Good dialysis

Discussions for Patients, Family, and Friends HD For Patients
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Part 2

Bill, that’s not an exhaustive list but it’s a start. You asked about trade offs … maybe another day when I have given this more thought. You also asked me what machine characteristic might make the life of a nephrologist easier … um … in a word? … simplicity. Dialysis doesn’t have to be complex, hard or clumsy … and it is, for most, all of these. The machine, though, isn’t the big problem … it is a problem but not like access is … and beyond MediHoney, I have no answers to that problem beyond anyone else. To me, though, the biggest barrier to good dialysis (and to me that’s home dialysis wherever possible) lies with colleague nurses and nephrologists who have no training in, no understanding of and no feeling for what should be the best dialysis option going around!

So, to answer your question, without prejudice, it would make MY life easier if my healthcare colleagues would understand and embrace home care … it would certainly lower my frequent flyer miles and let me spend more time with my family and at Geelong Football Club games.

Dori – I think got it right on the button when she talked about symptoms and ‘feeling good after dialysis’ Dialysis-related symptoms are largely the short term effects of rapid changes in volume while the long term effects of poor toxin clearance produce far distant but not-so-immediately-obvious problems. Sadly, so little has been done to produce compelling comparisons between the various ‘modalities’ of dialysis … and though we have done much work here, sadly (again) it is published in the Asia-Pacific journals, which, ii seems, few over your side of the Big Pond read.

Rich spoke of liberation by NxStage … but I’d ask, liberated from what? Rich, were you previously in facility care? If so, was the liberation the home or the machine? If you were at home on another machine, beyond the ability to travel (even though that is with confessed difficulties) how has it done so? I’d be really keen to hear – not that I doubt you – its just many who are home suitable may not have the chance, as you do, to reach a more serene dialysis location.

Jane – I think I have to share your views about the machine that gave the most/best dialysis per minute of any machine. Sadly, it was both before its time and launched in a home-unsupportive milieu (as the US was then and still is to a large extent). Here, where home HD is 15% of dialysis and always has been, I believe we might have made it work.

Pat – I have found me another nocturnal devotee. More strength to you. But if you could get a machine that did overnight dialysis as well as daytime and supported higher flows and less cartage, I suspect you would. Till then, I am happy you have your NxStage and are so pleased with it.

Finally Bill … I do have dream … a machine to move, independent of water or drain, requiring only power (and even one day portable power at that – battery or solar), room to room, patio or garden, home or beach house or cottage (for my Canadian friends), short daily (ie: waking-hour) during TV or on a warm summers night outside then, move to the bedside the next night for a long, slow, gentle, phosphate and middle molecule-removing session … mixing and matching, 3-4 x 2.5 hr SDHD’s and 2 x 8-9 hr long overnight HD’s (= 25+ hrs) this week alternating with 2-3 x 2.5 hr SDHD’s and 3 x 8-9hr NHHD’s (= 30-35hrs) the next … a ‘hybrid dialysis’ program to fit schedule … the best of both solute and volume removal. I think it would work … are you game?

I can see myself getting trapped in this – and I mustn’t. I can also see myself being seen to ‘give advice’ and I mustn’t. But lurk I will continue to do.

nocturnaldialysis

22

Night Doc and a big thanks for dropping by. Do keep up the “lurking” though, won’t you? It’s nice to know you are out there.
Cheers

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[QUOTE=nocturnaldialysis;14408]In the US, as I understand it, conventional dialysis runs at blood flow rates >400, dialysate flow rates +/- 600 for a mean time of ~211 minutes only 3 times weekly for patients with a mean body mass (and here I apologise to the smaller readers) as large as any in the world. It is still what I would call ‘bazooka’ dialysis … fast, vicious and insufficient. I don’t care about a target Kt/V … all Kt/V did (and it WAS useful) is to set a minimum – but minimum isn’t the same as good.

So what is good dialysis? Reach a Kt/V of 1.3 and say ‘take me off now – I have reached target – and let me go home’? I cannot subscribe to that. Never will. Can’t.[/QUOTE]
Dr. Agar knows that I agree with him on all points–after all, he’s one of my HD gurus. :smiley: This is a key, key point: Kt/V is a floor, not a ceiling.. I’ve heard nephrologists whom I have tremendous respect for say things like, “Well, 93% of U.S. patients reach the Kt/V targets, so we don’t need to think about adequacy any more.” In one sense, this is true–we shouldn’t be thinking about adequacy–we should be figuring out how to define optimal in a measurable, reproducible way. But that’s not what they meant. They meant, “we’ve solved adequacy, just about everyone is getting it now, so let’s move on to something else, like bone disease.”

Kt/V should never be described as a “target,” which is done even in the USRDS reports. It’s not a target, it’s a minimum dose. If you get less than the 1.3 the KDOQI Guidelines put forth, you need more dialysis–but the converse isn’t true: if you get 1.6 or 2.0, that doesn’t mean you need less, or even that you have optimal dialysis. It actually doesn’t mean much of anything at all, because what difference does it make how much urea (a non-toxic molecule) is removed anyway? Urea was chosen as a “surrogate” for other toxins that are harder to measure–or were harder to measure in the 1980s when Kt/V was thought up. But we can measure those others now, and it turns out that urea is not a good surrogate after all. It doesn’t represent the removal of other toxins. It doesn’t even behave like any other molecule.

I’ve heard of a number of patients over the years who were told, “your numbers are good, so we’re going to reduce your dialysis time.” They’re happy! They feel like the got the gold star–and the big bonus of less time on the machine, woohoo! <Sigh>

Kt/V serves a purpose at the bottom of the dialysis dose rung (what the word “adequacy” was supposed to mean. But we have a lot of work yet to do to define “Good” dialysis.

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Thanks for the posts Dr.Agar. Thissounds like it is closer to what you’d like - would like to see how they plan to access the blood.

Renal Solutions to launch revolutionary dialysis technology; hiring 15

                                       [IMG]http://www.popcitymedia.com/galleries/Default/PGH%20Innovates/Issue%2075/allient_300.jpg[/IMG]  At [Renal Solutions](http://www.renalsolutionsinc.com/), smaller is infinitely better.

The Cranberry Township provider of products and services to treat chronic and acute renal failure will place a revolutionary new technology on the market this October that will vastly improve the quality of life for kidney dialysis patients.
Renal Solutions first commercial product is the Allient System, a cabinet-sized unit that, unlike traditional dialysis units that use hundreds of gallons of water, uses a fraction of that amount to recirculate through the system.
“It’s completely different from any other system on the market,” says Peter DeComo, founder and CEO. “All systems need to be tethered to a water source and drained. With our system, we only use 1 ½ gallons of drinkable tap water and the unit is self-contained and transportable throughout the home.”
Renal Solutions is also actively pursuing research and development on the world’s first small, wearable renal replacement device. The company announced this month that it has contracted with Innovative BioTherapies Inc., University of Michigan, to develop a device worn on a waist belt that will replace the native kidney. The technology is about five years away, DeComo adds.
“The object is to allow patients to self administer their dialysis at home rather than having their entire life revolve around going to the clinic for life-sustaining treatment,” DeComo adds. The process improves clinical outcomes and patients feel better because they receive dialysis more frequently for longer periods of time.
DeComo, a University of Pittsburghgraduate and former respiratory therapist at UPMC, founded the company in 2003; it has grown to 40 employees. Renal plans to add 15 more professional staff in the next year.
Writer: Deb Smit
Source: Peter DeComo, Renal Solutions

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NxStage was originally designed for CRRT - used on ICU patients that were hemodynamically unstable and needed fluid removal - ie post op open hearts - that could not sustain acute hemodialysis treatments because they couldn’t tolerate higher Qb, Solute removal is not the strength of NxStage. For fluid removal it is fine. I personally think the NxStage is overrated for long term solute removal - there is no data to support clearances - none on the NxStage website either. I think the Aussie way of hemodialysis is the way to go - slow long nocturnal therapy. It takes a pretty dedicated patient to set up a machine 5 times a week, mix batches of dialysate 2-3 times a week, and cannulate themselves three times a week as well. It is a pretty hard sell to dialyze for 2 - 4 hours. I really haven’t heard of adequate KT/v’s being achieved on NxStsge. There is no data to support it. And the NxStage was not made for good solute removal - middle or large molecules or, as stated, phosphorus removal. Adequate KT/V - whatever that is - is a floor, not a ceiling - very well said. I like the Fresenius K@Home - use can dialyze as long as you want with a Qd of 600cc.min, a decent Qb, and a high flux polysulfone membrane dialyzer; you don’t have to mix biarb, and the portable R/O’s can sustain longer therapies. And I am unsure NxStage can meet AAMI water standards as well.

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[QUOTE=Bill Peckham;14419]Thanks for the posts Dr.Agar. Thissounds like it is closer to what you’d like - would like to see how they plan to access the blood.

[B]Renal Solutions to launch revolutionary dialysis technology[/QUOTE]

Bill, but of course Dr. Agar would think the Allient is closer to what he’d like. After all he is on the Renal Solutions Medical Advisory Board, and he even stated in the first post of the thread that he had a “conflict of interests”.

I don’t know much about Dr. Agar as others on the board apparently do, and would never question the authority from which he speaks. From what I understand he is a renowned authority on the subject. Yet, the timing of his initial post, and unmasking from the status of being a “lurker” on the subject of the negatives of NxStage can be suspect considering the timing vid-a-vis the upcoming introduction of the Allient system.

I think what we need at this point is a direct response from NxStage.

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I prefer to focus on the message - in general I think it is a mistake to ascribe motivations to people but since I have met Dr. Agar I feel I know his motivations to be optimal dialyzor health through optimal renal replacement. I think his message was that daily nocturnal is the gold standard but he recognizes the commitment daily nocturnal (and a standard machine) requires hence his interest in a mixed schedule over the course of a week. I have concluded that a daily mix of nocturnal and short dialysis would provide outcomes rivaling daily nocturnal and it would be somewhat less of a burden to follow a mixed regime. So Dr. Agar and I are in agreement, I would only add that I would like to feel the impact of a mixed schedule using the System One and I think I will have a chance soon.

As far as Renal Solutions’ machine: clearly the biggest problem I have with the Allient is that it is not available to me so it is a moot point. Bottom line as I have said numerous times in numerous ways I would like to feel better for all the time I put into dialyzing myself. I guess it is hard to talk about the limitations of low dialysate flows without sounding like one is putting down the System One but it is what it is and it is available (at least to us Yanks).

It’ll be interesting to look back on these discussions in a few years - what will the perspective granted by time afford? I do wish NxStage business success but more than that I wish all of us renal replacement success. I want more - I feel as a customer it is my right to be demanding and never satisfied - and I believe Dr. Agar wants more for us (and Aussie dialyzors too); to understand what we want we must understand what we are getting.

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Hi Rich
I think you need to have a good read of the prof’s website http://www.nocturnaldialysis.org/ to fully understand where his passions lie.

He is without a doubt the most strongly committed, driven health professional I have had the pleasure of meeting. We need more like him to keep pushing the envelope. I understand where you are coming from but maybe he is just adding some balance. This has been a very healthy and hopeful discussion.

Cheers

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[quote=beachy;14433]Hi Rich
I think you need to have a good read of the prof’s website http://www.nocturnaldialysis.org/ to fully understand where his passions lie.

He is without a doubt the most strongly committed, driven health professional I have had the pleasure of meeting. We need more like him to keep pushing the envelope. I understand where you are coming from but maybe he is just adding some balance. This has been a very healthy and hopeful discussion.

Cheers[/quote]

Beachy, I was offered Nocturnal but my caretakers are scared…after reading Dr. Agar’s website I am willing to give it another shot and try to convince my caretakers. Wish me luck!

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Gus, that is truly amazing. Knowing only bits of what you have gone through in your life I know you are a real fighter with a tremendous spirit.

I like the hybrid model myself a-some Nocturnal and some short, depending on how each week unfolds. Sleep has always been an issue with me.

Proceed slowly, mate and all the best.
Cheers

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Beechy, I understand his passion, and have on many occasions have stated that nocturnal 6 days a week, or as much as you can get is the “gold standard”. In fact, as I also have related in the past in other threads, I tried nocturnal for two months while I was in-center. In my particular case, I wasn’t able to hack it, and for a very good reason – I have neuropathy. While I was dialyzing, my feet were so cold, they felt frozen and felt like they were going to literally crack off like a block of ice. You can not imagine how painful it was. It wasn’t just numb, but felt as cold as it could on the scale of 10/10.

Also the medication I take for my neuropathy gets dialyzed out during treatment, so that didn’t help. I even tried using ointments that would normally keep the feet warm, all to no avail. Double layers of socks - it didn’t matter. So I would be up for eight hours while I was supposed to be sleeping. I was getting the “gold standard” while my quality of life was more like a “heavy metal band” ringing in my ears 24/7.

On the Doc’s website in the section “Am I suited to NHHD” Point 8, “Complications of Standard Therapy”, it states that neuropathy can be improved with the more intensive therapy. Oh, if that was only the case with me, but I did try, and I would be willing to try again, especially because I am at home and have my NxStage.

I have to admit that one of the things the Doc said that kind of set me off was that he was so negative about NxStage that he attempted to imply that it was not necessarily transportable. He used the way Bill packs up and travels as his basis, and that’s just not “real world” for all of us. For one week’s worth of dialysis, I packed up my Cycler and one well packed box that included my supply of saline and all of the needles, syringes and other supplies, and a scale and BP monitor. Would I like it lighter - you betha! But it was so easy to do. Oh, if we could go into the “Bush” together and dialyze for a week - it would be fantastic. Only if NxStage found its way to Oz, and me was well! Today, taking a dialyzaer on the road is only possible with NxStage. Annd Bill would have to agree with that to!

So it wasn’t just about the therapy; he went beyond that. So maybe for some of us the “silver standard” will have to be god enough. As I said, NxStage has liberated me; I feel great and have a tremendous amount of energy, especially compared to in-center; I have control over my schedule; I don’t crash after treatment; I don’t cramp; I don’t take any blood pressure meds any more; I eat and drink what I want; and most importantly I don’t have to deal with the B.S. or the dispassionate techs of the in-center treatment. I also feel safer at home and have learned more about the process as opposed to being an inanimate object that simply went in, sat down, stuck my arm out, just to be generally ignored for the next four hours.

My point I had to make wasn’t whether I question Dr. Agar’s passion, but to amplify on a point he made, but because of the length of his initial post could have been lost and that was that he is on the Medical Advisory Board of Renal Solutions; he admitted there was a Conflict of Interests; and whenever there is a COI one has to separate the wheat from the shaft. Ok, he said NxSTage was “nifty”, but what I heard was mostly negatives.

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I’d say Dr. Agar’s post contained little chaff. Rich when you posted “but of course Dr. Agar would think the Allient is closer to what he’d like. After all he is on the Renal Solutions Medical Advisory Board” what were you saying other than he’s motivated by this relationship rather than by the science?

What Dr. Agar reveled was that there was what could be construed as a COI; that is not the same as having COI that colors ones opinions. By disclosing the relationship he certainly met any reasonable standard for internet discourse to my way of thinking.

Portable v transportable is and will remain in the eye of the beholder.

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[QUOTE=Rich Berkowitz;14437]Beechy, I understand his passion, and have on many occasions have stated that nocturnal 6 days a week, or as much as you can get is the “gold standard”. In fact, as I also have related in the past in other threads, I tried nocturnal for two months while I was in-center. In my particular case, I wasn’t able to hack it, and for a very good reason – I have neuropathy. While I was dialyzing, my feet were so cold, they felt frozen and felt like they were going to literally crack off like a block of ice. You can not imagine how painful it was. It wasn’t just numb, but felt as cold as it could on the scale of 10/10.

Also the medication I take for my neuropathy gets dialyzed out during treatment, so that didn’t help. I even tried using ointments that would normally keep the feet warm, all to no avail. Double layers of socks - it didn’t matter. So I would be up for eight hours while I was supposed to be sleeping. I was getting the “gold standard” while my quality of life was more like a “heavy metal band” ringing in my ears 24/7.

[/QUOTE]
Rich, so far I don’t think I have neuropathy as such, but I can relate to the cold feet feeling. I turn my blood up to 36.5 manually each night and make sure my feet and lower legs are smothered in doona and nice and toasty. This presents a problem for the rest of my menopausal body when I get night sweats, very rugged on the hubby having a whirling dervish struggling next to him and particularly rugged in summer as it gets damn hot out here LOL

If you read my early posts about starting Nocturnal you will know it is a struggle though admittedly not for all users. Some nights I still lay awake for hours willing myself to stay connected to Madam Freni, wondering how a free thinking, old hippy type outdoor gal like myself, ended up having to rely on so much machinery to stay healthy.

I am a firm believer in that you do what you can. If short daily suits and you feel great then that is excellent. There is no way I could manage 6 nights a week Nocturnal with the present technology we have available. I love my bed, snuggling up to hubby, getting up when I want to, having sex when we feel the urge etc(too much information?) . 6 nights just doesn’t suit. However, bottom line is the blood tests are great after Nocturnal. So I am prepared to stick it out for 3 nights and top up with a shorter (5 hour) run during the week. I have been doing this for 2 years now, no diet or fluid restrictions and physically I feel terrific. I know, I am very lucky to have never done a long stint in centre which I think has helped me stay fit and well. i went straight into training for Nocturnal Day 1.

Um… what am I trying to say. Yep it hasn’t been easy and don’t beat yourself up if you can’t "go for Gold"At least you are still in the race!

Have a good one, mate. Maybe you can make it down to camp in some Aussie “bush” one day.
Cheers

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Good dialysis is:

· Good salt, blood pressure and blood volume control … and yes, it CAN be done without any fluid or food restrictions
· Preservation of left ventricular (heart) muscle bulk and function
· Ideal normalisation of calcium, phosphate (both) and parathormone levels
· Good, normal nutrition with good, normal food
· Good middle molecule removal (clearance) … see below
· Ideally, good clearance of protein-bound wastes … the new and coming protein-leaky dialysers
· The absence of dialysis-related symptoms … all of them
· Return to family, life-style, recreation and work

Beachy ‘re-directed’ me to this. I don’t tend to log on to HomeDx much these days, as I’m not a
Home Dx-er currently, having lost my fistula and still don’t have a working one…
But I looked at this thread when it was only 3-4 posts long & now I’m back to it, THe above from the
prof. is so true. I was doing 4 nights & after 8 months of it, was beginning to feel really good, on
non dx (well non-post dx) days. “Return to recreation” was close - I was about to get back into
surfing. “Normal nutrition” and no binders & next-to-no b.p. medication or fluid restraints was indeed
good dx & so it was a double blow to lose a good upper-arm fistula & end up on in-center 3 x 5.
EIght months of nocturnal had gotten rid of a few problems, like stiff & arthritic joints, &C.
After 10 months of in-center dx, all my “aches’n’pains” are gradually coming back…

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I have read the last few posts with some misgiving - and with growing uncertainty that it was a good thing to ‘post’ my thoughts. The last thing I want to do is get into a fight with anyone over what machine is best.

I hope those who know me will defend me on this and reassure others that I am not attempting to undermine or promote any one technology … that was not my purpose in ‘posting’. Rather, I sought to ensure that there was a maintenance of balance in these pages - especially for new users and new readers - and that it is important to recognise that no one technology made by man will provide all the answers. Good dialysis must be the aim of us all … and the closer we can get, the better.

That said, I still do have some reservations - and these are personal views and personal reservations - about the solute clearance provided by shorter hour treatments and lower dialysate flow rates … and I am not alone in this anxiety. I am an avowed, some say passionate, advocate for long, slow, frequent dialysis, dialysis that can only be practical gently and throught-the-night. THAT is my passion, my belief. Technology is but a means to an end and that end, for me, is currently as many nights per week as I can persuade my patients to dialyse and my renal unit budget can support.

At the moment, here, in Oz, we are hamstrung by a lack of equipment choice. Not that what we have does it badly - far from it! Its good equipment. It all is! However, we still have to learn the BEST ways to use what we have AND new stuff IS in the pipeline. It may prove better (or it may not) for some dialysis regimes that what we have. But, as I made the point in my 1st post, we have yet to learn if that is so.

I am devoted to long, slow, frequent, overnight dialysis. Dialysis must be a minimum (by my book) of alternate nightly … and then I look to my facilties here in Geelong where we have a long break! So, I am already breaking my 1st rule. I will continue to lobby, though, to be the first ‘service’ to ‘go alternate’ … Beachy will like that … and abolish the 2 day break. The ‘weekend’ is the #1 bogey - whether the regime is short or long treaments, day or night. The long break must go - and anyone who is dialysing at home and doing LESS than alternate day/night dialysis needs to look hard at how thay can work in that extra dialysis each fortnight to avoid any 2-day-off break. Beyond that, the more frequent, the better.

I am personally convinced that longer is better than shorter. So, give me long and slow over short and fast any day.

At the risk of offending anyone out there, I use this as the last slide in some of my talks …

Good dialysis is like good love-making … the longer the better, the slower the better, the more gentle the better and the more frequent the better

As for ‘promoting’ any one machine over another - no, thats not my bag. Having read the posts here though … and you need to understand this comes from a renal physician who is from a country where home haemodialysis is common yet the machines to do it with are limited … I return to my original observation. These pages have tended to extoll just one machine, NxStage. Its a very good machine but - and some of you may not realise this - the models of dialysis used here in Oz are very different to the models used in the US … very different indeed. I am not sure yet (and I mean yet) whether it will be ideal for or fit well with our model of care - and I suspect it may not. So, for the ‘Oz’ readers at this site, and I know there are many, its entry here may only answer some, but not all prayers.

More importantly, I wanted to emphasize the things that, to my thinking, constitute ‘good dialysis’. The word ‘adequate’ should be banned from dialysis vocabulary. Optimum is the only goal - never attainable but always kept in sight. To seek less is to short change you, the patients. I think we are beginning to understand that we have done that, regrettably, and its time we sat up and tried to work out the best ways to redress that wrong. In my view, home is the key. Then comes frequency and time - but both. Scribner favoured frequency over time … but in my view, once the long break has gone, then time comes next. The addition of frequency beyond alternate night treatments may be, for most, a luxury. I would love to start a ‘hive mind’ on an understanding of the benefits of time - but thats for another day.

As for the ‘hive mind’ - I agree with Bill … how good would that be!

Rich … I hope you will accept that the ‘timing’ of my post was entirely fortuitous and quite unrelated to any commercial issues. Again, those who know me will support the fact that I have a very non-commercial mind. I hope you will accept that at face value and look past the one machine versus th other discussion to the more important issues this converstaion has raised.

As for a nom-de-plume or ‘screen name’ … my apologies, that was NOT meant to signify that I was hiding my identity. I stand by my comments with my name to my posts.

John Agar
nocturnaldialysis

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Hey Dr.

I’m not going to call into question your thoughts on the subject. I’ve read and I think I email you on a subject or two.

As to why I took the nxstage , is was the only machine at this time that fit my space needs , can be taken fairly easy… I started with it in 4 of 06 and now do nocturnal with it. I run abot 8.5 hrs 6 nights a wk. All the rates are slow.

Only time will tell if any of these machine do a better job than a person kidneys.

Best To You Sir
Bob O’Brien

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I suspect that you know this, Bobeleanor, but NO machine does a better job than a person’s kidneys. Even if you were to do long nocturnal treatments 7 nights per week with the world’s best machine (whatever that is or may be one day), it’s still 56 hours compared to the 168 that healthy kidneys would do. A transplant will give you that 24/7 coverage–with the addition of immunosuppressant drugs. Even a wearable artificial kidney is unlikely to do anything about the hormones healthy kidneys produce. So, “better” is probably not the goal.

But, this thread is on “Good Dialysis,” and we can absolutely improve on that–it’s very easy to see that standard in-center HD might be “adequate” but is not good, or anywhere close to optimal, which should, as Dr. Agar said, be our goal.

• It’s not good to have the 2-day killer break (I call it a killer break on purpose–folks are twice as likely to die of sudden heart failure on the day after the 2-day break than on any other day of the week).

• It’s not good to base the dose of treatment on something that doesn’t matter (urea), when there are so many things that do matter, like blood pressure control, phosphorus removal and normal calcium/phosphorus balance, removal of beta-2 microglobulin…

• It’s not good to have a treatment where the vast majority of people who receive it are clueless about how it works and why they need to do their part to compensate for how not-good it is

• It’s not good to have 92.1% of people getting care that may be keeping them from working at a paying job, caring for loved ones, volunteering, or otherwise living their dreams, either because their schedules don’t work or because they have so many symptoms that they’re just not up to their usual tasks

• It’s not good that 10% of people on in-center HD are in the hospital at any given moment in time, and hospital costs are the biggest piece of the Medicare expenditures for ESRD

It would be good if we could offer treatments that:
• Allow people to feel well and function at a normal level without treatment-related symptoms
• Enable a normal diet and fluid intake
• Reduce the numbers of drugs people need to take
• Permit better sleep, better sex lives, and more energy
• Protet the heart from damage caused by poorly controlled blood pressure
• Prevent the build up of amyloid or damage to nerves

Oh yeah, we can offer treatments that do these things–at home! >;-)

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Dr. Agar, I’m sorry if I offended you, but perhaps what occurred was the “perfect storm” of your emerging from the 'bush", the prepoderance of NxStage-centric posting, your passion for nocturnal which you don’t feel is appropriate for NxStage, the posting of the intro of Allient, your MAB appointment, etc, etc, etc.

I truly understand what many believe to be the “gold standard” for dialysis, but in truth perhaps what is necessary is a “platinum standard” which would even more closely resemble 24/7, other than transplantation. But for me, it also requires help from the phamaceutical companies to develop a drug for neuropathy that won’t get dialyzed out. It has gotten to the point where I feel neuropathy is my biggest bane and not ESRD. My nights are mostly controlled with my meds and stockings. It’s my days which are now mostly problematic, where I can be walking for just a little bit and my feet will start burning. So it’s this constant yoyo effect of freezing to burning. If your “gold standard” would help, I would jump through hoops. But alas, I don’t think it will.

However, I don’t necessarily think it’s the machine, but the modality. The results I hear from others doing nocturnal on NxStage are all positive. Perhaps you just need more hands on experience with NxStage, albeit not in Oz right now, to put some of your concerns at ease.

As for the NxStage-centric discussions here on HDC, I agree and feel there’s a better place for it. As I stated on another thread, if I were not using NxStage I would be irritated by the amount of NxStage only discussion here. HDC is bigger than that. It may be more inconvenient for NxStagers to frequent more than one site, but I believe it’s the correct and respectful thing to do.

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  1. I personally am not convinced that it is as ‘portable’ as most think …

Professor,

Just want to let you know I’m reading your post in a hotel room in St. Louis at the AAKP conference as I dialyze using my System One. The bellhop took the machine out of my car and he brought the ten cases of diaylsate to my room.

I see the Arch and the mighty Mississippi outside my room and my family is next to me watching a movie. Pretty darn cool.

I’ve done CAPD, PD, at home Fresinius and in-center. These last 18 months have been the best since ESRD.

If it can get better than this, I’m all for it.

Erich

40

This has been a most interesting discussion. I have felt improvement on so many levels doing SDD 6x on NxStage and have looked forward to going on to do nocturnal txs with the machine. So, it is troubling to hear that it may not be true nocturnal that I would be getting. Neverthless, I want the truth. I do not worship NxStage as some do. It is a machine, after all. I would want a machine that could provide the most efficient txs. So, I am very interested to hear what NxStage will respond to Prof. Agar.

Something else I very much appreciate from Prof. Agar is the acknowledgement that so many of his colleagues are not up to speed on what constitutes true dialysis efficiency and are apathetic about improving care, settling instead for minimal adequacy This is exactly what I have encountered with most nephrologists and dialysis staff and have found it shocking. Education of dialysis professionals must be re-written.