Controlling Phosporous during Dialysis: Phosporous

Sorry you had to finally reach that point, but, you're talking to
someone who was on it for 4 years. If I end up sounding blunt about
it, it's because I've been there. I'm more into helping people deal
with it in effective ways than in sympathizing :-)

There's nothing you can do about phosphorus other than taking your
binders and absolutely minimizing phosphorus intake. I know it's hard,
but if you have that problem, you just have to choose other foods. Is
your renal dietitian helping you much with that?

But don't feel bad if it's not enough in terms of phosphorus.
Sometimes even the best you can do is not enough.

If you were able to drag it out a long time before you started
dialysis, one negative effect of that might be that by the time you
start, you have very little natural kidney function left. Having some
of what we call "residual kidney function" really helps to supplement
what dialysis is doing for you until you can get a transplant, and
this applies to both peritoneal dialysis and hemodialysis. One reason
why it's helpful to have some is that while dialysis can easily deal
with things like potassium, it's not very efficient at removing
phosphorus.

The only other solution is longer and more frequent dialysis. You
can't get that in a dialysis centre, but you can at home if you have
access to that. There are 2 ways: short daily hemo, and daily
nocturnal hemo. Some dialysis centres might offer nocturnal
hemodialysis 3 times a week at the centre itself, but that's still
kind of rare. There's no substitute for long, daily dialysis when it
comes to keeping you healthy. The only reason we have the 3-4 hours 3
times a week kind of hemodialysis today is that it's what is practical
and affordable for the government to pay. But it's far from ideal in
terms of how good the dialysis is.

In the U.S., if that's where you are, the best and most available
compromise might be "short daily hemodialysis" you do yourself at home
with a small, transportable NxStage machine.

I was on the same kind of hemo as you are for 2 and half years, and
then I switched to doing daily nocturnal hemodialysis myself at home
until I got my transplant a couple of years later. It was a lot of
work and responsibility, but the upside was a dramatic improvement in
all my numbers. Absolutely everything normalized.

But if none of that is in the cards, you just have to keep working at
limiting the phosphorus intake, or do whatever you can to lose that
weight so you won't delay your chances of getting a transplant. I
wouldn't second guess those guys. They know what they are doing. If
they say you need to lose weight first, you need to lose weight. It's
as simple as that. They aren't in the business of deliberately keeping
people from getting a kidney. Just do it, and do it now, would be my
advice. The longer you delay getting a transplant, the worse your
health gets. In the meantime, whatever you do, don't ever miss or
shorten any of your dialysis treatments, and you might even want to
ask your neph if you could have them a little longer. The longer your
treatments, the more phosphorus is removed.