Still Peeing Mightily!

[Ken Shelmerdine]

Galvo,you must be related to John Wayne's Horse!!! Wow 3.5 litres! And they still want to take fluid off. Well DON'T YOU LET THEM!
Demand toxin removal only.

I have long suspected that fluid removal can be wildly inaccurate and this thread convinces me.

I am convinced that kidney failure patients with full urine output are having their residual function prematurely ended through unnecessary fluid removal.

I am convinced that the presumption that all kidney failure patients need some fluid removal as a matter of course is  spurious and the inaccurate calculation of excess fluid removal is most  detrimental to the patient leading to impaired cardio vascular function and other morbidities.

I am convinced that the whole dry weight calculation is a fiasco and at best is only approximate and at worst pure guesswork.

I take on board the argument that although urine output my be high, the kidneys are not filtering toxins into it. Nevertheless urine output has tremendous benefits for the patient so how can the present form of dialysis treatment be justified when it accelerates the very health problem for which you are having the treatment in the first place?

I am not a medical expert, I read various studies on the internet and in the main can't understand the technicality of it but I do know what I've seen with my own eyes and I can make conclusions based on logic.

I've seen patients having the most horrific cramps and crashing. I've seen patients suddenly going into 'crisis management' as they so quaintly put it and next thing they are dead.

I feel so strongly about this that I am going to approach my local branch of the kidney federation. I think as patients we should be strongly campaining about this scandal.

[galvo]

Thanks, Ken. Yesterday the nurse said we'll take off 1000. I asked why and got the response that they have to! OK To-morrow I say no - remove toxins only, and we'll see what happens. Never a doctor to talk to. Another question for the neph next week. Yes. My very limited experience seems to agree wih you that this dry weight business is a lot of guess work.

[Ken Shelmerdine]

Galvo you must insist. 1000 is just nonsensical when you are peeing as you are. It's like the meds are hypnotised aginst plain common sense. Good Luck.

[RichardMEL]

Lori - I think the hint with urinating is that if it's mostly clear that you're just clearing fluids.. if it has colour (the more yellow the "better") then that is toxin removal. The 200ml or so I do a day is pretty clear, so I know really I'm not filtering any toxins (and since my GFR is 5 that makes sense).....

[Ken Shelmerdine]

Lori - I think the hint with urinating is that if it's mostly clear that you're just clearing fluids.. if it has colour (the more yellow the "better") then that is toxin removal. The 200ml or so I do a day is pretty clear, so I know really I'm not filtering any toxins (and since my GFR is 5 that makes sense).....

RichardMel My gfr is 6% but I still pass aprox 2.7 litres a day. The point is that although it is not removing toxins, the fact that I don't retain fluid is one of the things which my kidneys are still doing which keeps me feeling well. For people in this condition why enter into a proces of fliud removal when toxins can still be removed without? Why needlessly accelerate deterioration of residual function?

[RichardMEL]

Oh Ken, I agree with that absolutely. Wow GFR of 6 and still outputting 2.7L a day? you must not have ANY restrictions - I'm so envious! Certainly to just do dialyisis with no UF seems reasonable in that case since, as you say, the kidneys would be taking the fluid out just fine for you. I'm all for keeping as much RRF as possible.

I just wish I had that "problem"!!!

[Des]

Lori - I think the hint with urinating is that if it's mostly clear that you're just clearing fluids.. if it has colour (the more yellow the "better") then that is toxin removal. The 200ml or so I do a day is pretty clear, so I know really I'm not filtering any toxins (and since my GFR is 5 that makes sense).....

RichardMel My gfr is 6% but I still pass aprox 2.7 litres a day. The point is that although it is not removing toxins, the fact that I don't retain fluid is one of the things which my kidneys are still doing which keeps me feeling well. For people in this condition why enter into a proces of fliud removal when toxins can still be removed without? Why needlessly accelerate deterioration of residual function?

Do you have PKD because I heard that the PKD kidneys still passes urine....?

[KICKSTART]

I have often wondered about this ? Is it better to pass urine (even though no toxins) because i find on my non dialysis days i 'go' a lot more  and wondered what would happen if they just pulled toxins off ? Am i better to 'go' or will it be of no benefit ?

[RichardMEL]

I'm no kidneydoc, and I do not play one on TV but I would think that if you're peeinng a reasonable amount that would help to remove fluid from you which has to be a good thing. Thus the only reason to pull fluid was if you were known to retain fluid. It would also mean less fluid restrictions.. which from my side of the fence sounds mighty fine to me!!!

[galvo]

I rocked into D yesterday and brought up this point. The response was -  a) astonishment that I had the effrontery to make any suggestion, b) a demand to know whether I was still passing urine ( I could see my advice re the 3500mls clearly sitting on top of the folder), c) a comment 'we'll report this to the nephrologist', and d) an instruction to me not to become agitated (they aint seen nothing yet!).

The ward was 1/2 empty at that stage. The next patient to be wheeled in was an extremely demented old lady, who loudly rants and raves non-stop for the four hours. Where did they place her? Yep. Right next to me. They  have  the  power!!

Oh, yeah. They did not take any fluid off! I'll fight, and win, the same battle on Tuesday, and I see the neph on Thursday.

[RichardMEL]

I find it so frustrating when *some* staff members treat *some* patients as though they are foolish and even the act of asking for something is a prelude to a revolt - specially if the request is counter to what they think is appropriate. Yes, yes, report to the neph good grief. Hopefully the doctor is more helpful!

[murf]

I know for a fact that the more overloaded with fluid i am the more i will urinate. Does anyone else find this?

You are lucky to be in this position. I stopped urinating after about eight months so the more overloaded with fluid means: I am overloaded with fluid and the machine has to take off what it can. I usually try to be about 2.5kg before wash-back. Any more, my BP drops dramatically. Don't cramp tho'.   

[kristina]

Those dialysis-patients who are only having the toxins removed,

&  not the “water”, do you also check your daily fluid intake,

&  weigh yourselves daily?

Thanks Kristina.

[Hanify]

One of the biggest things I have learned from ihd is that that there seems to be a thing about having to remove fluid within the renal nurse community.  It's like they think it doesn't count unless you take off fluid?  When I end up back on haemo I will be waaaaayyyyyyy more staunch about the fluid and what I want - not necessarily what the neph thinks.  But you have to realise also that there are an awful lot of non compliant renal patients, and I think the nurses are more used to them than patients who are genuinely informed.  We need to educate them about our own knowledge in a way.

[dwcrawford]

Well, I'm sick about hearing about all your peeing but we do several things each time to determine how much such as weight, how much and what bps last time, look at ankles, do you want to try plus or minus 1... etc.  I mean it is a full discustion first between myself and tech and then with the nurse.  In the end I make the decision.. no cramps or anything yet but sometimes bp goes too low (a couple of times) so we go different the next day.

[Hanify]

Your centre sounds like one that other centres should go to for training Dan!

[RichardMEL]

Exactly Dan - that's the way it SHOULD be imho, and I'm lucky that at my unit it's a discussion too (although I bought a coffee during D and chamged my UF to make up for it and the nurse got a bit uppity with me  ) but in general they are very good. If I give a reasonable explanation for why I want to challenge my dry weight or change the UF or something they are pretty good about it - because I'm giving a reasoned argument to support my request rather than just "I want this" plus they do know that after 3 years I have some clue about what is going on and what it all means and that I am pretty compliant with my treatments and all that. It's great that Dan is in a similar environment.

About the thought that nurses are more used to seeing non compliance so err on the side of caution/taking fluid off.. I can sort of understand that but I'd say the less compliant patients are more rare that I have seen. I've seen some doozies over the years, but most of us are pretty good that I've seen.

[Ken Shelmerdine]

I have often wondered about this ? Is it better to pass urine (even though no toxins) because i find on my non dialysis days i 'go' a lot more  and wondered what would happen if they just pulled toxins off ? Am i better to 'go' or will it be of no benefit ?

Kickstart it depends on your fluid output. I do my own 24 hour urine collection regularly and it usually amounts to between 2.5 and 2.8 per 24 hours. which I understand is normal to slightly above normal so I have never let them take and fluid off not even wash back amount.

Do you get bloated if you exceed your fluid allowance? Do your ankles or other parts of your body swell? Is your BP normal? Maybe one week end when you are not on dialysis monitor the amount that you drink and see if it is roughly equal to the amount you pee. Take the full measurement about three hours after your last drink to ensure all you have drunken has passed.

Then make your decision. If you are not retaining fluid you will probably feel a lot less washed out after a no UF dialysis session. But it's your decision. Good Luck

[Ken Shelmerdine]

Oh, yeah. They did not take any fluid off! I'll fight, and win, the same battle on Tuesday, and I see the neph on Thursday.

Good for you! Fight on! But watch your BP.

[Ken Shelmerdine]

Lori - I think the hint with urinating is that if it's mostly clear that you're just clearing fluids.. if it has colour (the more yellow the "better") then that is toxin removal. The 200ml or so I do a day is pretty clear, so I know really I'm not filtering any toxins (and since my GFR is 5 that makes sense).....

RichardMel My gfr is 6% but I still pass aprox 2.7 litres a day. The point is that although it is not removing toxins, the fact that I don't retain fluid is one of the things which my kidneys are still doing which keeps me feeling well. For people in this condition why enter into a proces of fliud removal when toxins can still be removed without? Why needlessly accelerate deterioration of residual function?

Do you have PKD because I heard that the PKD kidneys still passes urine....?

Des, yes I do have PKD and maybe that's why. 

[Ken Shelmerdine]

Galvo did you see your neph on thursday? How did he react to no fluid removal? Fireworks I would imagine but if you are feeling OK and not bloated then stick tp your guns.

[galvo]

How ya goin',Ken. Yeah, I saw the Neph on Thursday, and he was 100% behind my decision!!!! He says that unless I start retaining fluid, we'll keep going along this track. He also said that he had talked to the Dialysis Unit about this. Amazingly, I am now greated by name when I attend, and asked how I am. Heh! Heh!

Pathology readings after three weeks were good. I am so pleased by this, I shall make them the subject of a separate post.

Ken, many thanks to you and the rest of the gang for your support on this matter. Without you guys, I would be wandering in the wilderness.

Have to go. I need a pee! Who! Hooo!

[Hanify]

Keep enjoying it. You miss it if it goes.  Who'd have thought.

[RichardMEL]

Just on being greeted by name etc... you'll find that the longer you do dialysis the more of a community feeling you will probably get from/around your unit. Certainly in my unit where we have a few regular patients (along with the emergencies and short termers) and you DO care about the other patienrs, or their partners, and of course the staff. I know when I go in they really DO care about me and they are happy to see me (though they'd be happier if I didn't come back because I got a kidney! Then I could come back to visit ). Certainly you can get fairly close to some of the folks.. share their lives etc. There's a few nurses there who share some fairly personal things with me or even stuff like pics from their latest holiday or whatever. It's not really about "us and them" but just all about "us" in this thing together.

That feeling of community is one thing that makes it a little easier for me to go back every 2nd day.

[Ken Shelmerdine]

RichardMel
I know what you mean. Apart from the initial 'discussions' I had to have about no fluid removal (and it's thanks to all that I've learned on IHD that I had all the info to make my case with) I am absolutely satisfied and contented with my unit. The nurses are the most caring and dedicated people I have ever met; there is not one with a bad attitude and as  you have said some share their own problems with me and have become more like friends. It is a kind of community and we all have a laugh and a joke much of the time.

The unit is a stand alone new building in the countryside surrounded by trees and landscaping. It feels more like a luxury hotel than a medical unit. I think we are both so lucky to be in units with such professional and caring staff as it appears is unfortunately not the case with many on IHD.r

Oh and Galvo I'm glad you've got the medical staff on your side about fluid removal, it sounds like you too are in a good clinic.