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From: Charles Torrisi on 12 Aug 2007 11:41
Hi all: I just went to my nephrologist last Friday and did not see my
regular doctor but his partner. After a few pleasantries, we got down
to thebusiness of how my blood tests went about. He about scared me to
death when he told me that 6 years ago I was about 2.0 and six years
later it is at 2.6 and if it goes up to 3.0 by next year, he wants to
start considering a fistula. His theory is that if I never use it,
fine, but if I need it because it takes a few months to mature, I will
be ready for dialysis. Actually he told me it was 2.8 but when I got a
copy of my blood test, it was 2.6. My disease is PkD, and I am 71. I
feel great for the time being and I was taken aback from his comments.
Iknow everybody is different. My son is 50 and has been on dialysis for
a year, but based on how he felt before he went on dialysis I am no
where near there, at least that is how I feel right now. Can kidneys
fail overnight? All my other readings except for GFR which is 19.3,
are at normal levels, that is sodium, potassium, but BUn, Creatnine is
out of range. .

I have been reading all your posts. Some have been uplifting, some have
been not so, but I value all the information I read and want to have
control of my own medical decisions. I read alot about PKD and feel he
may be pushing the panic button which makes me feel uneasy.

thanks for any input. Ange

Have a great day!!

From: mainframetech on 13 Aug 2007 18:26
On Aug 12, 11:41 am, CTORRIS...(a)webtv.net (Charles Torrisi) wrote:
> Hi all: I just went to my nephrologist last Friday and did not see my
> regular doctor but his partner. After a few pleasantries, we got down
> to thebusiness of how my blood tests went about. He about scared me to
> death when he told me that 6 years ago I was about 2.0 and six years
> later it is at 2.6 and if it goes up to 3.0 by next year, he wants to
> start considering a fistula. His theory is that if I never use it,
> fine, but if I need it because it takes a few months to mature, I will
> be ready for dialysis. Actually he told me it was 2.8 but when I got a
> copy of my blood test, it was 2.6. My disease is PkD, and I am 71. I
> feel great for the time being and I was taken aback from his comments.
> Iknow everybody is different. My son is 50 and has been on dialysis for
> a year, but based on how he felt before he went on dialysis I am no
> where near there, at least that is how I feel right now. Can kidneys
> fail overnight? All my other readings except for GFR which is 19.3,
> are at normal levels, that is sodium, potassium, but BUn, Creatnine is
> out of range. .
>
> I have been reading all your posts. Some have been uplifting, some have
> been not so, but I value all the information I read and want to have
> control of my own medical decisions. I read alot about PKD and feel he
> may be pushing the panic button which makes me feel uneasy.
>
> thanks for any input. Ange
>
> Have a great day!!

Compared to my process, yours is slower. It doesn't hurt to read
the book on the extremely low protein diet. It's called "Coping with
Kidney Disease" by Mackenzie Walser. Some folks here don't like the
idea, but I've had excellent results from it. Going just a few months
on the diet (with supplement!!) will show you and the nephrologist
whether it has value. My nephrologist is now more happy with the idea
of the diet sice he saw the results. And you can stillgo and do the
fistula business stuff if you still need to. Actually, you could do
both and lose no time at all. If it makes sense to you, talk to the
nephrologist and get his agreement. If it's going to do something, it
will do it pretty quickly and you won't have wasted too much time
trying it. I got better lab readings on the first test after starting
the diet. Probably a couple weeks to a month.

If you want me to talk to your nephrologist or give him the number
of mine, let me know.

Chris


From: Charles Torrisi on 13 Aug 2007 22:20
Hi Chris, I read that book and found that it had alot of interesting
info. I tried to cut down on protein, am still trying, and my
creatinine did go down 1/2 point last year. I asked my nephrologist what
I could do to cut down the bun and the creatinine. His answer? Nothing.
PKD is a little different than other types of kidney failure, but also
my daughter's nephrologist said the same thing. Cutting down on red
meats is not a bad thing though, for other reasons. Thanks for your
input. Ange

Have a great day!!

From: mainframetech on 17 Aug 2007 16:58
On Aug 13, 10:20 pm, CTORRIS...(a)webtv.net (Charles Torrisi) wrote:
> Hi Chris, I read that book and found that it had alot of interesting
> info. I tried to cut down on protein, am still trying, and my
> creatinine did go down 1/2 point last year. I asked my nephrologist what
> I could do to cut down the bun and the creatinine. His answer? Nothing.
> PKD is a little different than other types of kidney failure, but also
> my daughter's nephrologist said the same thing. Cutting down on red
> meats is not a bad thing though, for other reasons. Thanks for your
> input. Ange
>
> Have a great day!!

OK, although it doesn't sound like you went the full route of the
diet. Walser mentioned using the diet on a PKD sufferer to delay
dialysis on page 186, but you have to follow the diet closely.

Good Luck,
Chris

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