Re: Question about dialysis

[Guest guest]

Hi Jill,

Are you rapidly progressing? I think I was at 50% function more than 10

years ago and I am not quite yet on dialysis. Unless yours is the aggressive

type, IgAN tends to be much more slowly progressing. If you are at 47% now, I

would be very surprised if you were on dialysis in a year. I am not a

doctor, but if you have some history of your creatinine over time, you can plug

those values into the inverse creatinine plotting tool and it will predict when

you will reach 15% and when you will reach 10%. It was right on in the

prediction as to when I would reach 15% for me and it says I will reach 10% by

November which is likely pretty close too.

Here is the link if you want to try it.

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools/index.h

tml_

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools/index.htm\

l)

In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight Time,

aj72300@... writes:

Okay, not sure if I posted after my last appt. or not, but here it

goes...My neph says that my kidneys are functioning at 47%, which is

good, but we are guessing that at the rate I am declining I will be on

dialysis within a year. So heres my question, my husband and I are

considering moving. In fact he wants to build a new house, which

would be a lot of stress, etc. It would also mean moving an hour away

from my hospital. Can anyone on dialysis tell me, is this

reasonable? How do you feel? Do you have the energy to drive an hour

there and back after dialysis? Other news, my protein is starting to

creep up again (1900 right now) so he wants to up my Enalipril but

everytime he does that my potassium gets to high, so we are waiting it

out another 3 months to see what happens.

Jill

[Guest guest]

Hi ,

That is a big decrease over a year. I can only pray your doctor is able to

maintain stability near the 50% mark for some time. Keeping the protein

spill down should help to protect the kidney function you do have. Also, I

know

we are often like a broken record on BP, but do keep a close eye on that as

well.

In a message dated 8/8/2005 11:36:48 A.M. Pacific Daylight Time,

aj72300@... writes:

1 year ago my kidneys were functioning at 91% now they are at 47%,

he said with all the scar tissue my biopsy showed, he is surprised

its been progressing this slow. So if I keep progressing at this

rate, I will be needing dialysis in about a year or so. His goal is

to keep me around 50% for as long as possible. Not only is the scar

tissue the problem but my protein was running at 7500 for a long

time, we had gotten it under control at 1400 and now it is starting

to increase again. Thanks for the websites!

Jill

[Guest guest]

It's never going to be as convenient to dialyze at a hospital or centre

which is an hour's drive away as it would be at one which is 10 minutes

away, but it certainly is feasible. I know many people who do that - they

have no choice. The only problem is that you can't know in advance how you

will feel after a treatment, or even before a treatment, for that matter.

This kind of leaves it up in the air as to whether it would be safe to drive

yourself for an hour. You have to plan on having someone drive you the first

few weeks, or at least the first few days. In addition, there could well be

days or evenings when your dialysis will be delayed, or when you will have

to stay longer after because your needle site started to bleed just when you

were about to leave, or when you might have blood pressure too low to be

released. These are things that can happen, and they do happen.

Now, after I started dialysis, I was among those that felt pretty well

compared to most. But for the first 6 months or so, I was extremely sleepy

on the drive home. I only lived about 10-15 minutes away under low traffic

conditions, but I remember at least a couple of times when I decided to just

pull over to the side of the road for a short while, or I stopped to get a

coffee. Gradually, this sleepiness went away.

If I had the choice, I would prefer to live not too far from the dialysis

centre, but it's not always possible.

Pierre

Question about dialysis

> Okay, not sure if I posted after my last appt. or not, but here it

> goes...My neph says that my kidneys are functioning at 47%, which is

> good, but we are guessing that at the rate I am declining I will be on

> dialysis within a year. So heres my question, my husband and I are

> considering moving. In fact he wants to build a new house, which

> would be a lot of stress, etc. It would also mean moving an hour away

> from my hospital. Can anyone on dialysis tell me, is this

> reasonable? How do you feel? Do you have the energy to drive an hour

> there and back after dialysis? Other news, my protein is starting to

> creep up again (1900 right now) so he wants to up my Enalipril but

> everytime he does that my potassium gets to high, so we are waiting it

> out another 3 months to see what happens.

>

> Jill

>

>

[Guest guest]

Thank you Pierre, I appreciate your honesty. This is sort of what I

figured.

Jill

> It's never going to be as convenient to dialyze at a hospital or

centre

> which is an hour's drive away as it would be at one which is 10

minutes

> away, but it certainly is feasible. I know many people who do

that - they

> have no choice. The only problem is that you can't know in advance

how you

> will feel after a treatment, or even before a treatment, for that

matter.

> This kind of leaves it up in the air as to whether it would be

safe to drive

> yourself for an hour. You have to plan on having someone drive you

the first

> few weeks, or at least the first few days. In addition, there

could well be

> days or evenings when your dialysis will be delayed, or when you

will have

> to stay longer after because your needle site started to bleed

just when you

> were about to leave, or when you might have blood pressure too low

to be

> released. These are things that can happen, and they do happen.

>

> Now, after I started dialysis, I was among those that felt pretty

well

> compared to most. But for the first 6 months or so, I was

extremely sleepy

> on the drive home. I only lived about 10-15 minutes away under low

traffic

> conditions, but I remember at least a couple of times when I

decided to just

> pull over to the side of the road for a short while, or I stopped

to get a

> coffee. Gradually, this sleepiness went away.

>

> If I had the choice, I would prefer to live not too far from the

dialysis

> centre, but it's not always possible.

>

> Pierre

>

> Question about dialysis

>

>

> > Okay, not sure if I posted after my last appt. or not, but here

it

> > goes...My neph says that my kidneys are functioning at 47%,

which is

> > good, but we are guessing that at the rate I am declining I will

be on

> > dialysis within a year. So heres my question, my husband and I

are

> > considering moving. In fact he wants to build a new house, which

> > would be a lot of stress, etc. It would also mean moving an

hour away

> > from my hospital. Can anyone on dialysis tell me, is this

> > reasonable? How do you feel? Do you have the energy to drive

an hour

> > there and back after dialysis? Other news, my protein is

starting to

> > creep up again (1900 right now) so he wants to up my Enalipril

but

> > everytime he does that my potassium gets to high, so we are

waiting it

> > out another 3 months to see what happens.

> >

> > Jill

> >

> >

[Guest guest]

Similarly, I was at about 47% a good nine years before I started dialysis.

Pierre

Re: Question about dialysis

>

> Hi Jill,

>

> Are you rapidly progressing? I think I was at 50% function more than 10

> years ago and I am not quite yet on dialysis. Unless yours is the

> aggressive

> type, IgAN tends to be much more slowly progressing. If you are at 47%

> now, I

> would be very surprised if you were on dialysis in a year. I am not a

> doctor, but if you have some history of your creatinine over time, you

> can plug

> those values into the inverse creatinine plotting tool and it will

> predict when

> you will reach 15% and when you will reach 10%. It was right on in the

> prediction as to when I would reach 15% for me and it says I will reach

> 10% by

> November which is likely pretty close too.

>

> Here is the link if you want to try it.

>

> _http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools/index.h

> tml_

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools/index.htm\

l)

>

>

>

[Guest guest]

1 year ago my kidneys were functioning at 91% now they are at 47%,

he said with all the scar tissue my biopsy showed, he is surprised

its been progressing this slow. So if I keep progressing at this

rate, I will be needing dialysis in about a year or so. His goal is

to keep me around 50% for as long as possible. Not only is the scar

tissue the problem but my protein was running at 7500 for a long

time, we had gotten it under control at 1400 and now it is starting

to increase again. Thanks for the websites!

Jill

>

> Hi Jill,

>

> Are you rapidly progressing? I think I was at 50% function more

than 10

> years ago and I am not quite yet on dialysis. Unless yours is

the aggressive

> type, IgAN tends to be much more slowly progressing. If you are

at 47% now, I

> would be very surprised if you were on dialysis in a year. I am

not a

> doctor, but if you have some history of your creatinine over

time, you can plug

> those values into the inverse creatinine plotting tool and it

will predict when

> you will reach 15% and when you will reach 10%. It was right on

in the

> prediction as to when I would reach 15% for me and it says I will

reach 10% by

> November which is likely pretty close too.

>

> Here is the link if you want to try it.

>

>

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

s/index.h

> tml_

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

s/index.html)

>

>

>

> In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight Time,

> aj72300@y... writes:

>

> Okay, not sure if I posted after my last appt. or not, but here

it

> goes...My neph says that my kidneys are functioning at 47%, which

is

> good, but we are guessing that at the rate I am declining I will

be on

> dialysis within a year. So heres my question, my husband and I

are

> considering moving. In fact he wants to build a new house, which

> would be a lot of stress, etc. It would also mean moving an hour

away

> from my hospital. Can anyone on dialysis tell me, is this

> reasonable? How do you feel? Do you have the energy to drive an

hour

> there and back after dialysis? Other news, my protein is

starting to

> creep up again (1900 right now) so he wants to up my Enalipril

but

> everytime he does that my potassium gets to high, so we are

waiting it

> out another 3 months to see what happens.

>

> Jill

>

>

>

>

>

>

[Guest guest]

Thanks , I went on and it came up with Apr-06 / Feb-06 / Jun

06, which is about what we figured. Amazing what kind of

calculators they can come up with for our health!

Jill

>

> Hi Jill,

>

> Are you rapidly progressing? I think I was at 50% function more

than 10

> years ago and I am not quite yet on dialysis. Unless yours is

the aggressive

> type, IgAN tends to be much more slowly progressing. If you are

at 47% now, I

> would be very surprised if you were on dialysis in a year. I am

not a

> doctor, but if you have some history of your creatinine over

time, you can plug

> those values into the inverse creatinine plotting tool and it

will predict when

> you will reach 15% and when you will reach 10%. It was right on

in the

> prediction as to when I would reach 15% for me and it says I will

reach 10% by

> November which is likely pretty close too.

>

> Here is the link if you want to try it.

>

>

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

s/index.h

> tml_

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

s/index.html)

>

>

>

> In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight Time,

> aj72300@y... writes:

>

> Okay, not sure if I posted after my last appt. or not, but here

it

> goes...My neph says that my kidneys are functioning at 47%, which

is

> good, but we are guessing that at the rate I am declining I will

be on

> dialysis within a year. So heres my question, my husband and I

are

> considering moving. In fact he wants to build a new house, which

> would be a lot of stress, etc. It would also mean moving an hour

away

> from my hospital. Can anyone on dialysis tell me, is this

> reasonable? How do you feel? Do you have the energy to drive an

hour

> there and back after dialysis? Other news, my protein is

starting to

> creep up again (1900 right now) so he wants to up my Enalipril

but

> everytime he does that my potassium gets to high, so we are

waiting it

> out another 3 months to see what happens.

>

> Jill

>

>

>

>

>

>

[Guest guest]

Hi Jill,

That kind of decline over a year would have me very worried. I know it's a

reminder to me never to get too cocky. Fortunately, such rapid disease is

relatively rare. Can you please refresh my memory? When was the biopsy done?

Did it show crescents? Anything that would suggest such a rapid decline in

function? Was there anything else happening (bad cold throwing the numbers)

when then arrived at the 47%?

I just hope you and your neph succeed in keeping you around 50% for as long as

possible.

All the best,

Cy

Jill aj72300@...> wrote:

1 year ago my kidneys were functioning at 91% now they are at 47%,

he said with all the scar tissue my biopsy showed, he is surprised

its been progressing this slow. So if I keep progressing at this

rate, I will be needing dialysis in about a year or so. His goal is

to keep me around 50% for as long as possible. Not only is the scar

tissue the problem but my protein was running at 7500 for a long

time, we had gotten it under control at 1400 and now it is starting

to increase again. Thanks for the websites!

Jill

>

> Hi Jill,

>

> Are you rapidly progressing? I think I was at 50% function more

than 10

> years ago and I am not quite yet on dialysis. Unless yours is

the aggressive

> type, IgAN tends to be much more slowly progressing. If you are

at 47% now, I

> would be very surprised if you were on dialysis in a year. I am

not a

> doctor, but if you have some history of your creatinine over

time, you can plug

> those values into the inverse creatinine plotting tool and it

will predict when

> you will reach 15% and when you will reach 10%. It was right on

in the

> prediction as to when I would reach 15% for me and it says I will

reach 10% by

> November which is likely pretty close too.

>

> Here is the link if you want to try it.

>

>

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

s/index.h

> tml_

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

s/index.html)

>

>

>

> In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight Time,

> aj72300@y... writes:

>

> Okay, not sure if I posted after my last appt. or not, but here

it

> goes...My neph says that my kidneys are functioning at 47%, which

is

> good, but we are guessing that at the rate I am declining I will

be on

> dialysis within a year. So heres my question, my husband and I

are

> considering moving. In fact he wants to build a new house, which

> would be a lot of stress, etc. It would also mean moving an hour

away

> from my hospital. Can anyone on dialysis tell me, is this

> reasonable? How do you feel? Do you have the energy to drive an

hour

> there and back after dialysis? Other news, my protein is

starting to

> creep up again (1900 right now) so he wants to up my Enalipril

but

> everytime he does that my potassium gets to high, so we are

waiting it

> out another 3 months to see what happens.

>

> Jill

>

>

>

>

>

>

[Guest guest]

Jill:

I'm not on dialysis, but I read your post about going from 47% to dialysis in a

year. I always thought that I had a fairly aggressive IgAN (not the worst), but

it took me many years to get from 47% to the point where I could even be

considered for my tx, which can start well before dialysis. Is your progress

really that fast? I'm just curious.

Jill aj72300@...> wrote:

Okay, not sure if I posted after my last appt. or not, but here it

goes...My neph says that my kidneys are functioning at 47%, which is

good, but we are guessing that at the rate I am declining I will be on

dialysis within a year. So heres my question, my husband and I are

considering moving. In fact he wants to build a new house, which

would be a lot of stress, etc. It would also mean moving an hour away

from my hospital. Can anyone on dialysis tell me, is this

reasonable? How do you feel? Do you have the energy to drive an hour

there and back after dialysis? Other news, my protein is starting to

creep up again (1900 right now) so he wants to up my Enalipril but

everytime he does that my potassium gets to high, so we are waiting it

out another 3 months to see what happens.

Jill

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Thank you

[Guest guest]

The biopsy was done in January 2004. My creatine was .8 and kidney

function was 91%. My protein was 7500+ My creatine is now 1.8, my

function is 47% and my protein is 1900+ According to my Neph its

because of how much scar tissue I had or something called

sclorosis? I think, I can't remeber. Back then he told me 1/3 of

my kidneys were already lost to scar tissue. I wasn't worried, but

after hearing everyone else, I'm starting to get there. I guess I

just assumed we all pretty much were progressing at this rate. And

as far as the crescents, the name is ringing a bell, but I don't

remember what it was. It's very overwhelming to have all the biopsy

info thrown at you. Maybe I should put it on here and you guys

could help me translate.

Jill

> >

> > Hi Jill,

> >

> > Are you rapidly progressing? I think I was at 50% function more

> than 10

> > years ago and I am not quite yet on dialysis. Unless yours is

> the aggressive

> > type, IgAN tends to be much more slowly progressing. If you are

> at 47% now, I

> > would be very surprised if you were on dialysis in a year. I am

> not a

> > doctor, but if you have some history of your creatinine over

> time, you can plug

> > those values into the inverse creatinine plotting tool and it

> will predict when

> > you will reach 15% and when you will reach 10%. It was right on

> in the

> > prediction as to when I would reach 15% for me and it says I

will

> reach 10% by

> > November which is likely pretty close too.

> >

> > Here is the link if you want to try it.

> >

> >

>

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> s/index.h

> > tml_

> >

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> s/index.html)

> >

> >

> >

> > In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight Time,

> > aj72300@y... writes:

> >

> > Okay, not sure if I posted after my last appt. or not, but here

> it

> > goes...My neph says that my kidneys are functioning at 47%,

which

> is

> > good, but we are guessing that at the rate I am declining I will

> be on

> > dialysis within a year. So heres my question, my husband and I

> are

> > considering moving. In fact he wants to build a new house, which

> > would be a lot of stress, etc. It would also mean moving an hour

> away

> > from my hospital. Can anyone on dialysis tell me, is this

> > reasonable? How do you feel? Do you have the energy to drive an

> hour

> > there and back after dialysis? Other news, my protein is

> starting to

> > creep up again (1900 right now) so he wants to up my Enalipril

> but

> > everytime he does that my potassium gets to high, so we are

> waiting it

> > out another 3 months to see what happens.

> >

> > Jill

> >

> >

> >

> >

> >

> >

[Guest guest]

Wow Jill. I just read your other posts and I am sorry that I did not read them

all before I replied. I am sorry that your progression is that fast. Have you

considered looking for potential donors?

Jill aj72300@...> wrote:

Thanks , I went on and it came up with Apr-06 / Feb-06 / Jun

06, which is about what we figured. Amazing what kind of

calculators they can come up with for our health!

Jill

>

> Hi Jill,

>

> Are you rapidly progressing? I think I was at 50% function more

than 10

> years ago and I am not quite yet on dialysis. Unless yours is

the aggressive

> type, IgAN tends to be much more slowly progressing. If you are

at 47% now, I

> would be very surprised if you were on dialysis in a year. I am

not a

> doctor, but if you have some history of your creatinine over

time, you can plug

> those values into the inverse creatinine plotting tool and it

will predict when

> you will reach 15% and when you will reach 10%. It was right on

in the

> prediction as to when I would reach 15% for me and it says I will

reach 10% by

> November which is likely pretty close too.

>

> Here is the link if you want to try it.

>

>

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

s/index.h

> tml_

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

s/index.html)

>

>

>

> In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight Time,

> aj72300@y... writes:

>

> Okay, not sure if I posted after my last appt. or not, but here

it

> goes...My neph says that my kidneys are functioning at 47%, which

is

> good, but we are guessing that at the rate I am declining I will

be on

> dialysis within a year. So heres my question, my husband and I

are

> considering moving. In fact he wants to build a new house, which

> would be a lot of stress, etc. It would also mean moving an hour

away

> from my hospital. Can anyone on dialysis tell me, is this

> reasonable? How do you feel? Do you have the energy to drive an

hour

> there and back after dialysis? Other news, my protein is

starting to

> creep up again (1900 right now) so he wants to up my Enalipril

but

> everytime he does that my potassium gets to high, so we are

waiting it

> out another 3 months to see what happens.

>

> Jill

>

>

>

>

>

>

[Guest guest]

Okay, everyone is really starting to freak me out now. Should I

be? All I know is what I was told at my last appointment. When we

biopsed Jan 2004 I was at 91%, now in July 2005 I was at 47%. When

he biopsed me, we started major doses of pred, etc. I was on that

for quite a long time to try and get the protein under control.

Should I be going for a 2nd opinion? I really like this doctor and

everyone I know says he's the best.

Jill

> Okay, not sure if I posted after my last appt. or not, but here it

> goes...My neph says that my kidneys are functioning at 47%, which

is

> good, but we are guessing that at the rate I am declining I will

be on

> dialysis within a year. So heres my question, my husband and I

are

> considering moving. In fact he wants to build a new house, which

> would be a lot of stress, etc. It would also mean moving an hour

away

> from my hospital. Can anyone on dialysis tell me, is this

> reasonable? How do you feel? Do you have the energy to drive an

hour

> there and back after dialysis? Other news, my protein is starting

to

> creep up again (1900 right now) so he wants to up my Enalipril but

> everytime he does that my potassium gets to high, so we are

waiting it

> out another 3 months to see what happens.

>

> Jill

>

>

>

>

>

> 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]

I have a very large family that have all offered, but my doctor says

we are not at that stage yet. When do we get there?

Jill

> >

> > Hi Jill,

> >

> > Are you rapidly progressing? I think I was at 50% function more

> than 10

> > years ago and I am not quite yet on dialysis. Unless yours is

> the aggressive

> > type, IgAN tends to be much more slowly progressing. If you

are

> at 47% now, I

> > would be very surprised if you were on dialysis in a year. I

am

> not a

> > doctor, but if you have some history of your creatinine over

> time, you can plug

> > those values into the inverse creatinine plotting tool and it

> will predict when

> > you will reach 15% and when you will reach 10%. It was right

on

> in the

> > prediction as to when I would reach 15% for me and it says I

will

> reach 10% by

> > November which is likely pretty close too.

> >

> > Here is the link if you want to try it.

> >

> >

>

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> s/index.h

> > tml_

> >

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> s/index.html)

> >

> >

> >

> > In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight Time,

> > aj72300@y... writes:

> >

> > Okay, not sure if I posted after my last appt. or not, but here

> it

> > goes...My neph says that my kidneys are functioning at 47%,

which

> is

> > good, but we are guessing that at the rate I am declining I

will

> be on

> > dialysis within a year. So heres my question, my husband and I

> are

> > considering moving. In fact he wants to build a new house,

which

> > would be a lot of stress, etc. It would also mean moving an

hour

> away

> > from my hospital. Can anyone on dialysis tell me, is this

> > reasonable? How do you feel? Do you have the energy to drive

an

> hour

> > there and back after dialysis? Other news, my protein is

> starting to

> > creep up again (1900 right now) so he wants to up my Enalipril

> but

> > everytime he does that my potassium gets to high, so we are

> waiting it

> > out another 3 months to see what happens.

> >

> > Jill

> >

> >

> >

> >

> >

> >

[Guest guest]

Sorry if I freaked you out.

When you get around the 20% mark you can start the eval process, and that's when

you can be placed on the UNOS list. My sisters also volunteered to be tested,

and both started, but the center will usually want one to step up as the lead

donor. That's for insurance purposes (isn't our healthcare system great - and

highly profitable). I really started to think about it when I was in the low

30%'s. Dialysis is usually started in the 10-15% range depending on your doc.

I would sit down with your family and give them the whole story. Barb (my donor

sister) or I would be happy to discuss with them what it was like. Where are

you?

Jill aj72300@...> wrote:

I have a very large family that have all offered, but my doctor says

we are not at that stage yet. When do we get there?

Jill

> >

> > Hi Jill,

> >

> > Are you rapidly progressing? I think I was at 50% function more

> than 10

> > years ago and I am not quite yet on dialysis. Unless yours is

> the aggressive

> > type, IgAN tends to be much more slowly progressing. If you

are

> at 47% now, I

> > would be very surprised if you were on dialysis in a year. I

am

> not a

> > doctor, but if you have some history of your creatinine over

> time, you can plug

> > those values into the inverse creatinine plotting tool and it

> will predict when

> > you will reach 15% and when you will reach 10%. It was right

on

> in the

> > prediction as to when I would reach 15% for me and it says I

will

> reach 10% by

> > November which is likely pretty close too.

> >

> > Here is the link if you want to try it.

> >

> >

>

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> s/index.h

> > tml_

> >

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> s/index.html)

> >

> >

> >

> > In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight Time,

> > aj72300@y... writes:

> >

> > Okay, not sure if I posted after my last appt. or not, but here

> it

> > goes...My neph says that my kidneys are functioning at 47%,

which

> is

> > good, but we are guessing that at the rate I am declining I

will

> be on

> > dialysis within a year. So heres my question, my husband and I

> are

> > considering moving. In fact he wants to build a new house,

which

> > would be a lot of stress, etc. It would also mean moving an

hour

> away

> > from my hospital. Can anyone on dialysis tell me, is this

> > reasonable? How do you feel? Do you have the energy to drive

an

> hour

> > there and back after dialysis? Other news, my protein is

> starting to

> > creep up again (1900 right now) so he wants to up my Enalipril

> but

> > everytime he does that my potassium gets to high, so we are

> waiting it

> > out another 3 months to see what happens.

> >

> > Jill

> >

> >

> >

> >

> >

> >

[Guest guest]

I'm in Illinois. Here's my other problem, how do you ask someone to

do this for you, I mean, everyone I know has volunteered but I would

feel so weird about taking them up on it. This is such a HUGE

deal. I feel so clueless when it comes to all of this, my doctor is

great, but he's kind of a " on a need to know basis " kind of guy, so

I usually end up finding stuff out on my own.

Jill

> > >

> > > Hi Jill,

> > >

> > > Are you rapidly progressing? I think I was at 50% function

more

> > than 10

> > > years ago and I am not quite yet on dialysis. Unless yours is

> > the aggressive

> > > type, IgAN tends to be much more slowly progressing. If you

> are

> > at 47% now, I

> > > would be very surprised if you were on dialysis in a year. I

> am

> > not a

> > > doctor, but if you have some history of your creatinine over

> > time, you can plug

> > > those values into the inverse creatinine plotting tool and it

> > will predict when

> > > you will reach 15% and when you will reach 10%. It was right

> on

> > in the

> > > prediction as to when I would reach 15% for me and it says I

> will

> > reach 10% by

> > > November which is likely pretty close too.

> > >

> > > Here is the link if you want to try it.

> > >

> > >

> >

>

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> > s/index.h

> > > tml_

> > >

> >

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> > s/index.html)

> > >

> > >

> > >

> > > In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight

Time,

> > > aj72300@y... writes:

> > >

> > > Okay, not sure if I posted after my last appt. or not, but

here

> > it

> > > goes...My neph says that my kidneys are functioning at 47%,

> which

> > is

> > > good, but we are guessing that at the rate I am declining I

> will

> > be on

> > > dialysis within a year. So heres my question, my husband and

I

> > are

> > > considering moving. In fact he wants to build a new house,

> which

> > > would be a lot of stress, etc. It would also mean moving an

> hour

> > away

> > > from my hospital. Can anyone on dialysis tell me, is this

> > > reasonable? How do you feel? Do you have the energy to

drive

> an

> > hour

> > > there and back after dialysis? Other news, my protein is

> > starting to

> > > creep up again (1900 right now) so he wants to up my

Enalipril

> > but

> > > everytime he does that my potassium gets to high, so we are

> > waiting it

> > > out another 3 months to see what happens.

> > >

> > > Jill

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Jill:

The best way is to not ask - if someone volunteers, keep a note to yourself to

remember. Once you reach the point you can go for your evaluation, you'll learn

about living donation. AT that point, you can reopen the conversation with those

who volunteered, and if they are still interested, direct them to the tx center

of your choice.

Yes, this is HUGE. But for someone in your family, who cares for you and loves

you, watching you get sicker is not easy. Seeing you recovering and leading a

normal life is also HUGE. And to know that they were a part of that bonds you in

a way no other person can understand. When they say the 'Gift of Life " they are

not kidding.

Jill aj72300@...> wrote:

I'm in Illinois. Here's my other problem, how do you ask someone to

do this for you, I mean, everyone I know has volunteered but I would

feel so weird about taking them up on it. This is such a HUGE

deal. I feel so clueless when it comes to all of this, my doctor is

great, but he's kind of a " on a need to know basis " kind of guy, so

I usually end up finding stuff out on my own.

Jill

> > >

> > > Hi Jill,

> > >

> > > Are you rapidly progressing? I think I was at 50% function

more

> > than 10

> > > years ago and I am not quite yet on dialysis. Unless yours is

> > the aggressive

> > > type, IgAN tends to be much more slowly progressing. If you

> are

> > at 47% now, I

> > > would be very surprised if you were on dialysis in a year. I

> am

> > not a

> > > doctor, but if you have some history of your creatinine over

> > time, you can plug

> > > those values into the inverse creatinine plotting tool and it

> > will predict when

> > > you will reach 15% and when you will reach 10%. It was right

> on

> > in the

> > > prediction as to when I would reach 15% for me and it says I

> will

> > reach 10% by

> > > November which is likely pretty close too.

> > >

> > > Here is the link if you want to try it.

> > >

> > >

> >

>

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> > s/index.h

> > > tml_

> > >

> >

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> > s/index.html)

> > >

> > >

> > >

> > > In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight

Time,

> > > aj72300@y... writes:

> > >

> > > Okay, not sure if I posted after my last appt. or not, but

here

> > it

> > > goes...My neph says that my kidneys are functioning at 47%,

> which

> > is

> > > good, but we are guessing that at the rate I am declining I

> will

> > be on

> > > dialysis within a year. So heres my question, my husband and

I

> > are

> > > considering moving. In fact he wants to build a new house,

> which

> > > would be a lot of stress, etc. It would also mean moving an

> hour

> > away

> > > from my hospital. Can anyone on dialysis tell me, is this

> > > reasonable? How do you feel? Do you have the energy to

drive

> an

> > hour

> > > there and back after dialysis? Other news, my protein is

> > starting to

> > > creep up again (1900 right now) so he wants to up my

Enalipril

> > but

> > > everytime he does that my potassium gets to high, so we are

> > waiting it

> > > out another 3 months to see what happens.

> > >

> > > Jill

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Thank you , I know I would do it in a second for anyone of my

family members if I could. I never thought of being able to give

someone the gift of life, it must, in a way, be the most awesome

feeling in the world.

Jill

> > > >

> > > > Hi Jill,

> > > >

> > > > Are you rapidly progressing? I think I was at 50% function

> more

> > > than 10

> > > > years ago and I am not quite yet on dialysis. Unless yours

is

> > > the aggressive

> > > > type, IgAN tends to be much more slowly progressing. If

you

> > are

> > > at 47% now, I

> > > > would be very surprised if you were on dialysis in a year.

I

> > am

> > > not a

> > > > doctor, but if you have some history of your creatinine

over

> > > time, you can plug

> > > > those values into the inverse creatinine plotting tool and

it

> > > will predict when

> > > > you will reach 15% and when you will reach 10%. It was

right

> > on

> > > in the

> > > > prediction as to when I would reach 15% for me and it says

I

> > will

> > > reach 10% by

> > > > November which is likely pretty close too.

> > > >

> > > > Here is the link if you want to try it.

> > > >

> > > >

> > >

> >

>

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> > > s/index.h

> > > > tml_

> > > >

> > >

> >

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tool

> > > s/index.html)

> > > >

> > > >

> > > >

> > > > In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight

> Time,

> > > > aj72300@y... writes:

> > > >

> > > > Okay, not sure if I posted after my last appt. or not, but

> here

> > > it

> > > > goes...My neph says that my kidneys are functioning at 47%,

> > which

> > > is

> > > > good, but we are guessing that at the rate I am declining I

> > will

> > > be on

> > > > dialysis within a year. So heres my question, my husband

and

> I

> > > are

> > > > considering moving. In fact he wants to build a new house,

> > which

> > > > would be a lot of stress, etc. It would also mean moving

an

> > hour

> > > away

> > > > from my hospital. Can anyone on dialysis tell me, is this

> > > > reasonable? How do you feel? Do you have the energy to

> drive

> > an

> > > hour

> > > > there and back after dialysis? Other news, my protein is

> > > starting to

> > > > creep up again (1900 right now) so he wants to up my

> Enalipril

> > > but

> > > > everytime he does that my potassium gets to high, so we are

> > > waiting it

> > > > out another 3 months to see what happens.

> > > >

> > > > Jill

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

thanks for the calculator link...it told me what I had figured out on my

own...if I keep going at my current rate I've got about 3 years left. If I

speed up after going off the pred I'm looking at about 1.5 years. My neph

wouldn't confirm this calculation but his " Let's focus on losing weight as our

main goal " spoke volumes to me since he has been a real fighter up to this

point. Ah well my sisters said their will be a race to see who will be the best

donor, looks like all 3 of them plus a few of my nieces, my sister-in-law, and a

nephew want to test for donor if and when the time comes.

Besides the headaches and itchiness when I eat wrong I'm doing well so far. I

can't complain.

Amy G.

Re: Question about dialysis

Hi Jill,

Are you rapidly progressing? I think I was at 50% function more than 10

years ago and I am not quite yet on dialysis. Unless yours is the aggressive

type, IgAN tends to be much more slowly progressing. If you are at 47% now,

I

would be very surprised if you were on dialysis in a year. I am not a

doctor, but if you have some history of your creatinine over time, you can

plug

those values into the inverse creatinine plotting tool and it will predict

when

you will reach 15% and when you will reach 10%. It was right on in the

prediction as to when I would reach 15% for me and it says I will reach 10%

by

November which is likely pretty close too.

Here is the link if you want to try it.

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools/index.h

tml_

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools/index.htm\

l)

In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight Time,

aj72300@... writes:

Okay, not sure if I posted after my last appt. or not, but here it

goes...My neph says that my kidneys are functioning at 47%, which is

good, but we are guessing that at the rate I am declining I will be on

dialysis within a year. So heres my question, my husband and I are

considering moving. In fact he wants to build a new house, which

would be a lot of stress, etc. It would also mean moving an hour away

from my hospital. Can anyone on dialysis tell me, is this

reasonable? How do you feel? Do you have the energy to drive an hour

there and back after dialysis? Other news, my protein is starting to

creep up again (1900 right now) so he wants to up my Enalipril but

everytime he does that my potassium gets to high, so we are waiting it

out another 3 months to see what happens.

Jill

[Guest guest]

Jill don't freak out too much, I also went from 100% function to 35% in under 6

months. So far the pred has kept me moving slower but I'm still on a downward

slope. It's rare but it does happen, I'm sorry it's also happening to you. I

hope you can take some comfort in the fact that you aren't alone with the rapid

decline. I've been on pred for nearly 2 years now and I should be off it in

Sept if things still look good....or even if they don't look good I guess since

my neph feels I need to come off it now. (too many side effects becoming

troublesome) When you are given such a short period of time to adjust to the

disease it is hard, but the support of everyone here has given me hope. I know

that I will be fine no matter what comes my way now, I'll have to make some

changes in my life but in the end it will be o.k.

Hang in there, we'll get thru this together!

Amy G.

Re: Question about dialysis

Okay, everyone is really starting to freak me out now. Should I

be? All I know is what I was told at my last appointment. When we

biopsed Jan 2004 I was at 91%, now in July 2005 I was at 47%. When

he biopsed me, we started major doses of pred, etc. I was on that

for quite a long time to try and get the protein under control.

Should I be going for a 2nd opinion? I really like this doctor and

everyone I know says he's the best.

Jill

> Okay, not sure if I posted after my last appt. or not, but here it

> goes...My neph says that my kidneys are functioning at 47%, which

is

> good, but we are guessing that at the rate I am declining I will

be on

> dialysis within a year. So heres my question, my husband and I

are

> considering moving. In fact he wants to build a new house, which

> would be a lot of stress, etc. It would also mean moving an hour

away

> from my hospital. Can anyone on dialysis tell me, is this

> reasonable? How do you feel? Do you have the energy to drive an

hour

> there and back after dialysis? Other news, my protein is starting

to

> creep up again (1900 right now) so he wants to up my Enalipril but

> everytime he does that my potassium gets to high, so we are

waiting it

> out another 3 months to see what happens.

>

> Jill

>

>

>

>

>

> 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]

Hi Amy

The way it works for people on hemodialysis who live in the country and who

could potentially be snowed in is that they prescribe kayexalate. Most

people can go a few days without dialysis in an emergency. The only worry is

potassium, and that's taken care of with the kayexalate. As long as the

potassium is kept in check, everything else can be taken care of by

minimizing protein, phosphorus and fluid until the next treatment. It's not

pleasant, but it can be done in a pinch. Regular hemodialysis is 3 times per

week, not because it's absolutely necessary, but because it's necessary in

the long run to minimize morbidity and mortality of ESRD. In the early days

of dialysis, people only dialyzed once a week.

Obviously, if you could do it, peritoneal dialysis would be a lot more

convenient in your situation. But if it has to be hemo, I think that short

daily hemo done at home will become more and more common over the next few

years, and the dialysis machines more and more user and house-friendly, such

that any physically and mentally able patient will be able do it. In the

U.S., there is a bill making its way in Congress right now for the purpose

of ensuring government funding for daily hemodialysis. Right now, dialysis

centres down there which offer it are not paid for the extra treatments,

except by private insurance in some cases.

Pierre

Re: Question about dialysis

> Jill I'm slipping down that rapid slope too and I live roughly 45 minutes

> away (in good traffic) from the center I would dialysize at. My husband

> and I discussed this drive time and if it comes down to it we are going to

> try and have my sessions scheduled opposite his work schedule just in case

> I can't drive myself any particular day. We have already spoken to

> friends about keeping an eye on our kids too if anything were to happen

> with me so that my hubby wouldn't have to take a lot of time off work.

> I'm one who likes to plan ahead so when things happen I know what road we

> will try and go down, there may be bumps along the way but at least we

> have an idea how we would like things to work out. It's also nice to

> scope out friends who would feel comfortable helping out in an emergency

> situation so I know who to call first. )

>

> Just one of those things we have to think about that puts us into that

> " new normal " category. The travel time is something I think about often,

> especially due to the fact that I can get snowed into my subdivision for

> 2-3 days straight....I live on dirt roads in rural Colorado. We have

> talked about possibly moving closer to the city if I have to start

> dialysis but I truly love my home and don't want to leave it if I don't

> absolutely have to.

>

> I feel that if you have a back up plan for yourself living far away is a

> possibility and it's great that you are considering the down sides to

> moving that far out now...before you build your dream home.

>

> Amy G.

[Guest guest]

Hi Amy,

Let's hope and pray that your rate of decline SLOWS and you have much longer

than 3 years. Now that I have reached stage 5, I have been able to accept

where I am and honestly am looking forward to feeling better. I count my

blessings every day :-)

In a message dated 8/8/2005 10:58:50 P.M. Pacific Daylight Time,

purrfect@... writes:

thanks for the calculator link...it told me what I had figured out on

my own...if I keep going at my current rate I've got about 3 years left.

[Guest guest]

Hi Amy,

I'm sorry to hear about your kidney condition. I thought that you were

doing well on the pred and wouldn't have to worry about this for a long

time.

I'm so glad to hear that you have so many family who are willing to

donate, and that despite the timeframe of your kidney function, you are

still doing well. I hope that you will do well for a long, long time.

Sophia

> thanks for the calculator link...it told me what I had figured out

on my own...if I keep going at my current rate I've got about 3 years

left. If I speed up after going off the pred I'm looking at about 1.5

years. My neph wouldn't confirm this calculation but his " Let's focus

on losing weight as our main goal " spoke volumes to me since he has

been a real fighter up to this point. Ah well my sisters said their will be

a race to see who will be the best donor, looks like all 3 of them plus a

few of my nieces, my sister-in-law, and a nephew want to test for donor

if and when the time comes.

>

> Besides the headaches and itchiness when I eat wrong I'm doing well

so far. I can't complain.

>

> Amy G.

> Re: Question about dialysis

>

>

>

> Hi Jill,

>

> Are you rapidly progressing? I think I was at 50% function more

than 10

> years ago and I am not quite yet on dialysis. Unless yours is the

aggressive

> type, IgAN tends to be much more slowly progressing. If you are

at 47% now, I

> would be very surprised if you were on dialysis in a year. I am not

a

> doctor, but if you have some history of your creatinine over time,

you can plug

> those values into the inverse creatinine plotting tool and it will

predict when

> you will reach 15% and when you will reach 10%. It was right on in

the

> prediction as to when I would reach 15% for me and it says I will

reach 10% by

> November which is likely pretty close too.

>

> Here is the link if you want to try it.

>

>

_http://www.wramc.amedd.army.mil/departments/medicine/nephrology/t

ools/index.h

> tml_

>

(http://www.wramc.amedd.army.mil/departments/medicine/nephrology/to

ols/index.html)

>

>

>

> In a message dated 8/8/2005 6:32:42 A.M. Pacific Daylight Time,

> aj72300@y... writes:

>

> Okay, not sure if I posted after my last appt. or not, but here it

> goes...My neph says that my kidneys are functioning at 47%,

which is

> good, but we are guessing that at the rate I am declining I will be on

> dialysis within a year. So heres my question, my husband and I

are

> considering moving. In fact he wants to build a new house, which

> would be a lot of stress, etc. It would also mean moving an hour

away

> from my hospital. Can anyone on dialysis tell me, is this

> reasonable? How do you feel? Do you have the energy to drive an

hour

> there and back after dialysis? Other news, my protein is starting to

> creep up again (1900 right now) so he wants to up my Enalipril but

> everytime he does that my potassium gets to high, so we are

waiting it

> out another 3 months to see what happens.

>

> Jill

>

>

>

>

>

>

[Guest guest]

Does this mean you don't want me to offer to donate a kidney to you Pierre?

;-) Seriously, I wish I could.

I went to the renal care clinic today, and was told that I will likely need

to be transplanted in the next 2-3 months or else I will not be able to avoid

dialysis. I am of the firm belief that you have to get your kidney before I

do, so yours has to be coming in the next few months too.

That is what I am praying for!

In a message dated 8/11/2005 3:24:14 P.M. Pacific Daylight Time,

pgl-groups@... writes:

I have lots of friends here, but you all have lame kidneys :-)

Pierre

[Guest guest]

Hi Cathy,

I actually am in a place of acceptance and ready for either dialysis or a

transplant. I know I will soon be feeling better. I completely trust the

Lord. He can still choose to heal me too but whichever way He will be most

glorified is fine with me.

My donor passed the blood tests on Tuesday and now can begin her physical

tests.

Thanks for your prayers.

In a message dated 8/11/2005 4:33:44 P.M. Pacific Daylight Time,

cwaelty@... writes:

, OH MY!!! 2 -3 months? Are you ready for that. I am sorry if I have

missed any previous post about this, Lately I've just been skimming the

post.

My prayers are with you. Do you have a donor ready or almost ready???? Oh,

I pray that you do.

God Bless you and have Faith

Cathy..Jennell's Mom

[Guest guest]

Thanks Sophia. I appreciate the hug :-)

When I was at the point of approaching esrd, I didn't have a willing donor,

so I just made the decision I would prepare for hemodialysis, and then get

on the waiting list and see what happened. It's a common thing that in many

families, potential donors do offer once the person is actually on dialysis.

I was never even evaluated as a recipient until after I had started

dialysis.

Once I was on dialysis, my youngest brother did come forward to donate, went

through about 6 months of evaluation (most that time is just waiting for

various appointments), and he was disqualified at the end due to something

the transplant surgeon was not comfortable with. We even had a tentative

surgery date at that point. This is how I found out personally that in the

world of kidney transplants, you don't count your chickens before they

hatch.

I never canvassed anyone though. This is just not something I was

comfortable doing, and the transplant team never suggested I do that anyway.

I find that friends and other relatives, like cousins, in-laws, etc., who

aren't comfortable with this tend to gradually drop out of your life.

I have lots of friends here, but you all have lame kidneys :-)

Pierre

Re: Question about dialysis

> Pierre,

>

> I'm sorry to hear about that, that must have been very discouraging for

> you to go through. *hugs*

>

> I've never asked my family or relatives, and I don't I ever will, b/c I

> know they wouldn't do it for me. I don't blame them - I think it's a

> cultural superstition thing for them. Discouraging all the same.

>

> Sophia

>

>

>> It was kind of the opposite for me. Everyone was a potential donor

> until it

>> became apparent I would actually need a kidney, then they all went

> back

>> *into* the woodwork.

>> Pierre

>>