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PrimeTimer
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« Reply #25 on: June 30, 2014, 10:59:34 PM »

I'm 43 with a wife, a 12 year old daughter, and a 7 year old son (at home). I can't imagine doing any longer on my machine than necessary.
 
1hr setup + 3 .5 hr dialysis + .5 hr cleanup X 6 days a week
+ misc. time dealing with supplies/boxes/appointments/ect

I never knew how time consuming it would be, and with two kids at home, I have very little spare time as it is.
I hear ya! And then there's inventory and ordering and deliveries and...lab days! I take my husbands labs for him and even spin them in a mini-centrifuge they gave us and then run them downtown to the center to ship out to the lab. There is definitely a lot to it but still, I think doing home hemo is better/safer/gentler and I know I can help make my husband more comfortable than the center can and of course, we get to dialyze at the hours of our choosing. Can't go without saying tho that I miss our old normal life we had. Still trying to adjust to this new life and it's no picnic.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Hemodoc
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« Reply #26 on: July 02, 2014, 12:50:14 AM »

Why are you running your blood flow so fast? 420 really stuns the heart and can damage the fistula. Also at 18 LPH at 40 liters you are only dialyzing about  2 hours and  15 ,minutes?  If that is true then you are really going very short on your time. Just my opinion but it seems a bit off.

When I first got the "S" unit, it was shipped to my clinic (1st one my clinic had seen). So I started using in in-center so that we could all learn how to use it. 420 was the number my nurse was using when I was in-center, so I just keep using it. I've done 2 sets of labs since I've been on it and everything seems good.

The Kt/V usage for dialysis in many ways is a unique American practice. The other developed nations recognize that middle molecule clearance, those molecules that are the true culprits of uremia, is much more important than urea, which is a small molecule easily cleared quickly. We know that TIME on dialysis is perhaps the most important element of dialysis despite the American academic nephrology's continued resistance to these concepts.

The proof is in the pudding as some say. We still have the worst outcomes in the entire world although it has creeped down slightly over the last few years, if you believe their statistics that is. Long and slow dialysis gives the best outcomes. Japan runs many at 250 ml/min and has the best survival in the world for dialysis patients.

I try to run at 350 at most. If I ever get the System S, I would run higher volumes at a lower blood flow rate. Short, fast dialysis is not a winning strategy in the race to live a normal lifespan.

http://www.hemodoc.info/2011/01/short-daily-dialysis-can-be-too-short.html
« Last Edit: July 02, 2014, 01:01:42 AM by Hemodoc » Logged

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.
Speedy1wrc
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« Reply #27 on: July 02, 2014, 07:23:56 AM »

In center it's turn the chair over as often as possible. Time is money.

For home hemo it's do it as cheaply as possible. Consumables cost money.

Money rules the world.
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Mel Hodge
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« Reply #28 on: July 03, 2014, 04:45:58 PM »

If you are concerned about too much time devoted to dialysis, set the machine up for your desired sleeping time, start treatment, get in bed and let the machine serve as your alarm clock to get up in the morning. Nocturnal dialysis not only gives you superior results compared to any shorter schedule, but also takes the fewest waking hours out of your day. For most people, it works and is well worth a try…
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Speedy1wrc
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« Reply #29 on: July 03, 2014, 08:13:30 PM »

Nocturnal is only just getting a foothold in our area. Only one center is offering or going to offer it. I think they are still trying to recruit patients. For now it will be in center only.
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Pod99966
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« Reply #30 on: July 04, 2014, 10:12:54 AM »

How do you keep the needles in your arm while sleeping? I sleep in my recliner during treatment sometimes, but if I move my arm to much, the Arterial and venal pressures go crazy.

I loved doing dialysis on my catheter.
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amanda100wilson
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« Reply #31 on: July 05, 2014, 08:30:51 AM »

The pressure issue is the problem with me doing extended.  My arm has to be exact angle, exact position or I get problems.  Not conducive to a good night's sleep.  Extended as not worked for me because of this, and with my current fistula and it's location, I don't believe that it ever will.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
PrimeTimer
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« Reply #32 on: July 24, 2014, 12:03:15 PM »

We didn't ask for it but we are getting the new NxStage "S" Cycler in two weeks. We are being told that we will be using SAK's 402 for 30 Liter treatments, 5 days a week. (Right now on the System One Cycler we do 30 Liter treatments for approx 3.35 hours 5 days a week at a Blood Flow Rate of 350-380). We are being told that we can remain at a Blood Flow Rate of 350-380 and 30 Liters but that the new "S" cycler will run the volume of dialysate faster thus, shorter time on the machine (and according to others comments here, that seems to be true). BUT...I am still confused or rather, a little bit suspicious about the new cycler running dialysate faster without requiring the blood flow rate to also be adjusted to a "faster" rate to avoid alarms. Or, is this really true...faster dialysate rate but same slow blood flow rate?? By the way, of course, we do understand that more time on the machine means more dialysis and more dialysis is always better but that's a separate issue for us right now (husband has been getting very good labs with his current treatment plan).

Anyways, I can give NxStage a call but am hoping to hear from one of you first...your thoughts and/or answers or experience with the new "S" cycler. Thanks. 
Logged

Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Simon Dog
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« Reply #33 on: July 24, 2014, 12:14:15 PM »

You can run faster dialysate and get better clearance in a given amount of time, but probably less than if you run the same amount of dialysate slower.   The real way to improve is to run the dialysate faster and use the extra time to allow for a larger Rx.    If you simply increase the speed to lower the time, and do not increase your total dialysate volume, you are probably getting less effective treatment.  There is some evidence to suggest that total time is very important, and you don't get a free lunch even though may have the same Kt/V running the solution at a higher speed.

One catch - the faster rates are supported only by the PureFlow.  You will need an Rx than runs at a slower rate for your "bag contingency plan".
« Last Edit: July 24, 2014, 12:17:49 PM by Simon Dog » Logged
obsidianom
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« Reply #34 on: July 24, 2014, 01:09:10 PM »

We didn't ask for it but we are getting the new NxStage "S" Cycler in two weeks. We are being told that we will be using SAK's 402 for 30 Liter treatments, 5 days a week. (Right now on the System One Cycler we do 30 Liter treatments for approx 3.35 hours 5 days a week at a Blood Flow Rate of 350-380). We are being told that we can remain at a Blood Flow Rate of 350-380 and 30 Liters but that the new "S" cycler will run the volume of dialysate faster thus, shorter time on the machine (and according to others comments here, that seems to be true). BUT...I am still confused or rather, a little bit suspicious about the new cycler running dialysate faster without requiring the blood flow rate to also be adjusted to a "faster" rate to avoid alarms. Or, is this really true...faster dialysate rate but same slow blood flow rate?? By the way, of course, we do understand that more time on the machine means more dialysis and more dialysis is always better but that's a separate issue for us right now (husband has been getting very good labs with his current treatment plan).

Anyways, I can give NxStage a call but am hoping to hear from one of you first...your thoughts and/or answers or experience with the new "S" cycler. Thanks.
If you are doing well with current prescription , why change anything. Just use the new machine at the same settings as the old one. Going faster with the same volume dialysate gains nothing and probably loses some effectiveness.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
PrimeTimer
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« Reply #35 on: July 24, 2014, 03:51:46 PM »

You can run faster dialysate and get better clearance in a given amount of time, but probably less than if you run the same amount of dialysate slower.   The real way to improve is to run the dialysate faster and use the extra time to allow for a larger Rx.    If you simply increase the speed to lower the time, and do not increase your total dialysate volume, you are probably getting less effective treatment. 
Quote
There is some evidence to suggest that total time is very important, and you don't get a free lunch even though may have the same Kt/V running the solution at a higher speed.

One catch - the faster rates are supported only by the PureFlow.  You will need an Rx than runs at a slower rate for your "bag contingency plan".

Simon Dog: Interesting you mentioned Kt/V may end up being the same on the new S Cycler. My husband spent 5 days in the hospital last month for a staph infection and so was only dialyzed twice there that week (compared to our 5 x week schedule at home) and we just got his labs for last month; his Kt/V shows an "improvement" of 2.24. The month before that (with no infections/hospitalizations) was 1.96.  Weird...  Thanks for the tip about bags because I was just about to call and ask NxStage why they aren't sending us new bags with the new SAK's to use for their new S Cycler. Gee, I am sooo glad that our clinic alerted us about all this (not)!
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
PrimeTimer
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« Reply #36 on: July 24, 2014, 04:09:40 PM »

We didn't ask for it but we are getting the new NxStage "S" Cycler in two weeks. We are being told that we will be using SAK's 402 for 30 Liter treatments, 5 days a week. (Right now on the System One Cycler we do 30 Liter treatments for approx 3.35 hours 5 days a week at a Blood Flow Rate of 350-380). We are being told that we can remain at a Blood Flow Rate of 350-380 and 30 Liters but that the new "S" cycler will run the volume of dialysate faster thus, shorter time on the machine (and according to others comments here, that seems to be true). BUT...I am still confused or rather, a little bit suspicious about the new cycler running dialysate faster without requiring the blood flow rate to also be adjusted to a "faster" rate to avoid alarms. Or, is this really true...faster dialysate rate but same slow blood flow rate?? By the way, of course, we do understand that more time on the machine means more dialysis and more dialysis is always better but that's a separate issue for us right now (husband has been getting very good labs with his current treatment plan).

Anyways, I can give NxStage a call but am hoping to hear from one of you first...your thoughts and/or answers or experience with the new "S" cycler. Thanks.
If you are doing well with current prescription , why change anything. Just use the new machine at the same settings as the old one. Going faster with the same volume dialysate gains nothing and probably loses some effectiveness.

obsidianom: We didn't ask for the new cycler. I only found out that we are getting it because a courier happened to call to say he had a delivery for us. Since we already received our monthly inventory, I called the courier to ask what exactly he would be delivering. He said the boxes read "SAK 402" on them. That prompted me to call NxStage and sure enough, they said we would be getting the new S cycler and it requires the new SAK's. So then...that prompted me to call our clinic and sure enough, it was "oops, we meant to tell you". Needless to say, I am disappointed in our clinic for not discussing this with us ahead of time so that WE could make an informed decision. The nurse said the new cycler might shorten the treatment time so that it might take off some of the burden since we dialyze my husband after work (we are up til late at nite). Well, this all sounds wonderful but not if it's going to affect my husbands health! I have so many questions and of course, we will have to wait to see how his labs turn out after 30 days but I agree with you, shorter treatment time means only that; shorter treatment time. Does not necessarily equate to "better" dialysis. I already know we do not want to even attempt 4xweek. Anyways, after I made some phonecalls, delivery of the new cycler and SAK's won't be for 2 more weeks. We live in a small apartment and since we just got our monthly inventory... well...
« Last Edit: July 24, 2014, 04:18:17 PM by PrimeTimer » Logged

Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Pod99966
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« Reply #37 on: July 24, 2014, 05:29:06 PM »

Well I have to say, I have been on the "S" u it since the beginning of May. So that is 2 months worth of labs on the new machine that I can compare with the old machine. The "S" machine seems slightly more effective than the old machine. And I am running the same basic prescription, only with faster distillate and bloodflow rates
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obsidianom
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« Reply #38 on: July 25, 2014, 06:39:10 AM »

Labs are basically useless in this case. Kt/V is a useless number as it measures urea clearance and by now we all should know that is useless. I reality there is no one test for adaquacy for dialysis. Yes we measure phosphorus and potassium etc. . The real toxins are not easily measured. So labs are not a great measure of dialysis adaquacy. Urea is easily cleared and is not really toxic.
In the end we have to go by clinical feel as much as anything. To truly test the adaquacy would require much more sophisticated tests and cost.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
obsidianom
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« Reply #39 on: July 25, 2014, 06:43:15 AM »

Prime timer, the other issue is your dialysate. You are using only 30 liters. My tiny wife who weighs 55 kilos uses 30 liters. So unless your husband is that small, I am betting you are not using enough volume. That may explain the numbers. My wifes Kt/V (for all its worth) is over 3.0. That is with 5 days on nxstage at 3.5 hours , blood speed 340.   Anyone bigger than my wife should be on higher volume, especially males.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
PrimeTimer
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« Reply #40 on: July 25, 2014, 07:03:34 AM »

Prime timer, the other issue is your dialysate. You are using only 30 liters. My tiny wife who weighs 55 kilos uses 30 liters. So unless your husband is that small, I am betting you are not using enough volume. That may explain the numbers. My wifes Kt/V (for all its worth) is over 3.0. That is with 5 days on nxstage at 3.5 hours , blood speed 340.   Anyone bigger than my wife should be on higher volume, especially males.
My husband is 56 yrs old, 6 feet tall, dry weight 100 kg, Type II Diabetes with Stage 5 ESRD. Perhaps you and Simon Dog's suggestion to use any time we uh, "save" on the new S cycler to put towards actually doing more treatment. For example, right now we run 3.35-3.50 hours. If on the new S cycler we end up finishing 30 liters in 2.50 hours, maybe we could increase his volume to 40 liters and run 3.50 hours (and of course, stay on the 5xweekly schedule). It will be interesting. Right now, on our current treatment plan he is feeling good and able to work fulltime. He says he feels his best right after treatment but we finish late at nite so usually just unwind watching tv or reading and then off to bed. But he's able to be up early in the morning for work and he's very active. He says he really doesn't want to do more than 4 hours of treatment at a time because it's awfully hard for him to sit that long in his recliner and I can certainly understand that.     
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
obsidianom
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« Reply #41 on: July 25, 2014, 09:35:02 AM »

You are WAY under treating him. I ran your numbers and conservatively you are low.
I cant give direct advice but if it were me at his size I would either do 40 liters at 11.4 liters per hour (old system machine) for 3.5 hours or on the high speed machine 50 liters at 3 hours , speed 16.7 liters per hour.
So with the high speed machine I can cut half hour off time and add dialysate to get good treatment.
Bottom line, 30 liters is way to little dialysate. That is why you saw the numbers better on the bigger hospital machine.
If my tiny wife uses 30 liters , a large male should be WAY more.
CHECK THE ONLINE CALCULATOR  and talk to your team about this.You can do better now
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Hemodoc
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« Reply #42 on: July 25, 2014, 10:50:29 AM »

You don't need a system S to run 40 liters in 4 hours. I run that since 2009 on the regular System One right now.

I would like to go to a higher dialysate, but the sodium levels are too high for me in the dialysate and I get a salt load whenever I go to 45 liters which I also have done on the regular System One. In fact, I ran 47 liters once in about the same time as the 40 liters with an FF of 55%.

If you have the System S, it can go up to 18 Liters per hour. Running it at 15 liters per hour, you could easily do 60 liters in 4 hours. That will come close to approximating in-center machine clearances. That was my goal but the sodium levels are simply too high.
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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.
PrimeTimer
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« Reply #43 on: July 25, 2014, 11:53:23 PM »

You don't need a system S to run 40 liters in 4 hours. I run that since 2009 on the regular System One right now.

I would like to go to a higher dialysate, but the sodium levels are too high for me in the dialysate and I get a salt load whenever I go to 45 liters which I also have done on the regular System One. In fact, I ran 47 liters once in about the same time as the 40 liters with an FF of 55%.

If you have the System S, it can go up to 18 Liters per hour. Running it at 15 liters per hour, you could easily do 60 liters in 4 hours. That will come close to approximating in-center machine clearances. That was my goal but the sodium levels are simply too high.

Hemodoc: You bring up sodium levels. This concerns me as my husband has high blood pressure. He does 30 liter treatments right now and we are being told that he will continue doing 30 liter treatments on the new S Cycler. But...if we do more volume to get better dialysis (for instance, 40-45 liter treatments), then if I understand correctly, this would mean he would be getting more sodium (in addition to more aluminum) if we stay with the Pureflow SAK's? Or does the issue of increased sodium apply to the pre-mixed bags as well? This whole issue surrounding aluminum levels (and now sodium) is pretty scary and I would hate for my husband to have to go back to doing in-center just because we couldn't handle continuously hanging 30 or more liters of bags every day.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
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« Reply #44 on: July 26, 2014, 01:24:59 AM »

Dear Prime Timer,

Both Pureflow SAKS and the Bags have 140 mmol of sodium. My Plasma, or blood sodium runs around 135 which means I get an increase of salt with each treatment. For me, going too 45 liters was a bit too much.

140 mmol may be tolerated by you at 40 liters, not sure how you handle sodium.

Not sure why you would stay at 30 liter treatments. Are they going to run it faster? Reducing time is not a good survival strategy and is a uniquely American strategy. Other nations use longer sessions and have better outcomes.
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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.
obsidianom
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« Reply #45 on: July 26, 2014, 03:18:05 AM »

I am hoping this week to have some answers on the sodium issue. We tested my wife pre and post dialysis for sodium. I should have the results Tuesday. It will be interesting to see if her sodium rises during dialysis. My wife is the perfect test case for Nxstage as she is on a formula diet and intakes the exact same nutrients and electrolytes daily. Nxstage asked me to test her and we did it.   
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
obsidianom
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« Reply #46 on: July 26, 2014, 05:14:05 AM »

I want to write that everyone should look seriously at whether they are on the correct dose of dialysate. With the new speedier system S it is possible to get a higher dose of dialysate at same times as lower dose at slower speeds.
Nxstage has informed me that i am the person that they found has used the on line calculator MORE THAN ANYONE . PERIOD. I actually had a long conferance call with the person who designed the calculator . He asked for my input. So I have a lot of knowledge of the system.
I will add that when i do any calculations, including for my wife I do it with a Kt/V of 3.0. I dont buy the lower numbers as good enough. I wont settle for less than this for my wife and we are getting it consistantly with the calculator and on blood work.
As I have written numerous times , my wife uses 30 liters , 5 times per week and she is only 55 kg. (tiny).
I ran numbers for me at 77kg and 5ft 6 in. I am small male.  I found my numbers came to 40 liters at 3hr 50 min or 50 liters at 3 hour 10 min.
I also ran the same numbers for a female of the same size. A woman requires less dialysate due to less muscle mass.

With all this , I have studied the calculator and I dont think any decent size male should be below 40 liters and many of you should be at 50 liter s, at 5 days per week. Women should be at 30 to 40 liters. With the new faster machine you can get these volumes at same time as lesser volumes by running the same blood speed(I use 340) and speeding up the dialysate.
I beleive many of you out there are under treating. Check the on line calculator or have your team run numbers for you. Dont settle for a kt/v of 2.5 . That is barely adaquate dialysis. More dialysate gives better clearances and health. We saw a big improvement in my wife when we went from 20 to 30 liters. Time on machine is still important but volume is most important.
« Last Edit: July 26, 2014, 05:15:25 AM by obsidianom » Logged

My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Pod99966
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« Reply #47 on: July 27, 2014, 09:18:59 PM »

obsidianom, you do realize that the average person does not have access to the nxstage dosing calculator. You must be a licensed RN or MD to get access.
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obsidianom
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« Reply #48 on: July 28, 2014, 02:29:45 AM »

Have your doctor or nurse run the numbers for you. Its easy and takes a minute. Its worth doing it.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
caregivertech1
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« Reply #49 on: July 28, 2014, 03:54:06 PM »

When the registration for the dosing calc. asks for your "medical number" put your phone # in. It worked for me.
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