Re: Well not what I expected...

[Guest guest]

No need to apologize Phil, I got the 'in fun' tone of the post. I was feeling

rather fatalistic yesterday but after a decent nights sleep and the first few

doses of antibiotics for this nasty sinus infection in my system I am starting

to see the light again. It's amazing what lack of sleep will do to the brain.

I plan on a nice glass of Shiraz wine with my dinner tonight...and perhaps

another one while watching a movie with my hubby. ;-)

I'm still upset about the prednisone thing, I was going to be weaned off in July

'04, then it was going to be by Dec '04 at the very latest, then my labs got bad

again and we bumped up the dose once more....In Jan '05 I was going to be off

this by July '05 at the very latest....now I'm looking at Oct '05 for a POSSIBLE

start on the final weaning. It's been rather frustrating and I would rather the

neph just say " We are going to keep you on this as long as we need to in order

to keep you stable " rather than playing the " next visit we'll see if we can get

you off it " game. Know what I mean? My first dose was on Sept 30, 2003.

Please let me add to ALL of you on prednisone or with kids on prednisone. My

case is NOT typical for prednisone use. Most people who are put on it are

weaned off within 6-8 months. The drug does it's thing, the proteinurea drops,

and they wean you off. In my case when they start to wean me off my protein

level jumps way up again, if I stay on it stays down. This is rare and you guys

shouldn't worry that this will happen to you because chances are very good that

it won't.

Amy G.

Re: Well not what I expected...

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]

No need to apologize Phil, I got the 'in fun' tone of the post. I was feeling

rather fatalistic yesterday but after a decent nights sleep and the first few

doses of antibiotics for this nasty sinus infection in my system I am starting

to see the light again. It's amazing what lack of sleep will do to the brain.

I plan on a nice glass of Shiraz wine with my dinner tonight...and perhaps

another one while watching a movie with my hubby. ;-)

I'm still upset about the prednisone thing, I was going to be weaned off in July

'04, then it was going to be by Dec '04 at the very latest, then my labs got bad

again and we bumped up the dose once more....In Jan '05 I was going to be off

this by July '05 at the very latest....now I'm looking at Oct '05 for a POSSIBLE

start on the final weaning. It's been rather frustrating and I would rather the

neph just say " We are going to keep you on this as long as we need to in order

to keep you stable " rather than playing the " next visit we'll see if we can get

you off it " game. Know what I mean? My first dose was on Sept 30, 2003.

Please let me add to ALL of you on prednisone or with kids on prednisone. My

case is NOT typical for prednisone use. Most people who are put on it are

weaned off within 6-8 months. The drug does it's thing, the proteinurea drops,

and they wean you off. In my case when they start to wean me off my protein

level jumps way up again, if I stay on it stays down. This is rare and you guys

shouldn't worry that this will happen to you because chances are very good that

it won't.

Amy G.

Re: Well not what I expected...

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]

It will do you good. It stimulates urine production :-)

Pierre

Re: Well not what I expected...

>

>

> 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]

It will do you good. It stimulates urine production :-)

Pierre

Re: Well not what I expected...

>

>

> 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]

Amy doll - sorry about the prednisone hanging around longer than you'd like,

but.........your labs really are quite good. I agree with - no way are

you ESRD, not even close girlfriend! Hugs, Rita

W4JC@... wrote:

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 was so praying the Melatonin would work for you. I am very glad you

got a good night's sleep. So, were you able to enjoy the movie with

your hubby without falling asleep?

Sweet dreams again tonight :-)

Re: Re: Well not what I expected...

No need to apologize Phil, I got the 'in fun' tone of the post. I was

feeling

rather fatalistic yesterday but after a decent nights sleep and the

first few

doses of antibiotics for this nasty sinus infection in my system I am

starting

to see the light again. It's amazing what lack of sleep will do to the

brain.

I plan on a nice glass of Shiraz wine with my dinner tonight...and

perhaps

another one while watching a movie with my hubby. ;-)

I'm still upset about the prednisone thing, I was going to be weaned

off in July

'04, then it was going to be by Dec '04 at the very latest, then my

labs got bad

again and we bumped up the dose once more....In Jan '05 I was going to

be off

this by July '05 at the very latest....now I'm looking at Oct '05 for a

POSSIBLE

start on the final weaning. It's been rather frustrating and I would

rather the

neph just say " We are going to keep you on this as long as we need to

in order

to keep you stable " rather than playing the " next visit we'll see if we

can get

you off it " game. Know what I mean? My first dose was on Sept 30,

2003.

Please let me add to ALL of you on prednisone or with kids on

prednisone. My

case is NOT typical for prednisone use. Most people who are put on it

are

weaned off within 6-8 months. The drug does it's thing, the

proteinurea drops,

and they wean you off. In my case when they start to wean me off my

protein

level jumps way up again, if I stay on it stays down. This is rare and

you guys

shouldn't worry that this will happen to you because chances are very

good that

it won't.

Amy G.

Re: Well not what I expected...

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]

Hi Amy,

I was so praying the Melatonin would work for you. I am very glad you

got a good night's sleep. So, were you able to enjoy the movie with

your hubby without falling asleep?

Sweet dreams again tonight :-)

Re: Re: Well not what I expected...

No need to apologize Phil, I got the 'in fun' tone of the post. I was

feeling

rather fatalistic yesterday but after a decent nights sleep and the

first few

doses of antibiotics for this nasty sinus infection in my system I am

starting

to see the light again. It's amazing what lack of sleep will do to the

brain.

I plan on a nice glass of Shiraz wine with my dinner tonight...and

perhaps

another one while watching a movie with my hubby. ;-)

I'm still upset about the prednisone thing, I was going to be weaned

off in July

'04, then it was going to be by Dec '04 at the very latest, then my

labs got bad

again and we bumped up the dose once more....In Jan '05 I was going to

be off

this by July '05 at the very latest....now I'm looking at Oct '05 for a

POSSIBLE

start on the final weaning. It's been rather frustrating and I would

rather the

neph just say " We are going to keep you on this as long as we need to

in order

to keep you stable " rather than playing the " next visit we'll see if we

can get

you off it " game. Know what I mean? My first dose was on Sept 30,

2003.

Please let me add to ALL of you on prednisone or with kids on

prednisone. My

case is NOT typical for prednisone use. Most people who are put on it

are

weaned off within 6-8 months. The drug does it's thing, the

proteinurea drops,

and they wean you off. In my case when they start to wean me off my

protein

level jumps way up again, if I stay on it stays down. This is rare and

you guys

shouldn't worry that this will happen to you because chances are very

good that

it won't.

Amy G.

Re: Well not what I expected...

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]

Hi Amy,

I was so praying the Melatonin would work for you. I am very glad you

got a good night's sleep. So, were you able to enjoy the movie with

your hubby without falling asleep?

Sweet dreams again tonight :-)

Re: Re: Well not what I expected...

No need to apologize Phil, I got the 'in fun' tone of the post. I was

feeling

rather fatalistic yesterday but after a decent nights sleep and the

first few

doses of antibiotics for this nasty sinus infection in my system I am

starting

to see the light again. It's amazing what lack of sleep will do to the

brain.

I plan on a nice glass of Shiraz wine with my dinner tonight...and

perhaps

another one while watching a movie with my hubby. ;-)

I'm still upset about the prednisone thing, I was going to be weaned

off in July

'04, then it was going to be by Dec '04 at the very latest, then my

labs got bad

again and we bumped up the dose once more....In Jan '05 I was going to

be off

this by July '05 at the very latest....now I'm looking at Oct '05 for a

POSSIBLE

start on the final weaning. It's been rather frustrating and I would

rather the

neph just say " We are going to keep you on this as long as we need to

in order

to keep you stable " rather than playing the " next visit we'll see if we

can get

you off it " game. Know what I mean? My first dose was on Sept 30,

2003.

Please let me add to ALL of you on prednisone or with kids on

prednisone. My

case is NOT typical for prednisone use. Most people who are put on it

are

weaned off within 6-8 months. The drug does it's thing, the

proteinurea drops,

and they wean you off. In my case when they start to wean me off my

protein

level jumps way up again, if I stay on it stays down. This is rare and

you guys

shouldn't worry that this will happen to you because chances are very

good that

it won't.

Amy G.

Re: Well not what I expected...

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.

> >

> >