NxStage at home

[Zach]

Hubby was on home dialysis using Nxstage for a few months and was it rough going. He eventually went back to in-unit dialysis-his labs were horrible and he felt and looked awful. The concensus was that he was not getting good dialysis because he was too tall and too active for the machine.

That's a very interesting development.  How many hours and days per week was he on dialysis at home?  What kind of filters does Nxstage use?  Are there any comparisons to other filters on the market?  What is the URR for each treatment?

[KTangel]

Hubby was on home dialysis using Nxstage for a few months and was it rough going. He eventually went back to in-unit dialysis-his labs were horrible and he felt and looked awful. The concensus was that he was not getting good dialysis because he was too tall and too active for the machine.

That's a very interesting development.  How many hours and days per week was he on dialysis at home?  What kind of filters does Nxstage use?  Are there any comparisons to other filters on the market?  What is the URR for each treatment?

I will ask him and get back to you as to the URR and filters. He was dialysing six days a week for two hours each time. He was really disappointed when it did not work as well as he was hoping.

[KTangel]

Hubby was on home dialysis using Nxstage for a few months and was it rough going. He eventually went back to in-unit dialysis-his labs were horrible and he felt and looked awful. The concensus was that he was not getting good dialysis because he was too tall and too active for the machine.

That's a very interesting development.  How many hours and days per week was he on dialysis at home?  What kind of filters does Nxstage use?  Are there any comparisons to other filters on the market?  What is the URR for each treatment?

There is only one dialyzer that Hubby is aware of-we never drew a URR because he was not on it long enough to do so.

[Zach]

Usually URRs or Kt/Vs are drawn once a month.

There are other alternative dialysis machines available for home hemodialysis, other than NxStage.

[Hawkeye]

Here's a question for those of you using NxStage currently.  Does Medicare or Medicaid pitch in on the costs?  Since Gambro's machines have been caught in FDA hell Davita hasn't been able to get any home hemo machines unless they are from us, and there is such a backlog on home machine right now it's not even funny.  This has caused a huge surge in home hemo patients coming to Fresenius for their home treatments.  I know Fresenius has no problems with taking Davita's patients from them, but when I asked my boss why Davita doesn't hook them up with a company like NxStage he said they don't work with either of those programs.  Is this true?

[Epoman]

Here's a question for those of you using NxStage currently.  Does Medicare or Medicaid pitch in on the costs?  Since Gambro's machines have been caught in FDA hell Davita hasn't been able to get any home hemo machines unless they are from us, and there is such a backlog on home machine right now it's not even funny.  This has caused a huge surge in home hemo patients coming to Fresenius for their home treatments.  I know Fresenius has no problems with taking Davita's patients from them, but when I asked my boss why Davita doesn't hook them up with a company like NxStage he said they don't work with either of those programs.  Is this true?

From what I know Davita does offer NxStage. UCLA Davita in California should have their NxStage at home program running now. When I was calling different Davitas in California some indeed were using NxStage. But at the time none in So Cal. But like I said UCLA in So CAL should have there program running now.

[Black]

Hubby was on home dialysis using Nxstage for a few months and was it rough going. He eventually went back to in-unit dialysis-his labs were horrible and he felt and looked awful. The concensus was that he was not getting good dialysis because he was too tall and too active for the machine....

... He was dialysing six days a week for two hours each time. He was really disappointed when it did not work as well as he was hoping.

I thought the time on NxStage was usually 2.5 to 3+ hours?  Why was his prescription for only 2 hours?  Since he is large and active shouldn't it have been more???  I'm especially interested because my husband hopes to use a NxStage and he is about 230 to 250 pounds (we don't know his actual weight because his PKD kidneys weigh between 20 and 40 pounds).  Both of the directors and both of the social workers we spoke to at the two clinics using the NxStage, said that his size/weight would not be a problem.

[Epoman]

Hubby was on home dialysis using Nxstage for a few months and was it rough going. He eventually went back to in-unit dialysis-his labs were horrible and he felt and looked awful. The concensus was that he was not getting good dialysis because he was too tall and too active for the machine....

... He was dialysing six days a week for two hours each time. He was really disappointed when it did not work as well as he was hoping.

I thought the time on NxStage was usually 2.5 to 3+ hours?  Why was his prescription for only 2 hours?  Since he is large and active shouldn't it have been more???  I'm especially interested because my husband hopes to use a NxStage and he is about 230 to 250 pounds (we don't know his actual weight because his PKD kidneys weigh between 20 and 40 pounds).  Both of the directors and both of the social workers we spoke to at the two clinics using the NxStage, said that his size/weight would not be a problem.

No his size will be a problem, he will have to run longer due to his weight. He will definitely need 3+ hours of treatment and 20+ liters of solution. Yeah I am not sure about their 2 hour treatment comment, because 2 hours is like the minimum time in fact I only use 18 liters of dialysate fluid and even when I am taking off only maybe half a kilo I STILL run at least 2:20. I weigh just under 200lbs. Also the comment about "too tall and to active" makes no sense to me. I really think they were improperly trained. Honestly this is the FIRST bad experience I have heard about NxStage and I think there is more to the story.

[BigSky]

I have heard that the base used in NxStage isnt as good as regular bicarbonate base.  Is that true?

[Epoman]

I have heard that the base used in NxStage isnt as good as regular bicarbonate base.  Is that true?

I'm not sure on that BigSky, I do know there are a lot of rumors going around about NxStage and all I can say is I love it and I feel better on NxStage than with in-center hemo. I have only heard one person say they did not feel well on NxStage and I think that was operator error. Before I make any move in life I research the hell out of it and I researched the NxStage extensively.

[Panda_9]

What sort of maintenance/cleaning (if any) is needed for the NxStage? Apart from the obvious external cleaning.

[Black]

Hubby was on home dialysis using Nxstage for a few months and was it rough going. He eventually went back to in-unit dialysis-his labs were horrible and he felt and looked awful. The concensus was that he was not getting good dialysis because he was too tall and too active for the machine....

... He was dialysing six days a week for two hours each time. He was really disappointed when it did not work as well as he was hoping.

I thought the time on NxStage was usually 2.5 to 3+ hours?  Why was his prescription for only 2 hours?  Since he is large and active shouldn't it have been more???  I'm especially interested because my husband hopes to use a NxStage and he is about 230 to 250 pounds (we don't know his actual weight because his PKD kidneys weigh between 20 and 40 pounds).  Both of the directors and both of the social workers we spoke to at the two clinics using the NxStage, said that his size/weight would not be a problem.

No his size will be a problem, he will have to run longer due to his weight. He will definitely need 3+ hours of treatment and 20+ liters of solution. Yeah I am not sure about their 2 hour treatment comment, because 2 hours is like the minimum time in fact I only use 18 liters of dialysate fluid and even when I am taking off only maybe half a kilo I STILL run at least 2:20. I weigh just under 200lbs. Also the comment about "too tall and to active" makes no sense to me. I really think they were improperly trained. Honestly this is the FIRST bad experience I have heard about NxStage and I think there is more to the story.

Thanks, I really appreciate your reply here.  But I don't think he will consider the increased time a problem.  Due to the fatigue which comes with the PKD he already spends more time than that in his "easy chair" dosing, watching TV, and on the computer.

I agree about the "too tall and too active" -- and two hours  doesn't make sense to me.  Why wouldn't they just increase the prescribed time to 3 hours, which would give him 6 more hours of dialysis each week?

I do worry about the first weeks of dialysis for my husband.     I've heard and read about the problems with fistulas, etc., but the thing which worries me the most is getting the prescription right -- enough dialysis to make him feel better and keep him healthy, but not too much where he has to go through the fatigue, crashes and cramps.    We all want to shield our loved ones from pain and stress, and I know I can't, but I still worry for him anyway.

I know I'm going to be a basket case that first week or two in center, and if he can get a NxStage, during the training period I probably won't sleep, and that first week home I'll probably drive all of you nuts.  He lives with the problem so I try to do the worrying for both of us, and I'm pretty good at it.   Anytime anyone says there is a problem with home dialysis I get apprehensive and the suggestion that NxStage won't work is really scary.     If he can't get a NxStage, he can't go back to work.  He loves working and really doesn't want to retire permanently.

Thanks again, Epoman.  Your reassurance is greatly appreciated.

[KTangel]

Hubby was on home dialysis using Nxstage for a few months and was it rough going. He eventually went back to in-unit dialysis-his labs were horrible and he felt and looked awful. The concensus was that he was not getting good dialysis because he was too tall and too active for the machine....

... He was dialysing six days a week for two hours each time. He was really disappointed when it did not work as well as he was hoping.

I thought the time on NxStage was usually 2.5 to 3+ hours?  Why was his prescription for only 2 hours?  Since he is large and active shouldn't it have been more???  I'm especially interested because my husband hopes to use a NxStage and he is about 230 to 250 pounds (we don't know his actual weight because his PKD kidneys weigh between 20 and 40 pounds).  Both of the directors and both of the social workers we spoke to at the two clinics using the NxStage, said that his size/weight would not be a problem.

No his size will be a problem, he will have to run longer due to his weight. He will definitely need 3+ hours of treatment and 20+ liters of solution. Yeah I am not sure about their 2 hour treatment comment, because 2 hours is like the minimum time in fact I only use 18 liters of dialysate fluid and even when I am taking off only maybe half a kilo I STILL run at least 2:20. I weigh just under 200lbs. Also the comment about "too tall and to active" makes no sense to me. I really think they were improperly trained. Honestly this is the FIRST bad experience I have heard about NxStage and I think there is more to the story.

I don't think I would go as far as improper training! Hubby has worked and been a dailysis patient in this field for MANY years. I think that it is an individual thing and for some people it simply does not work as well as for others.
Epoman-you have been fortunate enough that it has worked for you and worked well.
Hubby was running for 2-3 hours a day depending.
I also think it is great that more people are looking into this and trying it as any option you may have as a dialysis patient should be looked into.

[KTangel]

Hubby was on home dialysis using Nxstage for a few months and was it rough going. He eventually went back to in-unit dialysis-his labs were horrible and he felt and looked awful. The concensus was that he was not getting good dialysis because he was too tall and too active for the machine....

... He was dialysing six days a week for two hours each time. He was really disappointed when it did not work as well as he was hoping.

I thought the time on NxStage was usually 2.5 to 3+ hours?  Why was his prescription for only 2 hours?  Since he is large and active shouldn't it have been more???  I'm especially interested because my husband hopes to use a NxStage and he is about 230 to 250 pounds (we don't know his actual weight because his PKD kidneys weigh between 20 and 40 pounds).  Both of the directors and both of the social workers we spoke to at the two clinics using the NxStage, said that his size/weight would not be a problem.

Hubby was 170-180lbs at the time and he was 6' 1"-if that helps. If both the directors and social workers have said it will not be a problem that I would go with that and give it a shot. I am sure that we could have managed to Hubby's height/weight/activity but those factors coupled with the timing issues (we both work full time, commute etc) made it not worth sticking with.

[billable]

Hi all.  First post here.  I have been lurking for a while though.

I am currently in training to dialyze my wife on Nxstage.  She has had quite a history with kidney problems.  Had one kidney removed when she was 8.  Went on home hemo 3 days per week 20 years ago for 10 months before receiving a cadaveric transplant.  Lost this kidney and went on CAPD in December 2005 and now we are finishing our 1st week of training on the nxstage at DCI in Nashville.

Her dad was also a in-center hemo patient before passing away in 2001.

I am amazed that anyone would feel that the in center 3 days per week hemo would give better results than the nxstage.  I also have done my homework on all the options available and I promise you that, as of today, there is not a better option available anywhere.

The filter is a high flux single use filter.  It filters out larger particles than the standard filters that are in use.  The treatment time is automatic based on the flow rates and volume parameters that you set.  Also, if you want to know what reimbursement is to your clinic, google ESRD calculator and download the spreadsheet.  You plug in your area and your patient information and it gives you a per treatment rate.  Remember that Medicare only reimburses for up to 3 treatments per week unless the clinic can justify more.  So that rate times 13 is what medicare allows per month.  Then Medicare pays the clinic 80% of that amount.  You or your secondary insurance is responsible for the other 20%.

[goofynina]

Hi Billable,  Great information given here but if you can please go to "Introduce Yourself" and tell us about your wife and yourself (one more time) Please   Looking forward to hearing more from you.

[billable]

Thanks.  Just posted there.  Thanks.

[billable]

I have heard that the base used in NxStage isnt as good as regular bicarbonate base.  Is that true?

The buffer used for the Nxstage dialysate is lactate based, not bicarbonate based. Peritoneal dialysate uses a lactate buffer as well.  The reason, as I understand it, is that lactate buffers are more stable than bicarbonate and, even though it is more expensive than bicarb, and it gives it a longer shelf life. 

Not sure why it wouldn't be as good.  Anyway, I think that when you use the pureflow unit, it may be a bicarbonate buffer.  Anybody know about this?

[Treasure]

Hi, all. Just wanted to add my little NxStage 

I was on the NxStage from September 2005 until January 2006. I stopped in January because I received my transplant.

 I weighed about 202 lbs during that time on NxStage. I ran about 3 1/4 to 3 1/2 hours-- six days a week.

 Since I did most of my runs on my own...it would take about 30mins before and after for setup/take down (this includes doing lab work, weight/bp/temp and throwing away the refuse).

I also worked full-time while doing this and managed to cook dinner at least twice a week...hehehe.

Yes, I am a Goddess and have super-human abilities. 

Having about 35 boxes of dialysate and other supplies in my livingroom and hallway, was a pain...especially since I lived in a single-wide mobile home, which was already packed to the gills with three family members and the remnants from the 3-bedroom house we used to live in.


I didn't have a great many problems with things until the very end...when my catheter started acting up.  At that time, my blood pressure was bottoming out-- even though I tried to keep an eye on it...actually, passing out was kinda like a thrill ride...I just had to be sure that I wasn't in the middle of clamping the clamps, or unhooking when I would go whoopsie daisy...whee!

I enjoyed the freedom, even though the days were quite long with work and dialysis.  My labs improved immensely...I had had uncontrolled blood pressure in-center...but on NxStage I didn't need any blood pressure meds.

As I have said elsewhere, my transplant only worked well a couple of months..and I just recently returned to in-center. But I did visit my NxStage clinic yesterday, and we're going to try to get me back in the program as soon as my buttonhole develops.

So yeah...I love NxStage, too!  Now, if only they would make it lighter so I could travel alone with it!

Michelle  ~  Treasure

[Gram2Twinz]

Hi everyone! What a great place to find answers! Love this place!

My husband and I are in training as we speak- preparing to come home with our new buddy- the NxStage One in a couple of weeks. We have well water, so we won't be having the Pureflow. We were disappointed about the "water" situation, but if we had to chose between using bags or continuing in-center dialysis- it was a no brainer- ship us a couple tons of water each month- we can find room for them at home! 
We have had a couple of issues with our Davita Center Training, but we are on the downhill side now. The machine is extremely "user-friendly" and the manuals make it easy to do troubleshooting and alarm resolutions- however we haven't had many of those.
We are the first "patient team" trained here in Rockford, IL for home hemo of any kind.  Our "trainer" has a background in PD and acute hemo- so she is very familiar with the process.
However- our problems have been with his "buttonholes".  He had a great set established 4 months prior to starting our training, but the center determined that another set would be ideal.  Establishing new buttonholes while training is not the best idea. It has caused several training sessions to be extended or prolonged. It seems that the staff at our center lis earning along with us how to use and how to create buttonholes.
As of this week, we- our trainer and ourselves have decided not to continue to establish the second set of buttonholes- This will allow us to begin doing our own needles, which we haven't even tried yet!
Wish us luck as we continue on with our training, working towards the goal of freedom that will be enjoyed when we can bring our dialysis buddy home with us!

 

[Black]

... We have well water, so we won't be having the Pureflow. ...

NxStage machines can be used with well water.  We have well water and are using the PureFlow.  Sorry this is brief but it's late and I should have been in bed hours ago.    Glad to have you here.

[jbeany]

I'm on well water as well.  It just means the filter packs run out faster, but they aren't that hard to change.  Get some samples tested - you might still be able to do the Pureflow, which is a lot better than the bags in terms of ease of use.