Re: fistula

June 3, 2003

Hi ,

I am sure sorry to hear your creatinine is up to 5.7. I am surprised you

aren't having symptoms yet. I will have to defer to Pierre on the length of

time

for the fistula for sure, but I thought he said the longer the better to

allow it time to develop and mature. I hope you can stabilize where you are!

Anything come from all the testing of your sisters?

June 4, 2003

,

Pierre is in the best position to answer this question really.

Pierre advised me to have the fistula prepared as early as possible,

at least 3 months in advance. In my case, the fistula was prepared 2

months in advance and I ran into a few problems because it hadn't

quite developed enough.It is ok now and developing quite well. On the

dialysis side, my creatinine was quite high when I elected to go onto

dialysis, but creatinine is not the only indicator. Urea level and

how you feel are also good indicators. The problem with how you feel

is some people can tolerate quite high levels of toxins and still

soldier on. Had Christmas not interferred, I would have elected to go

on earlier. Looking back, I was quite worried about going onto

dialysis and delayed it as much as I could. Now, there is not much to

it once you get used to the routine. It is a bit of a culture shock

initially, getting used to the regimentation but the improvement in

how you feel is a benefit. As in Melbourne said of me, I was

probably much sicker than I thought I was when I went onto dialysis.

The other thing about dialysis is that you are forced into a quiet

time for 4 or 5 hours session. How you manage that time is important.

I sew, knit, play chess on the computer and read for most of the

time, seldom sleeping. that is my experience for what it is worth.

Derrick

Sydney Australia

> Pierre,

>

> My creatnine is creeping up. The other day it was at 5.7. These

doctors don't seem worried about me starting dialysis real soon.

They keep asking me though if I feel any of the simptoms of Kidney

failure yet. My question to you is; how long does it take for a

fistula to develop. I am worried that they may wait to the last

minute to get this done. NOT THAT I AM IN ANY HURRY!!!

>

June 4, 2003

---

Wow Derrick !

You can sew and knit ??? I am impressed !

Take care,

Elvira

In iga-nephropathy , " Derrick Hartley "

<derrickh@b...> wrote:

> ,

> Pierre is in the best position to answer this question

really.

> Pierre advised me to have the fistula prepared as early as

possible,

> at least 3 months in advance. In my case, the fistula was prepared

2

> months in advance and I ran into a few problems because it hadn't

> quite developed enough.It is ok now and developing quite well. On

the

> dialysis side, my creatinine was quite high when I elected to go

onto

> dialysis, but creatinine is not the only indicator. Urea level and

> how you feel are also good indicators. The problem with how you

feel

> is some people can tolerate quite high levels of toxins and still

> soldier on. Had Christmas not interferred, I would have elected to

go

> on earlier. Looking back, I was quite worried about going onto

> dialysis and delayed it as much as I could. Now, there is not much

to

> it once you get used to the routine. It is a bit of a culture shock

> initially, getting used to the regimentation but the improvement in

> how you feel is a benefit. As in Melbourne said of me, I was

> probably much sicker than I thought I was when I went onto dialysis.

> The other thing about dialysis is that you are forced into a

quiet

> time for 4 or 5 hours session. How you manage that time is

important.

> I sew, knit, play chess on the computer and read for most of the

> time, seldom sleeping. that is my experience for what it is worth.

>

> Derrick

> Sydney Australia

>

> > Pierre,

> >

> > My creatnine is creeping up. The other day it was at 5.7. These

> doctors don't seem worried about me starting dialysis real soon.

> They keep asking me though if I feel any of the simptoms of Kidney

> failure yet. My question to you is; how long does it take for a

> fistula to develop. I am worried that they may wait to the last

> minute to get this done. NOT THAT I AM IN ANY HURRY!!!

> >

June 4, 2003

,

Be careful then and don't allow yourself to lose too much weight, or get

malnourished. If you are eating a good breakfast and lunch, hopefully you are

getting the nutrition you need.

Take care of yourself and God bless you.

June 4, 2003

Thank you for those nice wishes, but it doesn't look good does it? The

only symptom that I have is the weight loss due in part to no appatite in the

evening. I am fine for breakfast and lunch, but if I have anything in the

afternoon, I can hardly bring myself to eat anything in the evening.

Re: fistula

Hi ,

I am sure sorry to hear your creatinine is up to 5.7. I am surprised you

aren't having symptoms yet. I will have to defer to Pierre on the length of

time

for the fistula for sure, but I thought he said the longer the better to

allow it time to develop and mature. I hope you can stabilize where you are!

Anything come from all the testing of your sisters?

June 4, 2003

Hi .

In a real pinch, they can try to use a fistula after a couple of weeks and

hope it develops with use, with a low flow setting, but that's not ideal,

and it may risk damaging it.

One thing to realise is that a fistula doesn't fully develop until it's

actually used, but it needs a few months to grow large enough. It develops

gradually during that time, but ideally, you would want the surgery done at

least 6 months before, and certainly 4 months before. This allows plenty of

time for healing (about 3-4 weeks), and then plenty of time for developing

(which requires a bit of effort on your part to exercise it as instructed).

This usually takes about 3 months, but it can be more.

Other than the time required for the fistula to mature enough for use, the

other factor to consider is that, as you get closer to dialysis, the time

you have left is extremely unpredictable. They can be telling you it's a

year down the road, and then a month later, you're on dialysis. For that

reason, it's best to start getting things in motion as soon as you reach the

stage where you're predicted to be about a year away. Using myself as an

example, my nephrologist put in the referral for fistula surgery when my

serum creatinine reached 400 umol/L (knowing that I would start when it

reached 500-600). That was January 2002. The surgery was done in April 2002.

At that point, I had significant improvement in my serum creatinine (down to

302 umol/L). Nevertheless, somewhere near the end of July, my kidney failure

symptoms took a sudden turn, and I started dialysis the first week of

October. So, that was about 9 months after the fistula surgery was ordered,

and about 6 months after the actual fistula surgery. By that time, my

fistula was nicely developed.

But as far as I could see, my fistula didn't really start to show until

after 4 months.

There's a bit of best guesswork involved for the nephrologist, but where I

live, they like to look at putting in the fistula 6-12 months before. That

way, it probably isn't too early, and usually, it's not too late either.

Pierre

fistula

> Pierre,

>

> My creatnine is creeping up. The other day it was at 5.7. These doctors

don't seem worried about me starting dialysis real soon. They keep asking

me though if I feel any of the simptoms of Kidney failure yet. My question

to you is; how long does it take for a fistula to develop. I am worried

that they may wait to the last minute to get this done. NOT THAT I AM IN

ANY HURRY!!!

>

June 4, 2003

Be sure to tell your nephrology team about this symptom. Actual symptoms

play a large role in deciding when they start you on dialysis. It's not just

about numbers. Also, it's extremely important to eat adequately, even though

you don't have the appetite. For one thing, even if you're not at the level

of malnutrition (a heavy risk factor for problems once you are on dialysis),

not eating enough protein especially can mask the level of renal failure a

bit, and make your numbers look better than they really are.

Good luck .

Pierre

Re: fistula

> Thank you for those nice wishes, but it doesn't look good does it?

The only symptom that I have is the weight loss due in part to no appatite

in the evening. I am fine for breakfast and lunch, but if I have anything

in the afternoon, I can hardly bring myself to eat anything in the evening.

>

June 5, 2003

Thanks Pierre,

My Neph. noted the weight loss on my last visit. He did talk to me about that

in conjunction with how I was feeling. We all know it is not going to be long

before I go on dialysis. This will be an interesting experience!

Re: fistula

> Thank you for those nice wishes, but it doesn't look good does it?

The only symptom that I have is the weight loss due in part to no appatite

in the evening. I am fine for breakfast and lunch, but if I have anything

in the afternoon, I can hardly bring myself to eat anything in the evening.

>

June 5, 2003

Great Pierre,

I am printing your responce as I type and am going to take it to my next Dr.

appointment. :-)

fistula

> Pierre,

>

> My creatnine is creeping up. The other day it was at 5.7. These doctors

don't seem worried about me starting dialysis real soon. They keep asking

me though if I feel any of the simptoms of Kidney failure yet. My question

to you is; how long does it take for a fistula to develop. I am worried

that they may wait to the last minute to get this done. NOT THAT I AM IN

ANY HURRY!!!

>

June 5, 2003

Thanks ,

Actually it is kind of nice to loose some weight because I have weighed about 30

to 40 pounds over my ideal weight. This 22 pounds puts me back to a better

weight. That is what happens to smokers who quit. Weight!!

Re: fistula

,

Be careful then and don't allow yourself to lose too much weight, or get

malnourished. If you are eating a good breakfast and lunch, hopefully you are

getting the nutrition you need.

Take care of yourself and God bless you.

June 5, 2003

Hi ,

I know that things are just not to good for you right now, but you seem to

have it together emotionally. What is going on with your Sisters'

evaluations? I'm sure the unknown is what would make a person crazy.

I do have a question for you and the group though, many here talk about the

weight loss. (which is something that I can't relate to, Ha) Can everyone

expect weight loss when they're close to end stage? Secondly, does the

weight loss happen due to toxins, loss of appetite or other factors? Just

curious...

Connie

Moderator, USA

Re: fistula

Thanks Pierre,

My Neph. noted the weight loss on my last visit. He did talk to me about

that in conjunction with how I was feeling. We all know it is not going to

be long before I go on dialysis. This will be an interesting experience!

Re: fistula

> Thank you for those nice wishes, but it doesn't look good does it?

The only symptom that I have is the weight loss due in part to no appatite

in the evening. I am fine for breakfast and lunch, but if I have anything

in the afternoon, I can hardly bring myself to eat anything in the

evening.

>

June 5, 2003

Hi Connie,

I can say that for me, I think it is mainly a loss of appetite. I could be

perfectly fine eating only once a day. I really very rarely get the feeling of

hunger. I could easily go a day or two without eating at all if I didn't

force myself to eat even though I am not hungry. I often just forget to eat

during the day, and I don't have the hunger signal to remind me it is time to

eat.

I just get busy at work and before I know it, it is dinner time.

My natural tendency is to lose weight. I have to be careful and am

constantly working on gaining back lost ground. My doctor keeps telling me to

keep

candy on my desk and/or drink sodas (not diet, and not colas due to the

phosphorus in Colas) just to try to up my caloric intake.

I think fatigue also contributes. Sometimes after work I am so tired, I

don't feel like cooking. Good thing my hubby loves the kitchen :-) He worked

his

way through college as a chef, so he spoils me in helping with meal

preparations.

June 5, 2003

I am not as far along as you are . My creatinine is running just under

3.0. Only bad thing is that it was 2.0 in Jan, so it has increased pretty

fast this year. That is why they are talking about putting me on Cellcept in

the

clinical trial at Stanford, or the dreaded Prednisone.

Right now, my doctor has taken me off my Lisinopril for the last two weeks to

see if that will help my creatinine and potassium levels. I guess it is a

risk/benefit decision.

I will find out on Tuesday.

June 5, 2003

Hi Connie,

I thought that I told everyone that my sisters can't donate because they do

have Proteins. Kitty went to a Nephrologist and he said that he was going

to treat her as if she has IGaN. The Dr.s also say that they see no reason

to do an biopsy because they are so in the normal range on creatine. They

are both on Ace inhibitors. I don't know about the fish oil Knowing them,

they will fall in love with the fish oil. Anyway, I have a friend who is in

the midst of being tested and a cousin of my husband's says he can be tested

too. We will see. I think I remember thinking that I didn't want to talk

about the new people being tested because I was scared that I would jinx it.

I am also on the transplant list. That is interesting.

On the weight issue. For me it is loss of appetite and I think it is

probably because I am so close to end stage. Heck, my creating was 5.7 last

week. That is up a whole .6 from the first of March. Not a good sign. I

am really trying to watch the salt. You can't imagine how nothing food

tastes without salt. Uck! I do try to eat a good bowl of cereal with some

fruits on it. Shredded Wheat has no sodium! I also try to eat something at

lunch. Today I had a couple pieces of toast from the bread that my husband

helped me make. In a batch that makes 3 loaves, there is a total 1/2

teaspoon of salt. I think that is pretty good. I use unsalted margarine or

butter. At night, if I eat any snack in the afternoon I am not really

hungry. O.K. Pierre, I am watching the fruits that I eat and I do try to

get some protein! So that is what is going on with me.

Also, I am on good antidepressants. I don't think I could function with all

this going on without them. When it looked like my sisters were a no-go, I

called my general Dr. and told his nurse that I had kidney disease and it

looked like I was not going to get a transplant and I need my antidepressant

upped. The next visit to the druggist I had double wellbutrin. I was on

the lowest dose until then. Thank you for asking.

Re: fistula

>

> > Thank you for those nice wishes, but it doesn't look good does

it?

> The only symptom that I have is the weight loss due in part to no

appatite

> in the evening. I am fine for breakfast and lunch, but if I have

anything

> in the afternoon, I can hardly bring myself to eat anything in the

> evening.

> >

>

June 5, 2003

,

What is you creatine? Are you at or near end stage yet?

Re: fistula

Hi Connie,

I can say that for me, I think it is mainly a loss of appetite. I could be

perfectly fine eating only once a day. I really very rarely get the feeling

of

hunger. I could easily go a day or two without eating at all if I didn't

force myself to eat even though I am not hungry. I often just forget to eat

during the day, and I don't have the hunger signal to remind me it is time to

eat.

I just get busy at work and before I know it, it is dinner time.

My natural tendency is to lose weight. I have to be careful and am

constantly working on gaining back lost ground. My doctor keeps telling me to

keep

candy on my desk and/or drink sodas (not diet, and not colas due to the

phosphorus in Colas) just to try to up my caloric intake.

I think fatigue also contributes. Sometimes after work I am so tired, I

don't feel like cooking. Good thing my hubby loves the kitchen :-) He worked

his

way through college as a chef, so he spoils me in helping with meal

preparations.

June 5, 2003

OOOO that is a big jump in a short time.

Re: fistula

I am not as far along as you are . My creatinine is running just under

3.0. Only bad thing is that it was 2.0 in Jan, so it has increased pretty

fast this year. That is why they are talking about putting me on Cellcept in

the

clinical trial at Stanford, or the dreaded Prednisone.

Right now, my doctor has taken me off my Lisinopril for the last two weeks to

see if that will help my creatinine and potassium levels. I guess it is a

risk/benefit decision.

I will find out on Tuesday.

June 6, 2003

There's nothing intrinsic about having kidney failure that causes weight

loss, except the lack of appetite - which I guess may be the body's way of

protecting itself. As you get closer to end-stage, you tend to lose your

appetite, and when you do eat, everything tastes like cardboard (or at

least, the sense of taste is a little dulled).

Pierre

RE: fistula

> Hi ,

> I know that things are just not to good for you right now, but you seem to

> have it together emotionally. What is going on with your Sisters'

> evaluations? I'm sure the unknown is what would make a person crazy.

>

> I do have a question for you and the group though, many here talk about

the

> weight loss. (which is something that I can't relate to, Ha) Can everyone

> expect weight loss when they're close to end stage? Secondly, does the

> weight loss happen due to toxins, loss of appetite or other factors? Just

> curious...

>

> Connie

> Moderator, USA

>

June 6, 2003

Thanks Pierre, I know that some people lose weight, but not all so I was

just curious as to the cause.

Connie

Re: fistula

There's nothing intrinsic about having kidney failure that causes weight

loss, except the lack of appetite - which I guess may be the body's way of

protecting itself. As you get closer to end-stage, you tend to lose your

appetite, and when you do eat, everything tastes like cardboard (or at

least, the sense of taste is a little dulled).

Pierre

RE: fistula

> Hi ,

> I know that things are just not to good for you right now, but you seem to

> have it together emotionally. What is going on with your Sisters'

> evaluations? I'm sure the unknown is what would make a person crazy.

>

> I do have a question for you and the group though, many here talk about

the

> weight loss. (which is something that I can't relate to, Ha) Can everyone

> expect weight loss when they're close to end stage? Secondly, does the

> weight loss happen due to toxins, loss of appetite or other factors? Just

> curious...

>

> Connie

> Moderator, USA

>

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Thank you

June 6, 2003

,

I'm sorry if I missed your post about your sisters. I did remember though

that protein was a concern along with exercise and I guess I just didn't get

the posting regarding the final outcome with them. I could definitely see

why you wouldn't want to " jinx " yourself by telling people to soon about

other possibilities.

As far as the anti-depressants, I'm very glad that they are helping you.

Sometimes this is a lot to handle in addition to all of the other things

that we must deal with.

Take care of yourself and hopefully your numbers will remain stable for a

while.

Connie

Co-Moderator, USA