Good dialysis

Discussions for Patients, Family, and Friends HD For Patients
1

As a ‘lurker’ at HDC, I read the comments that are made and sometimes feel an overwhelming ‘itch to put my oar in’. One topic seems recurring – NxStage – a nifty, neat little machine that many appear to have hitched their hopes to … but it bothers me a little that the chat on the site has become increasingly NxStage-centric.

Why should that bother me? Well … and here I must confess up-front that I have a conflict of interest here as a member of the MAB at Renal Solutions … I feel some balance needs to be achieved between ease of home-use (this seems a NxStage ‘given’ at the moment) and the ‘goodness of dialysis’ (not, in my view, yet a proven NxStage strength).

NxStage is a cool machine. No doubt about it. It has revolutionised the US approach to home care and shows signs of helping to rekindle US interests in home HD (about time) – for we here in Australia and New Zealand have been doing home HD ‘for ever’. It has given patients new hope, new purpose. It is easy to load, prime, learn and use … NONE of that I dispute. I have worked with them in Seattle at NWKC and in Palo Alto at Wellbound. I have learnt to set them up myself and timed myself - and I was pretty fast! I can fully see why they are, at least on the surface, cool, nifty and a patients ‘dream machine’ - well, at least compared to using some of the other over-engineered-for-home machines that are currently around.

But … and here come my anxieties …

  1. I personally am not convinced that it is as ‘portable’ as most think … not when you add the 25L or so of dialysate bags (in the Mark I version) used per dialysis. Go away for the weekend or on a vacation and there is a trunk-load-plus of fluid to take along with the machine or to arrange to have delivered to the weekend or vacation destination. Bill Peckham … whom I know well and who is a long-time and remarkable home dialysis patient … assesses the weight of the cycler (machine) at 70 lbs and a ‘travel bin’ including 5x5L (25L) dialysate fluid bags and all the additional supplies needed for one treatment (a blue pad, buttonhole needles, three 10cc syringes, alcohol and iodine wipes and 4 x 4 garbage bag) at a further 60 lbs. Bill takes 5 travel bins with him and often arranges friends to re-supply him beyond his 1st five treatment supply bins. That’s a big (and heavy) load to truly call ‘portable’. I know Bill travels – he’s amazing and a light to us all – but what he manages to do, without complaint, would be hard work for the majority of others wanting to follow his trail-blazing footsteps. To me, lugging all that around seems a little inconvenient and at the least seems a disincentive.

Then, there is the new online generator (the Mark II version) - a 60L black box, which, to me, (a) pads the size up to the equivalent of a standard dialysis machine and (b) adds additional weight, cost and non-moveability to the system. OK, what about a generator at home and bags when you travel? … well, to me that is still added cost and you STILL have the travelling problems of packing in the fluid!

  1. To my understanding, it doesn’t really cut the mustard with good dialysis! Though I am an avowed and well-known hater of and disbeliever in Kt/V, if you DO believe in it, NxStage wont get you there - or at best only just. The low Qd NxStage requires to make the dialysate last the treatment is, to an Aussie who provides in our Nocturnal program 40-50 dialysis hours a week at a Qd of 300 and a mean Qb of 225, a real concern. Also, it is not the answer for longer treatments … it just can’t do them … and the advantage of longer therapy is the removal of time-dependant substances like phosphate, B2 microglobulin, homocysteine and other time-dependant solutes. Solute clearance just isn’t good enough and, by my book, it doesn’t matter how you twist and turn, that’s true.

Here we are ‘long slow over-nighters’. All of us. Short daily just hasn’t happened here. One reason for this is that we don’t have the equipment to facilitate this at home. As ‘Beachy’ at the HDC chat site often says – where’s NxStage … when will we get it in Australia? But to caution her here – it is not going to provide you better dialysis than you are already getting. Indeed, it will give you significantly less. Here, with just Fresenius and Gambro to choose from, its not practical to ask a patient to set up and pull down a Gambro or Fresenius machine, at home, 5-6 days (and 6 is best) for a 2-3hr dialysis run … my patients just wont do that and I dont blame them. Yes, NxStage has, without doubt, (partly) solved that with its cassette-style entry and simplified interface. Its set-up - load, hang and prime - is about 22-24 minutes, but we dont have NxStage here in Australia … hence home has meant at a minimum 3 x week 4+ hrs/session (commonly longer) or long, overnight therapy … and may I say thank God for small mercies and quirks of fate!

Indeed, I am anxious that our good standards of home care in Australia might erode if NxStage were to come here and we were to slip back from our home 3.5 nights (minimum) of 8-9 hrs (average) … thats 30+ hr/week … to a short daily program of, say, 2.5hrs x 5 x week. My maths says that that is less than half of the dialysis we currently provide AND at a Qd of 100ml/min, not the 300-500ml/min we use here now.

I know I can’t influence or change the views of all the contributors to this chat site but, in truth, many who contribute here have never EVER experienced the improved well-being generated by good dialysis. Most here (rightly) extol the virtues of the improved on-off times generated by smarter, faster machines but is that the same as good dialysis? Maybe not. Maybe some balance needs to be injected … a reality check? … a ‘hang on a tick’ cautionary note.

OK … I hear you say … ‘he’s just wanting to promote the Allient’! Well, actually, I think the Allient IS a smart machine and will add a dimension beyond NxStage as it will be able to provide a range of hour and frequency options beyond those provided by NxStage – and at a more effective Qd …but its set up times are clearly (at the moment) longer and it is big and ‘normal-sized’ - clearly not a portable ‘put-it-in-the-trunk-and-drive’ kind of machine. But, and this is yet to be confirmed, it may be the better home machine. It is fully independent of a water source (like NxStage) and of drains and uses only 6L of water … no bags to hang or bulky dialysate generators as an add-on. It also makes my dream of providing true ‘hybrid care’ achievable … a machine that can be moved around the house - onto the patio in the dappled shade or on a warm night for short daily treatments a week on 2-3 days or evenings but also, back to the bedroom for 2-3 long nightly treatments/week to sustain longer duration treatment for the phosphate and B2 clearance that is denied by short hour treatments. The result? …a true mix and match lifestyle ‘hybrid’ of short and long. What the Allient WILL offer is a good Qd and better solute, phosphate and middle molecule clearances … sadly, I have my doubts that NxStage does.

I just dont want people thinking that, as it currently is set up, NxStage does stellar dialysis. It doesn’t, and the people need to understand that. They might be getting shorter runs and a semblance (perhaps truly more a semblance than a reality) of portability but one thing they are NOT getting and that is optimum dialysis. We need to fess up to that!

Moreover – down the track there is the possibility of something of an Aksys style machine emerging from the deal that Baxter International has recently announced with Deka (Manchester NH) in a press release early in August - http://www.nephronline.com/nephnews/index.php?option=com_content&task=view&id=896&Itemid=131 … that will be something to watch for too.

Finally, I don’t want people to think me a NxStage basher … or to generate by this post a storm of protest and emails to me … that’s not the point. There is a huge and complex raft of measures that make up good dialysis. NxStage fulfils some of these (practicality, speed, ‘portability’ (?), simplicity – this is undeniable – but it also falls short, too, on others, among which I fear comes solute removal. For example, phosphate removal is time dependant and I don’t think can be adequately handled by NxStage.

I am as keen to have the NxStage company and its nifty machine come here to Australia as anyone … perhaps more than anyone I know. It would significantly broaden our choices and help to force us yet further away from conventional one-size-fits-all treatment … and there is much in that little machine to like, admire and love. It has opened doors, made things possible, given hope, rattled the markets, shot stark wake-me-up notices at the big guys but … it doesn’t really do as good a job at dialysis as it first may appear to … and that’s what is should all be about … good dialysis! For short daily … just, but really only just. For anything more … to my mind, it just doesn’t. I can’t escape that thought.

John Agar (Australia)
http://www.nocturnaldialysis.org

2

Good on ya Professor! Welcome to HDC. I assume you saw this thread on the Baxter/DEKA deal. Mel wrote in favor of transportability because it allows a swap out service scheme. As I’ve thought about it I’d say the transportability feature is an example of the success that comes from selling the sizzle instead of the steak.

Clearly the System One has made a breakthrough in HHD take-up which is a major breakthrough but I agree that there is plenty of room left at the head of the class. Of course the issue with Allient is the cost of the sorbent filter. Putting aside business models and costs I would point out that the Allient does not achieve the Aksys’s level of biocompatibility so I would say that there is still room at the head of the class.

It’s going on midnight here - your post offers a lot to discuss but it’ll have to wait until morning. I will say with regard to my unquenchable desire to travel that it is a disease - wanderlust should be a recognized comorbidity (but one that offers a survival advantage). I have a mental list of the places I have not been and I continue to try and check them off - I think I will be visiting New Hampshire next month and I should be able to hit Maine on the same trip. That’s two more states - 43 down 7 to go. I’ll get to Oklahoma, Alabama, West Virgina, Rhode Island, Arkansas, and both Carolinas - I tell you it’s a disease.

Always glad to see someone wave the flag for optimal dialysis. I hope your example will cause some of the other optimal dialysis luminaries of the nephrology community to follow your example and post their thoughts.

3

What a pleasant surprise to have you stop by, Prof. Agar. I have heard so much about you and have been to your site. And any doctor who can operate a dialysis machine has to be alright in my book (smile) !

It’s late over here in the U.S. and I said I will read one last post and yours was it. How very intersting! No doubt I will be re-reading it several times to get the full gist of what you have written.

I am currently using Nxstage and if dialysis gets better then this, I’d like to experience it. NxStage has given me my life back on many levels.Most NxStage patients here do the SDD txs. but a few do nocturnal length txs. Do your comments apply to those who do nocturnal on NxStage?

I’m sure you are a very busy man, but please come back as often as you can to educate us.True dialysis education is sorley lacking over here. Crazy, but true.

Regards,

Jane

4

Ah Doc, I thought you might be out there somewhere lurking in the dark alleys of HDC! Glad we flushed you out :wink:

I hear what you are saying loud and clear and am suitably chastened and will continue to crave the likes of Nxstage only for the occasional holiday I now only dream about to Lord Howe Island or the Cradle Mountain wilderness of Tassie. Yep, the dialysis I am getting is good and I can travel to a major city like Melbourne for a hol, but you see, I have Bill’s disease (hah, FSGS and Wanderlust) and live to see those places where dialysis doesn’t come easily. Just to spend a few nights out in the bush, under the stars is my idea of heaven. Am I asking too much? A Freni for home and a “little guy”(that’s a machine I’m talking about) to travel with.

I know, we Aussies should be very grateful and believe me I am (no small part played by you and your website) but I am sure you would be the first to agree that we do need to question, push the envelope, politicize or do whatever we can to keep improving our lot.

Happy Lunar Eclipse!
Cheers

5

[QUOTE=beachy;14379]Ah Doc, I thought you might be out there somewhere lurking in the dark alleys of HDC! Glad we flushed you out (;

I hear what you are saying loud and clear and am suitably chastened and will continue to crave the likes of Nxstage only for the occasional holiday I now only dream about to Lord Howe Island or the Cradle Mountain wilderness of Tassie. Yep, the dialysis I am getting is good and I can travel to a major city like Melbourne for a hol, but you see, I have Bill’s disease (hah, FSGS and Wanderlust) and live to see those places where dialysis doesn’t come easily. Just to spend a few nights out in the bush, under the stars is my idea of heaven. Am I asking too much? A Freni for home and a “little guy”(that’s a machine I’m talking about) to travel with.

I know, we Aussies should be very grateful and believe me I am (no small part played by you and your website) but I am sure you would be the first to agree that we do need to question, push the envelope, politicize or do whatever we can to keep improving our lot.

Happy Lunar Eclipse!
Cheers[/QUOTE]
Beachy - dont worry - you know I am an ardent supporter of new technology and attracting it to the shores of home dialysis friendly OZ - NxStage, Allient (in due course), the as-yet-not-even-conceived Baxter/Dexa concept … all, any. Bring them on I say. All will have their niche and place, their goods and bads and yes, for a travel hungry lady like you, Lord Howe and a NxStage seem a natural pairing.

The point of my post was just to make sure that the readers of these pages, some who may not have as clear an idea of some of the technology discussed here as do others, were aware that nifty though it be, NxStage does have limitations and they are, primarily (1) its true portability - possible and do-able for some but not as easy as these pages have sometimes suggested for most and (2) the goodness of the dialysis it can deliver … note that I REFUSE to use that ‘a’ word … but it doesnt do good long slow dialysis - not as we know it here in Oz … as you yourself know it! This is not because the machine is at fault, mind, but because the delivery of dialysate (enough of it for long enough) just isnt ‘there’ given the current dialysate delivery or generation systems. Not that it cant, just that it doesnt. This may change as the NxStage team explore new concepts but for now, System 1 means cumbersome bags of fluid - and lots of them and System 2, as I understand it, means a large dialysate ‘generator’ which is not portable and only makes 60L which either limits the dialysate flow rate for mutliple dialyses using the same batch or means making multiple batches if you want a higher flow rate or a longer treatment.

nocturnaldialysis.org

6

Pleasant surprise!, hehehe
Thanks for stopping by and posting your thoughts about Nxstage System One…your feedback and opinions matter to us…especially, from that of a Professional! You’ve pointed out some good points regarding Nxstage System One and hope that Nxstage is reading this right now. With Baxter now on the same market I believe we are to see some ongoing changes and perhaps more companies such as Fresenius making the jump in…

Nxstage is BIG step, what would we expect next? For me Nano home dialysis is my envision…

Thanks for posting!
Gus

7

[quote=nocturnaldialysis;14380]
(1) its true portability - possible and do-able for some but not as easy as these pages have sometimes suggested for most [/quote]

I’d just point out that dialysate production does appear to be a constraint on portability that will be very hard to get around. The source water should be tested before using an RO or DI water purification process which means that those processes cannot be a part of a proposed transportable dialysis machine. This leaves bags of dialysate - heavy and suboptimal clearances - or the sorbent system which as you say is too heavy at this time and is expensive under current US reimbursement rules.

The logistical challenges of traveling with the System One are not insignificant but by traveling by RV (or caravan as I believe they say down under) or boat or simply staying in one spot one can accommodate the logistics. As I’ve said to people asking me about air travel with the System One - “You must be strong like bull or tip like drunk sailor”

8

Dr. Agar on the Baxter thread I asked:

[quote=Bill Peckham;14215]We’ve had this conversation before, often as part of other discussions but what is your ideal dialysis machine?

Maybe a question in three parts.
First don’t edit yourself: Putting aside what you think is possible engineering-wise what is your ideal machine?
Second: What is your understanding of the design trade-offs and how do you weigh the various trade-offs that you perceive?
Third: What one thing would make your dialysis life easier today?[/quote]

I’m curious how you’d answer the questions - even the third part in the sense could a dialysis machine make your job as a Nephrologist easier?

9

There are a few patients who post to the boards who say they previously were on Fresenius, or one of the other traditional machines doing nocturnal txs, and after having switched to NxStage, also doing nocturnal length txs, feel just as well, if not better. So I would like to know, with the lower Qd and poorer removal of time dependent substances with NxStage, what, specifically, does this spell as far as daily and long-term effects?

10

Hi Jane,

I’m not a doctor, as you know, but I do know that short-term, day-to-day effects of dialysis are typically due to the rate and amount of water removal. Remove too much water from the blood (or do it too quickly), and you get hypotension, cramping, headaches, vomiting, etc., acutely, or with a bit less (but still too much), you get the “washed out” feeling that can last for hours after a treatment. So, if a daily machine makes you “feel just as well, if not better” than a “regular” machine, it’s likely because it’s doing a really good job of ultrafiltration. This predicts good things for your heart, since LVH seems to be caused mostly by uncontrolled high blood pressure.

But in the long term, over a period of years, running into some of the other long-term problems of dialysis, like amyloidosis, neuropathy, and vascular calcification is more likely if toxins are not effectively removed. The toxins that seem to cause more problems are “middle molecules,” which are removed very poorly by standard in-center treatment, better by daily HD, and most likely even better by nocturnal HD–since middle molecule removal is a factor of time, though I’m not aware of a lot of studies comparing middle molecule removal of daily vs. nocturnal HD. (Maybe Dr. Agar is?)

At any rate, you won’t feel any different in the short run if fewer vs. more toxins are removed. But in the long run, it can make a big difference.

11

Prof, I’m not in a position to argue the merits of one machine vs another when it comes to treatment efficacy; I’m just a simple home dialyzer who is grateful for my NxStage machine as it has liberated me in so many ways. And with the way my home is set up, it probably would have been the only option from a space consideration. It’s true that before PureFlow, my living room usually looked like a warehouse with boxes of dialysate taking up nearly the entire space, and that was with a biweekly delivery instead of a monthly. To NxStages’s credit they were very accomodating with the delivery schedule.

PureFlow has given us our house back as the number of cartons and size has gotten so much smaller. One box of PF SAKS makes a whole week’s worth of dialysate instead of 12 boxes. And it’s so easy to make a batch. Have we had some problems from time to time – of course, but that’s life, isn’t it?

I just travelled for the first time. I’m sure there are hassles with flying, but throwing the cycler in the car wasn’t that bad! Would I like a smaller and lighter machine – of course! With proper planning and a little bit of trust, I didn’t even load any dialysate. The courier that was to deliver my supplies of dialysate and cartridges confirmed the schedule the week before. They were to drive 75 miles to the summer house which is located in a remote area, though one that attracts many during the summer vacation period. And sure enough, at 8 am the van pulled in and I was dialyzing a couple of hours later overlooking the glorious lake on one of the outside decks. I can not relate the feeling I had of dialyzing in such a location – it was magnificent.

The point is that NxStage has opened up a new world for many of us that were “forced” to dialyze in-center, which in my estimation is horrible. There will be other machines that come down the line which will compete with NxStage, and I’m sure that if NxStage knows what their doing from a business perspective that they’re probably involved in designing their next generation machine. Baxter has to be a couple of years away from a machine, unless they re-release Aksys. The length of time for design, testing and government approvals probably are a minimum of 3-4 years.

And NxStage has a running start on all of the others with a patient base nearing 2000 and growing rapidly, a large and growing number of clinics, and the agreements with DaVita, RAI and Wellbound. Yes, there is a much larger universe if patients for all companies to recruit, but that obviously can’t happen until the product has been approved and available for use. If NxStage markets itself correctly, that may be a high hurdle to overcome.

No, I’m not say NxStage provides the best therapy, but the way the world works, that may not matter.

12

This gets right to the heart of the matter. There have been several posters who were doing high dose dialysis on a standard machine, switched to the System One and have never looked back. Since the rate/amount of fluid removed per treatment was unchanged we’d have to look to other reasons for why someone would feel more or less well after treatment.

I don’t have an answer. In general I think I should be able to take two days in a row off on occasion (after dialyzing 6 days in a row) without feeling the ill effects but since using the System One I have noticed that I feel like I need dialysis after just one day off, let alone two. The insert that comes with the System One cartridges shows how much more clearance is achieved as Qd increases but the FF keeps my Qd in the low 100s so I don’t think it is my imagination that I am not getting as much dialysis bang for my time as I would like. That said the reports from people who switched do carry a lot of weight in my mind so I think it is an open question.

What we could use is a better measure of effectiveness, a better measure of renal impact than Kt/v. My ideal measure of dialysis adequacy would be average blood cell life span. If we could easily measure the impact of changes in the dialysis prescription or the dialysis delivery system on blood cell life span then personal reports would carry less weight. However, until a better measure comes along I think we have to listen to those who have tried a range of treatment options. What I too am hearing is that the System One is as good or better than their previous machine.

For my part I still think the Aksys PHD gave me the most/best dialysis per minute of any of the machines I have used.

13

What a pleasure to have Dr. Agar write on HDC.
Dr. Agar, We were on nocturnal on the Fresienes for 2.5 years and Hubby did real well. People could not believe how well he looked. His numbers were great and he felt great!!!
We havebeen on nocturnal Nxstage since October- almost a year. His numbers are great. He can eat what he wants and drink what he wants. He feels great! We do water cultures on the purpak and dialysate monthly to be sure nothing is growing!
It is true about the portability. We are planning a trip the end of Sept. I will have to pack- his scooter, the cycler, 9 boxes of dialysate ( we use 45L per night while traveling) [60L a night on the pureflow], Supplies for 2 weeks ie: chux’s, button hole needles, etc.
So yes it will be work, but the last time we went to Myrtle Beach we spent 6 full days traveling to and doing dialysis. That is if you can get into a center.
So for me I would rather do his dialysis at night and have all 14days FREE to do what we want.
Just another perspective.
Pat Colongione

14

[quote=Dori Schatell;14387]Hi Jane,

I’m not a doctor, as you know, but I do know that short-term, day-to-day effects of dialysis are typically due to the rate and amount of water removal. Remove too much water from the blood (or do it too quickly), and you get hypotension, cramping, headaches, vomiting, etc., acutely, or with a bit less (but still too much), you get the “washed out” feeling that can last for hours after a treatment. So, if a daily machine makes you “feel just as well, if not better” than a “regular” machine, it’s likely because it’s doing a really good job of ultrafiltration. This predicts good things for your heart, since LVH seems to be caused mostly by uncontrolled high blood pressure.

But in the long term, over a period of years, running into some of the other long-term problems of dialysis, like amyloidosis, neuropathy, and vascular calcification is more likely if toxins are not effectively removed. The toxins that seem to cause more problems are “middle molecules,” which are removed very poorly by standard in-center treatment, better by daily HD, and most likely even better by nocturnal HD–since middle molecule removal is a factor of time, though I’m not aware of a lot of studies comparing middle molecule removal of daily vs. nocturnal HD. (Maybe Dr. Agar is?)

At any rate, you won’t feel any different in the short run if fewer vs. more toxins are removed. But in the long run, it can make a big difference.[/quote]

Dori, I highlighted what you just said in RED… I can tell you I have been in-center 3x a week quite long…today, I have severe amyloidosis…hands, shoulders, leg joints…you name it…it hurts, it just hurrts quite bad…its quite visible. As of now I have based of what I’ was told or read around its not reversible. For those of you who don’t have this problem yet it for REAL! Its a slow killer, so the frequent dialysis for your life is a fact! You will gain a few more years or even live in par with people who are not on dialysis.

[quote=Pat Colongione;14390]What a pleasure to have Dr. Agar write on HDC.
Dr. Agar, We were on nocturnal on the Fresienes for 2.5 years and Hubby did real well. People could not believe how well he looked. His numbers were great and he felt great!!!
We havebeen on nocturnal Nxstage since October- almost a year. His numbers are great. He can eat what he wants and drink what he wants. He feels great! We do water cultures on the purpak and dialysate monthly to be sure nothing is growing!
It is true about the portability. We are planning a trip the end of Sept. I will have to pack- his scooter, the cycler, 9 boxes of dialysate ( we use 45L per night while traveling) [60L a night on the pureflow], Supplies for 2 weeks ie: chux’s, button hole needles, etc.
So yes it will be work, but the last time we went to Myrtle Beach we spent 6 full days traveling to and doing dialysis. That is if you can get into a center.
So for me I would rather do his dialysis at night and have all 14days FREE to do what we want.
Just another perspective.
Pat Colongione[/quote]

[B]Pat, I know both of us use Nxstage and we’re enjoying it very much, but don’t you worry about what Dr. Agar just said? It seems that Nxstage is not best for Nocturnal…but for short-daily it is a good machine. Now with long term dialysis, many years am sure you’d want to avoid seeing the effects like amyloidosis…

If reserarch shows that Nxstage is not best for Nocturnal then why use Nxstage for Nocturnal? I guess it seems that we’re really enjoying the freedom…[/B]

15

[quote=Gus;14393][B]Pat, I know both of us use Nxstage and we’re enjoying it very much, but don’t you worry about what Dr. Agar just said? It seems that Nxstage is not best for Nocturnal…but for short-daily it is a good machine. Now with long term dialysis, many years am sure you’d want to avoid seeing the effects like amyloidosis…

If reserarch shows that Nxstage is not best for Nocturnal then why use Nxstage for Nocturnal? I guess it seems that we’re really enjoying the freedom…[/B][/quote]

I don’t think that is what Dr. Agar said exactly and I am not sure he knew that people are using the System One for Nocturnal. In fact I may try his ideal schedule of short during the week and nocturnal on the weekends using the System One.

The question I’m wondering about is: Does Qd impact the removal of time-dependent substances as much as Qd impacts the removal of small solutes?

16

[quote=Bill Peckham;14395]I don’t think that is what Dr. Agar said exactly and I am not sure he knew that people are using the System One for Nocturnal. In fact I may try his ideal schedule of short during the week and nocturnal on the weekends using the System One.
[B]

…Dr. Agar from Australia…
I just dont want people thinking that, as it currently is set up, NxStage does stellar dialysis. It doesn’t, and the people need to understand that. They might be getting shorter runs and a semblance (perhaps truly more a semblance than a reality) of portability but one thing they are NOT getting and that is optimum dialysis. We need to fess up to that!

Finally, I don’t want people to think me a NxStage basher … or to generate by this post a storm of protest and emails to me … that’s not the point. There is a huge and complex raft of measures that make up good dialysis. NxStage fulfils some of these (practicality, speed, ‘portability’ (?), simplicity – this is undeniable – but it also falls short, too, on others, among which I fear comes solute removal. For example, phosphate removal is time dependant and I don’t think can be adequately handled by NxStage.

I am as keen to have the NxStage company and its nifty machine come here to Australia as anyone … perhaps more than anyone I know. It would significantly broaden our choices and help to force us yet further away from conventional one-size-fits-all treatment … and there is much in that little machine to like, admire and love. It has opened doors, made things possible, given hope, rattled the markets, shot stark wake-me-up notices at the big guys but … it doesn’t really do as good a job at dialysis as it first may appear to … and that’s what is should all be about … good dialysis! For short daily … just, but really only just. For anything more … to my mind, it just doesn’t. I can’t escape that thought.
[/B]

The question I’m wondering about is: Does Qd impact the removal of time-dependent substances as much as Qd impacts the removal of small solutes?[/quote]

[B]Bill, I guess we’re just scratching our heads…

[/B]

17

Gus by posting non sequitur ads for the “Largest German Metal Site” which boasts “to all with right convicition: you are not here welcome” are you trying to tell us that you’re suffering from uremic dementia due to being under dialyzed?

Your post would benefit from editing or perhaps Mr. Frick could turn off your attachment privileges and save us all the clutter.

18

Having just woken and being late to start my day, there are plenty of points to answer here (and agree with) … but it will have to wait till later - maybe even tomorrow. I really DO want to emphasize that I think NxStage a true boon to many and I really do appreciate what it gives to home dialysis patients … but what Dori Schatell has said hits the nail. Daily is helps volume control (though interestingly we have done some work with our SDHD patients that, arguably, shows this is not always the case … my son and I published that as an abstract at the ASN a couple of years ago … but I am concerned re the longer term control of time dependant solute removal … especially PO4 and other so-called middle molecules … and this is an achilles heel of the SDHD programs (as opposed to NHHD - my ‘bag’ if you will). Bill raised an interesting challenge re the ideal dialysis machine … Bill, I will come back to that, I promise.

One thing though … I neither wish to be nor to become a ‘professional opinion’ to these pages - its what I dreaded might occur if I ‘put my toe in the water’ … thoiugh in the end I couldnt resist the temptation to say my piece. Those who know me will understand how hard is is for me to stay silent for ever. I simply needed to caution that there DO remain significant issues that NxStage either doesnt address - or, like time-dependant solute clearances may even regress on. I will try to answer these in the next day or two - tomorrow is light for me. I dont, however, want to get swept up in an endless back and forth - I hope you will understand and respect this.

Finally, not to appear to ‘advertise’ but some of these issues do arise and get some airplay in my website at http://www.nocturnaldialysis.org so if you havent cruised the site … have a look

nocturnaldialysis

19

[quote=nocturnaldialysis;14398]Having just woken and being late to start my day, there are plenty of points to answer here (and agree with) … but it will have to wait till later - maybe even tomorrow. I really DO want to emphasize that I think NxStage a true boon to many and I really do appreciate what it gives to home dialysis patients … but what Dori Schatell has said hits the nail. Daily is helps volume control (though interestingly we have done some work with our SDHD patients that, arguably, shows this is not always the case … my son and I published that as an abstract at the ASN a couple of years ago … but I am concerned re the longer term control of time dependant solute removal … especially PO4 and other so-called middle molecules … and this is an achilles heel of the SDHD programs (as opposed to NHHD - my ‘bag’ if you will). Bill raised an interesting challenge re the ideal dialysis machine … Bill, I will come back to that, I promise.

One thing though … I neither wish to be nor to become a ‘professional opinion’ to these pages - its what I dreaded might occur if I ‘put my toe in the water’ … thoiugh in the end I couldnt resist the temptation to say my piece. Those who know me will understand how hard is is for me to stay silent for ever. I simply needed to caution that there DO remain significant issues that NxStage either doesnt address - or, like time-dependant solute clearances may even regress on. I will try to answer these in the next day or two - tomorrow is light for me. I dont, however, want to get swept up in an endless back and forth - I hope you will understand and respect this.

Finally, not to appear to ‘advertise’ but some of these issues do arise and get some airplay in my website at http://www.nocturnaldialysis.org so if you havent cruised the site … have a look

nocturnaldialysis[/quote]

[B] Greets Dr. Agar, your very well welcomed. Thanks for sharing your website address. Will read through it I if not a problem with you, is it okay that I mention it sometime in a frontpage newpost on my blog and add a small icon link at the bottom right linking to your website?

Thanks again for posting here, actually, we do want more professionals to come here and post their opinions.[/B]

20

Part 1

There are so many issues here – and anything I write is just, as is this fantastic site, personal views and beliefs – but I will try to put my slant, correct or otherwise, on some of them.

Bill Peckham, the 43 state wanderer, is right – no current machine or proposed one has all the answers. But what of the newer technologies …

The Aksys? … I have to say that the old Aksys was a beaut machine. It was so fast (unparalleled) to get on and off, it was utterly user-simple, it had some really bright, before-its-time technology and its biocompatibility was way out there. But, it was clunky and its sterilization turn-around was too short and its bath too restricted at 56L to easily accommodate the slow, gentle, frequent, through-the-night treatments that some (like me) believe to be the best dialysis available.

The Allient? … it has some awesome water efficiencies (great for some from the driest habitable continent on earth) and it will allow good dialysate flow rates - important for improving solute (waste) clearance - but yes, there are the issues of the cost of the sorbent cartridge. Despite this, it may well prove truly cost competitive when taking into account the lack of internal fluid-exposed circuitry and the lack of plumbing and other installation and maintenance costs that may accrue to it.

The NxStage? … this site has had much written on it about this nifty machine but my previous points seem to have stood the test of Day 1 of exposure as I see users agreeing that portability DOES need ‘commitment’, a big trunk and still strong muscles … and the good delivery processes so-far sustained by the company. I still have solute clearance concerns – and these have been supported too by other posts but it is undeniable that users feel good on it …… but, and here I tread where angels would refuse point blank to go, feel good compared to what?

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.

I believe that good dialysis is so many things … and, to my mind at least, Kt/V is pretty much the least of them.

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
· The minimization of ‘co-morbidities’ … the ‘other things’ that can and do go wrong
· …. and better and healthier and longer survival

Good or, as I like to think of it, optimal dialysis really is more than just a mathematical number called Kt/V! … and all these can be attained - or at least realistically strived for. But I preach! Sorry.

Beachy … your suggestion of a ‘big guy’ (here in Oz that would be a ‘Fressie’ or a Gambro) for home and a ‘little guy’ (a NxStage) for travel isn’t as far-fetched as it might 1st sound. NxStage is really very simple to master so a well-trained home HD patient on a Gambro or a Fresenius would need only some simple set up, prime and ‘how to get around the screen’ training to be able to successfully use both ‘big’ and ‘little’ options. But, and it really is a but, the supply and carry issues arent small ones, Beachy. You have read what Rich Berkowicz said about the space problems he had for storage at home and the weight and logistics problems that ardent travellers like Bill have had to solve … and yes, I did get to see the lunar eclipse last night and it was mesmerising.

None of what I said was to denigrate or diminish the beaut little machine that NxStage is … but most of you here are enthusiasts – bless you all – and new or 1st time users may get the wrong idea about the challenges of portability if its not made clear that travel and portability are still troublesome areas.

Bill posed me 3 questions … but, in essence, what is my ideal machine?
(1) Small and, yes, portable. They shrunk a TV to a palm-held! I look in the back of a dialysis machine and see a lot of big things that can be made little – as a non-engineer, I think that’s sad though maybe what my non-engineer mind thinks can be reduced, can’t be.
(2) Light – and that likely relates primarily to the 1st point. The solid-state electronics seems bigger than it needs to be.
(3) Dry – independent of an internalized fluid circuit to minimise machine maintenance and make it more break-down-free.
(4) Dual flow – by this I mean capable of sustaining either a continuous flow or a reverse flow blood circuit … a complex way of saying I want it to do single or double needle (lumen) dialysis – and preferable at a simple flick of a switch.
(5) Silent – and as my passion is for overnight dialysis, this could easily have been #1 and not #5 on my list
(6) Intuitive – especially with set up and pull down where it should be obvious where things go and how they fit.
(7) Fast – and here I mean in set-up time and pull-down or ‘get-off’ time … Aksys ‘had’ this but current machines (including NxStage) don’t.
(8) Flows – it must allow/generate/encourage/provide to the dialyser sufficient blood and dialysate flows to permit an efficient gradient (the difference between the ‘nasties’ concentration in blood (high) and dialysate (low) … if you want a simple explanation of this, go to my website and check the Geelong Football Club example! …) and wash-away flow rates. I don’t want to get too technical but solute removal does depend on both the flow rates of blood against dialysate and the time over which the dialysis process takes place. The best dialysis occurs when good flow rates are sustained for long periods of time. Lower either the flow rate of the time and dialysis efficiency drops off. Lower both and you have got trouble. Here’s where I have a problem with NxStage – it cant deliver high flows but most are using it for short duration dialysis as well … and it just doesn’t (in my book) perform well under those conditions.
(9) Monitors – get rid of them. I don’t say that lightly. They just are in the way and make something that can be simple and safe, complex and no safer.