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tyefly
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« on: February 25, 2010, 08:36:48 PM »

Ok  How many of those dialysate bags can you hang on the pole.....   some of you are doing 40L    I am doing 30 L   and they told me not to hang more than two..... Iam not buying that one......  I know that many are doing nocturnal and unless you have a separate pole...maybe you do.....   so how many bags can you hang..... Nxstage must make hookup lines for all those bags.... I have a 5 line one and have to wait until one is empty and hook another one up....do they make more lines for the bags..... to hook together.....
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
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The clearest way into the Universe is through a forest wilderness.
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jbeany
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« Reply #1 on: February 26, 2010, 02:44:41 PM »

I've done up to 5 bags on the pole they provided.  I didn't have any problems - except for trying to poke the wire hanger thru the stupid little plastic holes while holding a heavy, awkward bag of fluid at eye level. . . but the pole supporting the weight once it was on was never a problem!
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« Reply #2 on: February 26, 2010, 07:03:24 PM »

I hang 4 bags and if I need to use 5 I need another pole, the heater bag can hook up to 6 bags.
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Zog
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« Reply #3 on: February 26, 2010, 08:49:32 PM »

We've hung 5 bags on one pole for months with no problems.  I miss the old one hole in the middle bags.  It was easier to do then.

Are you going to get a Pureflow or do you travel all the time?  They wouldn't let us use the Pureflow (not approved, too many endotoxins, CYA medicine) when Jenn was pregnant.  So, we had several months of fun with bags.
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My wife is JDHartzog. In 1994 she lost her kidneys to complications from congenital VUR.
1994 Hydronephrosis, Double Nephrectomy, PD
1994 1st Transplant
1996 PD
1997 2nd Transplant
1999 In Center Hemo
2004 3rd Transplant
2007 Home Hemo with NxStage
2008 Gave birth to our daughter (the first NxStage baby?)
tyefly
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« Reply #4 on: February 26, 2010, 08:55:55 PM »

yes I am doing pureflow when ever I can......pretty simple...... but sure takes a long time to make a batch.....
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
Hemodoc
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« Reply #5 on: February 26, 2010, 10:12:06 PM »

I have 8 bags hanging right now.  No problem at all.  I recently got a 209 B warmer bag that hooks up to 9 bags at once.  I would go to 9 bags but I would have to run the machine at 11 L/hour to keep the treatment to 4 hours which is faster than my ears can take once the machine gets over 9.7L/hour, it is quite loud.

My opinion is that the NxStage dosages are way too low.  A spKt/V of 0.5 only matches what you get with usual incenter dialysis when measured on a weekly standard Kt/V.  I don't want to match, I want to exceed what I can get incenter.  The NxStage can do more than what most people dialyze with.  For myself, taking it to the max in a 4 hour session still leaves me about 30% lower than 4 hours incenter with the 2008 K machines from Fresenius.  However, but increasing the frequency to 5 times a week, I am at a much higher weekly clearance than incenter.

I am hopeful that more will recognize what the machine can do.  NxStage must stay with in the confines of their FDA approval, so I don't believe that I will see them stray from their current recommended dosages.  But individual nephrologists can make that judgement for themselves.  The machine can actually cook along at a pretty good clip.  But just hanging 40 L is not a problem except for me.  The only issue I have to look out for is not tipping the machine since it becomes so top heavy.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
Zog
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« Reply #6 on: February 26, 2010, 10:57:25 PM »

What's your pre BUN, Peter?  When Jenn was pregnant her pre BUN went to below 30 (I can't remember the units) when we did 25L at 25FF, 7 days a week.  Granted my wife was 77 kg then.

Dr. Greenberg, our doctor, was more concerned with BUN levels before dialysis when we went to 25L at 25FF.  I think he was influenced by the many articles that suggest a pre BUN below 50 for pregnant patients.  I don't know where our dialysate usage efficacy fit on a curve similar to the bovine blood chart that comes in the box as part of NxStage's effort to show you can save dialysate with low flow rates.  But, we were producing lab values for BUN of pre 30 and post 15. 

During this time a nurse was excited about some other guy on NxStage with a pre BUN of 90 dropping it to 40 because his URR was GREAT!  We were like... yeah but our pre BUN is lower than he'll ever get and our URR is less.  We haven't been big fans of kt/V or URR or anything based on urea since then.  Some dude can go home and chow down on protein on the day of labs and bust out a bunch of urea in the first hour of treatment and appear spectacular on paper.  I want other clearance labs.

We are doing 20L at 35FF now and getting by with okay labs, except for PTH which had been a problem for years even before we started NxStage.  Jenn finally had a subtotal parathyroidectomy last month and is doing a lot better (all smiles on the DaVita basic lab report).

Sorry if I'm getting off track.
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My wife is JDHartzog. In 1994 she lost her kidneys to complications from congenital VUR.
1994 Hydronephrosis, Double Nephrectomy, PD
1994 1st Transplant
1996 PD
1997 2nd Transplant
1999 In Center Hemo
2004 3rd Transplant
2007 Home Hemo with NxStage
2008 Gave birth to our daughter (the first NxStage baby?)
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« Reply #7 on: February 27, 2010, 12:27:28 AM »

Dear Zog, my BUN is usually 35-40 pre dialysis and 15-20 post dialysis, although I went up to 49 for some reason with my last set of labs.  I still have residual urination with no fluid limits so I drink quite a bit of water all day long which will keep my BUN lower than those that are anuric and can't drink as much as they wished.  I eat a lot of protein every day as well.

My philosophy is simply the philosophy of optimal dialysis and maximizing the treatment to the limit of time and what the machine can do.  The philosophy of NxStage in a very real sense is to maximize the efficiency of the dialysate even if that leaves the patient with a lower clearance than could be achieved with higher dosages but a lower dialysate efficiency.  If the dialysate is nearly 100% saturated, it means that the levels in the blood are still high enough to saturate the dialysate.  This is in comparison to incenter dialysis where you have a much higher percentage dialysate flow to blood flow but at a lower efficiency of the dialysate.  Nevertheless, even maxing out my dosage to 40L over 4 hours, I am still 30% lower than incenter.  At 20L, I was 70% lower than incenter at 30% less time and at 30L I was about 50% lower at the same 4 hour time.  The only way that NxStage makes up for this is to do dialysis 6 days a week for most folks which gets the usual goal of 0.5 spKt/V to the same level as someone incenter in three days of treatment. 

There appears to be definite benefits to the NxStage even at these lower clearances but maximizing the efficiency of the dialysate does not get you to the maximum dosage and clearance that the machine can do.  Unfortunately, there are no studies on any of these issues outside of the recommended dosages.  I firmly believe that there should be more study to see if this is a viable option for more people.  In such, it will be up to each individual nephrologist to consider these variables for each patient.  Despite the fact that I am still a licensed physician, I do not write my own dialysis prescription.  My current regimen has been approved by three separate nephrologists.

So, to make a long story short, I believe that NxStage is missing the boat on the issue of intensity of treatment choosing to maximize the efficiency of their materials instead of getting the maximum clearances at the patient level.  I believe that in many ways this is a left over mindset from the adequate vs optimal point of view we have seen in usual incenter dialysis for decades.  I know it sounds good to say one liter of dialysate equals one liter of clearance, but sacrificing some of that efficiency for double the liters of dialysate has given me an 86% increased clearance for 30% more time. 

Lastly, I believe that if the other companies actually come up with a portable machine that exceeds the clearances of the NxStage, they will have to confront their recommended dosages simply to compete.  Since they don't have any real competition in the portable home dialysis business at this time,  I don't see that happening at the present time.  Nevertheless, there are many patients and individual nephrologists who are taking this machine to the max.  I know of one couple that does nocturnal dialysis every night with 60L of pureflow.  My 4 hour regimen is probably at about the max you can get without stressing out this machine too much.  I have been told it can run at 12L/hour.  I find the noise of the machine quite uncomfortable when it gets over 9.7L/hour.  For me that sets 40L as the most I can do in 4 hours or there about.  NxStage does not approve of this dose, but it is completely in line with the idea of optimal dialysis and the more the better.

Achieving 70% of incenter clearances in the privacy of my home is the best part of this whole package.  It eliminates the entire issue of transmissible agents such as HIV and Hepatitis B and C.  As long as I need dialysis, I choose the home option as long as I can do it with my wife's assistance.  I simply feel it should be done at the maximum clearance possible.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
tyefly
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« Reply #8 on: February 27, 2010, 09:30:36 AM »

I just did my labs and will get my results on Tuesday.....    My last labs   pre bun was 75 and post 45.... that was with 20L for 2.45 hrs for 5 days a week....  I didnt feel well... and so I bumped my prescription up to 30L and now I am doing 4 hours 6days a week. I do feel better now that I am doing 30 L.....  I am expecting my labs to be better..... after all  all this time I am spending on the machine in way more time I was spending in center.... where I was doing three days a week for three hours.... my labs were very good...and I felt great.....   I am asking my self now   why am I putting my self thru all of this extra dialysis and time.....  I went from 9 hours a week to 24 hours a week....  thats 15 more hours a week spending on Dialysis....   thats more that double.... Why would I want to spend my time doing this........ I went with Nxstage so that I could travel.....  and that was the only reason..... Now that I can self cannulate I can take care of my access no matter where I go.....  I just hope that my labs are better but we will see......  I hate to think that I am spending all this extra time just to get the same benefits as in center...... 
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
Zog
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« Reply #9 on: February 27, 2010, 11:02:05 AM »

When we were doing twice weekly labs and could monitor tiny changes in treatment, skip days seemed to influence pre BUN more than the treatment time.  It can take days to rid yourself of what you build up on a skip day.  We were running for 4 hours then and decided to go 7 days/week because of the effect of skip days on labs and it is ideal although no one wants to run 7 days/week.  Jenn has never really felt bad on any NxStage prescription beyond being anemic.  We try to do 6 days/week for 2-2.5 hours.  We wish her blood flow rate was better.  It's just under 400 now.  We miss the 500 we were getting with the catheter, although her catheter almost killed her, so we can live with 370-400 from her fistula.  We aren't really obsessed with getting perfect lab values like we were when she was pregnant.  It is one thing to risk feeling a little bad.  Risking a miscarriage is another.  We were running 30 L at 25 FF for six days/week when Jenn's pre BUN was a little over 50, switching to 7 days with 25L seemed to be a magic trick.  Her pre BUN labs were near normal reference ranges after that.
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My wife is JDHartzog. In 1994 she lost her kidneys to complications from congenital VUR.
1994 Hydronephrosis, Double Nephrectomy, PD
1994 1st Transplant
1996 PD
1997 2nd Transplant
1999 In Center Hemo
2004 3rd Transplant
2007 Home Hemo with NxStage
2008 Gave birth to our daughter (the first NxStage baby?)
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« Reply #10 on: February 27, 2010, 04:32:37 PM »

It is recomended that you hang no more than 29L on the pole provided. It may be able to take a larger load, but as everything, it has a limit and I would not want to overdue that limit especially on dialysis. You dont want that pole tumbleing down during a treatment.

Why 29L and 30L, who knows. Perhaps when you hang 30L, there is 1L that is going through the warmer bags/lines.  You can read more in the System One User manual on page 6, section 1-2, item 10.

///M3R
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« Reply #11 on: February 28, 2010, 12:18:11 AM »

My 4 hour regimen is probably at about the max you can get without stressing out this machine too much.
 
We went through 3 machines in 7 months while Jenn was pregnant.  They eventually aren't calibrated right or start throwing out machine error codes at the high rates and long times we were running.

Hemodoc, I respect your efforts to make the NxStage machine work optimally for you and I'm glad to know you were able to get your doctors to go along with your line of thinking.  Worst cast scenario, you are just wasting dialysate, but I don't think you are.  It seemed to me from the NxStage dialysate vs. clearance chart, you could double Qd at the same Qb and get 95% more clearance.  I guess you are wasting 5% of the dialysate, but you are either cutting your time in half or doubling your clearance.  There are limits though to just looking at urea clearance, there are more stubborn molecules you know that only time gets out.  I wish I could bake a cake at 700 degrees in half the time, but some things just don't work that way.

NxStage is built around more frequent treatments to help solve the problem of limited dialysate production without building a water room in your house.  Building a water room in your house to feed your machine a few hundred liters of dialysate every day may be something you could do if you got a Baby K machine.  Although, I don't want to list the pros and cons of a Baby K, I hate feeding some 4 year old argument against the NxStage machine.  We still get the feeling some doctors think of our machine is some little toy because of the low daily clearances.  It was one of the reasons we had to fight to keep Jenn at home while she was pregnant.  The insurance company made that decision for them--sad, but true.

I don't think the NxStage System One is the pinnacle of dialysis machines or regimens.  I don't think they would have named it System One, if they believed that.  I believe it is the best thing out there on a budget and the next step in the evolution of dialysis machines.  My feeling is that advances in the NxStage dialyzer will lead to better clearances with the same or smaller amounts of dialysate.  That is what has been done since dialysis began.  I just hope the researchers aren't too complacent over at Membrana.  Someone is going to produce a renal microchip in the next few decades that will be used in an implantable artificial kidney, but that's a dream now.

I hope NxStage is able to integrate the conductivity port on the Pureflow into the waste line on the cycler so they can give you clearance feed back in real time like the Gambro Diascan.  I've wondered if NxStage may have planned for that when they designed the Pureflow.  A Diascan like feature might help people adjust their treatment without as many labs.

Sorry again if we are going off the topic of this thread... back to the thread... you can hang 30L on the pole with the machine bolted to it.  We did for 3 months.  If you are worried, bolt the IV pole base to something large or get some hooks to attach to your wall/ceiling and get rid of the IV pole.  Maybe you could screw some IV hooks in your RV beside a window where you do dialysis and let the sun warm them up a little.  I don't know UV rays might release the plasticizers... don't do that.
« Last Edit: February 28, 2010, 12:22:18 AM by Zog » Logged

My wife is JDHartzog. In 1994 she lost her kidneys to complications from congenital VUR.
1994 Hydronephrosis, Double Nephrectomy, PD
1994 1st Transplant
1996 PD
1997 2nd Transplant
1999 In Center Hemo
2004 3rd Transplant
2007 Home Hemo with NxStage
2008 Gave birth to our daughter (the first NxStage baby?)
Hemodoc
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« Reply #12 on: February 28, 2010, 01:35:30 PM »

It is recomended that you hang no more than 29L on the pole provided. It may be able to take a larger load, but as everything, it has a limit and I would not want to overdue that limit especially on dialysis. You dont want that pole tumbleing down during a treatment.

Why 29L and 30L, who knows. Perhaps when you hang 30L, there is 1L that is going through the warmer bags/lines.  You can read more in the System One User manual on page 6, section 1-2, item 10.

///M3R

Dear M3Riddler, as I mentioned in my prior posts, my regimen with 40L is not recommended by NxStage.  I believe that the 29L limitation is based on weight factors of the machine holding up a certain amount of weight without becoming too top heavy and unstable. I tried to move my machine loaded up already and nearly tipped the entire machine over.  By simple physics, the 75 pound machine will become unstable when there is too much weight up in the air acting upon a fulcrum.  I have a very stable base and I do not move my machine at all once it is loaded.  Nevertheless, the  pole easily holds 40L which is 88 pounds.  Thus the dialysate is heavier than the machine when I start out.  If it is unbalanced, it could make the machine tip over.  I have not had any problems with that since everything is well balanced and centered well.  In fact, except that one time that I tried to move the machine on a thick carpet, it has never been tipsy or unbalanced even while I am handling the dialysate and hanging other bags. 

On the other hand, there is no issue for those that use the PureFlow with the dialysate under the machine.  I am aware of one patient and his wife who do 60L every night, 7 days a week with excellent results.  When you read articles on optimal dialysis, the question is often asked, what is the maximum we can dialyze safely.  That threshold to date has never been breached even with daily, nocturnal treatments lasting 8 hours a day. However, when we come to the NxStage machine, somehow or other, the company propaganda that we must maximize the dialysate efficiency becomes the over riding mantra instead of what we know about the pursuit of optimal dialysis where we know that more is better.  My point of writing about this is that taking NxStage to the max should be explored as an alternative treatment regimen above and beyond the current recommended treatments.  This is not a new concept since the NorthWest Kidney Centers in Seattle already uses 30-50% higher dosages than recommended by NxStage.  I have simply used that concept and asked: what is the max therapy I can get out of this little machine.  I believe it is time to take it to the max in complete accord with what we know about optimal dialysis.  My recommendations are that NxStage centers study what is the optimal dialysis dose on this machine.  I believe it is a compelling research issue that should be answered.  For myself, 20 and 30L treatments were not enough.  I would have stopped using the NxStage even though I truly wish to escape from in center care.  With my current regimen, my clearances are higher than what I could get in center on a weekly basis.  Understanding that the usual incenter weekly standards are a minimal standard, I believe that we should be looking at exceeding those standards with home based therapies.  A spKt/V of 0.5 equals weekly incenter care when done 6 days a week.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
Hemodoc
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« Reply #13 on: February 28, 2010, 02:06:35 PM »

My 4 hour regimen is probably at about the max you can get without stressing out this machine too much.
 
We went through 3 machines in 7 months while Jenn was pregnant.  They eventually aren't calibrated right or start throwing out machine error codes at the high rates and long times we were running.

Hemodoc, I respect your efforts to make the NxStage machine work optimally for you and I'm glad to know you were able to get your doctors to go along with your line of thinking.  Worst cast scenario, you are just wasting dialysate, but I don't think you are.  It seemed to me from the NxStage dialysate vs. clearance chart, you could double Qd at the same Qb and get 95% more clearance.  I guess you are wasting 5% of the dialysate, but you are either cutting your time in half or doubling your clearance.  There are limits though to just looking at urea clearance, there are more stubborn molecules you know that only time gets out.  I wish I could bake a cake at 700 degrees in half the time, but some things just don't work that way.

NxStage is built around more frequent treatments to help solve the problem of limited dialysate production without building a water room in your house.  Building a water room in your house to feed your machine a few hundred liters of dialysate every day may be something you could do if you got a Baby K machine.  Although, I don't want to list the pros and cons of a Baby K, I hate feeding some 4 year old argument against the NxStage machine.  We still get the feeling some doctors think of our machine is some little toy because of the low daily clearances.  It was one of the reasons we had to fight to keep Jenn at home while she was pregnant.  The insurance company made that decision for them--sad, but true.

I don't think the NxStage System One is the pinnacle of dialysis machines or regimens.  I don't think they would have named it System One, if they believed that.  I believe it is the best thing out there on a budget and the next step in the evolution of dialysis machines.  My feeling is that advances in the NxStage dialyzer will lead to better clearances with the same or smaller amounts of dialysate.  That is what has been done since dialysis began.  I just hope the researchers aren't too complacent over at Membrana.  Someone is going to produce a renal microchip in the next few decades that will be used in an implantable artificial kidney, but that's a dream now.

I hope NxStage is able to integrate the conductivity port on the Pureflow into the waste line on the cycler so they can give you clearance feed back in real time like the Gambro Diascan.  I've wondered if NxStage may have planned for that when they designed the Pureflow.  A Diascan like feature might help people adjust their treatment without as many labs.

Sorry again if we are going off the topic of this thread... back to the thread... you can hang 30L on the pole with the machine bolted to it.  We did for 3 months.  If you are worried, bolt the IV pole base to something large or get some hooks to attach to your wall/ceiling and get rid of the IV pole.  Maybe you could screw some IV hooks in your RV beside a window where you do dialysis and let the sun warm them up a little.  I don't know UV rays might release the plasticizers... don't do that.

Dear Zog,

I believe that we are talking past each other in a certain sense.  Let me take a look at one of your comments to show what I am trying to convey.  In a paragraph above, twice you stated I might be wasting 5% of dialysate. I believe that comes from the NxStage mantra of one liter of dialysate leads to one liter of clearance.  What is behind that saying is a simple fact that if the dialysate is 100% efficient, it does so because the levels of urea are still so high in the blood that the dialysate becomes completely saturated.  In other words, it never gets to the point that the Baby K gets by higher dialysate levels of removing urea and having less to clear as the treatment progresses.  Is that a good thing for the person getting dialysis?

It is time to go beyond the NxStage mantra of 1 liter of dialysate equals 1 liter of clearance and recognize that still leaves urea at high levels in our blood.  The point of optimal dialysis is to maximize  our time on treatment in factors of frequency and duration.  When it comes to the NxStage, I believe we need to look at one other factor, that is intensity of treatment.  My last spKt/V was 0.98 on 40L at a little over 4 hours.  My spKt/V on 20L was 0.5.  I know you can't generalize from only one data point, but in this case, I have seen a near complete doubling of my spKt/V with a doubling of my dialysate dosage with only a 30% increase in time.  As far as efficiencies of man made machines, that is a fantastic figure.  Stating that I am wasting dialysate falls in line with the company mantra instead of recognizing a 96% increase in my clearance.  Is the goal to maximize the efficiency of the dialysate, or is it instead to maximize how much dialysis I receive?  Speaking of wasting dialysate goes hand in hand with the propaganda and mantra of NxStage on maximizing the dialysate efficiency.  In the end analysis, the only factor that matters is improving the clearances that I see at the point of service.

As far as the Baby K goes, I was initially going to go with the Baby K, but chose the NxStage after seeing the inside of 7 units in 6 different states.  I did very well in my own home unit, but in all the other units, my labs were terrible and I felt terrible.  Having a Baby K would leave me incenter when I traveled.  The NxStage lets me travel such as the last 5 months I have been in Idaho for instance.  I give up some of the clearance issues for the portable factor.  I also chose the NxStage because of the ultrapure dialysate which I cannot at this time get incenter.  Nevertheless, if I was held to the recommended 20L dosage of NxStage, I would have long since gone back to incenter care, it just simply was not enough for my 90 kgs of body weight.

The fact that I can achieve 70% of my incenter treatments clearances with only 40 L of dialysate when I needed 192 L with incenter shows the fact that the NxStage theory of one liter of dialysate equals one liter of clearance still is an important concept, but not so important that we lose sight that getting the max clearance to the patient has been shown over and over to reduce morbidity and mortality.  Someone with a lot more math ability than myself could look at those efficiencies and make the assessment that my 40 L of dialysate was quite efficient indeed.

Lastly, you touched on an issue that compels me to write on this issue.  You mentioned that many nephrologists reject the NxStage due to its low clearances.  That is a very real issue that I have experienced personally.  It is also the Achilles heal of the NxStage System One should any other portable machine come to the market with higher clearances.  I believe that will be the selling point that they will focus on should DEKA or any other manufacturer bring a machine to the market place in the near future.  In addition, if we are able to get into the 70 or 80% range of clearances compared to the Baby K, NxStage would become even more preferred in the market place.  I thus believe it is in the interest of NxStage to take their system to the max.  The other portable machines are looking at ordinary RO systems that will likely not get us to the Ultrapure dialysate range that I enjoy with the NxStage.  I don't want to lose that benefit as well.

So, for clinical and marketing purposes, I believe that NxStage should explore taking it to the max.  It is my current choice of treatment, but there are many areas that I believe could be improved.  We should always be willing to discuss the pros and cons of any treatment option openly and rationally.  In such, there is not yet a perfect treatment option which means all treatments are open to critique and recommended changes.  NxStage is a step in the right direction, but we need to make sure that we apply the maximum efficiency at the patient level and not at the level of dialysate.  What is the goal of dialysis treatment should be the most important issue that we use to evaluate our differing treatment options.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #14 on: February 28, 2010, 06:55:52 PM »

Peter,

Very well written,  I agree with you so long as we don't loose sight of the benefits of increased frequency of treatment and we do not use high clearances as an excuse to shorten treatments.  One needs to look at all of their lab values before they shorten a treatment.  I don't think the faults are so much with the NxStage machine, but more with the economics of providing large amounts of dialysate and large high flux dialyzers for daily use.

I agree that 20L is not enough for someone who is 90 kg.  My wife is around 60 kg and we are doing 20 L.  I think NxStage recommends 15L.  Everyone should be able to tailor their NxStage prescription to their needs.

Being able to travel with the NxStage has been a great help to us.  We are able to visit family over holidays and Jenn can eat well at Thanksgiving and Christmas without having to worry about when her next treatment is.  Things like that don't have a lab value but do have real value to patients.  Do you live to dialyse or dialyse to live?

Kevin
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My wife is JDHartzog. In 1994 she lost her kidneys to complications from congenital VUR.
1994 Hydronephrosis, Double Nephrectomy, PD
1994 1st Transplant
1996 PD
1997 2nd Transplant
1999 In Center Hemo
2004 3rd Transplant
2007 Home Hemo with NxStage
2008 Gave birth to our daughter (the first NxStage baby?)
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« Reply #15 on: March 01, 2010, 12:00:20 AM »

Just as a side note Zog, I love the way you always say "we" are doing this or that, when it is actually Jenn doing it. I admire you for that and for all of the support you are giving her.
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« Reply #16 on: March 02, 2010, 05:23:11 PM »

Peter,

Very well written,  I agree with you so long as we don't loose sight of the benefits of increased frequency of treatment and we do not use high clearances as an excuse to shorten treatments.  One needs to look at all of their lab values before they shorten a treatment.  I don't think the faults are so much with the NxStage machine, but more with the economics of providing large amounts of dialysate and large high flux dialyzers for daily use.

I agree that 20L is not enough for someone who is 90 kg.  My wife is around 60 kg and we are doing 20 L.  I think NxStage recommends 15L.  Everyone should be able to tailor their NxStage prescription to their needs.

Being able to travel with the NxStage has been a great help to us.  We are able to visit family over holidays and Jenn can eat well at Thanksgiving and Christmas without having to worry about when her next treatment is.  Things like that don't have a lab value but do have real value to patients.  Do you live to dialyse or dialyse to live?

Kevin

I wasnt clearn in my previous post.. I did mean that the 29L limit is a weight limitation and not a volume limitation to the machine....

Yes, NxStage does recommend a dose of dialysis, but this is only a suggested dose to start. It should be up to you and your nephrologist to determine what it takes for an optimal treatment and how to adjust the prescription to reach this.
 Nxstage is capable of 60L per treatment, but the downfall is the expense and most centers will not use this amount. Nxstage is capable of delivering optimal dialysis and is also capable of delivering nocturnal treatments. It needs to be individualized towards the person. This is up to you and your center working together...
Unfortunately it all comes down to $$.

///M3R
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« Reply #17 on: March 02, 2010, 11:45:43 PM »

Dear M3Riddler,

As I mentioned in a prior post, NxStage is my current treatment of choice.  The only issue that I have with the machine is that even at max in the 4 hour period, I am still 30% below the incenter clearances that I got.  I readily choose this since the side effects of only thrice weekly treatments are overcome by doing my dialysis at least 5 times a week instead.  However, I would have clearances only 60-70% of incenter without my insistence on going to a higher dose.  I was told by both my nephrologists that I saw in training that they would let me go to 30L but it wouldn't make any difference.  They were focussing mainly on the frequency of treatment more so than any other part of the picture.  When I went to 40L, I gained a full 90% increased clearance over my starting dose recommended by NxStage.  Without an MD behind my name, I truly doubt that I would have ever been allowed to double my dose.

Nevertheless, I am at the same clearances that those on the Baby K are targeted (0.9) by at 30% less time than my treatments take. 
As mentioned in a prior post, many nephrologist do avoid the NxStage due to its significantly lower clearances.  You are correct that you can do 60L in one setting, but that would have to be done with an extended regimen usually best nocturnal.  No matter how we look at it, NxStage as many benefits as it has, does indeed have lower clearances than the Baby K.  Optimal dialysis truly is that of taking dialysis to the max where standard machines at high capacity and daily extended treatments can deliver weekly Kt/V's in the range over 6.0.  Many believe that this will greatly reduce morbidity and mortality.  Pound for pound, the Baby K is simply able to deliver higher clearances.

You mentioned that the NxStage recommended dosages are for starting purposes to be adjusted by effect at the discretion of the individual nephrologist.  These are likewise the ranges that have been FDA approved on this device.  I have seen literally dozens of comments on NxStage about those secondary adjustments and the overwhelming majority have been to reduce the dosage after the first set of labs is in.  It would be interesting to hear comments from folks on NxStage on this issue, but telling a patient to only do 18L instead of 20 is pure lunacy when  looked at from the standard of optimal dialysis maximizing time, duration, frequency and intensity.  Yet I have seen dozens of posts on folks talking about lowering their dose.  Epoman himself mentioned this at one point in time as well.  Talk about wasting dialysate.

I have a great fondness for my little machine humming away at my side right now as I am posting, but I am also taken quite aback by the culture surrounding NxStage of a new definition of adequate at 0.5 spKt/V done 6 times a week.  I believe that time will judge this as too low a point just as standard values at 0.8 were shown in many studies to likewise be too low.  Frequency is a very important component of the dialysis prescription but it is not the entire picture.  This little machine can deliver a much higher dose, yet not equal to the Baby K that with its simplicity of usage is a very compelling reason to choose NxStage over Baby K. 

The biggest disappointment that I have with the NxStage System One is a complete dearth of available studies to answer the many questions that I have about this machine that I am placing my life in trust.  I would hope that the culture surrounding the NxStage is not blinding people to the basic facts that higher dosages in the many variations that we have is the goal of optimal dialysis.    For those that wish to optimize time on the machine by going from 20L to 18L, why not crank the machine up instead and get the full benefit of what is hanging in the bag.  Looking over many aspects of the NxStage, it is my opinion that we are readily accepting the NxStage business model as a substitute for the long sought optimal dialysis paradigm.  Maximum efficiency of the dialysate sounds good as a sales pitch, but in my case and others such as Tyefly, we have found it does not deliver optimal function at the recommended dosages.

I am not trying to attack NxStage in any manner, I would simply like to see in the medical literature, independent investigators taking NxStage to the max and publishing their results. I believe that the dosages are at least 50% lower than what can easily be achieved.  It is time to take NxStage to the max.  For most folks, that is simply not an option, yet it should be in my opinion.  Most would benefit from and FDA approved nocturnal program.  Once this happens, the dosages and what is recommended not only for nocturnal, but short daily dialysis is likely going to increase.  Time will tell, but lowering the dosage of NxStage based on monthly lab findings is a failed approach and goes completely against the tenants of optimal dialysis.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #18 on: March 03, 2010, 06:40:04 PM »

Peter.....  thx for your input.....   we have the same concerns with Nxstage.....   My question to you is   If you could do Nxstage nocuturnally  would you ..... and what do you think the perfect perscription would be for you. 
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
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« Reply #19 on: March 28, 2010, 12:47:01 PM »

I used a CARABINER to hang the bags:
1.  I would first hook the carabiner between the two holes and then
2.  Attach the carabiner to the pole.
It was a lot easier to hook a carabiner to the pole than a bag while reaching.
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silverhead
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« Reply #20 on: April 01, 2010, 09:39:57 AM »

Clancy80, what a great idea!, I am sitting here smacking my head about not thinking of this, so simple and and it would definitely make it easier. Heading down to Harbor Freight shortly to pick some up. THANKS
Tom
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Do not argue with an idiot. He will drag you down to his level and beat you with experience.
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