Re: Status report

[Guest guest]

,

I'm really sorry to hear this about your husband. I will say a

prayer for him.

God Bless,

Amber

[Guest guest]

So sorry to hear about your husband’s latest trials. I will keep him in

my prayers ok.

I fully understand your sentiments as regards medics attitudes to this

condition. I think right back in the beginning of this group, a few

messages were bandied about, saying essentially that they seem to be

almost blasé about IGAN, which of course we know the majority are not.

What may seem like no big deal to them, to us can be devastating.

However, I always think to myself what if the tables were turned? You

know the old saying doctors and nurses make terrible patients LOL!!

I think we are all guilty of having extremely high expectations from our

doctors, and I will be the first to my hand up on that one. What your

doctor has said and is doing is probably all they can do for the moment,

perhaps it could have been better put to your husband do you think?

Try to keep positive both of you, I always think tomorrow is a fresh

day.

Best wishes

Status report

My husband just got back from the doctor and said that his creatinine

has got up to 4.0 which the doctor attributes to his being on too high a

dose of the ACE inhibitor 'Prenavil'. She is reducing the amount he is

on. With regards to anemia, she's not doing anything, but said to take a

multivitamin. He wasn't taking one because his first nephrologist said

to stay away from multivitamins. Anyway, his iron isn't low enough for

them to give him medication for although she does attribute his fatigue

to the anemia.

She said his kidney function is down to 40%. I know there's been a big

discussion the past few days about this, so I'll probably go back and

read those posts.

Essentially, his sense was that her attitude was 'this is the course of

the disease, it's normal and to be expected and we're doing what we can

to slow it, which isn't much.' I guess we have a hard time with that

because we like to be able to plan our lives around our problems and

this isn't one that's really going to lend itself to that.

He's discouraged, but I think if we can get him over this sinus

infection and get his iron up a little bit, he'll feel better.

Blessings,

[Guest guest]

Hi .

Always like to hear updates, It all adds to our collective experience in the

group. Sorry to hear your husband's creatinine is up to 4, but the neph is

probably right about the Prinivil. ACEIs and ARBs do tend to increase serum

creatinine. Sometimes they back off on them if it affects it too much.

I'm interested in your comment about the neph's attitude.

" this is the course of the disease, it's normal and to be expected and we're

doing what we can to slow it, which isn't much. "

I've had that exact same feeling just about every single time I've walked

out of a nephrologist's office in the past 12 years. Unfortunately, that's

just about the size of it. Beyond blood pressure control and some dietary

things that might or might not make any real difference, and adding

supplements at the appropriate times to counter the effects of chronic renal

failure, there really isn't much else to do. That's not to say there isn't

value in going for the follow-ups though, because nephrologists do check for

things that other doctors might not think of as part of pre-esrd care.

Pierre

Status report

> My husband just got back from the doctor and said that his creatinine has

got up to 4.0 which the doctor attributes to his being on too high a dose of

the ACE inhibitor 'Prenavil'. She is reducing the amount he is on. With

regards to anemia, she's not doing anything, but said to take a

multivitamin. He wasn't taking one because his first nephrologist said to

stay away from multivitamins. Anyway, his iron isn't low enough for them to

give him medication for although she does attribute his fatigue to the

anemia.

>

> She said his kidney function is down to 40%. I know there's been a big

discussion the past few days about this, so I'll probably go back and read

those posts.

>

> Essentially, his sense was that her attitude was 'this is the course of

the disease, it's normal and to be expected and we're doing what we can to

slow it, which isn't much.' I guess we have a hard time with that because we

like to be able to plan our lives around our problems and this isn't one

that's really going to lend itself to that.

>

> He's discouraged, but I think if we can get him over this sinus infection

and get his iron up a little bit, he'll feel better.

>

> Blessings,

>

>

>

[Guest guest]

I guess it's because of what we had been told in the past that this attitude is

troubling. Perhaps it would have been better to have been with the same neph.

all this time, but that's not the case...the first two nephrologists behaved as

if this were a benign disease that would never amount to anything problematic.

In fact, the second one said that he was doing great, nothing to worry about,

he'll live to be 80. 70% of people never have kidney failure is what we were

told. So going to this doctor along with the fact that he has had a serious

decline in kidney function in the past 2 years has been a wake up call to him.

They don't say 'You are most likely going to have kidney failure,' they just say

'we'll see what happens.' We have things to think about like taking care of our

house, our kids, and we aren't going to be prepared to deal with kidney failure

because we haven't been told what to expect, what's realistic? Is he going to be

working or not working, and so on? So, I understand that from the physician's

point of view, they are there to deal with the disease, but there's this whole

other part that I think is sort of out there in limbo....are we having pre-esrd

care? We don't really have any idea.

Status report

> My husband just got back from the doctor and said that his creatinine has

got up to 4.0 which the doctor attributes to his being on too high a dose of

the ACE inhibitor 'Prenavil'. She is reducing the amount he is on. With

regards to anemia, she's not doing anything, but said to take a

multivitamin. He wasn't taking one because his first nephrologist said to

stay away from multivitamins. Anyway, his iron isn't low enough for them to

give him medication for although she does attribute his fatigue to the

anemia.

>

> She said his kidney function is down to 40%. I know there's been a big

discussion the past few days about this, so I'll probably go back and read

those posts.

>

> Essentially, his sense was that her attitude was 'this is the course of

the disease, it's normal and to be expected and we're doing what we can to

slow it, which isn't much.' I guess we have a hard time with that because we

like to be able to plan our lives around our problems and this isn't one

that's really going to lend itself to that.

>

> He's discouraged, but I think if we can get him over this sinus infection

and get his iron up a little bit, he'll feel better.

>

> Blessings,

>

>

>

[Guest guest]

I don't know if this will be of any help to you . Once you go beyond

a certain level of kidney function (generally > 2 mg/dl in U.S. and 200

micromoles/Litre most other places), it's a pretty foregone conclusion that

the kidneys are going to run out of working nephrons eventually (in the

context of chronic kidney disease). The tough part is predicting the

time-frame (years? months?). I've gone through pretty much the exact same

scenario. Less than two years ago, I was still hopeful that I might avoid

esrd, or that at the very worst, it might still be sometime far off into the

future. I even still felt this way less than a year ago, even though I knew

it was coming (I think there is always a bit of denial involved). Then

things started to decline faster. It happens to some of us sooner or later,

and it's hard to come to terms with it. All of a sudden, I was facing esrd

in less than 2 years. Now, after my latest neph appointment, I appear to be

right on schedule for 12 months.

If it comes, is he going to be able to work? Impossible to answer ahead of

time, but, if it were me, I would assume not and work from that assumption

(even though this is the worst case scenario, albeit a very common one). If

he gets a transplant, whole other story - but the thing is, you can't know

in advance.

I know that in my own case, the Treatment Options Education my neph referred

me to when I reached 300 umol/L was extremely helpful in answering a lot of

those kinds of questions about it. Mine was about 6-8 hours. I knew a fair

amount about IgAN, but I didn't know anything really about renal failure.

Ask your neph about whether any such pre-dialysis lectures are available in

your area - it's really worth it, believe me.

I think that if he is seeing a nephrologist now, he has to be getting some

reasonable level of pre-esrd care. Besides keeping an eye on blood

electrolytes (mainly potassium and CO2), pre-esrd care consists mainly of

blood pressure control, treatment for anemia when it becomes appropriate,

checking for parathyroid hormone levels and phosphorous/calcium metabolism

(to prevent bone problems). The renal diet comes into play at some point to

help with this. The goal is to keep the patient as healthy as possible

despite being in more advanced renal failure, until dialysis or transplant

becomes necessary, and when it does, getting the patient on it as early as

possible. These things are questions your neph should be able to answer, but

you have to ask, since they often don't tell you what they are doing. Keep

in mind that at the point where your husband is, they won't be talking about

IgAN itself so much as they will be about just plain chronic renal failure.

At one point, you sort of have to stick to one nephrologist, because, a

longer relationship with one can definitely influence how smoothly and

easily the patient gets eased into dialysis when the time comes.

In the early years with IgAN, they don't like to be too pessimistic,

because, hey, there's a good chance the worst won't happen. As renal failure

progresses though, at some point, it becomes apparent that we're not going

to be among the lucky ones. Nephs, being human, generally aren't too quick

about making dire predictions. Mine didn't at all until I asked her point

blank.

It's easy to get depressed about this kind of thing. When that happens to

me, I just remind myself that had I lived before the mid-60's in this

situation, when dialysis wasn't yet widely available, instead of facing

dialysis or transplant in about a year, I would be facing death. Since I was

very much alive in the 50's and 60's, that always puts things in perspective

for me.

Now, I'm just talking generally, because, I can't possibly know how far

along your husband is. I just know that a serum cr of 4 makes it sound like

esrd is coming sometime in the future.

Pierre

P.S. I hesitated to write this, because, as I said, it can be a little

depressing. But in the end, I think it's better to know what to expect.

Re: Status report

> I guess it's because of what we had been told in the past that this

attitude is troubling. Perhaps it would have been better to have been with

the same neph. all this time, but that's not the case...the first two

nephrologists behaved as if this were a benign disease that would never

amount to anything problematic. In fact, the second one said that he was

doing great, nothing to worry about, he'll live to be 80. 70% of people

never have kidney failure is what we were told. So going to this doctor

along with the fact that he has had a serious decline in kidney function in

the past 2 years has been a wake up call to him. They don't say 'You are

most likely going to have kidney failure,' they just say 'we'll see what

happens.' We have things to think about like taking care of our house, our

kids, and we aren't going to be prepared to deal with kidney failure because

we haven't been told what to expect, what's realistic? Is he going to be

working or not working, and so on? So, I understand that from the

physician's point of view, they are there to deal with the disease, but

there's this whole other part that I think is sort of out there in

limbo....are we having pre-esrd care? We don't really have any idea.

>

>

[Guest guest]

Hi Pierre,

Something in your post confused me. I thought the point of

Prinival ( an ACE inhibitor ) was to keep blood pressure down

which in turn helps keeps the creatinine levels down? Your comments

seems to indicate otherwise.

Also, is there a mapping of creatinine levels to percent of

kidney function? I was told that it's an exponential scale,

and that every increase by 1 results in a decrease of kidney

function by one-half .... that is,

creatinine level of 1 = full functioning kidney

creatinine level of 2 = 50% kidney function

creatinine level of 3 = 25% kidney function

creatinine level of 4 = 12.5% kidney function

Is this correct ? ( haven't found literature to confirm this )

Thanks for any insights you can provide. I'm trying to understand

what all the numbers mean that are quoted by various folks ...

Luke

> Hi .

>

> Always like to hear updates, It all adds to our collective

experience in the

> group. Sorry to hear your husband's creatinine is up to 4, but the

neph is

> probably right about the Prinivil. ACEIs and ARBs do tend to

increase serum

> creatinine. Sometimes they back off on them if it affects it too

much.

>

> I'm interested in your comment about the neph's attitude.

>

> " this is the course of the disease, it's normal and to be expected

and we're

> doing what we can to slow it, which isn't much. "

>

> I've had that exact same feeling just about every single time I've

walked

> out of a nephrologist's office in the past 12 years. Unfortunately,

that's

> just about the size of it. Beyond blood pressure control and some

dietary

> things that might or might not make any real difference, and adding

> supplements at the appropriate times to counter the effects of

chronic renal

> failure, there really isn't much else to do. That's not to say

there isn't

> value in going for the follow-ups though, because nephrologists do

check for

> things that other doctors might not think of as part of pre-esrd

care.

>

> Pierre

>

> Status report

>

>

> > My husband just got back from the doctor and said that his

creatinine has

> got up to 4.0 which the doctor attributes to his being on too high

a dose of

> the ACE inhibitor 'Prenavil'. She is reducing the amount he is on.

With

> regards to anemia, she's not doing anything, but said to take a

> multivitamin. He wasn't taking one because his first nephrologist

said to

> stay away from multivitamins. Anyway, his iron isn't low enough for

them to

> give him medication for although she does attribute his fatigue to

the

> anemia.

> >

> > She said his kidney function is down to 40%. I know there's been

a big

> discussion the past few days about this, so I'll probably go back

and read

> those posts.

> >

> > Essentially, his sense was that her attitude was 'this is the

course of

> the disease, it's normal and to be expected and we're doing what we

can to

> slow it, which isn't much.' I guess we have a hard time with that

because we

> like to be able to plan our lives around our problems and this

isn't one

> that's really going to lend itself to that.

> >

> > He's discouraged, but I think if we can get him over this sinus

infection

> and get his iron up a little bit, he'll feel better.

> >

> > Blessings,

> >

> >

> >

[Guest guest]

It's both. ACE inhibitors, and really, blood pressure control with most drug

classes will help delay progression to end-stage (at least, that's what they

say).

However, since filtration in the kidneys depends on adequate blood pressure

in the glomeruli (which is why diseased kidneys deliberately try to raise BP

by secreting a special hormone), it's not uncommon for serum creatinine to

worsen a bit after starting a BP med. ACE inhibitors are particularly known

for this. Despite this, nephrologists still assume that lower blood pressure

is renal protective in the long run, and in particular when using an ACE

inhibitor.

Your scale for creatinine and kidney function is approximately right up to 2

mg/dl, but this is just a very rough approximation. For many people, a serum

creatinine of 3 to 4 would represent a kidney function of anywhere from 40

to 25%, depending on the muscle mass of the person. It's really the

glomerular filtration rate (GFR, based on actual creatinine clearance or a

calculation) that determines when dialysis is needed.

A person with 12.5 % kidney function (or GFR) would be starting dialysis or

close to it, and most people would have a serum creatinine much higher than

4 at that point.

Pierre

Re: Status report

> Hi Pierre,

>

> Something in your post confused me. I thought the point of

> Prinival ( an ACE inhibitor ) was to keep blood pressure down

> which in turn helps keeps the creatinine levels down? Your comments

> seems to indicate otherwise.

>

> Also, is there a mapping of creatinine levels to percent of

> kidney function? I was told that it's an exponential scale,

> and that every increase by 1 results in a decrease of kidney

> function by one-half .... that is,

>

> creatinine level of 1 = full functioning kidney

> creatinine level of 2 = 50% kidney function

> creatinine level of 3 = 25% kidney function

> creatinine level of 4 = 12.5% kidney function

>

> Is this correct ? ( haven't found literature to confirm this )

>

> Thanks for any insights you can provide. I'm trying to understand

> what all the numbers mean that are quoted by various folks ...

>

> Luke

>

[Guest guest]

,

If your husband is actually anemic (have they checked his hematocrit?), it could

be from his kidneys not producing enough erythropoetin. All the iron in the

world won't help that, if it is the case. He may need to be on Procrit. It is a

biotech medication (a man-made version of erythropoetin) that stimulates

production of red blood cells. Sometimes doctors working for HMO's are reluctant

to prescribe it because it is very expensive. Having been anemic myself due to

decreased kidney function, Procrit (predialysis patients) and Epogen (dialysis

patients) are miraculous at bringing up one's hematocrit and make one feel much,

much better.

Marty

Status report

My husband just got back from the doctor and said that his creatinine has got

up to 4.0 which the doctor attributes to his being on too high a dose of the ACE

inhibitor 'Prenavil'. She is reducing the amount he is on. With regards to

anemia, she's not doing anything, but said to take a multivitamin. He wasn't

taking one because his first nephrologist said to stay away from multivitamins.

Anyway, his iron isn't low enough for them to give him medication for although

she does attribute his fatigue to the anemia.

She said his kidney function is down to 40%. I know there's been a big

discussion the past few days about this, so I'll probably go back and read those

posts.

Essentially, his sense was that her attitude was 'this is the course of the

disease, it's normal and to be expected and we're doing what we can to slow it,

which isn't much.' I guess we have a hard time with that because we like to be

able to plan our lives around our problems and this isn't one that's really

going to lend itself to that.

He's discouraged, but I think if we can get him over this sinus infection and

get his iron up a little bit, he'll feel better.

Blessings,