My nocturnal so far - adding phosphorus!

Discussions for Patients, Family, and Friends HD For Patients
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I think it’s just amazing!

Instead of watching the phosphorus in my diet, I am actually adding a whole bottle of sodium phosphate to my dialysate (via the bicarb concentrate). I’m just so excited about that. I mean, I’ve had to limit dietary phosphorus for more than 5 years now. All of a sudden, I don’t have to worry about it at all! I can eat pretty much whatever strikes my fancy. The labs look terrific. I feel like standing out on my balcony and shouting “I can EAT!”

I’m also adding calcium to my dialysate, but that doesn’t have much impact on diet.

So far, I’m finding that I have to make an effort to drink more than what I’m thirsty for, because, if I’m not at least 2 kg above my dry weight, the UF rate over a 6-8 hour treatment will be too low for the machine. So, from limiting fluid (still limited on short daily), to pretty much not limiting it at all. The only limit seems to be what my body can stand, because, if I were to get too heavy, while I wouldn’t have any trouble removing it, I guess I might get that “full” feeling until I did. I haven’t so far, though.

Potassium is one I’m not exactly sure about yet. I will have to experiment over a few more lab results. I’m eating pretty much a normal amount at this point, but without going overboard. So far, my pre-treatment K has only been as high as 4.8

No more problems with appetite, that’s for sure. When I come off in the morning, I’m hungry for a lumberjack-sized breakfast, and it’s the same all day long.

Sleeping does not seem to be a problem for me. I’ve slept through most of the night from day one, without any alarms at all. I seem to get a venous alarm the first half hour or so, and nothing after that. In addition to sleeping on my back, I can easily sleep curled up on either side, and, as a total surprise to me, I can even sleep on my stomach, as long as my fistula arm and the dialysis machine are on the same side (so the tubes don’t cross over me). The slower flow speed seems to really make a difference.

People keep asking me if I’m afraid the needles might pull out during the night. Well, I mean, I guess it’s not impossible. But, the needles themselves are very securely taped with a large Tegaderm, plus the needles lines are again very securely taped at my wrist (I have an upper arm fistula). I use a burn mesh I slip over my arm, and over that, I tape a cuff I make from two 4x4 gauzes. Then I tape each needle line (actually at the bloodline at that point) over that individually with a long paper tape that goes all around my wrist and overlaps itself, and over that, I tape down the end of the paper tape with a little piece of plastic tape. I am much more careful about the taping, and it does seem as secure as it can get. I also tape the leak detector’s sensor right behind and up against my venous needle. That puts it in between the venous and arterial needles, and it would detect a leak from either. I test it before each treatment to make sure it works. I also was trained to put a piece of plastic tape around the connection between each bloodline and needle line, just as extra insurance that they don’t somehow unscrew themselves.

In addition to that, I have a leak detector alarm under the dialysis machine, and another one under the R/O.

Running with a dialysate speed of 300, a single jug of bicarb and of acid are more than enough. There’s still quite a bit left over after the treatment.

Anyway, so far so good!

Pierre
www.igan.ca

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This is great news, Pierre! I was crying for joy and laughing at your happy account. You are “free” at last in some significant ways, that as kidney patients we lose, until we get to better txs.

How many nights have you done nocturnal now? I was interested in the part regarding fluid. What has your average fluid gain been? Have you tested how much fluid you can take in before you reach that full feeling?

I am interested to hear how appetite and thirst mechanism adjust and improve. Something I’m not clear on is does appetite and thirst mechanism improve because the blood is being cleansed better, fluid is being removed better, or both?

Looking forward to more of your observations in comparing how much better you feel between daily dialysis and nocturnal txs.

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I’m pleased your getting such good results. There is no doubt in my mind after nearly three years that nocturnal dialysis produces great results without restrictions.

Mel

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Mel,
Math is not my thing, but looking at a current run sheet a fluid goal of 2.3 put my UFR at 580. So, are you saying that your wife gains between 2-4 something kgs a tx? Does she know how much she can gain before she gets a full feeling? The reason I ask is because a renal expert explained to me that no matter the size person, 2-3 kgs should be the maximum gain on short or long dialysis as that is the limit the body can hold before it impacts upon the heart.

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The phosphorus I have to add to my bicarbonate jug is simply a bottle of sodium phosphate enema (so-called Fleet enema). I get my supply of it free from the hospital, as part of my auxiliary supplies (gauzes, syringes, alcohol swabs, betadine, etc.). I guess I could use the enema for its intended purpose if I had too :slight_smile:

I’m not really sure about the minimum UF rate issue. I’ll ask one of the machine techs at the next opportunity. In training I saw one guy have such a low UF rate that he ended up with a positive TMP, and he had to add drink during the treatment to bring his UF rate up. The TMP number shown on the screen without a plus or minus sign is actually negative TMP, which is what you usually want.

About fluid gain… you can almost really drink whatever you can stand. For most people, 3kg of extra weight would be Ok, because, by the end of the day when you start getting into that weight territory, you’re only a couple of hours from your dialysis treatment anyway. You don’t have to hold onto it until the next scheduled dialysis treatment at the dialysis centre. Personally, I find I feel it when I’m 2kg over my dry weight, but I’m not very big. But whatever, after being used to a fluid limit of 1 to 1.5 litres, even 2-3 litres per day seems like an unlimited amount. One funny thing is that my dietician actually tells me to drink Coke now :slight_smile:

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[b]Jane,

In one day my wife typically gains from 0.5 to 1.2 kg. We have to take that off plus the rinseback (the saline contained in the lines and dialyser since we give the prime rather than dump it which is the alternative, but marginally less safe, technique) which is about 0.25 kg. We know from experience that she loses about .05 kg or so during the night through perspiration, breath, etc. So. if we take (say) 1.0 kg gain over dry weight + .250 rinseback - .05 losses we know we need to take off 1.2 kg. Dividing 1.2 kg by 8 hours which is the length of our nocturnal runs we get an ultrafiltration rate of 150 ml/hr (which is the same thing as .150 kg./hour). If, for some reason, she gains much more (say 2.0 kg), perhaps over a weekend where we skip Saturday night, she would not try to take off more than 1.5 kg. but would plan to catch up over the next night or two. Otherwise, we hit our dry weight target exactly or are off by no more than 0.1 kg.

As I noted before we have had no difficultu with very low rates – the lower the rate the better she feel.

Mel [/b]

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Mel,

Oh I see, in your earlier post you were referring to fluid goal not UFR rate. So, you are able to remove less than 1K on your model machine.

Mel writes:
As I noted before we have had no difficulty with very low rates – the lower the rate the better she feel.

Do you mean the better she feels in regard to carrying fluid, fluid removal or both?

I am in a learning process of understanding how nocturnal allows patients to have no fluid limitations.

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Mel writes:
The key to how you feel both during and after dialysis seems to be the ultrafiltration rate, the lower the rate the better you feel – avoiding cramps, tremors and the generally wiped out feeling.

Would be interested in knowing how much fluid others gain on their SDD and ND txs and how you feel during and post tx?

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I am an unusual patient, which goes to show you that there are no guarantees about anything. I do 4 hours a day of dialysis at a bfr of 350. I was having a real problem with my calcium and phosphorus being too high, especially my calcium, and I had very little calcium in my diet, maybe two thin slices of cheese a week.

This last month I decided to try something new, I felt better taking off most of my fluid in the first two hours and then lowering my u/f rate for the last two. I had heard that most of the BUN and creatinine were removed in the first two hours and the other wastes in the last two, I had also heard that you get better dialysis with a higher u/f rate, so… this month I tried making sure I took off at least 2.5 to 3 kilos every day, even if it meant drinking 1-1.5 liters during my dialysis, and lo and behold my calcium dropped from 10.3 to 9.1 and my phosphorus was 4.3 (this is after my day off so the absolute highest they get during the week).

My guess is that if you do nocturnal you have 6-8 hours at that low rate which is enough to get the phosphorus and calcium out, but if doing short daily and if you have problems you might try upping your u/f rate.

I’ll let you know if this doesn’t continue to be the case.

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Good luck with that Cathy. I hope it works for you.

When I did my 3 nights at the hospital, I did 6 hour treatments. I continued like that at home for a few days, but last night I got up the nerve to go for 7, working my way to 8. With a 6 hr tx, you end up going to bed late and getting up very early. But 7 hours takes you from 11 to 6, which is fine. It worked very well. I woke up with 2 minutes to spare. I did wake up a few times during the night, in response not to any alarms (since I didn’t have a single alarm all night), but rather to noise from outside. When I did, I took the opportunity to glance at the display, the lines, the needles and the air chambers, just to be sure everything was still Ok. This is almost as good a sleep as I got when I was doing in-centre dialysis anyway. Folks, there is zero recovery time after an all-night dialysis. I’ve heard that said before, but now I’m experiencing it myself and finding that it’s absolutely true. I had my coffee while doing the acid rinse and heat disinfect (I have to wait until the machine starts counting down from 20 minutes and then I have to manually turn off my RO), then headed out for a six block walk with the dog.

I’m very pleased with it so far.

Pierre

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Hi Pierre,

I’m as satisfied with nocturnal as you are.

For those of you that are not on nocturnal dialysis yet. Nocturnal is like not being on dialysis at all. I say that because I live a normal life around nocturnal. I can do absolutely everything that anyone else can do, or at least so far that has been the case (other than the obvious- travel spontaneously).

I play Beach Volleyball four out of seven days a week, run 5-6KM every other day, and a lot of other activities, not including the fact I can eat anything I want. My friends completely forget that I have kidney failure.

I can’t stress the importance of dialyzing, the more the better. Most of the comments were in regard to the immediate short comings of kidney failure, UF, not being able remove excess fluid through normal means. As important, if not more so, is that Kidney failure long term leads to serious ailments, such as, heart & bone disease. These are the major threats to our health. This will consume you slowly, eventually causing death but not before going through many years of increasingly agonizing pain.

The amount of hours required is based on one’s physical makeup and specific kidney failure, in my case, I do 5 nights x 8 hours, alternating 3 and 2 days on. I have become so accustomed to nocturnal that I can no longer handle daily D., or being a wake during dialysis. I find it unbearable now. I fall asleep within 5-10min after hooking myself up and the system usually wakes me up. If not, I take myself off early. In comparison to Pierre’s hook up method, I am completely opposite. First, I have a lower arm fistula and I do the absolute minimum. I connect my lines and don’t apply any tape, gauze pillows or electric devices. I used to Velcro the lines to my wrist but I don’t even do that anymore. I am able to hold the lines in my hand all night while still sleeping soundly. Actually, hardest part about adapting to nocturnal is sleeping, at least for me it was. It took two weeks for me to relax enough or whatever it is that allows one to fall asleep. Once I got over this hump it was down hill from there.