how good dialysis is cleaning and requesting less

[marlinfshr]

I'm trying to figure what this means. In the Davita clinic I use there are a few people who only do a couple hours each treatment or go in only twice a week. I am 3 times a week 4 hours each time. I feel great. My numbers are excellent. I missed a day last week and felt great before going to my next session after 4 days without. I keep claiming I'm probably in denial but the creatinine numbers don't lie so I need it even though I feel like I don't. The worst I ever feel is after dialysis. My creatinine is still holding around 5.6 so that shows that my kidneys are week and I need to go through this so I accept it.  I also don't retain any fluid and every time they take more then the minimum of 1200 ml (because I decided to actually eat and they can't seem to grasp that a late dinner adds weight) I get headaches and my legs feel like prunes.

With all this babble having been said, I asked my DR if I could start getting less time after he told me my numbers were once again excellent. He said a direct "NO". He then said that those cleaning levels (the spKdt?V Dialysis) were at 1.35 and that I need to be down to a 1.2 or lower to be considered for less time. However, when I look up on the Davita lab section it shows that my goal is supposed to be 1.2 or higher which I have been meeting. Any ideas?

[cdwbrooklyn]

Let me say this, everyone is different.  Some people do not need to do dialysis 3 times 4 hours a week in-center because they still have some sort of kidney function.  However, your results are good because you are doing your treatments with no interruptions.  Yet if you believe that you can do less time talk to your doctor and let him know that you want to try less time for a month to see if your results will remain the same.  He may not approve it but it’s your choice.  Only thing is you will have to sign a document stating you cut your time unless your doctor writes the order.  Explain to your doctor you will try it for a month to see if your results are the same and if not, you will go back to your original order and if it is the same, you want him to write out an order for less time.  You have that right as a patient.  When I was in-center, I started out 3 times 4 hours a week.  After a year, my doctor cut my time to 31/2 hours.  Do not let your doctor tell you what you can or cannot do.  He can only advise you and provide you information that will help you with your health.  If you believe you can cut your time, try it but be true to yourself. 

[cattlekid]

The only thing that I have to ask is if you are on a transplant list.  Because if you are, and you try to tinker with your time, especially if you start signing yourself off the machine, you may risk running afoul of your transplant center.  They may see this as the dreaded "NONCOMPLIANCE" and then start making noises about removing you from the list. 

[marlinfshr]

I am in the process of getting listed so I don't want to do anything to jeopardize it. Or else I think I would be more demanding. At this stage though, I'm just going along with it because I want on that list. Now if the DR would see that I can be cut back then I don't feel there would be a problem.

It just seems they don't believe me when I tell them how I feel. The nurses don't seem to believe I gain weight by eating. It must all be fluid retention because I have kidney problems so lets drain more until the patient feels like a dried out prune. The DR is the one telling me how sick I am when I feel great overall, just like I have for years, with the exception of a few hours after dialysis where I feel worse. I have only missed one appointment and I told them in advance that I may need to do another day then scheduled. Hopefully it won't go under as non-compliance because it was a fishing tournament in which I was hired to crew and it was not up to me what 3 days of the week we fish. Since I'm not working I needed the money for my mortgage. There will be the same chance next week then I'm done. They were all surprised that the next day I went in I wasn't feeling bad. I still felt great and that was after being on my feet for 15 hours each day on a moving boat. I accepted when I was scheduled for a PD catheter placement over a month ago so I was under the impression I would have been on PD these weeks and couldn't back out and leave everybody hanging.

Another confusing part is how the DR flat out said "no" to cutting my time because my number showing how good the dialysis was cleaning was at 1.35. He says my goal is to keep it under 1.2 but Davitas goal is to keep it above 1.2 and every time mine has been above---where I am under the impression it should be.

[Hemodoc]

I'm trying to figure what this means. In the Davita clinic I use there are a few people who only do a couple hours each treatment or go in only twice a week. I am 3 times a week 4 hours each time. I feel great. My numbers are excellent. I missed a day last week and felt great before going to my next session after 4 days without. I keep claiming I'm probably in denial but the creatinine numbers don't lie so I need it even though I feel like I don't. The worst I ever feel is after dialysis. My creatinine is still holding around 5.6 so that shows that my kidneys are week and I need to go through this so I accept it.  I also don't retain any fluid and every time they take more then the minimum of 1200 ml (because I decided to actually eat and they can't seem to grasp that a late dinner adds weight) I get headaches and my legs feel like prunes.

With all this babble having been said, I asked my DR if I could start getting less time after he told me my numbers were once again excellent. He said a direct "NO". He then said that those cleaning levels (the spKdt?V Dialysis) were at 1.35 and that I need to be down to a 1.2 or lower to be considered for less time. However, when I look up on the Davita lab section it shows that my goal is supposed to be 1.2 or higher which I have been meeting. Any ideas?

If you wish to live, get as much dialysis as possible. I do about 22 to 24 hours a week. The more the better. Don't cut down my friend. You are only getting 12 hours a week right now.

Secondly, I never took off more than 500 ml. The 1200 ml limit is not effective in preventing backflush as many believe it will.

In fact, at the age of 26, consider home hemo at night as a bridge to transplant. At 26, you have a long road of kidney disease ahead of you. Get as much dialysis as you can my friend and don't cut back.

I ordinarily do not feel bad at the end of dialysis. The NxStage has ultrapure dialysate which means it has reduced endotoxin levels (endotoxins are bacterial cell walls). Reducing ultrafiltration if you don't have a problem with fluids may possibly help preserve your residual renal function longer.

Consider all of your options but don't cut your dialysis, that can lead to severe consequences.

[NDXUFan]

I am in the process of getting listed so I don't want to do anything to jeopardize it. Or else I think I would be more demanding. At this stage though, I'm just going along with it because I want on that list. Now if the DR would see that I can be cut back then I don't feel there would be a problem.

It just seems they don't believe me when I tell them how I feel. The nurses don't seem to believe I gain weight by eating. It must all be fluid retention because I have kidney problems so lets drain more until the patient feels like a dried out prune. The DR is the one telling me how sick I am when I feel great overall, just like I have for years, with the exception of a few hours after dialysis where I feel worse. I have only missed one appointment and I told them in advance that I may need to do another day then scheduled. Hopefully it won't go under as non-compliance because it was a fishing tournament in which I was hired to crew and it was not up to me what 3 days of the week we fish. Since I'm not working I needed the money for my mortgage. There will be the same chance next week then I'm done. They were all surprised that the next day I went in I wasn't feeling bad. I still felt great and that was after being on my feet for 15 hours each day on a moving boat. I accepted when I was scheduled for a PD catheter placement over a month ago so I was under the impression I would have been on PD these weeks and couldn't back out and leave everybody hanging.

Another confusing part is how the DR flat out said "no" to cutting my time because my number showing how good the dialysis was cleaning was at 1.35. He says my goal is to keep it under 1.2 but Davitas goal is to keep it above 1.2 and every time mine has been above---where I am under the impression it should be.

YES, you can gain weight by eating, have been on home dialysis for seven years.  What they are telling you is BULL. 

[NDXUFan]

I am in the process of getting listed so I don't want to do anything to jeopardize it. Or else I think I would be more demanding. At this stage though, I'm just going along with it because I want on that list. Now if the DR would see that I can be cut back then I don't feel there would be a problem.

It just seems they don't believe me when I tell them how I feel. The nurses don't seem to believe I gain weight by eating. It must all be fluid retention because I have kidney problems so lets drain more until the patient feels like a dried out prune. The DR is the one telling me how sick I am when I feel great overall, just like I have for years, with the exception of a few hours after dialysis where I feel worse. I have only missed one appointment and I told them in advance that I may need to do another day then scheduled. Hopefully it won't go under as non-compliance because it was a fishing tournament in which I was hired to crew and it was not up to me what 3 days of the week we fish. Since I'm not working I needed the money for my mortgage. There will be the same chance next week then I'm done. They were all surprised that the next day I went in I wasn't feeling bad. I still felt great and that was after being on my feet for 15 hours each day on a moving boat. I accepted when I was scheduled for a PD catheter placement over a month ago so I was under the impression I would have been on PD these weeks and couldn't back out and leave everybody hanging.

Another confusing part is how the DR flat out said "no" to cutting my time because my number showing how good the dialysis was cleaning was at 1.35. He says my goal is to keep it under 1.2 but Davitas goal is to keep it above 1.2 and every time mine has been above---where I am under the impression it should be.

 

NDXUFan: 
What HemoDoc is telling you is correct.  I am only 45 and I still have many years ahead of me, because besides my kidneys, I do not have any other health issues.  I understand that you need money for your house payment, yes, I understand and that makes sense.  If you can, try to get on or start an In-Center Nocturnal program, then, you can sleep and you would not have these issues.  Many on dialysis have health issues because 12 hours per week is simply not enough....

[obsidianom]

As a physician I get REALLY irate at doctors who dont listen to patients or use thier leverage such as "non-compliance labels" to force patients to do things their way. The transplant people tend to be among the worst as they believe in a way they are gods as they hand out organs . their arrogance is among the worst. My wife and i dealt with this last year and sent a SCATHING letter to the entire transplant team we dealt with . It did shake up some people there.
With all that said, I still believe you have the right to be completely involved with your treatment. If youwant to cut back the ultrfiltration they should do it . Now that doesent mean you are correct necessarily but you have the ABSOLUTE right to control your treatment.
 My friend is the medical director of a local hospital and a psychiatrist. WE share a similar ideology in medicine . The DOCTOR WORKS FOR THE PATIENT. IT IS A SERVICE LIKE ANY OTHER . THE PATIENTS ARE NOT BEHOLDEN TO THE DOCTORS AND THEIR ALMIGHTY POWER. REMEMBER THAT ALWAYS. THEY WORK FOR YOU.
You should always listen to them and ask MANY questions . however in the end the final arbitror is YOU. Even if you are wrong, that is your right as a free person .
Just dont do anything dumb to prove your point. Try to work with the docs if they are reasonable. They can be uesful if you let them.

[noahvale]

*

[marlinfshr]

Thanks for the reply's. Believe me, I'm being nice and asking questions and every treatment day come to the center on time as if it was my job. My time issue was last week and will possibly be this next week. I have tues, thurs, and Saturdays that I do in center HD. Next weeks tournament is any 3 out of the 5 weekdays. I really don't have any say in the days we go. It is based on weather, how good the fishing is, and the days the paying clients can go. I have already asked the center nicely and they said to just let them know so I can change to another day if needed. Last week I left a note on the door because I leave/return before/after hours. Wed morning I called up and asked if they had a slot which they did in the afternoon. We were scheduled to fish on Thurs so I told them I couldn't make it on Thurs and that I'd just come in on my scheduled Saturday. I didn't see a reason to schedule something Fri evening and then return at 6:00AM Saturday morning. The center has been alright with this. I am worried how it would affect getting on the list but there is also my life which continues on. But that is a reason I just ask nicely, like when I asked the DR if some time could be cut. The nurses were actually suggesting it since all my numbers have been excellent and I've been feeling great. There are even a few nurses who understand that my dry weight is actually going up and I don't retain fluid---the rest though can't seem to grasp that and want to drain every last drop of fluid out of me.

I wonder, if I have a similar schedule next week if it would be better to just go ahead and do a couple days in a row if needed, even if it will be an evening followed by a morning shift. Just so I can get all 3 of my days in and not jeopardize anything. In a perfect world we won't fish Tues and Thurs and this will be a non-issue and there is that possibility.

As far as home dialysis. I finally got my PD catheter in this past Tuesday. I was originally scheduled for it the early part of July so that is when I accepted working these 2 tournaments as I would have been on PD right now.

and noahvale,

Thanks for your post and description of how you started. It explains a lot about what I (and I'm sure many others) are going through. This was something that came up sudden to me, though I've had my warnings with a high creatinine level for the past decade . I'm sure what complicates my acceptance is I think I'm one of those that shows no symptoms. But I will be the first to admit that the creatinine levels don't lie and they are still (OK,  permanently) elevated now to the point I need dialysis and a new kidney. I will admit it is hard to accept when you don't feel any different then before. I'm 45 (not exactly a spring chicken) but since 2002 I have felt the best I have in my life and that has been with elevated creatinine. I feel the same now as I have for the past decade so ESRD is hard to accept, especially since I'm on my 4th month of my newly changed life.

As far as the KT/V levels, I understand better now and maybe there was a communication flub between me and my DR. How you put it makes me understand how it works a little better. It makes sense that 1.35 isn't really much different then 1.2 when it's written together. Though I just saw my latest taken 2 days ago at 1.6.

One thing that's been hard for me is getting questions through correctly along with understanding any explanations why from the DR's. I guess it's common when on in center dialysis to only see your DR unexpectedly while you are asleep in your dialysis chair. That suddenness makes me fumble or forget any questions I may have thought about asking. At least going to a regular DR visit I can be prepared and have a list of questions to ask. Perhaps once I officially start PD in a few weeks the DR visits will be more scheduled.

[obsidianom]

The article on HDP is excellant. I would like to see more data on it, but logically it makes sense. What it does do is show that the NUMBER OF TIMES PER WEEK YOU DIALIZE is more important than the hours per treatment. The math involved SQUARES the number of times per week while the hours are a simple multiplier. In efferct this proves what I have seen and Nxstage does, which is shorter more frquent dialysis. That is what my wife does and the change from in center is dramatic for her.
5 times per week squared is 25 , multiplied by 2.75 hours per treatment  equals 68.75 which is a decent number on the HDP scale.  It would require 7.64 hours  in center at 3 times per week to equal that.  Normal in center is only 3.5 to 5 hours for most. That gives a range of 31.5 to 45 HDP for most patients which is quite low. Going by the math my wife went from 31.5 to 68.75 or MORE THAN DOUBLE the dialysis at home on NXSTAGE.
Bottom line is more frequent dialysis is closer to natural kidney function than length of each treatment.

[cdwbrooklyn]

Wow, that's amazing...it complains a lot.   

[Bill Peckham]

Marlinfshr I assume you are still producing urine - when was the last time you did 24 hour urinalysis? I ask because your creatinine level should not be the sole basis for starting dialysis. Even ones eGFR should not be the basis for beginning treatment. The most recent report from the USRDS notes that "[t]he percentage of dialysis patients beginning therapy with an estimated glomerular filtration rate (eGFR, calculated with the CKD-EPI formula) above 15 ml/min/1.73 m2 continues to rise. It is not clear if this progressive increase is the result of severe comorbidity or a simple numerical starting point based on the ability to calculate the eGFR. Hopefully, symptoms and complications of uremia are still the primary indications for starting renal replacement therapy rather than a simple number, one which has been brought into question in recent years in controlled trials of early versus later dialysis initiation." (my emphasis).

My guess is that the people you see dialyzing for two times a week, 2 hours at a time, were started on dialysis based less on their symptoms/quality of life and more on the quality of their health insurance. Current research is casting profound doubt on the wisdom of early starts.

What were your clinical symptoms prior to starting? I'd insist on a 24 hour urinalysis to evaluate your current kidney function.

[marlinfshr]

1

[marlinfshr]

What were your clinical symptoms prior to starting? I'd insist on a 24 hour urinalysis to evaluate your current kidney function.

I never had any symptoms before. I did have an elevated creatinine level since chemotherapy in 1999 of 2 to 4. I had a heart attack this past April in which the dye used to place the stents took my kidneys over the edge. Since then the only symptom I've had has been anemia. In the hospital it was 8.1 but has risen (and held) to 11.7 since without medication. I am still producing urine as well as if I have no issues. I only had a 24 hour urine check in April when I was in the hospital. I've had nothing since. The only tests I've had since starting dialysis has been the monthly potassium, hemogloben, KT/V, and phosphorous in which I don't really need any binders. So there are definitely reasons why I have questions. I accept the fact that my kidneys are weak and I'm sure they will get worse but with no symptoms I like to wonder why they aren't doing or haven't done any further tests.

[Bill Peckham]

Anema doesn't get better with dialysis, you can take EPO whether you dialyze or not. Dye can impact the kidneys but the injury can be acute or chronic. I am troubled that you never did a 24 hour urinalysis and that you never had any symptoms of uremia - itching , nausea, lack of appetite - let alone had any symptoms so severe that they impacted your day to day living. I'd want a second opinion.