I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: galvo on November 10, 2009, 06:33:46 PM
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I'm doing my best to, and succeeding in, finding answers on this site. So please excuse me if this question has already been covered - I'm still putting out heaps of urine. How soon and why will this change?
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How's your BP?
When i was on HD Galvo it wasn't until they pulled my dry weight down to control my BP better that my urine output tapered off.
I used to be busting to pee by the end of the 4 and half hours in the chair.
I would check my weight before going to the toilet and after and sometimes the difference would be like half a kilo +.
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Hi Glavo,
With HD it is so efficient at removing toxins from you body that it will eventually cause your kidneys to deteriorate. I've been advised to expect to loose the last of my function roughly 6 months after starting hemo. That is probably the main reason i stuck with PD so long.
I'm not sure of the exact medical reason but i would assume it has to do with how hd rips fluid from your system and the fluctuations in your blood pressure. I'm sure there are other factors.
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I started hemodialysis 13 months ago, and I'm still urinating normally.
I guess it depends on just what type of kidney disease you have, and how rapidly it progresses.
You can get an idea of the rate of deterioration of your kidneys by charting your pre-creatinine and Glomerular Filtration Rate (GFR) numbers month by month. Your kidneys have so much reserve capacity that they can produce urine with just 10% of their kidney function left (that's my situation).
Note also that the kidneys perform a variety of functions, and the production of urine liquid is one of the last functions to go. Your kidneys may be producing liquid, but they may not be filtering the toxins from your body into that liquid before it goes to your bladder. And I'll bet your kidneys are no longer hydroxylating vitamin D, producing erythropoietin, all those functions you now have to take prescription meds to carry out.
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Great question Galvo, I am wondering the same thing!
Sico, your reply is interesting, because I think my dry weight is too high. So you are saying when they adjust it down I will pee less? I do drink a lot before dialysis to try to "make" my dry weight, then at dialysis they take off the minimum, so in order to still be at my dry weight afterwards I drink a bunch while I'm on the machine. Then, I weigh before I empty my bladder, or I will be under and they will make me go back in the chair to have fluid put back on! What bunch of nonsense >:(
Jenny - My Neph told me dialysis would not cause me to lose the rest of my kidney function any faster than I would have otherwise, but I'm not sure I believe him when I hear the experience of others.
I am interested to hear what others have to say about this. I guess I am still a bit concerned that the longer I am on dialysis the less I will pee and the more edema/fluid retention I will have. That would be sad because peeing is fun ;)
And by the way, my BP is great, 110/70 and stays steady during treatment.
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Sico, your reply is interesting, because I think my dry weight is too high. So you are saying when they adjust it down I will pee less? I do drink a lot before dialysis to try to "make" my dry weight, then at dialysis they take off the minimum, so in order to still be at my dry weight afterwards I drink a bunch while I'm on the machine. Then, I weigh before I empty my bladder, or I will be under and they will make me go back in the chair to have fluid put back on! What bunch of nonsense >:(
Jenny - My Neph told me dialysis would not cause me to lose the rest of my kidney function any faster than I would have otherwise, but I'm not sure I believe him when I hear the experience of others.
I am interested to hear what others have to say about this. I guess I am still a bit concerned that the longer I am on dialysis the less I will pee and the more edema/fluid retention I will have. That would be sad because peeing is fun ;)
And by the way, my BP is great, 110/70 and stays steady during treatment.
Yeah i think you will pee less if they drop your dry weight Lori. But if your BP is good i don't know why they would.
When i started HD i had what they called "even runs" where they didn't really remove fluid, just clean my blood.
But my BP would shoot up to 190/115 at the end of my treatment. Until the doc re-evaluated my dry weight by 3kg
then i started to dialyze for real and my BP was much better. Being young your body is good at hiding excess fluid.
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They say it's not the quantity, it's the quality.
Jenna never did stop urinating after 3 years on dialysis, so it was always a challenge to keep her dry weight accurate - she didn't need fluid removed.
I found this article:
Does Every Dialysis Patient, at Some Point, Stop Urinating?
At some point, most dialysis patients will stop urinating, but the rate of decline in urination is different for each patient and is dependent upon the type of kidney disease as well as the type of dialysis modality employed. Generally, patients receiving hemodialysis (HD) lose their ability to urinate faster than patients receiving peritoneal dialysis (PD). This decline in urinary output has various implications on patient management and survival.
Patients who continue to urinate while on dialysis (HD or PD) are said to have “residual renal function” (RRF), and this factor is an important consideration in their management. Dietary restrictions on sodium and fluid intake can be liberalized to some degree. Depending on the degree of RRF, less dialysis therapy may be indicated. Nevertheless, close monitoring is needed because kidney function tends to decline over time. Recognition and acceptance of this fact greatly facilitates individualization of dialysis therapy. Studies also suggest dialysis patients, who have RRF, have a greater likelihood of survival than patients who do not. In PD patients, RRF declines steadily by 1.2-2.8 percent per month, irrespective of the underlying kidney disorder that initially led to dialysis2. This survival advantage falls in tandem with declining urinary output.
Similar survival benefits have been shown for HD patients. A Netherlands trial (NECOSAD-2) showed a 56 percent reduction in death in HD patients who had RRF3,4. Similar results were shown in a study conducted at Brown University5. HD patients lose RRF at a faster rate than PD patients; about 5.8-7.0 percent per month, irrespective of the underlying kidney disorder2.
Although PD patients lose RRF at a slower rate than HD patients, the likelihood of survival on either dialysis modality over a five-year period is comparable. Therefore, it would not be advantageous to change from HD to PD despite the differences in RRF.
For those on dialysis, significant RRF permits patients’ a degree of denial about the severity of their kidney disease. As long as a patient has some RRF, it permits the notion that kidney function may recover. As such, a patient may deny that dietary restrictions and dialysis prescriptions are fully applicable to their situation. The consequences of this denial can result potentially in significant morbidity. Conversely, the loss of RRF forces a patient to fully confront the stark reality that he/she is dependent on dialysis and must be fully engaged in appropriate lifestyle and dietary modifications.
Recommendations for stopping the decline in RRF are limited. It is not clear why RRF decreases once patients start dialysis, nor why there is a difference in RRF between HD and PD patients. However, it is safe to assume in most instances there is inexorable progression of the underlying disease process itself. Some general guidelines to slow the decline in RRF include:
1) Vigorous blood pressure control, 2) The use of angiotensin-converting enzyme inhibitors (ramipril, enalapril, lisinopril) and angiotensinreceptor blockers (losartan, valsartan, candesartan), and 3) Avoidance of kidney-toxic agents (non-steroidal anti-inflammatory agents, aminoglycoside antibiotics, iodinated contrast agents used for Cat Scans)2. Because each patient is different, it is important you speak with your physician regarding the applicability of these recommendations to your situation.
More research needs to be done to learn the importance of RRF in patient survival.
Generally, patients who begin dialysis will notice a steady decline in urination (and RRF) at varying rates. Survival is improved if RRF is preserved for patients receiving PD or HD, but RRF alone does not make one form of dialysis better than the other. With additional research, we will know if it is important to direct our therapies toward preserving RRF at all.
References:
1. Bargman JM and Golper TA. The Importance of residual renal function for patients on dialysis. Nephrology Dialysis Transplantation, 2005. Volume 20: pp. 671-673.
2. Jansen MAM, et.al. Predictors of the rate of decline of residual renal function in incident dialysis patients. Kidney International, 2002. Volume 62: pp. 1046-1053.
3. Termorshuizen F, et.al. Relative Contribution of Residual Renal Function and Different Measures of Adequacy to Survival in Hemodialysis Patients: An analysis of the Netherlands Cooperative Study on the Adequacy of Dialysis (NECOSAD)-2. Journal of the American Society of Nephrology, 2004. Volume 15: pp. 1061-1070.
4. Termorshuizen F, et. Al. The relative importance of residual renal function compared with peritoneal clearance for patient survival and quality of life: an analysis of the Netherlands Cooperative Study on the Adequacy of Dialysis (NECOSAD)-2. American Journal of Kidney Diseases, 2003. Volume 41: pp. 1293-1302.
5. Shemin D, et.al. Residual Renal Function and Mortality Risk in Hemodialysis Patients. American Journal of Kidney Diseases, 2001. Volume 38: pp. 85-90.
James Bailey, MD, is a professor of medicine in the division of nephrology at Emory University and head of the renal fellowship program.
Tejas Desai, MD, is a Nephrology Fellow in the Emory University Division of Nephrology. His academic interests focus on Internetbased medical education for physicians in-training and dialysis patients.
This article originally appeared in the November 2008 issue of aakpRENALIFE.
http://www.aakp.org/aakp-library/Stop-Urinating/
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I love this site! Ask a question and, boy, do you get answers! There is a fair bit to absorb here, and this I shall try to do so. As a matter of interest, not one of my health professionals has explained any of this to me. They peer at me and say 'we'll take off 500.'
I am doing the right thing and am following the renal diet prepared speciffically for me by the dietician, and I am losing weight without anything to do with dialysis. I wonder if this is going to confuse the issue?
Sico, my BP (medication controlled) shoots up in the final hour of D. I have mentioned this on another post and haven't had a look at the responses there yet. I am in the middle of a 24 hour urine collection. I'll report on the output.
Yeah Rightside. I understand that the urine is pretty much 'unfiltered'. It's just that I sort of reckon that some urine output means some fluid intake.
Maker, I am green with envy at your BP. When I came off the machine yesterday, I was 180 something over 100, I think! I agree with you whole heartedly - peeing is one of life's great pleasures!
okarol, a very interesting article. "For those on dialysis, significant RRF permits patients’ a degree of denial about the severity of their kidney disease" What a miserymguts researchers are! How about thinking along the lines that significant RRF permits patients a degree of pleasure and hope. Right, Maker?
Thanks once again, y'all (I'm going a bit suthn).
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hell yeah Lori isn't only absolutely gorgeous (love the new pic, hun!) but she has great figures too.. I mean the BP.. come on.. really!! :rofl;
Ah the 24 hour urine collections - they are mucho fun they are. At least for we boys it's easier to do!!! (I do not envy that one on the ladies). Certainly that will give a clearer indication of your kidney function at this point.
I'm surprised your treatment team hasn't sat down with you and explained all this stuff too you. You've had the fun dietician visit and gotten that stuff, so that's good... but it's sad if you haven't had the rest of it explained to you. I find the staff in my hospital unit are pretty good with that stuff - specially with new patients - if they have time they'll explain what they're doing and why and spend time to answer questions. Either that or they'll point at me and say "hey he'll tell you" :rofl;
yes the article Karol posted was a little "miseryguts" - I agree - but it's also quite accurate. I know a few people who have no fluid restrictions while on dialysis - and I envy the hell out of them.. but then I hear "oh I had 5 beers and 3 rum and cokes" or whatever and that's great, but that can affect them in other ways - what if they're drinking lots of OJ(potassium), or coke (high Phos) and so on? if they are told they can relax their diet a bit they might indulge a little too much, and then come crashing down at some point.
Certainly I have a bit of RRF but I'm certainly not understating the severity of my condition or exactly what it means - of course I do have the fluid and diet retrictions so no slacking off for me!!!
Yes, it's a lot to absorb when you're starting out with dialysis - that is for sure. A lot to adjust to as well - it can be difficult for some people.
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Our home dialysis Nurse finally gave me an answer to a question I have puzzled over lately, about midway through a treatment Sharon's BP dips down to the approximate range of 90/55 from a normal 120/70, she said it probably indicates that the excess fluid in the blood has been removed and the body is being signaled to release fluid from the cells and the BP goes up after that because of the fluid now in the blood again (I hope that makes sense)
Tom
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I'm not really sure why it stops, but after 6 years on PD I'm still peeing, but I'm down to 100 ccs a day. Six years ago I started at about 2600 ccs!
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I realize I'm not quite with the PROGRAM yet, but I'm still feeling a little peculiar celebrating when people pee! They keep telling me to measure mine, but I refuse to pee in the measuring cup. I mean I use it for cooking. Joke, Joke, Joke. Moatly. Well, partly.
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My husband on hemo after almost 3 years still pee's pretty good. He's not very cautious on watching his fluid intake though so this may have a little do do with the amount urinated. We have a friend who after 5 years just stopped going.
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:oops; I was producing 1 and 1/2 to 2 liters of urine a day for ten months on hemo and suddenly nothing. It has been really difficult dealing with the change. I have had to cut my fluid consumption way down and I am still going in too heavy.
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After two years on dialysis, one on haemo, and the past year on CAPD, Mum's showing no sign of slowing down in the peeing dept...
If it were an Olympic sport, she'd bring home the gold!.... ;D
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Sorry Darth .. silver ! I still go after 5 yrs on D !
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Sorry Darth .. silver ! I still go after 5 yrs on D !
Great to hear it!... Just try to slow it down a bit, will you???... That huge waterfall is somewhat disconcerting!.... :rofl;
Darth....
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I have been on dialysis since July and i still pee. Sometimes I pee more than other times. i don't think I am living in denial here about my disease. They don't put you on dialysis for the fun of it.
I am not fond of the diet. I was the microwave queen. I lived on canned and frozen food. Since my kidneys went south, i have cut out all canned and almost all frozen food because they are loaded with sodium. When you don't care for veggies, it doesn't leave much to eat. Just makes do. I have seen the nutritionist, but she is nothing to write home about.
I have noticed my BP during dialysis has been quite high. In fact, the doc just started me on linsinipril to go with my Cattapress and my other med I can't think of. I just took my BP and it has dropped to 110/72. I will take it!
Okarol...Thanks for the article. It was a good one. I am glad, in all the bad luck that I have had, statistcly, since i have residual function, I may live a bit longer. :)
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"Avoidance of kidney-toxic agents (non-steroidal anti-inflammatory agents, aminoglycoside antibiotics, iodinated contrast agents used for Cat Scans"
This is what I had posted about once before. Physicians are eager to schedule dialysis patients for venograms and Fistulagrams and so on, figuring that "so what if the contrast dye is nephrotoxic, their kidneys are dead anyway." That's what one doctor told me to my face.
But in fact, even with us dialysis patients, our GFR is still greater than 0.00 (unless, of course, our kidneys have been surgically removed). There is a 1-3% chance that this contrast dye, if left in the body for too long, can totally destroy all remaining kidney function. That's why if you're going to have a venogram or Fistulagram, try to get dialyzed right afterward. The dialysis will remove that dye before it can cause too much damage.
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This is what I had posted about once before. Physicians are eager to schedule dialysis patients for venograms and Fistulagrams and so on, figuring that "so what if the contrast dye is nephrotoxic, their kidneys are dead anyway." That's what one doctor told me to my face.
:Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik;I'm not really sure why it stops, but after 6 years on PD I'm still peeing, but I'm down to 100 ccs a day. Six years ago I started at about 2600 ccs!
2600ml! I started with about 900ml, now i guess it may be 600ml. Should do a collection.
But i suppose when i first ended up in the hospital one of the Neph's there asked me about my output and i said i hadn't noticed any change, but that's 'cause i was overloaded with around 6kg's of fluid.
I know for a fact that the more overloaded with fluid i am the more i will urinate. Does anyone else find this?
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Did me 24 hour urine collection - 3500 mls!!!!!!!!!!!!!!!!!!
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Beautiful!!! :yahoo; :yahoo; :yahoo; :clap;
(who ever thought i'd be yelling 'beautiful' and clapping at a man's wee! :rofl;).
That is awesome
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Thank you Jenny. Dialysis sure gives us a different outlook, eh!
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Richard, you are just too funny!! I was waiting for you to saying something clever about Lori! She looks like a very sweet girl. I'd post my picture but I'm not young, cute or blond!!
If you really want to look at loosing urine output from a "positive" perspective, just think, when you're old and can't get out of bed, you don't have to worry about using a bed pan!!!
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Did me 24 hour urine collection - 3500 mls!!!!!!!!!!!!!!!!!!
When I did mine prior to starting dialysis I overflowed the container they gave me (I think it was 3600 mL). :o
But my Neph said I was overhydrating and that's why sometimes I have low sodium . He said the urine didn't necessarily indicate kidney function, because I was just peeing out the fluids, but no toxins. Basically, presence of urine does not equal kidney's filtering wastes.
So I am no longer drinking over 100 oz of fluids a day and my sodium level is more normal. I had a few seizures earlier this year that the Doctors think were low sodium related.
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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.
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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.
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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. :thumbup;
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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).....
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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?
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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"!!!
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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....?
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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 ?
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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!!!
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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.
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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!
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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'.
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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.
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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.
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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.
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Your centre sounds like one that other centres should go to for training Dan!
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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 :rofl;) 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.
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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
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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.
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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.
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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.
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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!
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Keep enjoying it. You miss it if it goes. Who'd have thought.
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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.
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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.