To those on nocturnal, what is the phosphorous range for nocturnal?
For the blood or for the dialysate?
Hi Dori,
Blood labs.
The reason I asked is because I happened to be reading an article about prescribing nocturnal, but it listed dialysate levels. For blood, it just said there was a tendency to run low, so binders could be discontinued and some people would need supplements. 
That is the case and I am trying to find out what type/brand phos supplements can be used. But i also need to know the range for nocturnal re phos. as in how low is too low. With standard machines phos can be added through the lines, but with NxStage there as yet is no port for this. Wondering what others on NxStage long txs are doing?
I would suggest talking with the dietitian and/or physician about what the diet should be for a nocturnal dialysis patient. From what I gather from talking with dietitians who work with NHHD patients, patients on NHHD can eat a more normal diet so far as phosphorus is concerned.
Beth,
There are no diet restrictions with nocturnal. I’m free to eat whatever I want now. The problem is, the machine removes more phosphorous then I can compensate for through diet alone. It all depends on what the true scale is for phos. I have seen scales that start out at 2.4, 2.7 and 3.5. My phos has been averaging 2.5 eventhough I eat a normal diet again. My understanding has been that with standard machines, most nocturnal patients are given a phos. additive through the lines. But with NxStage lines there is no port as yet for this purpose.
The normal range is about 2.5-4.5 mg/dL. So you probably need supplementation if you drop below 2.5. I’d think it would be more pleasant to eat more high phosphorus foods than to worry about how to get a Fleets enema into a NxStage machine.
It is difficult to eat enough phosphorus rich foods to get your Phosphorus right on nocturnal. My Phosphorus dropped to 1.5. I have been taking Neutraphos 1 packet twice a day. the problem with Neutraphos is it has Potassium which is not good.
So, I have just started adding (yesterday was the first time) a phosphate based enema to my acid can of the dialysate (Fleet is not available in India). But I am using a Fresenius 4008S.
Kamal
Wish it was this easy, Dori. I have heard where some who have gone nocturnal claim they do not require an additive or supplementation. Then they go on to say how they now have ice cream, pizza, chocolate, cheese and cola drinks all the time. Well, IMO it is not a good idea to trade one problem for another. If it is possible to make good high phos. choices in order to increase phos. I would be all for that. I already have changed over to whole grain products and I like beans, but how many times a week can a person eat beans?
Something interesting I’ve experienced since going back to a normal diet is it takes time to adjust to eating normally again - I know, seems like it would be simple to just start eating everything in sight that one had to refrain from eating for years, but not so. And also, it is just as difficult to consume more high phos and K foods so that these values are not too low as it is to be on a diet where one has to avoid these foods like the plague so that the levels are not too high.
The way this works is, I will be thinking that I did not get enough K foods in my day and I know that means eating something like a banana or melon, but the problem is, I’m not in the mood for it at all at the moment. It stays on my mind until I finally do something about it. But this is like a diet in reverse- this is just as unhealthy/stressful as keeping away from forbidden foods.
Non- kidney ppl don’t have this on their minds. They don’t do labs every month to make sure they are not in trouble with their diet - they just eat naturally. There is definitely an adjustment period. And maybe it is possible to consume enough healthy phos and K foods to keep these values in range without it becoming an unnatural situation, but I’m not there yet. I would much rather the natural approach then supplementation or added chemicals in the dialysate any day. However, from the little I’ve seen written on this subject, it’s been said that most nocturnal patients can’t keep phos and K in balance from diet alone.
I would love to know how those in other nocturnal programs with NxStage or standard machines handle this situation, but as always, there is isolation that doesn’t allow education to flow. In my experience it has always been the case that education trickles in slowly…
[QUOTE=kamalshah20;18181]It is difficult to eat enough phosphorus rich foods to get your Phosphorus right on nocturnal. My Phosphorus dropped to 1.5. I have been taking Neutraphos 1 packet twice a day. the problem with Neutraphos is it has Potassium which is not good.
So, I have just started adding (yesterday was the first time) a phosphate based enema to my acid can of the dialysate (Fleet is not available in India). But I am using a Fresenius 4008S.
Kamal
http://kamaldshah.com[/QUOTE]
My dietitian told me about Neutraphos, but it doesn’t sound like something I would want to take as it has to be mixed with water or juice adding to my fluid goal, doesn’t sound too pleasant and yet another requirement that stays on ones mind. How much fluid do you take with it and does it upset your stomach or otherwise cause unpleasantness? I have tried to find a phos supplent in pill form, but from what I’ve researched so far, the pills have to be dissolved in water/juice just like Neutraphos.
Re potassium, do you use a 3K? I read that when ppl go nocturnal they are put on a 3K. At present, I am on a 1K with potassium running on the low side as like with phos. I am contemplating switching to a 3K.
When it comes to phos, as I’ve stated with NxStage, although we have Fleets in this country, there is no port on the lines as yet in order to add it in.
If you’re doing nocturnal, do you really need to worry that much about your fluid goal? Or your potassium levels? How many nights/week are you doing treatments?
IMHO, you don’t have to eat junk food or high potassium foods to get more phosphorus. Nuts are good. Protein foods of all types tend to have a lot of phosphorus, with red meat having the most, poultry in the middle, and fish/seafood the least. Dairy products of all sorts have plenty of phosphorus, too.
=Dori Schatell;18185]If you’re doing nocturnal, do you really need to worry that much about your fluid goal? Or your potassium levels? How many nights/week are you doing treatments?
IMHO, you don’t have to eat junk food or high potassium foods to get more phosphorus. Nuts are good. Protein foods of all types tend to have a lot of phosphorus, with red meat having the most, poultry in the middle, and fish/seafood the least. Dairy products of all sorts have plenty of phosphorus, too.
“Everyone” is affected by fluid differently depending on a number of factors. Just because one is on nocturnal does not mean all can drink more than on short txs. That is a myth. Control it more , yes. I find that more K is removed with nocturnal and others agree. I do 6x txs of 8 hrs.
I don;t know if there is a misstatement in your next statement. I said that I often read where those who go nocturnal start eating all kinds of junk food for phos. And I did not say that ppl eat high K foods to increase phos. They eat high K foods to get their K up unless they use a 3K solution. There is only so much protein that one can eat in a day and eating too much dairy increases calcium too much.
[QUOTE=Jane;18184]My dietitian told me about Neutraphos, but it doesn’t sound like something I would want to take as it has to be mixed with water or juice adding to my fluid goal, doesn’t sound too pleasant and yet another requirement that stays on ones mind. How much fluid do you take with it and does it upset your stomach or otherwise cause unpleasantness? I have tried to find a phos supplent in pill form, but from what I’ve researched so far, the pills have to be dissolved in water/juice just like Neutraphos.
Re potassium, do you use a 3K? I read that when ppl go nocturnal they are put on a 3K. At present, I am on a 1K with potassium running on the low side as like with phos. I am contemplating switching to a 3K.
When it comes to phos, as I’ve stated with NxStage, although we have Fleets in this country, there is no port on the lines as yet in order to add it in.[/QUOTE]
I take the Neutraphos with about 100 ml of water. I have no unpleasantness or upset stomach after I take it. I use a 2K dialysate. My Potassium has always been normal on nocturnal.
[QUOTE=Jane;18186]“Everyone” is affected by fluid differently depending on a number of factors. Just because one is on nocturnal does not mean all can drink more than on short txs. That is a myth. Control it more , yes. I find that more K is removed with nocturnal and others agree. I do 6x txs of 8 hrs.
I don;t know if there is a misstatement in your next statement. I said that I often read where those who go nocturnal start eating all kinds of junk food for phos. And I did not say that ppl eat high K foods to increase phos. They eat high K foods to get their K up unless they use a 3K solution. There is only so much protein that one can eat in a day and eating too much dairy increases calcium too much.[/QUOTE]
I agree with you Jane that everyone is effected by fluid differently. Even though I am on nocturnal, I still have to watch my fluids. I have to make an effort to not drink too much. I think this is mostly in my mind though.
I have read and been told time and again that people not on dialysis drink about 1.5 to 2 liters a day. I usually drink more than that. That’s because the fluid is always on my mind. If there was a way by which I could get it off my mind, I would drink around that much too. And to remove 2 liters over a period of 7 hours (which is my treatment duration every night, 6 nights a week) is totally all right. That’s why people say you can drink all you want on nocturnal.
I can totally relate to what you’re saying. In fact I am quite relieved to see that someone else thinks like I do. Most other nocturnal dialyzors are always surprised by my obsession with fluids!
Thanks
Kamal
I suspect it’s a matter of having done standard HD first for some period of time so you got used to the restrictions. If you started out on nocturnal (VERY few, if any, people do), then you likely wouldn’t have the focus. It sounds like it can be pretty hard to let go of. I’ve heard the same thing from folks who’ve had transplants and are suddenly, after years, supposed to drink LOTS after having to drink nearly nothing.
Kamal, it sounds like that hot Indian sun is having an affect on you. Let’s remember that climate does have an affect on how much fluid one drinks during a day. Those living in more humid or very hot conditions are bound to have the tendency of drinking more. Even those who live with much different conditions during the year might drink more during the summer than the cooler seasons.
Do you mean to tell me there is a way to be on dialysis and not be restricted on Phos???
Wow.
Lisa
Hi Lisa,
You might want to read about nocturnal home HD on our site:
– Description: http://www.homedialysis.org/learn/types/nhh/
– Stories: (scroll down) http://www.homedialysis.org/resources/stories/