weaned further. It took bumping me back to 10mg for 3 months then

starting the wean slowly again for things to stay stable. I don't really

understand

the thinking on this one but I'll trust that he is doing the right

thing....had I been with one of his associates who felt I was untreatable I

wouldn't

have been treated with the pred at all and would probably be on dialysis right

now so I guess I have to trust his gut feeling on this one....as much as I

hate the fact.

Amy G.

[Guest guest]

I had remembered that you went up to 10, but not that you dropped back down

to 5. I guess the praise is that your protein spill is remaining stable at 5

mg this time. Maybe they can try 5 mg every other day at the next

appointment. I know Prednisone is a nasty drug and you have really not had an

easy

time with it.

I'm so sorry you did not get to drop the dose this time around Amy.

In a message dated 4/4/2005 10:41:13 P.M. Pacific Daylight Time,

purrfect@... writes:

I'm actually down to 5mg daily now. I've been at this dose since

January. The last time I was at 5mg for two months my labs took a nosedive,

which is why, when I saw great labs this time round, I automatically figured

I'd

be weaned further. It took bumping me back to 10mg for 3 months then

starting the wean slowly again for things to stay stable. I don't really

understand

the thinking on this one but I'll trust that he is doing the right

thing....had I been with one of his associates who felt I was untreatable I

wouldn't

have been treated with the pred at all and would probably be on dialysis right

now so I guess I have to trust his gut feeling on this one....as much as I

hate the fact.

Amy G.

[Guest guest]

I had remembered that you went up to 10, but not that you dropped back down

to 5. I guess the praise is that your protein spill is remaining stable at 5

mg this time. Maybe they can try 5 mg every other day at the next

appointment. I know Prednisone is a nasty drug and you have really not had an

easy

time with it.

I'm so sorry you did not get to drop the dose this time around Amy.

In a message dated 4/4/2005 10:41:13 P.M. Pacific Daylight Time,

purrfect@... writes:

I'm actually down to 5mg daily now. I've been at this dose since

January. The last time I was at 5mg for two months my labs took a nosedive,

which is why, when I saw great labs this time round, I automatically figured

I'd

be weaned further. It took bumping me back to 10mg for 3 months then

starting the wean slowly again for things to stay stable. I don't really

understand

the thinking on this one but I'll trust that he is doing the right

thing....had I been with one of his associates who felt I was untreatable I

wouldn't

have been treated with the pred at all and would probably be on dialysis right

now so I guess I have to trust his gut feeling on this one....as much as I

hate the fact.

Amy G.

[Guest guest]

Amy,

If I were you I'd go have that stiff drink.

Phil

> but it could have been worse I guess. Saw my neph for another

follow up today and had hopes that my pred dose would be lowered. No

such luck I guess..... My labs are stable and stable is good,

creatinine at 2.2, protien spill at 200mg/24hr, everything else was in

good ranges so I was very happy. Well my neph went over all this,

talked about my insomnia (I'm going to try melatonin for it), looked

over my b/p record, then made out my lab request for my next

appointment. I was sort of expecting a reduction in the pred since

everything is stable again. I asked him about it only to get the

answer " Well it's such a small dose you are on....and you've been on

for 18 months now.....lets keep you there and see how things look in

Sept once you've been on for 2 years " (sound familiar ?) I asked

straight out " So do you think I'm pred dependent now? " He didn't give

me a direct answer and just said " I'm sure you'll come off it

eventually " Ya like when I start on dialysis right? *sigh* I guess

if it's keeping me stable then it's still better than having to be on

dialysis. I think having all the results from the endoscopy and

gastric emptying scan made him feel more comfortable keeping me on it

since now he knows the pred isn't causing the nausea I have been

having. At my last appointment in Jan all he could talk about was how

we had to get me off due to the stomach problems I was having.

>

> The other downer part of this visit was when he handed me all of my

lab forms and my sheet to take to the receptionist to check out

with....all my prior visits had IgAN listed as my diagnosis....today

all of them read ESRD in the diagnosis space.....I think it was a

major shock to me to see it in writing like that, though it shouldn't

have been. I could use a good stiff drink right about now.

>

> Thanks for letting me vent,

> Amy G.

>

>

[Guest guest]

Thanks everyone, I'm feeling a lot better about things this morning. It's

incredible what a good nights sleep will do for you....this melatonin stuff

really relaxes you quite well. My aunt e.mailed me this morning, she is in her

late 70's and lost her husband recently to complications from diabetes including

renal failure, she stated and I quote " They of all people should know that End

Stage anything is not something that can be accurately determined, even by

doctors who sometimes think they are godlike. . And if they wanted to be

accurate everyone's record should say ESLSDOB. End Stage Life Since Day of

Birth! " After all she has been thru with my Uncle's health she has a great way

of putting things in perspective for me. :-)

Thanks for letting me vent yesterday...

Amy G.

Well not what I expected...

>

>

> >

> > but it could have been worse I guess. Saw my neph for another follow up

> today and had hopes that my pred dose would be lowered. No such luck I

> guess..... My labs are stable and stable is good, creatinine at 2.2,

> protien spill at 200mg/24hr, everything else was in good ranges so I was

> very happy. Well my neph went over all this, talked about my insomnia

(I'm

> going to try melatonin for it), looked over my b/p record, then made out

my

> lab request for my next appointment. I was sort of expecting a reduction

in

> the pred since everything is stable again. I asked him about it only to

get

> the answer " Well it's such a small dose you are on....and you've been on

for

> 18 months now.....lets keep you there and see how things look in Sept once

> you've been on for 2 years " (sound familiar ?) I asked straight out

> " So do you think I'm pred dependent now? " He didn't give me a direct

answer

> and just said " I'm sure you'll come off it eventually " Ya like when I

start

> on dialysis right? *sigh* I guess if it's keeping me stable then it's

> still better than having to be on dialysis. I think having all the

results

> from the endoscopy and gastric emptying scan made him feel more

comfortable

> keeping me on it since now he knows the pred isn't causing the nausea I

have

> been having. At my last appointment in Jan all he could talk about was

how

> we had to get me off due to the stomach problems I was having.

> >

> > The other downer part of this visit was when he handed me all of my lab

> forms and my sheet to take to the receptionist to check out with....all my

> prior visits had IgAN listed as my diagnosis....today all of them read

ESRD

> in the diagnosis space.....I think it was a major shock to me to see it in

> writing like that, though it shouldn't have been. I could use a good

stiff

> drink right about now.

> >

> > Thanks for letting me vent,

> > Amy G.

> >

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]

Thanks everyone, I'm feeling a lot better about things this morning. It's

incredible what a good nights sleep will do for you....this melatonin stuff

really relaxes you quite well. My aunt e.mailed me this morning, she is in her

late 70's and lost her husband recently to complications from diabetes including

renal failure, she stated and I quote " They of all people should know that End

Stage anything is not something that can be accurately determined, even by

doctors who sometimes think they are godlike. . And if they wanted to be

accurate everyone's record should say ESLSDOB. End Stage Life Since Day of

Birth! " After all she has been thru with my Uncle's health she has a great way

of putting things in perspective for me. :-)

Thanks for letting me vent yesterday...

Amy G.

Well not what I expected...

>

>

> >

> > but it could have been worse I guess. Saw my neph for another follow up

> today and had hopes that my pred dose would be lowered. No such luck I

> guess..... My labs are stable and stable is good, creatinine at 2.2,

> protien spill at 200mg/24hr, everything else was in good ranges so I was

> very happy. Well my neph went over all this, talked about my insomnia

(I'm

> going to try melatonin for it), looked over my b/p record, then made out

my

> lab request for my next appointment. I was sort of expecting a reduction

in

> the pred since everything is stable again. I asked him about it only to

get

> the answer " Well it's such a small dose you are on....and you've been on

for

> 18 months now.....lets keep you there and see how things look in Sept once

> you've been on for 2 years " (sound familiar ?) I asked straight out

> " So do you think I'm pred dependent now? " He didn't give me a direct

answer

> and just said " I'm sure you'll come off it eventually " Ya like when I

start

> on dialysis right? *sigh* I guess if it's keeping me stable then it's

> still better than having to be on dialysis. I think having all the

results

> from the endoscopy and gastric emptying scan made him feel more

comfortable

> keeping me on it since now he knows the pred isn't causing the nausea I

have

> been having. At my last appointment in Jan all he could talk about was

how

> we had to get me off due to the stomach problems I was having.

> >

> > The other downer part of this visit was when he handed me all of my lab

> forms and my sheet to take to the receptionist to check out with....all my

> prior visits had IgAN listed as my diagnosis....today all of them read

ESRD

> in the diagnosis space.....I think it was a major shock to me to see it in

> writing like that, though it shouldn't have been. I could use a good

stiff

> drink right about now.

> >

> > Thanks for letting me vent,

> > Amy G.

> >

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]

Thanks everyone, I'm feeling a lot better about things this morning. It's

incredible what a good nights sleep will do for you....this melatonin stuff

really relaxes you quite well. My aunt e.mailed me this morning, she is in her

late 70's and lost her husband recently to complications from diabetes including

renal failure, she stated and I quote " They of all people should know that End

Stage anything is not something that can be accurately determined, even by

doctors who sometimes think they are godlike. . And if they wanted to be

accurate everyone's record should say ESLSDOB. End Stage Life Since Day of

Birth! " After all she has been thru with my Uncle's health she has a great way

of putting things in perspective for me. :-)

Thanks for letting me vent yesterday...

Amy G.

Well not what I expected...

>

>

> >

> > but it could have been worse I guess. Saw my neph for another follow up

> today and had hopes that my pred dose would be lowered. No such luck I

> guess..... My labs are stable and stable is good, creatinine at 2.2,

> protien spill at 200mg/24hr, everything else was in good ranges so I was

> very happy. Well my neph went over all this, talked about my insomnia

(I'm

> going to try melatonin for it), looked over my b/p record, then made out

my

> lab request for my next appointment. I was sort of expecting a reduction

in

> the pred since everything is stable again. I asked him about it only to

get

> the answer " Well it's such a small dose you are on....and you've been on

for

> 18 months now.....lets keep you there and see how things look in Sept once

> you've been on for 2 years " (sound familiar ?) I asked straight out

> " So do you think I'm pred dependent now? " He didn't give me a direct

answer

> and just said " I'm sure you'll come off it eventually " Ya like when I

start

> on dialysis right? *sigh* I guess if it's keeping me stable then it's

> still better than having to be on dialysis. I think having all the

results

> from the endoscopy and gastric emptying scan made him feel more

comfortable

> keeping me on it since now he knows the pred isn't causing the nausea I

have

> been having. At my last appointment in Jan all he could talk about was

how

> we had to get me off due to the stomach problems I was having.

> >

> > The other downer part of this visit was when he handed me all of my lab

> forms and my sheet to take to the receptionist to check out with....all my

> prior visits had IgAN listed as my diagnosis....today all of them read

ESRD

> in the diagnosis space.....I think it was a major shock to me to see it in

> writing like that, though it shouldn't have been. I could use a good

stiff

> drink right about now.

> >

> > Thanks for letting me vent,

> > Amy G.

> >

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]

Amy:

After I sent this I realized that it may come off with a fatalistic

tone. I apoligize if you took it this way. I meant that you should go

out and have some fun. Kidney disease takes such a toll on everyone's

pysche that sometimes you need to stop and forget and have fun.

Best Wishes!

Phil

> > but it could have been worse I guess. Saw my neph for another

> follow up today and had hopes that my pred dose would be lowered. No

> such luck I guess..... My labs are stable and stable is good,

> creatinine at 2.2, protien spill at 200mg/24hr, everything else was in

> good ranges so I was very happy. Well my neph went over all this,

> talked about my insomnia (I'm going to try melatonin for it), looked

> over my b/p record, then made out my lab request for my next

> appointment. I was sort of expecting a reduction in the pred since

> everything is stable again. I asked him about it only to get the

> answer " Well it's such a small dose you are on....and you've been on

> for 18 months now.....lets keep you there and see how things look in

> Sept once you've been on for 2 years " (sound familiar ?) I asked

> straight out " So do you think I'm pred dependent now? " He didn't give

> me a direct answer and just said " I'm sure you'll come off it

> eventually " Ya like when I start on dialysis right? *sigh* I guess

> if it's keeping me stable then it's still better than having to be on

> dialysis. I think having all the results from the endoscopy and

> gastric emptying scan made him feel more comfortable keeping me on it

> since now he knows the pred isn't causing the nausea I have been

> having. At my last appointment in Jan all he could talk about was how

> we had to get me off due to the stomach problems I was having.

> >

> > The other downer part of this visit was when he handed me all of my

> lab forms and my sheet to take to the receptionist to check out

> with....all my prior visits had IgAN listed as my diagnosis....today

> all of them read ESRD in the diagnosis space.....I think it was a

> major shock to me to see it in writing like that, though it shouldn't

> have been. I could use a good stiff drink right about now.

> >

> > Thanks for letting me vent,

> > Amy G.

> >

> >

[Guest guest]

Amy:

After I sent this I realized that it may come off with a fatalistic

tone. I apoligize if you took it this way. I meant that you should go

out and have some fun. Kidney disease takes such a toll on everyone's

pysche that sometimes you need to stop and forget and have fun.

Best Wishes!

Phil

> > but it could have been worse I guess. Saw my neph for another

> follow up today and had hopes that my pred dose would be lowered. No

> such luck I guess..... My labs are stable and stable is good,

> creatinine at 2.2, protien spill at 200mg/24hr, everything else was in

> good ranges so I was very happy. Well my neph went over all this,

> talked about my insomnia (I'm going to try melatonin for it), looked

> over my b/p record, then made out my lab request for my next

> appointment. I was sort of expecting a reduction in the pred since

> everything is stable again. I asked him about it only to get the

> answer " Well it's such a small dose you are on....and you've been on

> for 18 months now.....lets keep you there and see how things look in

> Sept once you've been on for 2 years " (sound familiar ?) I asked

> straight out " So do you think I'm pred dependent now? " He didn't give

> me a direct answer and just said " I'm sure you'll come off it

> eventually " Ya like when I start on dialysis right? *sigh* I guess

> if it's keeping me stable then it's still better than having to be on

> dialysis. I think having all the results from the endoscopy and

> gastric emptying scan made him feel more comfortable keeping me on it

> since now he knows the pred isn't causing the nausea I have been

> having. At my last appointment in Jan all he could talk about was how

> we had to get me off due to the stomach problems I was having.

> >

> > The other downer part of this visit was when he handed me all of my

> lab forms and my sheet to take to the receptionist to check out

> with....all my prior visits had IgAN listed as my diagnosis....today

> all of them read ESRD in the diagnosis space.....I think it was a

> major shock to me to see it in writing like that, though it shouldn't

> have been. I could use a good stiff drink right about now.

> >

> > Thanks for letting me vent,

> > Amy G.

> >

> >

[Guest guest]

Amy:

After I sent this I realized that it may come off with a fatalistic

tone. I apoligize if you took it this way. I meant that you should go

out and have some fun. Kidney disease takes such a toll on everyone's

pysche that sometimes you need to stop and forget and have fun.

Best Wishes!

Phil

> > but it could have been worse I guess. Saw my neph for another

> follow up today and had hopes that my pred dose would be lowered. No

> such luck I guess..... My labs are stable and stable is good,

> creatinine at 2.2, protien spill at 200mg/24hr, everything else was in

> good ranges so I was very happy. Well my neph went over all this,

> talked about my insomnia (I'm going to try melatonin for it), looked

> over my b/p record, then made out my lab request for my next

> appointment. I was sort of expecting a reduction in the pred since

> everything is stable again. I asked him about it only to get the

> answer " Well it's such a small dose you are on....and you've been on

> for 18 months now.....lets keep you there and see how things look in

> Sept once you've been on for 2 years " (sound familiar ?) I asked

> straight out " So do you think I'm pred dependent now? " He didn't give

> me a direct answer and just said " I'm sure you'll come off it

> eventually " Ya like when I start on dialysis right? *sigh* I guess

> if it's keeping me stable then it's still better than having to be on

> dialysis. I think having all the results from the endoscopy and

> gastric emptying scan made him feel more comfortable keeping me on it

> since now he knows the pred isn't causing the nausea I have been

> having. At my last appointment in Jan all he could talk about was how

> we had to get me off due to the stomach problems I was having.

> >

> > The other downer part of this visit was when he handed me all of my

> lab forms and my sheet to take to the receptionist to check out

> with....all my prior visits had IgAN listed as my diagnosis....today

> all of them read ESRD in the diagnosis space.....I think it was a

> major shock to me to see it in writing like that, though it shouldn't

> have been. I could use a good stiff drink right about now.

> >

> > Thanks for letting me vent,

> > Amy G.

> >

> >