I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: cev on August 01, 2006, 06:12:12 AM
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Hi Epoman - missing your journal - how is home dialysis going?
what do you think about a place for home NxStage users to kick around how we handle little (and big too) mishaps and machine and supply issues that come up daily -- just a place to pick each others brain and maybe hold a hand or two?
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Hi Epoman - missing your journal - how is home dialysis going?
what do you think about a place for home NxStage users to kick around how we handle little (and big too) mishaps and machine and supply issues that come up daily -- just a place to pick each others brain and maybe hold a hand or two?
Well I have had 3 home sessions since we've been home and I tell you, it's been wonderfull I love doing it at home. My blunts have been going in perfect everytime. This section is for Nxstage users too! However if enough members here wish to have a Nxstage section I may add it. There are not very many nxstage users here currently. So if you are a nxstage user and wish to see a section for nxstage users only, please reply here and let me know.
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I asked my head nurse (who I hardly ever see) if NxStage is available in Canada and she said it is! She said it is already in London, ON and Toronto ON! So maybe I will have a chance to go on NxStage one day! I asked if that is the one that does not need any plumbing modifications and she said yes. That is the only kind I would be able to have in my building! :)
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I asked my head nurse (who I hardly ever see) if NxStage is available in Canada and she said it is! She said it is already in London, ON and Toronto ON! So maybe I will have a chance to go on NxStage one day! I asked if that is the one that does not need any plumbing modifications and she said yes. That is the only kind I would be able to have in my building! :)
According to NxStage they are currently ONLY in the USA, I think the "Head" nurse is thinking of the AKSYS machine which is available in other places than the USA. If fact I spoke with the rep just the other day and he says it's in the works to go global, but not right now. When I asked my head nurse about nxstage she too thought I meant Aksys as well, she had no idea what a nxstage was. I will call a contact of mine at nxstage to get you a definitive answer about a Canada launch. :) I think it is great you want to try. I would start learning to sticking yourself ASAP, then use a buttonhole, then when it comes to Canada you will be trained MUCH sooner. :)
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I asked my head nurse (who I hardly ever see) if NxStage is available in Canada and she said it is! She said it is already in London, ON and Toronto ON! So maybe I will have a chance to go on NxStage one day! I asked if that is the one that does not need any plumbing modifications and she said yes. That is the only kind I would be able to have in my building! :)
According to NxStage they are currently ONLY in the USA, I think the "Head" nurse is thinking of the AKSYS machine which is available in other places than the USA. If fact I spoke with the rep just the other day and he says it's in the works to go global, but not right now. When I asked my head nurse about nxstage she too thought I meant Aksys as well, she had no idea what a nxstage was. I will call a contact of mine at nxstage to get you a definitive answer about a Canada launch. :) I think it is great you want to try. I would start learning to sticking yourself ASAP, then use a buttonhole, then when it comes to Canada you will be trained MUCH sooner. :)
Awwww :( Well better for me to find out here than get my hopes up and then get disappointed right? :-\
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Angie, have you checked to see ( personally ) that if NxStage was in fact available in Canada? Or are you just going by word of mouth?
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I asked my head nurse (who I hardly ever see) if NxStage is available in Canada and she said it is! She said it is already in London, ON and Toronto ON! So maybe I will have a chance to go on NxStage one day! I asked if that is the one that does not need any plumbing modifications and she said yes. That is the only kind I would be able to have in my building! :)
According to NxStage they are currently ONLY in the USA, I think the "Head" nurse is thinking of the AKSYS machine which is available in other places than the USA. If fact I spoke with the rep just the other day and he says it's in the works to go global, but not right now. When I asked my head nurse about nxstage she too thought I meant Aksys as well, she had no idea what a nxstage was. I will call a contact of mine at nxstage to get you a definitive answer about a Canada launch. :) I think it is great you want to try. I would start learning to sticking yourself ASAP, then use a buttonhole, then when it comes to Canada you will be trained MUCH sooner. :)
Awwww :( Well better for me to find out here than get my hopes up and then get disappointed right? :-\
Hi Angie, I called nxstage a few minutes ago (NxStage users are given a 24/7 hot-line) I asked the nxstage rep if they had any machines in use outside the USA, he said no, he also said they actually don't even offer NxStage in Alaska or Hawaii yet either. They just don't have the infrastructure in place yet to go global.
I think it's sad how uninformed the "Head' nurse is at your center. Talking about things she has no idea about. It just goes to show how many nurses, techs, and even some doctors do not keep themselves educated on dialysis options or medical advances. Be sure to let her know she was wrong.
But sorry Angie for the bad news.
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Kinda makes you wonder if it was in fact NxStage that Angie's nurse was talking about or some other brand? At this point, it would appear that it could have been a home hemo machine but from another manufacture?
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Kinda makes you wonder if it was in fact NxStage that Angie's nurse was talking about or some other brand? At this point, it would appear that it could have been a home hemo machine but from another manufacture?
There is nothing to wonder about, Angies nurse is full of shit plain and simple. >:D Because Angie ASKED "I asked if that is the one that does not need any plumbing modifications and she said yes." And the nurse replied yes that is the one. NxStage is the only home machine out right now that does not need any plumbing mods. There is this system: Renal Solutions Allient System Here is a link: http://www.renalsolutionsinc.com/home/allientsystem.html This machine is currently in clinical trials but I am pretty sure it's only in the USA as well.
If you don't believe me feel free to call nxstage yourself during their normal business hours. :)
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I E mailed Alvin Armer from nxstage about when when it might be available in oz (he posted his address on this site ) and he said not yet but there are plans to take it Global but at the moment it is only available in the US.
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thankyou for that info charee!
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Ahh, okay. Thanks guys. It's always good to be "properly" informed.
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Ya I believe you. Since it is NOT available (home hemo) at ALL in my city YET .. probably the nurses have been informed of very VERY little. So it is very likely that she was misinformed but since she is the HEAD nurse (she runs the unit so maybe head nurse is not actually her proper title) she probably just didn't want to SOUND uninformed.
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I was talking to my "water lady" this morning and asked her had she heard of the NxStage and she said ohh thats how they used to do it in the good ol days. So why the hell did they stop!!! >:( We are in a major drought at the moment and there is nothing on the cards to reduce water usage via dialysis. Im sure with all the people on dialysis here that we would be using a heck of alot of water. If we could get rid of the need for taps running for dialysis machines, then think of all the water we would be saving. But nooooo the government are too caught up in recycling sewerage water, opening more child care centres and what not. Why cant we salvage some of the water we have, and if necessary, recycle it. Makes me sooo mad!! I bed John Howard doesnt even know what dialysis is! >:(
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Makes me sooo mad!! I bed John Howard doesnt even know what dialysis is! >:(
Who is John Howard?
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PMSL Angie, its our Prime Minister.
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PMSL Angie, its our Prime Minister.
What? Not of Canada! :-[ :-[.. OH wait, I looked it up! Okay the PM of Australia (http://www.pm.gov.au/)! Sandman was asking me.
okay .. uh .. what is PMSL? ???
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okay .. uh .. what is PMSL? ???
Got me. ??? Waiting to hear the answer to that one myself.
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Sorry PMSL=pis*ing myself laughing
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Sorry PMSL=pis*ing myself laughing
This one needs to be added to Rerun's thread about acronyms!
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Sorry PMSL=pis*ing myself laughing
This one needs to be added to Rerun's thread about acronyms!
There is a thread of acronyms?? ??? :P
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Sorry PMSL=pis*ing myself laughing
This one needs to be added to Rerun's thread about acronyms!
There is a thread of acronyms?? ??? :P
hmmmf, and I thought you cared about this site. ::)
;) ;D
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There is a thread of acronyms?? ??? :P
hmmmf, and I thought you cared about this site. ::)
;) ;D
:P
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There is a thread of acronyms?? ??? :P
hmmmf, and I thought you cared about this site. ::)
;) ;D
:P
As if you couldn't tell. ::) ;D
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Well I have had 3 home sessions since we've been home and I tell you, it's been wonderfull I love doing it at home. My blunts have been going in perfect everytime. This section is for Nxstage users too! However if enough members here wish to have a Nxstage section I may add it. There are not very many nxstage users here currently. So if you are a nxstage user and wish to see a section for nxstage users only, please reply here and let me know.
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. (Not to mention that we both work full time and commute over 45 minutes to and from work-we were finishing at 11:30pm every night!)
EDITED: Fixed quote tag - Goofynina/Moderator
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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?
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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.
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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.
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Usually URRs or Kt/Vs are drawn once a month.
There are other alternative dialysis machines available for home hemodialysis, other than NxStage.
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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?
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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.
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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. ???
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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.
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I have heard that the base used in NxStage isnt as good as regular bicarbonate base. Is that true?
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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.
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What sort of maintenance/cleaning (if any) is needed for the NxStage? Apart from the obvious external cleaning.
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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. :o 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. ;D He lives with the problem so I try to do the worrying for both of us, and I'm pretty good at it. :lol; Anytime anyone says there is a problem with home dialysis I get apprehensive and the suggestion that NxStage won't work is really scary. :o 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. :angel; Your reassurance is greatly appreciated.
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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.
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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.
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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%.
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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 :2thumbsup; Looking forward to hearing more from you.
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Thanks. Just posted there. Thanks.
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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?
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Hi, all. Just wanted to add my little NxStage :twocents;
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
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Hi everyone! What a great place to find answers! Love this place! :clap;
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! :P
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!
:beer1;
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... 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. :welcomesign; Glad to have you here.
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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.