I recently began treatment with NxStage, but I am not feeling well. In-center I was dialyzing for 5 hours at BFR 350 3x a week. Since being on NxStage I have been using BFR of 450 5x a week (it will be 2-3 weeks before I can do 6x a week). My treatments are averaging 2.5 hours, so I am actually getting fewer hours of dialysis than when I was in-center. My blood pressure is perfect now and I don’t need bp meds anymore, but I am tired and short of breath, I am getting leg cramps through the night (which never used to happen) and just do not feel well. My center seems to feel that the BFR of 450 is adequate, but I am thinking that a slower BFR, while it would lengthen treatments, might really be better for me. What do you think?
Dear Alaskagirl
I have to preface my response with my usual mantra - and this is a personal and very strongly held view - that I cannot bring myself to believe that any form of short-hour treatment, even if given at a frequency of up to 6 x week, matches in any way longer, slower, gentler therapy.
The NxStage, though it is adaptable to longer hour therapy and there are now a number of patients using it for true nocturnal dialysis overnight (off-label, as I believe it remains to be FDA certified as a nocturnal machine), is, nevertheless, in its primary iteration, a machine designed for frequent but short-hour home day-time therapy. Though its dialysate flow rates are very low, this is in part compensated for when higher blood flow rates are used.
This brings me to my next personal and strongly held view - that I dislike the concept of high blood flow rates.
I have made it quite public that I am not a fan of ‘flogging the fistula’ … I see no point. This is especially so if slower, longer, gentler treatment is available and can be given. I view high blood flow rates as at least a potential danger for the fistula as ia high BFR means (1) high exit flows and potential wall suction and turbulence-related damage if there are any arterial feed issues and (2) high venous return in-flows with potential sheer-force turbulence at the venous return site with wall damage or stress as a result there too.
Is there good research data for either of these concerns? … sadly, precious little. My views on this have sparked a recent and interesting debate on these issues at the RenalPro website with what seems to be a general agreement that we (a) dont know (b) we should know and © we had damn well better try to find out! All agreed that the theory, at least, of potential vessel damage from high exit and inflow blood flows is hard to escape. What data that is available seems divided on the issue.
So … I find myself answering a ‘double-barrelled’ pet-hate question re high blood flows and short hour dialysis!
I think your observation that your total dialysis hours are less, not more, is critical. I think you are experiencing the symptoms of … and I hate to have to say this but believe it to be true … insufficient dialysis - this, despite the putative ‘benefits’ of home rather than centre care.
Home dialysis, in my humble view, is only an advantage because … and this is apart from its’ greater convenience, self-suited scheduling, reduced travel, self-care and self-esteem etc … at home you can dialyse longer and more often!
It makes no sense to me to ‘go home’ and then to dialyse short, fast and furiously! To me, in your case, this is exactly what has happened - and to your detriment. And, home should be allowing you - no, encouraging you - to do exactly the opposite.
But then I come from a country where the dialysis ethic seems diametrically opposed to that which seems popular in the US - short and fast treatment. Here, it is all longer and slower.
Are our Australian dialysis principles right and US methods wrong? Well, we think so. But, I wont explore that debate further here …
So … my view and response to your question? …
I would be discussing with your team the ways in which, first and foremost, your treatments could be lengthened.
You were on 5 hours! Hooray, I say. Would that more were! Now you are on 2.5 hours. Wham-bam-thankyou-Ma’am dialysis. Not my cup of tea!
You may want to read through the “Topics of the Month” I did a year or two ago (these can be accessed from the HDC home page) on (1) solutes and (2) fluids. Further, the 1st two HDC Webinars that I gave on were also on (1) solutes and (2) fluids. I think these are still working and available at the HDC home page … Dori - do these still work??
Either or both of these will give you an explanation of why fast dialysis isnt good dialysis.
If there is any way you can, with your units’ approval of course, lengthen your treatments … I would do it!
Then, once lengthened, I would be down-sizing your blood flow rates too … but ONLY if your session length can be significantly extended 1st.
You asked for my views.
These are, in a nutshell, longer, slower, gentler. I have used the following analogy in many talks … and this analogy appears at my website too …
Good dialysis is just like many would suggest good love-making should be …
The longer the better,
The slower the better,
The more gentle the better
and …
The more frequent the better.
I hope you will forgive me if, in advancing this analogy, I have seemed ‘forward’. It is meant with wry humour, nothing more … but … I hope I have answered your question.
John Agar
http://www.nocturnaldialysis.org
Yes, recordings of all of the previously done webinars can be accessed from the home page ()http://www.homedialysis.org), though there can be an annoying echo. I think we’ve finally got a handle on that for future ones!
Here are the topic of the month articles that are relevant:
– Hemodialysis: Why More is Better - http://www.homedialysis.org/resources/tom/200601/
– Fluid and Solute Removal: How & Why (Part 1) - http://www.homedialysis.org/resources/tom/200711/
– Fluid and Solute Removal: How & Why (Part 1) - http://www.homedialysis.org/resources/tom/200712/
Thanks, Dori. Perhaps ‘Alaskagirl’ might go to these old references to check the reasoning behind the ‘More is Better’ arguments I make.
Cheers
John Agar
http://www.nocturnaldialysis.org
Dear Alaskagirl, I actually grew up years ago in the Anchorage area as well as Nome and Moose Pass.
I am now on the NxStage at 40L over 4 hours, 5.5 times a week. ( 3 on 1 off) I started on 20L which was not enough at all for me and if my unit had not allowed me to increase to a higher dosage, I would have not stayed on the NxStage. I use a much lower blood flow rate since there is some hypothetical evidence suggesting that fistulas last longer with lower blood flow rates and less turbulence. To do the 40 L, I have a higher than recommended FF of 45% for a total of about 23 hours of dialysis each week. You need to understand that when I was incenter, the dialysate flow rate was 800 with BFR of 400. That is a total of 192 L of dialysate over 4 hours instead of only 40l with NxStage.
The error that NxStage makes in my opinion is a marketing ploy of talking about how well they maximize the efficiency of the dialysate at the low flow rates, yet isn’t the issue instead getting the maximum benefit of of dialysis to the patient instead? Yeah, it is pretty neat that they can get really high efficiency of dialysate, but what we really need is maximum efficiency at the level of the patient, not the machine. I wrote an article on this issue called Taking NxStage to the Max.
Northwest Kidney Centers uses a higher spKt/V goal than the usual 0.5 most units use. They have some recommendations you can take to your docs to consider using a higher dosage of dialysate and perhaps you will feel better. If you keep your FF at a level of 35%, you will add time to your daily use as well, but time alone is not the only issue with NxStage because of their very low clearances, especially at 20l or less per session that many centers use. In my opinion, it is just too little dialysis. Personally, I wish I could do 60L which I can’t do as short daily use. I am pretty sure that my wife will not get any sleep at all if we went to the nocturnal sessions and I have concerns about how my upper needles stick out from my arm. I guess I still have a lot of muscle mass in my biceps so the needles do not lay flat. However, I am aware of more than one patient who uses 60L nightly with NxStage and they have clearances over 1.0 with each session. The take home message of NxStage is that it is both a time factor and a dialysate dosage factor that need to be considered together using a st Kt/V which measures it on a weekly basis. you can use this to compare your NxStage results to your incenter results.
Dear Alaskagirl
One of the promises I made to Dori when we decided to begin this site was to try to write for all … to write comprehensively but also to write comprehendingly … so that all could understand and follow. I have tried (and will try to continue) to follow that basic principle.
That said … and perhaps said as an explanation for why I try to steer away from technical answers … I find myself answer Peter’s post as follows:
I think Peter is right … well … mostly right. He is an erudite, doctor-dialyzor and, as such brings a depth of understanding to dialysis I will never (I hope) have … that of a medical consumer as well as a medical treater. As such, I am awed by many of his contributions. And … I have never found him wrong. But, this time, I take a slightly different view - not in substance so much as in emphasis.
I agree with all Peter has said except for the fact that I disagree with all his emphasis on ‘spKt/V’ and ‘litres’ … on ‘numbers’ in general … and I was absolutely horrified by that reference to an in-centre BFR of 400 and a DRF of 800 ml/min – not, mind, that he was for one nanosecond recommending it - simply, that he managed to withstand it!
I don’t think the ‘numbers’ matter a jot. Obfusticating simplicity with numbers and jargon is, in my view, part of where we have gone wrong. It saddens me that dialysis has become so very ‘numbers-driven’ that even patients are using them.
It seems to be even a ‘requirement’ that a given Kt/V is reached [NB: as I understand it, Kt/V has so become the clinical standard for dialysis in the US (NB: the US only) that is now enshrined in US law: HR1067 of Title XVIII, Social Security Act 1995].
I believe, strongly, that numbers: blood flow rates, litres of dialysate, the ‘dreaded … no, hated” Kt/V - all that ‘stuff’ – is the ‘stuff’ of smoke and mirrors. We have hidden the true worth of dialysis behind jargon that even dialysis docs find it difficult to grasp and understand – and perhaps that’s why so many of them seem to have retreated from the argument (or engagement) altogether. If that’s too much for the docs, pity the poor dialyzor!
The human kidneys function 24 hrs a day, day in night out, 7 days a week and 52 weeks of the year … providing basal, background, fuss-less function.
You are getting – correct me if I am wrong – 2.5hrs x 5/week solute (small and middle molecular solutes – though precious little middle as middle molecule clearance is utterly factored by time … and time only … with current non-protein-leaky membranes) clearance + 2.5hrs x 5/week fluid extraction (and that is only – or largely – fluid extraction from your smallest body fluid compartment, the intravascular space).
Maths tells me that that you are achieving 650 hrs of fluid and solute ‘grab and run’ annually. Contrast that against, for example, my kidneys which (I hope) are providing me with 8736 hrs of fluid and solute ‘ooze’ annually.
That equates to you getting only 7.44% of the fluid and solute clearance ‘opportunity’ that I get … and from a far less efficient system in the first place.
The ways to increase the efficiency of your grab and run process is NOT, in my view, to tinker around the edges of 7.44% but to change the paradigm entirely … to simply give you more hours of filtration a year, a month, a week, a treatment and to insure that treatment remains as frequent as possible/tolerable!
Here, we have chosen to do that, wherever and whenever we can.
Within the constraints of ‘tolerability’, one can only really raise the hours meaningfully if done in a persons’ down-time … at night … hence we have switched, wherever and whenever we can, to overnight dialysis. I note Peter’s comments re sleeping – and this IS and issue for some dialyzors and for a number of dialyzor-partners, but we have found that the vast majority overcome this hurdle with both sleeping well.
All the BFRs, DFRs, Kt/Vs, litres-of-exchange, dialysate maximization ploys in all the world just do not compensate for the total number of weekly hours spent ‘at the membrane’.
It’s ‘membrane contact time’ (MCT) that counts – nothing more. Do what ever you can to enhance MCT and all the rest will fall in behind, like good foot soldiers.
Maybe I am wrong but I just don’t believe that ‘efficiency’ numbers matter squat against time and frequency. We can argue all we like about 20L: 40L: FF 35%: FF 40%: spKt/V goal 0.5: spKt/V goal 1.0 … all, mumbo jumbo!
I would like to see the rhetoric change to, simply, ‘how many hours’ and ‘how often’ and thus … ‘how to achieve’!
Simply put … the rest follows.
John Agar
http://www.nocturnaldialysis.org
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Just a little clarification of my point on stKt/V as a unit of measure for NxStage and in center clearances. Not to defend the noted inadequacies of Kt/V in the least, but when we are looking at why some people including myself did not feel well on the standard starting dosage recommend by NxStage, I did find the stKt/V of use in comparing tow very different dialysis modalities. I suspect that Alaskagirl doing 5 hours 3 times a week, she is actually getting a higher clearance than her current 2.5 hours at 6 days a week and that may indeed be a measure she can take to her dialysis team as an objective measure that may have a correlation with her symptoms in addition to the fact that she is actually getting fewer hours of dialysis as well.
In my case, I had an incenter spKt/V of about 1.4 on most measures. On 20L of NxStage, my spKt/V for about 2.5 hours of dialysis was 0.5 and I felt TERRIBLE just as Alaskagirl has noted. In this instance, my stKt/V was less with NxStage and the daily frequency did not make up for the excellent clearances I was getting incenter. I took a look at the science of low flow solute removal with NxStage and hypothesized for myself that although time on dialysis is absolutely an important factor, but with the significantly lower clearances on NxStage, we are looking at different therapeutic curves that frankly have not been defined in the public medical literature available on NxStage. I thus hypothesized that I could improve my clearances to see if there was a clinical effect by increasing the dosage of dialysate beyond the standard recommended doses as well as increasing the dialysate FF to 45% which kept me below the theoretical 200 ml/min limit noted in NxStage literature for high dialysate efficiency.
I increased first to 30L at FF of 35% but still did not feel I had even returned to how well I felt in center on most days at nearly a 4 hour run, 5 times/week. I then went to 40L at 45% FF and only at that level of clearance did I feel better clinically than incenter. Had my unit not allowed me to increase my dosage to 40L, I would have absolutely quite NxStage especially on the days when I had no choice but to go two days without dialysis. I believe that what Alaskagirl is experiencing is related to the unique characteristics of NxStage which is unlike all other dialysis machines used to date which operate at much higher dialysate flow rates since I went through the exact same symptoms as she has related in her posts.
One of the most important markers of my treatments that I followed when starting on NxStage was PO4 levels which I had been able to maintain at an average of 3.5 without any binders while incenter conventional dialysis. My PO4 levels on the same diet jumped by nearly 30% even with 30L of dialysate and I could only duplicate my prior results when I went to the 40L at the same exact time factor of hours/week as I had on 30L. A recent article documents that NxStage has much lower levels of solute removal for each individual session that is made up by higher frequency, but it does not match the solute clearances of other home dialysis machines such as the Baby K:
The weekly treatment time for the patients averaged 17.4 h/wk, a figure higher than the average weekly treatment time embraced by many US in-center dialysis units where a thrice-weekly regimen is practiced. The removal rates and clearance values in the present study should therefore be interpreted in the context of increased weekly dialysis time. While the low dialysate flow rate reduces urea removal, the increase in the frequency of the treatments improves it. In the case of phosphorus and β2M, increased dialysis time is more critical for their removal and compensates for the low dialysate volume.
http://www3.interscience.wiley.com/cgi-bin/fulltext/122599527/PDFSTART?CRETRY=1&SRETRY=0
My continued use of the NxStage is that I have been able to improve most, but not all of my symptoms with the more frequent treatments which are now 5.5 times/week on average for a total of 23 hours. Time is an absolutely critical component of the NxStaqe equation and I was not in any manner trying to imply otherwise. An interesting aside is how the Scribner Dialysis Product with includes factors for duration of treatment and frequency squared has a linear correlation to the stKt/V which measure urea kinetics on a weekly basis and is the only way to compare urea Kinetics among differing dialysis schedules. Dr.John Daugirdas kindly pointed this out to me from his own calculations of both the stKt/'V and the dialysis product from the same data sets.
http://ureakinetics.org/files/hdp_vs_stdktv.pdf
So noting that the stKt/V does have a component of treatment duration and frequency within its calculations which correlate to the dialysis product, I do find it of a limited but very useful measurement to compare to my incenter treatments.
The bottom line is that Northwest Kidney Center among others already uses higher dialysate dosages and higher spKt/V goals for their NxStage program above and beyond the standard NxStage dosage recommendations. I simply took their approach and maxed out what I could do in a single “short daily” dialysis session of around 4 hours and I did have significant subjective and objective clinical benefits. The low flow dialysate strategies have a very scant body of literature and no long term clinical studies on how well they work. For me, the low dose recommended starting dialysate dosage of 20L left me feeling completely terrible compared to my incenter regimen and I very seriously considered quitting NxStage and returning incenter. However, I am pleased that I was able to increase both the time and intensity of my treatments to improve upon my incenter treatments. Northwest Kidney Centers employs this same strategy with excellent results. For the specific instance of NxStage, only looking at the time element does not tell the entire story since it has such reduced solute clearances compared to incenter single day clearances. It is my opinion and others that this will be found clinically significant in future studies.
The other issues mentioned by Dr. Agar on frequency and duration of total weekly dialysis treatments I strongly advocated for myself and the intentions of my first post were not to contradict that aspect what-so-ever. It is my personal opinion that the NxStage low flow dialysate standard doses are too low by at least a factor of 50% or more. In my case, I did not gain clinical benefit from NxStage until I increased my clearances by a factor of 86% when I compared how I felt with incenter. It is my opinion that NxStage should increase its standard recommended dosages especially in people such as myself over 90 kgs in weight.
As far as Blood Flow Rates, I have been able to reduce mine to 370 ml/min which gives me an arterial presurre of 120-140 and a venous pressure of 140-155 which is significantly lower than my incenter readings. I strongly disagree with the trend in NxStage programs to crank up the BFR to get the time on dialysis as short as possible. I was able to keep my time on dialysis near 4 hours each session by increasing the FF beyond standard recommendations with the permission of my nephrologist. I am a strong advocate of longer, slower and gentler dialysis and practice that philosophy with my own treatments.
As far as nocturnal dialysis, it is not something that I have completely ruled out in the future, but at present it has been quite stretch for my wife to be able to feel comfortable without undo stress even doing dialysis at home at all. One of the most important aspects of home dialysis is how it impacts the care partner. My wife simply feels uncomfortable with the idea of strapping me to a machine and going to sleep. She would simply stay awake all night checking on me and I respect her level of comfort for what it is. She is a very helpful and competent care partner, but I am sure that many care partners feel out of their element just having these machines in our house. If I did not respect her level of comfort, I am quite sure that she would quickly burn out and I would not be able to continue at home. I readily understand this issue since I did surgeries in my medical training but I didn’t have the comfort level that would be required to make that a daily practice. My forte was the problem solving involved in internal medicine. Understanding our care partners strengths and weaknesses is a critical aspect of home dialysis and it has been my goal to mitigate the burdens of dialysis on my wife as much as possible. I cherish her sleep and comfort as much as my own. She is simply not a candidate for a nocturnal dialysis care partner at present.
I would much rather be able to discuss clinical findings of NxStage dialysate dosages published in the medical literature, but they simply do not exist. The clinical relationship between very low urea clearances and mortality is well established with conventional dialysis and is the key factor on the minimum goals of 1.2 by Medicare which showed a significant survival benefit over a spKt/V of 0.9 which was the prior minimum goal in the past. Without the clinical studies to define the optimal NxStage dosage, we are stuck with surrogate markers among which I did find the stKt/V useful for my own treatment parameters. Once again, Dr. John Daugirdas has shown the linear correlation between stKt/V and the dialysis product. I did not reflect that known relationship in my prior post which may have inadvertantly implied my support of urea kinetics over treatment duration and frequency, but that is not and has not been my position for quite some time.
I apologize for not making my position more readily clear in the prior post.
With the upmost kind reqard,
Peter Laird
Thank you for answering my question so thoroughly and so quickly. My husband will be home in two weeks and I plan to begin dialyzing six days a week for four hours to start with. NxStage will support at least 4 hours and that will give me nine more hours weekly than when I was in-center. When NxStage is approved for nocturnal I fully intend to go for it. I plan to start with a BFR of 350 and will see how it goes. Thanks again.
Sally
Dear Sally
Sounds very much the way to go … please let me know back at this site how it works out for you.
But - to recap once more …
Anything that allows you longer sessions and more frequent dialysis sessions and, as a result, a physiologically gentler dialysis will give you better, less symptomatic dialysis … and, the more often you can do of this - the better.
Longer, more frequent dialysis means you can afford to (and will benefit by) turning down the blood flow rate … and your fistula will love you for it
What this self-demonstration will then show is that longer, more frequent dialysis really ‘rocks’ by how you feel.
But, if you are dialysing through the day, you will soon recognise (and bemoan) the sheer number of hours being lopped out of your day to do what you now have shown yourself is needed to make you feel good again.
That, then, sucks big-time … too.
You will then likely start saying to yourself …
“Gee, I never thought I could feel so much better … but where has my day gone”?
and …
“Where is my life for living, now I feel well enough to live it?”
And, you will inevitably come up with one answer …
“I am dialysing during my available slabs of ‘to-do’ time … my daylight, doing, waking, active hours!”
Next step …
Its kind-a obvious … Switch dialysis to the down-time hours … to night-time, to the down-, sleeping-, inactive-time!
That will then complete the trifecta:
longer dialysis (GOAL ONE)
more frequent dialysis (GOAL TWO)
and finally, more liveable dialysis (GOAL THREE)
Some manage all three goals in one move … and I must say here that we encourage and train our patients to achieve all three-in-one … and almost all do.
Others find it easier to self-prove step 1, then progress to step 2, then realise the inevitability of step 3.
When your hubby gets back … discuss over a glass of good wine … and by then if you are doing longer hours and more frequent sessions, you won’t have the fluid restrictions you currently have and you won’t need to feel guilty about buying the bottle of good wine!! … discuss with him the possibility of nocturnal.
In my view, switching to nights is the 3rd but most inevitable consequence of the “good dialysis triad” - it does (if you’ll pardon the pun) follow on as inevitably night follows day.
Sleeping is an issue - I deal with this at my nocturnaldialysis.org website - and I see Peter has had some issues with this - though we have found most patients (and spouses or significant others) adjust easily … or reasonably so …
First and foremost - make all changes with and through and after the approval and blessing of your advisors … your nephrologist(s), your unit nurses, your technicians … your “team”. They must not only be IN the loop, they must BE the loop. This must always go without saying before applying any knowledge gained at any internet site, no matter how seemingly erudite and safe and sensible that advice may seem to you.
And … there are pitfalls!
So, don’t get cocky, blase or careless …
Longer and more frequent dialysis = longer and more frequent in-vessel needle dwell-time.
In-vessel needle dwell-time cannot be underestimated. While thankfully not a frequent problem in clinical practice, yet it is an ever present threat to the patient that should make every haemodialysis patient conscious that that needle brings risk - regardless of dialysis site (facility or home) or of membrane/needle contact time (short or long) or of sessional frequency/week.
That risk is NOT a leakage or bleeding risk (this is vanishingly rare) - though we DO still use and insist on leak detectors. We just do NOT see significant leaks or bleeds from well managed, well needled and well-cared-for native fistulae.
The risk is infection - and that infection is not always rampant and roaring! It can be as subtle as a change in the immediate exit site. And … there is some data now that suggests that needle dwell-time does increase the potential for infection. Commonsense tells you that it might.
So … if buttonholing - always use (1) BLUNT needles after tract creation (2) use impeccable reproducible scab removal and puncture-site antisepsis … never ever cut corners for time (3) we prefer paired buttons to allow site rotation and (3) if paired … rotate your buttons. (4) Seriously consider routine Mupirocin (see the work of our Canadian colleagues - Nesrallah, Chan, Pierratos) or MediHoney (my 'personal ’ preference - not shared by all) … and (5) ABOVE ALL … fixation, fixation, fixation … so that the needle just doesn’t/can’t/won’t move in the tract.
And, lastly, if the site looks angry, like its having a bit of a local ‘hissy-fit’ with any redness, tenderness or goey-ness … move away from it - give it a rest and let your team see it and know about it … don’t re-use an angry site.
All that sounds very dire and dangerous …but in practice, with good attention to detail and care, all should be just fine and almost always is … just … if you DO encounter these signs of access trouble … be alert to them.
As for Peter’s posts - I agree with all he says … and much of it is contained in the many talks I have been given on ‘better dialysis’ around the world since 2001/2 … though I am grateful +++ for his little golden snippet of information about the HDP and its inter-relationship with the spKt/V and I will … with reference to both John Daugirdas and Peter Laird as sources … include that ‘gem’ now in the sections of my talks which discuss the evolution of ‘better dialysis’ practices and where I reference Scrib’s and Dimitri O’s HDP.
Unlike Peter, though, I am not so number-driven or number-oriented … though, also unlike Peter, I do not have to contend with being on dialysis myself - and maybe that’s why discussions about actual litres and flows always seem a little less ‘real’ to me. However, I know enough about the NxStage to understand and agree with all the parameters he has given to you and, if these help you to place actuality on the bones of my generality … even better still.
I know that advice from a been-there, done-that source is always more helpful … so devour his pieces and his contributions - for they are what may help you, specifically, most … and more than my generalities.
I try to, specifically, to be general (is that possible? … or just a classic oxymoron!) … as there are many reader of these pages and I try to talk to all readers and beyond just ‘the questioner.’ him or herself.
Good Luck with all this, Sally. I hope some of it is useful to you.
Please feedback to this site in due course to let all of us know how you have got on, if you have made any changes, if so what those changes were, and what the outcomes of each or any change have been …
John Agar
http://www.nocturnaldialysis.org
Drs. Agar and Laird,
Thank you for your answers to my concerns. I shall take your replies to my nephrologist and see what I can do to increase my time on the NxStage and to slow my BFR. My whole reason for going on NxStage was to improve my quality of life and have been disappointed that I feel so much less well. I want to move on to nocturnal dialysis as soon as NxStage is approved for that purpose (I would do it sooner, but there is no clinic that will support it in town). I did do in-center nocturnal for about 6 months and felt much better, but that shift was closed. Five hours in-center, 3 X weekly was the most I could persuade any clinic to give me and it worked well - I hoped NxStage would allow me to feel even better, but it hasn’t happened. I am taking a short trip next weekend and will have to dialyze in-center and I am actually looking forward to it!
Thank you,
Sally
Well, several things have happened lately and I need some advice. First, I met the nephrologist who is temporarily in charge of writing my orders and he scares me. When I said I wanted to do more dialysis he asked me why. I told him I felt that more is better and he seemed surprised and said that isn’t really true! He said there have been several studies that don’t prove that. Then he began talking about “adequate” and that drives me crazy! I told him I wanted “optimal,” not “adequate” and asked why dialysis outcomes are better in Europe than in the United States. He said, “Oh, are they?” Anyway, I don’t think he is going to be supportive! My real Neph will, but he doesn’t yet have privileges at this clinic.
Secondly, my husband is home from Greece and now serving as my care partner. I had my first four hour treatment on NxStage on Wednesday and it went along just fine. I wasn’t given much help from my nurse at the clinic on how to lengthen my treatments and things did not go well last night. I was using a BFR of 350 and treatment was supposed to take 4.5 hours, but at hour 3.5 I got an alarm that my venous pressure was nearing 800. I called tech support and they advised that I was probably having clotting issues and should end treatment without rinseback. So, I did. Now, I am wondering if I should be using more heparin for longer treatments? I also need to know how to program my treatments so fluid removal is steady throughout treatment and not all taking place in the first 2.5 hours. I have been told to divide the amount of fluid I want to take off by 2, but now that I am trying longer treatments shouldn’t I divide it by 4? As I said I am using a BFR of 350, a needle gauge of 15, and giving 2500 heparin. I’m taking today off, but want to dialyze again on Sunday. Thanks for any help.
AlaskaGirl, the NxStage machine is not available in Australia, yet, where Dr. Agar is. So this question might be better asked of the NxStage users, who have likely been through it. I’m so sorry to hear about your new nephrologist! Not all nephrologists are dialysis specialists (Dr. Agar is). So, it’s unfortunate that you’ve found one who isn’t. I hope you can avoid him as much as possible.
Dori, I know Dr. Agar doesn’t know a lot about NxStage, but he has been helping me in my quest for more and better dialysis and I am hoping to catch the attention of Dr. Laird, who although is not a nephrologist is a doctor and a NxStage dialyzor. The two of them have assisted me so much in the past month in deciding what I want out of dialysis. I agree that the new nephrologist is to be avoided - at our first meeting, once I determined what his mindset was, I just shut up and let him talk - in one ear and out the other!
[QUOTE=Alaskagirl;19922]Well, several things have happened lately and I need some advice. First, I met the nephrologist who is temporarily in charge of writing my orders and he scares me. When I said I wanted to do more dialysis he asked me why. I told him I felt that more is better and he seemed surprised and said that isn’t really true! He said there have been several studies that don’t prove that. Then he began talking about “adequate” and that drives me crazy! I told him I wanted “optimal,” not “adequate” and asked why dialysis outcomes are better in Europe than in the United States. He said, “Oh, are they?” Anyway, I don’t think he is going to be supportive! My real Neph will, but he doesn’t yet have privileges at this clinic.
Secondly, my husband is home from Greece and now serving as my care partner. I had my first four hour treatment on NxStage on Wednesday and it went along just fine. I wasn’t given much help from my nurse at the clinic on how to lengthen my treatments and things did not go well last night. I was using a BFR of 350 and treatment was supposed to take 4.5 hours, but at hour 3.5 I got an alarm that my venous pressure was nearing 800. I called tech support and they advised that I was probably having clotting issues and should end treatment without rinseback. So, I did. Now, I am wondering if I should be using more heparin for longer treatments? I also need to know how to program my treatments so fluid removal is steady throughout treatment and not all taking place in the first 2.5 hours. I have been told to divide the amount of fluid I want to take off by 2, but now that I am trying longer treatments shouldn’t I divide it by 4? As I said I am using a BFR of 350, a needle gauge of 15, and giving 2500 heparin. I’m taking today off, but want to dialyze again on Sunday. Thanks for any help.[/QUOTE]
Dear Alaskagirl,
Dr. Agar has spoken and written extensively on this very issue and I have personally learned much from his Geelong website. I believe that he has much to say about your battle with finding optimal dialysis. The issue of NxStage is predicated not only on the amount of time and frequency but also the dosage of dialysate from my own experience with this machine. 20L just wasnt’ anywhere near enough, nor was 30L. Unfortunately, most American nephrologists maximize their own profits before they will maximize their patients dialysis modalities. Trying to read his mind from the statement that more is not better, I believe he is referring to the HEMO study which compared high flux and low flux artificial kidneys at high and low Kt/V. There was no significant outcomes in the study groups leading many to make the statement that your nephrologist made to you.
However, the HEMO study fell short in part based on a comparison of the weekly Kt/V which off the top of my head I believe it was only 16% difference between the high and low goal groups. Many believe that this is not enough of a difference to show up in secondary and primary endpoints. Once again, Dr. Agar speaks and writes about this issue extensively and I believe he can give you much more detailed information on this specific issue than I can.
There is one RCT published to date on nocturnal hemodialysis outcomes by Manns, et al published in JAMA in 2007:
Effect of Frequent Nocturnal Hemodialysis vs Conventional Hemodialysis on Left Ventricular Mass and Quality of Life
A Randomized Controlled Trial
Bruce F. Culleton, MD, MSc; Michael Walsh, MD; Scott W. Klarenbach, MD, MSc; Garth Mortis, MD; Narine Scott-Douglas, MD, PhD; Robert R. Quinn, MD; Marcello Tonelli, MD, SM; Sarah Donnelly, MD; Matthias G. Friedrich, MD; Andreas Kumar, MD; Houman Mahallati, MD; Brenda R. Hemmelgarn, MD, PhD; Braden J. Manns, MD, MSc
JAMA.2007;298:1291-1299.
ABSTRACT


Context Morbidity and mortality rates in hemodialysis patients remain excessive. Alterations in the delivery of dialysis may lead to improved patient outcomes.
Objective* To compare the effects of frequent nocturnal hemodialysis vs conventional hemodialysis on change in left ventricular mass and health-related quality of life over 6 months.
Design, Setting, and Participants* A 2-group, parallel, randomized controlled trial conducted at 2 Canadian university centers between August 2004 and December 2006. A total of 52 patients undergoing hemodialysis were recruited.
Intervention* Participants were randomly assigned in a 1:1 ratio to receive nocturnal hemodialysis 6 times weekly or conventional hemodialysis 3 times weekly.
Main Outcome Measures* The primary outcome was change in left ventricular mass, as measured by cardiovascular magnetic resonance imaging. The secondary outcomes were patient-reported quality of life, blood pressure, mineral metabolism, and use of medications.
Results* Frequent nocturnal hemodialysis significantly improved the primary outcome (mean left ventricular mass difference between groups, 15.3 g, 95% confidence interval [CI], 1.0 to 29.6 g; P*=.04). Frequent nocturnal hemodialysis did not significantly improve quality of life (difference of change in EuroQol 5-D index from baseline, 0.05; 95% CI, –0.07 to 0.17; P=.43). However, frequent nocturnal hemodialysis was associated with clinically and statistically significant improvements in selected kidney-specific domains of quality of life (P=.01 for effects of kidney disease and P=.02 for burden of kidney disease). Frequent nocturnal hemodialysis was also associated with improvements in systolic blood pressure (P=.01 after adjustment) and mineral metabolism, including a reduction in or discontinuation of antihypertensive medications (16/26 patients in the nocturnal hemodialysis group vs 3/25 patients in the conventional hemodialysis group; P<.001) and oral phosphate binders (19/26 patients in the nocturnal hemodialysis group vs 3/25 patients in the conventional dialysis group; P<.001). No benefit in anemia management was seen with nocturnal hemodialysis.
Conclusion This preliminary study revealed that, compared with conventional hemodialysis (3 times weekly), frequent nocturnal hemodialysis improved left ventricular mass, reduced the need for blood pressure medications, improved some measures of mineral metabolism, and improved selected measures of quality of life.
Trial Registration* isrctn.org Identifier: ISRCTN25858715
http://jama.ama-assn.org/cgi/content/full/298/11/1291
In such, with the myriad of observational studies showing improved survival with nocturnal and short daily hemodialysis and with this one small RCT, I personally believe that your nephrologist is in error when he tells you a higher dose will not benefit you. That is just my own opinion. However, only nephrologists can prescribe dialysis, so if you do not have the option of another nephrologist more friendly to the concepts of daily dialysis, then you will have to learn to play their game better than they play it. I have been doing that now for nearly 4 years. Dr. Rasgon has been my doctor for the last year and he says I always keep him on his toes when I come for my visits. Dr. Rasgon publishes widely on nephrology topics and specifically the NxStage machine. He readily allowed me to increase my dosage with his permission recognizing that more dialysis is better. Why some nephrologists accept this very simple idea and others don’t is puzzling to me.
You may truly want to get a copy of all of your prior weekly Kt/V values on 15 hours of incenter dialysis and compare that to your new NxStage values. I suspect that you did better incenter as far as your weekly clearance, but you will have to confirm that with the actual numbers. If they are lower on NxStage, then you have an objective value to make an objective complaint that will back up your subjective symptoms. Even with 40 L, my spKt/V is only 0.9 when it was 1.4 incenter for a 4 hour session. I feel better than incenter at this time with a higher weekly Kt/V since I dialyze over 20 hours a week, but I wish we had access to a portable machine that got equal to incenter machines. If that is ever a reality, I believe we will have arrived, that is with a portable machine and ultrapure dialysate that is.
As far as the heparin issue, you will need to speak to your nephrologist, not just the NxStage folks. In the hospital, most average patients require about 1000 units of heparin an hour to stay within target range of anticoagulation. I have been using 4000 units for my 4 hour NxStage treatments but I recently upped it to a 5000 unit bolus at the start of treatment which holds me well for the entire 4 hour treatment. Everyone is different but if you are having problems clotting, it is your doctor that needs to advise you on how much to increase or perhaps look at other factors as well. It helps to have an MD after your name to be able to make your own adjustments as you go along. I can’t advise people without an MD to do the same as I do since I have over 20 years of experience with heparin treatments in my own patients. Call your doctor and discuss the issue with him directly. Unfortunately, by the medical-legal rules, it is very difficult to give anything but information over the internet.
I am trying to put all the pieces together in order to understand what I will need for longer treatments. Its not that I don’t trust my clinic, but I need to know what to look for. So, more heparin is probably in order - they have me trying 25 liters of dialysate, but I want to try 30. I think my regular nephrologist will support me in whatever I want to do. How do you program your treatments for four hours? Whatever I put in following my clinic’s instructions all the fluid is pulled off in the first 2.5 hours and after that the cycler just continues until the dialysate is used. I would like to pull evenly all throughout the time. I will call Monday for an appointment with my regular nephrologist and see if I can’t get him to speak to the nephrologist at the clinic and, also, speed up his application for credentials at my clinic. Thanks for your help.
Two core but different issues
Dear Alaskagirl … you raise and ask good key questions about two core issues … but each is very different and very distinct, I think, one from the other:
The two are:
(1) the NxStage and its settings and techniques and the optimisation of its prescriptions and volumes of dialysate
(2) the factors (and the fallacies many nephrologists have been trained to accept) tht govern exactly what constitutes and is good dialysis?
- NxStage.
I gained some passing and very limited my-hands-on experience with the pre-System One NxStage in 2006 (a) when I was in Seattle on sabbatical and the NxStage was then just being introduced into their home program as the Aksys was being phased out - and I learned a little of its capabilities with some hands-on experience and (b) later in the same sabbatical down in Palo Alto/Mountain View Ca. with my long term friend and compatriot, John Moran, where a significant but also-pre-System One) NxStage program was in full swing at Satellite Health.
However, despite this limited experience, I do not have a strong feel for the NxStage from extensive personal management experience and I am more than happy to defer to others who do.
That is not to say I do not understand the machine - I think I do, passing well - nor should I ignore the enormous debt that home dialysis owes (and will always owe) this nifty, home-friendly machine and its makers.
However, I would not do it (the machine) or them (the NxStage team) justice were I to try to create a ‘techie’ or ‘learned’ answer without more practical “I am used to this machine and I know it inside out” experience.
I just dont have that. I wish I did!
As I spelt out in my very first posting at the start of this experiment in “Q&A” … Alaskagirl, please read the ‘STICKY’ note “Ground Rules for this Q&A site: to be read by all users” at the start of this website page … I am not the person to answer detailed Q’s about NxStage.
NxStage is not available in Australia and until it is and I gain that experience … others are better to answer you about it.
There is a NxStage Users Group where practical advice may be had … or you may be already happy with Peter Laird’s response, a response I endorse and with which I fully agree.
In brief … you are, in my humble view, getting insufficient dialysis. Your exchange volume is low, your hours are short, your Kt/V piddlingly low (Peter uses Kt/V in his answer to you and seems to like it (God knows why) but, oh, how I utterly abhor that concept. Kt/V is, to me, everything that is wrong about current dialysis … and I am happy, another time, to try to explain why).
It seems you are having differing advice (or are detecting differing opinions) from your advisors.
This is not uncommon … in all walks of life … but, in the end, I think that generally we tend to and do choose as our advisors those with whom we are personally in comfortable and ‘in sync’. … whether that be in health, finance, puchasing - whatever!
Though I may get myself into hot water by expressing the following thoughts and opinion, I think there is evidence to say … and it is broadly true … that dialysis training of trainee nephrologists is poor in many of the training centres in the US. This is neither meant as, not would I hope it will be taken as, US-bashing … I do not mean it as such … but, dialysis is poorly taught, preferenced and prioritized in many US training programs and many training programs do not have home dialysis as part of their training experience nor of their core training curriculum. Indeed, dialysi in general, is under-valued in many training programs where dialysis is seen as ‘beneath’ the nephrologists and as ‘a nursing practice’ of little interest to ‘the doctor’.
Bob Lockridge (Lynchburg, W.Va) has a lot to say on this and is more eloquent then I. Perhaps Dori might excerpt this section, send it to him and ask for comment.
It means that many nephrologists end up core-caring for dialysis patients yet have little experience nor understanding of dialysis beyond the twin black beasts of dialysis …
(1) Kt/V … a flawed and grave-turning concept
and …
(2) fatally flawed RCT studies like the NCDS and HEMO studies … studies done by good people and in good faith but, in retrospect, poorly designed, under-powered and badly group-split. A myriad of papers have appeared to refute both … but they were so awaited and anticipated in their times, then, as a consequence, so influential when their results did first appear, that all the ‘hey, but’s ….’ in the world don’t seem to be able to drag us back from the mis-directions they sent us in.
These and other ‘mis-concepts’ (my view) sadly remain as ‘truth’ (still the majority view) for a huge body of nephrologists whose interests, fairly, lie elsewhere and for whom the dialysis patient is a neccesary evil as a source of income, but a nuisance all the same.
This leads me to the second topic of my title for this post … the factors that govern (and the fallacies so many nephrologists have been brought up with) exactly what constitutes and is good dialysis?
This second topic is right in my sights!
re (1) … NxStage … my experience (or lack of it) places me at a disadvantage
re (2) … understanding, progressing towards, teaching (or imploring) others to understand and ‘re-inventing’ good dialysis … this is my passion!
You (and others) deserve a clear, layman-terms answer on this … one that I shall prepare and float as a new post in a few days when done.
In brief, there is better dialysis. It is possible for all. It is to access better dialysis that all home patients go home.
To my reading, you have gone home … YES! … more strength to you … but it appears that you are NOT yet getting what you took the trouble to go home to get.
If so, that’s sad.
Good is longer, Good is more often. Good is more gentle. Good is more.
And all the data says so … its just that perhaps your nephrologist, who isnt aware of this, was not trained to know. His or her interests may lie elsewhere … in places of nephrology where my own lack of knowledge may make me the luddite and me the in-informed.
So … a ‘Good Dialysis Discussion’ doc. … coming soon.
Meantime, this IS all discussed already, in lay terms, at my website http://www.nocturnaldialysis.org
John Agar
http://www.nocturnaldialysis.org
[QUOTE=John Agar;19935]Two core but different issues
Dear Alaskagirl … you raise and ask good key questions about two core issues … but each is very different and very distinct, I think, one from the other:
The two are:
(1) the NxStage and its settings and techniques and the optimisation of its prescriptions and volumes of dialysate
(2) the factors (and the fallacies many nephrologists have been trained to accept) tht govern exactly what constitutes and is good dialysis?
- NxStage.
I gained some passing and very limited my-hands-on experience with the pre-System One NxStage in 2006 (a) when I was in Seattle on sabbatical and the NxStage was then just being introduced into their home program as the Aksys was being phased out - and I learned a little of its capabilities with some hands-on experience and (b) later in the same sabbatical down in Palo Alto/Mountain View Ca. with my long term friend and compatriot, John Moran, where a significant but also-pre-System One) NxStage program was in full swing at Satellite Health.
However, despite this limited experience, I do not have a strong feel for the NxStage from extensive personal management experience and I am more than happy to defer to others who do.
That is not to say I do not understand the machine - I think I do, passing well - nor should I ignore the enormous debt that home dialysis owes (and will always owe) this nifty, home-friendly machine and its makers.
However, I would not do it (the machine) or them (the NxStage team) justice were I to try to create a ‘techie’ or ‘learned’ answer without more practical “I am used to this machine and I know it inside out” experience.
I just dont have that. I wish I did!
As I spelt out in my very first posting at the start of this experiment in “Q&A” … Alaskagirl, please read the ‘STICKY’ note “Ground Rules for this Q&A site: to be read by all users” at the start of this website page … I am not the person to answer detailed Q’s about NxStage.
NxStage is not available in Australia and until it is and I gain that experience … others are better to answer you about it.
There is a NxStage Users Group where practical advice may be had … or you may be already happy with Peter Laird’s response, a response I endorse and with which I fully agree.
In brief … you are, in my humble view, getting insufficient dialysis. Your exchange volume is low, your hours are short, your Kt/V piddlingly low (Peter uses Kt/V in his answer to you and seems to like it (God knows why) but, oh, how I utterly abhor that concept. Kt/V is, to me, everything that is wrong about current dialysis … and I am happy, another time, to try to explain why).
It seems you are having differing advice (or are detecting differing opinions) from your advisors.
This is not uncommon … in all walks of life … but, in the end, I think that generally we tend to and do choose as our advisors those with whom we are personally in comfortable and ‘in sync’. … whether that be in health, finance, puchasing - whatever!
Though I may get myself into hot water by expressing the following thoughts and opinion, I think there is evidence to say … and it is broadly true … that dialysis training of trainee nephrologists is poor in many of the training centres in the US. This is neither meant as, not would I hope it will be taken as, US-bashing … I do not mean it as such … but, dialysis is poorly taught, preferenced and prioritized in many US training programs and many training programs do not have home dialysis as part of their training experience nor of their core training curriculum. Indeed, dialysi in general, is under-valued in many training programs where dialysis is seen as ‘beneath’ the nephrologists and as ‘a nursing practice’ of little interest to ‘the doctor’.
Bob Lockridge (Lynchburg, W.Va) has a lot to say on this and is more eloquent then I. Perhaps Dori might excerpt this section, send it to him and ask for comment.
It means that many nephrologists end up core-caring for dialysis patients yet have little experience nor understanding of dialysis beyond the twin black beasts of dialysis …
(1) Kt/V … a flawed and grave-turning concept
and …
(2) fatally flawed RCT studies like the NCDS and HEMO studies … studies done by good people and in good faith but, in retrospect, poorly designed, under-powered and badly group-split. A myriad of papers have appeared to refute both … but so awaited, so influential, that all the ‘hey, but’s …’ in the world cant drag us back from the mis-directions they sent us in.
These and other ‘mis-concepts’ sadly remain as ‘truth’ for a huge body of nephrologists whose interests, fairly, lie elsewhere and for whom the dialysis patient is a neccesary evil as a source of income, but a nuisance all the same.
This leads me to the second topic of my title for this post … the factors that govern (and the fallacies so many nephrologists have been brought up with) exactly what constitutes and is good dialysis?
This second topic is right in my sights!
re (1) … NxStage … my experience (or lack of it) places me at a disadvantage
re (2) … understanding, progressing towards, teaching (or imploring) others to understand and ‘re-inventing’ good dialysis … this is my passion!
You (and others) deserve a clear, layman-terms answer on this … one that I shall prepare and float as a new post in a few days when done.
In brief, there is better dialysis. It is possible for all. It is to access better dialysis that all home patients go home.
To my reading, you have gone home … YES! … more strength to you … but it appears that you are NOT yet getting what you took the troube to go home to get.
If so, that’s sad.
Good is longer, Good is more often. Good is more gentle. Good is more.
And all the data says so … its just that perhaps your nephrologist, who isnt aware of this, was not trained to know. His or her interests may lie elsewhere … in places of nephrology where my own lack of knowledge may make me the luddite and me the in-informed.
So … a ‘Good Dialysis Discussion’ doc. … coming soon.
Meantime, this IS all discussed already, in lay terms, at my website http://www.nocturnaldialysis.org
John Agar
http://www.nocturnaldialysis.org[/QUOTE]
To answer John briefly about the Kt/V issue. It is not at all that I like the Kt/V, it is that the majority of nephrologists don’t speak the language of daily dialysis advocates and there are times that I must use the flawed Kt/V to communicate to them when I am unable to reach them any other way. There is a simple fact that we deal with, only nephrologists can prescribe dialysis and in such, unless you can find a nephrologist sympathetic to the simple concept that more is better, then the only manner in which to speak to them that will influence them is with terms that they except. It appears that Alaskagirl is in that situation. It appears likely that her weekly Kt/V was likely higher incenter than what she is getting on the current dosage of NxStage. In such, if that is proven, she then has an “objective” measure that she use as leverage with her nephrologist. So, not that I like the Kt/V at all and I have written at DSEN on how it has been used to accomplish adequate numbers but suboptimal outcomes due to under treatment. So until the entire American nephrology community accepts the idea of optimal dialysis, then we are stuck using their language. I believe in Alaskagirls current situation, it may be a tool that will be to her advantage in increasing her NxStage therapy. Certainly her current nephrologist has rejected her subjective feeling of under treatment to date.
Dear Alaskagirl,
The heparin issue is one that is fairly simple to manage for those that have done so for quite some time. There are actually mathematical formulas on how to do that in the hospital and that type of thinking in my opinion translates fairly easily to the dialysis setting even though we do not base therapy on lab numbers. I would recommend that you have your nursing staff and doctor teach you how to recognize clotting during treatment as well as to be able to examine your artificial kidney after every treatment. If it is clotting, you will see that in the kidney itself. If is fairly easy to recognize once you know what to look for. If you are going to be dialyzing at home, in my opinion, that is something all home patients should know how to find during and after treatment. Once again, since I cannot give you anything but information, you truly need to speak directly to your doctor about this and soon if there is any issue of too little heparin with your current treatments. If you can’t get in touch with the doctor directly, then ask the nurse to adjust your heparin level under the direction of the doctor. It is may also be another issue altogether you are dealing with, so you have no choice but to communicate directly to your team what is happening.
As far as the Utrafiltration issue, I believe you may be confusing dialysis or cleansing the blood which occurs throughout the entire session and ultrafiltration or pulling the excess fluid off of your blood. From your question, I wonder if you have been taught the difference between the two. As long as you are not having nausea, drops in blood pressure, lightheadedness or other signs of volume depletion, it is likely that the calculations you have been taught by NxStage are probably fine. Once again, discuss this with your team, but to lengthen the time of ultrafiltration, you can do that with a change in one factor that may be set in your machine already but is easily changed. They should be able to show you how to make a different calculation.
Keep working with your team and keep learning about all of these issues so that you can explain your requests well and understand the technical aspects of dialysis as well. With some direct study, you should be able to learn the language of dialysis even the technical aspects that we deal with in home dialysis. Since patients must follow the prescription of their nephrologist ( even me with my MD degree) the only tool we have to accomplish some aspects of optimal dialysis strategies is at times to educate our nephrologist about them. It is unlikely that most will learn of these practices in an average nephrology fellowship. I don’t believe we are to that level yet, but hopefully we will be soon.
The take home message is we must all work and improve our relationships with our nephrology team, they are in control even when we are at home. We just can’t get around that simple fact. So don’t fight that fact, learn how to work within that framework to your best ability. I believe that takes knowledge of your dialysis system as well or better than your own team understands it. To change peoples mind, you will need hard facts and evidence which in my opinion does exist. Once again, I have learned much from Dr. Agar’s Geelong websight.
Peter … I am sorry … I put my response loosely and took your name in vain in my answer unfairly.
I actually do realise (and have read your comments on Kt/V at DSEN) that you dislike the Kt/V concept as much as I do.
It is just that we work within differing dialysis milieu: here, we don’t give a toss for Kt/V: there, it seems all-pervading and even drives dialysis from a funding and requirement aspect.
So, yes, I can understand that in the US, again sadly, one has to talk ‘Kt/V’ to even get in the door! So, again, yes … I think you are right … you must talk the language, walk the walk … but please, don’t believe the mantra - “dialysis to a notional Kt/V then off with the switch” - it just isn’t right.
As for the heparin issue. I agree. But … one word of caution - a high venous pressure can mean other things too … stenosis being an important one. Talk this over with your team. Ensure all is OK with your AVF too.
John Agar
http://www.nocturnaldialysis.org
Well, I’ve started longer treatments - they upped my heparin to 5000 and I’m getting treatments that take 4.5 hours at a time - I am starting to feel like myself again! It does feel as though dialysis has taken over my life - I can hardly wait for nocturnal. One question I do have - they put me on 25 liters of dialysate, but it always runs out about 40 minutes before treatment is done - should I raise the amount to 30? I seem to be pretty much on my own in deciding what to do - nobody at my clinic seems to really know and they sort of go along with whatever I suggest. I don’t really trust them to know what the results will be with each change and I don’t really want to get a bad result to find out they don’t know anymore than I do!