I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: obsidianom on October 05, 2014, 09:07:28 AM
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Since I am now using bags for my wifes dialysis (now starting week 3) , I am interested in what others out there are using for dialysate and why.
The bags are a lot more work and require a lot of space and produce a lot more trash.
I am hoping my wifes aluminum which was last tested at 41 a few weeks ago on Pureflow will go down with the bags. We are testing this week . It will be about 2 and a half weeks on the bags alone when we test.
Part of my interest is in figuring out what we will do after the initial month on bags is over. Obviously we will look at what occurs on the aluminum test this week. But I am also interested in others experiences with this. Your input is appreciated.
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Where is everyone out there? NO RESPONSE AT ALL ? Where did everyone go who dealt with aluminum issues?
I really am hoping t get some feedback on what is going on as we are not sure what to do with my wife after the initial month on the bags. We are in our third week now. Is everyone out there using the pureflow???
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My answers:
- Was on Pureflow; not noticing any problems
- Clinic RN called to advise of AL issue; I was at 14 or 17 (forget which)
- Got new SAKS; tested in 3 months; AL at 10.
- Doing the Alfred E. Neuman thing now
- Clinic tests AL annually, next reading in January
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I'm still using Pure Flow, and bags (I'm not strong enough to hang them everyday etc) No AL issues thankfully. Did I miss why the AL is in the sacks in the first place? And why they can't filter it out?
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I'm still using Pure Flow, and bags (I'm not strong enough to hang them everyday etc) No AL issues thankfully. Did I miss why the AL is in the sacks in the first place? And why they can't filter it out?
I am interested in why you use saks and bags? Why not just use the saks?
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Just to weigh in Dr. O, we're still using Purflow for the first 20L followed by 2 bags....one on the warmer and one hanging....to complete each 30L treatment. AL levels averaging mid teens. BTW we are at Qb 350 FF 45%. Venous pressure averages 165....arterial 125, a dramatic drop from when I first jumped on this site. We were Qb 500 with pressures of 290(V) and 190(A). Back to the Aluminum, we had a new NxStage couple that started in a nearby rural county around July (after the recall letter) and their level went from being OK to being high out of limits (sorry I don't have the numbers). Their neph told them to get rid of all their AL cooking ware etc. etc. When you think about it, Nxstage won't tell them their product is contaminated and obviously FMC didn't bother to disclose it either. Just more proof the SAK's are still contaminated.
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Just to weigh in Dr. O, we're still using Purflow for the first 20L followed by 2 bags....one on the warmer and one hanging....to complete each 30L treatment. AL levels averaging mid teens. BTW we are at Qb 350 FF 45%. Venous pressure averages 165....arterial 125, a dramatic drop from when I first jumped on this site. We were Qb 500 with pressures of 290(V) and 190(A). Back to the Aluminum, we had a new NxStage couple that started in a nearby rural county around July (after the recall letter) and their level went from being OK to being high out of limits (sorry I don't have the numbers). Their neph told them to get rid of all their AL cooking ware etc. etc. When you think about it, Nxstage won't tell them their product is contaminated and obviously FMC didn't bother to disclose it either. Just more proof the SAK's are still contaminated.
1. I am glad to see your pressures are so much lower. That will save the fistula from damage . Staying under 200 , especially venous is key. We run blood at 340 and venous pressure usually is in the 180s . My wife has small veins.
2. I am quite interested in the new Nxstage patient you mentioned. That sounds like the saks caused the jump as GI absorbtion of aluminum is minimum.
What is your aluminum running with your setup?
3. I just drew aluminum today on my wife. We will get it back at clinic next tuesday. We are 2.5 weeks into the bags at 6 per day. (no pureflow at all). This will be quite interesting. Then I have to decide where to go after that. I have about 70 boxes of bags upstairs. (almost 5 weeks worth)
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I really hope its a lot lower AL Obsi. BTW I do bags, and sacks mixing, cos I hate the noise of the 'making batch' , but I also hate the mess of the bag, and the 'hanging of the bags (just physical), and by mixing, and matching, the amount of hate is spread out, and tolerable.
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I really hope its a lot lower AL Obsi. BTW I do bags, and sacks mixing, cos I hate the noise of the 'making batch' , but I also hate the mess of the bag, and the 'hanging of the bags (just physical), and by mixing, and matching, the amount of hate is spread out, and tolerable.
Do you know what your aluminum is running?
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I know it was fine, cos I checked it against the NICE guidelines, but I forgot the figure. I mean it was the first time ever in 17+ years D that it was tested, so I'm not even embarrassed that I forgot. I'll call the nurse and tell you Monday
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Just to weigh in Dr. O, we're still using Purflow for the first 20L followed by 2 bags....one on the warmer and one hanging....to complete each 30L treatment. AL levels averaging mid teens. BTW we are at Qb 350 FF 45%. Venous pressure averages 165....arterial 125, a dramatic drop from when I first jumped on this site. We were Qb 500 with pressures of 290(V) and 190(A). Back to the Aluminum, we had a new NxStage couple that started in a nearby rural county around July (after the recall letter) and their level went from being OK to being high out of limits (sorry I don't have the numbers). Their neph told them to get rid of all their AL cooking ware etc. etc. When you think about it, Nxstage won't tell them their product is contaminated and obviously FMC didn't bother to disclose it either. Just more proof the SAK's are still contaminated.
My wife averaged mid teens(down from mid 20's) using 1 bag. We used 2 bags for the last 4-5 weeks and will have the Al result Mon. or Tue. The mid teens numbers were from SAK 302 Lots 40579167 and 40679159. The 2 bag set up was mostly lot 40879156. Stay tuned for the result.
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Just to weigh in Dr. O, we're still using Purflow for the first 20L followed by 2 bags....one on the warmer and one hanging....to complete each 30L treatment. AL levels averaging mid teens. BTW we are at Qb 350 FF 45%. Venous pressure averages 165....arterial 125, a dramatic drop from when I first jumped on this site. We were Qb 500 with pressures of 290(V) and 190(A). Back to the Aluminum, we had a new NxStage couple that started in a nearby rural county around July (after the recall letter) and their level went from being OK to being high out of limits (sorry I don't have the numbers). Their neph told them to get rid of all their AL cooking ware etc. etc. When you think about it, Nxstage won't tell them their product is contaminated and obviously FMC didn't bother to disclose it either. Just more proof the SAK's are still contaminated.
My wife averaged mid teens(down from mid 20's) using 1 bag. We used 2 bags for the last 4-5 weeks and will have the Al result Mon. or Tue. The mid teens numbers were from SAK 302 Lots 40579167 and 40679159. The 2 bag set up was mostly lot 40879156. Stay tuned for the result.
I am interested in your test results.
My question is, if you are worried about aluminum in the saks, why use any? The way you are mixing would seem counter productive. You still are using several saks. If they really are contaminated then you still are getting aluminum.
I am waiting on our results Tuesday also. If my wifes aluminum drops significantly on the bags, we will continue on 100% bags. If there is no significant change from the last test using 6 bags per day, then i would probably go back to the pureflow as we wouldnt have gained anything.
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I had no problems with the Pureflow. I use both just depending on if I made up a new batch or not!
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:bow;I had one raised level, but since it is only tested once a year, who knows if it was higher? Since then it has been measured more frequently and I have had no issues so for me, I still use Pureflow.
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My question is, if you are worried about aluminum in the saks, why use any? The way you are mixing would seem counter productive. You still are using several saks. If they really are contaminated then you still are getting aluminum.
I am waiting on our results Tuesday also. If my wifes aluminum drops significantly on the bags, we will continue on 100% bags. If there is no significant change from the last test using 6 bags per day, then i would probably go back to the pureflow as we wouldnt have gained anything.
Our neph is not unhappy with mid teens for Al for now vs mid 20's a few months ago. My thinking is the 10 liters of bags at the end is better than all 30 liters of contaminated saks. Like you I hate using 6 bags per treatment but trust me I'll go to 100% bags if this problem isn't cleared up by NxStage.
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My AL was 0.7 mmol/liter, the max in UK is 2.0 mmol/liter. I'm having my first ever repeats done later this month. Still mixing, and matching.
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WELL HERE IT IS-------
My wifes aluminum DROPPED to 22 from 41 and a high of 44 . That is just with 2.5 weeks of bags. WOW!!!
My wife had been running 38 to 44 over the past 5 months on the pureflow. Even after we switched to zero water it was up at 41 last month.
Also her hemoglobin jumped at the same time now from 9.8 to 11. So the aluminum seemed to keep her anemic despite the EPO.
Ok so now here is my thought and question. Why are the other patients in our area who are still using Pureflow having aluminums below 15. ? Is it because my wife started higher due to more contaminated saks? The others around my area are doing fine on pureflow as are some others here on this board.
Now the issue is was it the actual saks that were the issue or is it my well water that is high in aluminum and the PAKS just arent good enough at removing it. That is the real question. The aluminum is coming either from my water or from the saks themselves. No way to tell.
For now we are staying on the bags for another month and retest . We are hoping aluminum will drop below 10 if possible. Then we can retry the pureflow and retest to see if aluminum rises.
Any comments are welcome.
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Wow that is a massive drop. I would stay with the bags for now. Do I remember correctly that you checked the cleatance of the paks before?
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Awesome Dr. O! We should have results tomorrow. I guess I'm hoping for a number south of 15. Our neph says it would take at least several months to get below 10 with no sac contamination. His thinking is dialysis removes Al from the blood only and not from the tissue where it leeches back into the blood and eventually cleared.
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Awesome Dr. O! We should have results tomorrow. I guess I'm hoping for a number south of 15. Our neph says it would take at least several months to get below 10 with no sac contamination. His thinking is dialysis removes Al from the blood only and not from the tissue where it leeches back into the blood and eventually cleared.
I went from 16 to 8 in two months. Since I am off the PureFlow, we will check again in 3 months which is reasonable. We know the source of the aluminum.
Dr. O, there is NO SAFE level of aluminum. If you are at 15, that is way too high. You should be less than 5, or essentially undetectable. Anything higher than that is unaccepatable.
It takes 7 years to clear from the brain and about 1 year for a bone biopsy to be negative.
Lastly, are you now still happy with NxStage after they have poisoned your wife for another 5 months after the recall? Where is the outrage?
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WELL HERE IT IS-------
My wifes aluminum DROPPED to 22 from 41 and a high of 44 . That is just with 2.5 weeks of bags. WOW!!!
My wife had been running 38 to 44 over the past 5 months on the pureflow. Even after we switched to zero water it was up at 41 last month.
Also her hemoglobin jumped at the same time now from 9.8 to 11. So the aluminum seemed to keep her anemic despite the EPO.
Ok so now here is my thought and question. Why are the other patients in our area who are still using Pureflow having aluminums below 15. ? Is it because my wife started higher due to more contaminated saks? The others around my area are doing fine on pureflow as are some others here on this board.
Now the issue is was it the actual saks that were the issue or is it my well water that is high in aluminum and the PAKS just arent good enough at removing it. That is the real question. The aluminum is coming either from my water or from the saks themselves. No way to tell.
For now we are staying on the bags for another month and retest . We are hoping aluminum will drop below 10 if possible. Then we can retry the pureflow and retest to see if aluminum rises.
Any comments are welcome.
My husband is at a 15 using Pureflow SAK 302's, 30-liter treatments. His Neph is okay with that level. They never did a baseline when he first started dialysis Sept 2013 so the 15 is now his baseline. They will test again in another month or so to see if it has increased/decreased/maintained. We are now using SAK 402's doing 30-liter treatments. His Hemoglobin looks great at above goal at 11.1 and his phosphorous is 3.7 at goal and his wstd/Kt/V is at 2.43. He says he feels fine, still working a full time semi-physical job, says he feels like he did when he was still at Stage 3 ESRD compared to being Stage 5 now.
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WELL HERE IT IS-------
My wifes aluminum DROPPED to 22 from 41 and a high of 44 . That is just with 2.5 weeks of bags. WOW!!!
My wife had been running 38 to 44 over the past 5 months on the pureflow. Even after we switched to zero water it was up at 41 last month.
Also her hemoglobin jumped at the same time now from 9.8 to 11. So the aluminum seemed to keep her anemic despite the EPO.
Ok so now here is my thought and question. Why are the other patients in our area who are still using Pureflow having aluminums below 15. ? Is it because my wife started higher due to more contaminated saks? The others around my area are doing fine on pureflow as are some others here on this board.
Now the issue is was it the actual saks that were the issue or is it my well water that is high in aluminum and the PAKS just arent good enough at removing it. That is the real question. The aluminum is coming either from my water or from the saks themselves. No way to tell.
For now we are staying on the bags for another month and retest . We are hoping aluminum will drop below 10 if possible. Then we can retry the pureflow and retest to see if aluminum rises.
Any comments are welcome.
My husband is at a 15 using Pureflow SAK 302's, 30-liter treatments. His Neph is okay with that level. They never did a baseline when he first started dialysis Sept 2013 so the 15 is now his baseline. They will test again in another month or so to see if it has increased/decreased/maintained. We are now using SAK 402's doing 30-liter treatments. His Hemoglobin looks great at above goal at 11.1 and his phosphorous is 3.7 at goal and his wstd/Kt/V is at 2.43. He says he feels fine, still working a full time semi-physical job, says he feels like he did when he was still at Stage 3 ESRD compared to being Stage 5 now.
15 is an abnormal value. Your nephrologist would not want that for his aluminum level. Get a new nephrologist who will switch him to bags immediately.
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WELL HERE IT IS-------
My wifes aluminum DROPPED to 22 from 41 and a high of 44 . That is just with 2.5 weeks of bags. WOW!!!
My wife had been running 38 to 44 over the past 5 months on the pureflow. Even after we switched to zero water it was up at 41 last month.
Also her hemoglobin jumped at the same time now from 9.8 to 11. So the aluminum seemed to keep her anemic despite the EPO.
Ok so now here is my thought and question. Why are the other patients in our area who are still using Pureflow having aluminums below 15. ? Is it because my wife started higher due to more contaminated saks? The others around my area are doing fine on pureflow as are some others here on this board.
Now the issue is was it the actual saks that were the issue or is it my well water that is high in aluminum and the PAKS just arent good enough at removing it. That is the real question. The aluminum is coming either from my water or from the saks themselves. No way to tell.
For now we are staying on the bags for another month and retest . We are hoping aluminum will drop below 10 if possible. Then we can retry the pureflow and retest to see if aluminum rises.
Any comments are welcome.
My husband is at a 15 using Pureflow SAK 302's, 30-liter treatments. His Neph is okay with that level. They never did a baseline when he first started dialysis Sept 2013 so the 15 is now his baseline. They will test again in another month or so to see if it has increased/decreased/maintained. We are now using SAK 402's doing 30-liter treatments. His Hemoglobin looks great at above goal at 11.1 and his phosphorous is 3.7 at goal and his wstd/Kt/V is at 2.43. He says he feels fine, still working a full time semi-physical job, says he feels like he did when he was still at Stage 3 ESRD compared to being Stage 5 now.
15 is an abnormal value. Your nephrologist would not want that for his aluminum level. Get a new nephrologist who will switch him to bags immediately.
My husband is about to have a bad day. I'll let him know what you said about his aluminum level and that the neph he's had for several years is killing him.
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WELL HERE IT IS-------
My wifes aluminum DROPPED to 22 from 41 and a high of 44 . That is just with 2.5 weeks of bags. WOW!!!
My wife had been running 38 to 44 over the past 5 months on the pureflow. Even after we switched to zero water it was up at 41 last month.
Also her hemoglobin jumped at the same time now from 9.8 to 11. So the aluminum seemed to keep her anemic despite the EPO.
Ok so now here is my thought and question. Why are the other patients in our area who are still using Pureflow having aluminums below 15. ? Is it because my wife started higher due to more contaminated saks? The others around my area are doing fine on pureflow as are some others here on this board.
Now the issue is was it the actual saks that were the issue or is it my well water that is high in aluminum and the PAKS just arent good enough at removing it. That is the real question. The aluminum is coming either from my water or from the saks themselves. No way to tell.
For now we are staying on the bags for another month and retest . We are hoping aluminum will drop below 10 if possible. Then we can retry the pureflow and retest to see if aluminum rises.
Any comments are welcome.
My husband is at a 15 using Pureflow SAK 302's, 30-liter treatments. His Neph is okay with that level. They never did a baseline when he first started dialysis Sept 2013 so the 15 is now his baseline. They will test again in another month or so to see if it has increased/decreased/maintained. We are now using SAK 402's doing 30-liter treatments. His Hemoglobin looks great at above goal at 11.1 and his phosphorous is 3.7 at goal and his wstd/Kt/V is at 2.43. He says he feels fine, still working a full time semi-physical job, says he feels like he did when he was still at Stage 3 ESRD compared to being Stage 5 now.
15 is an abnormal value. Your nephrologist would not want that for his aluminum level. Get a new nephrologist who will switch him to bags immediately.
My husband is about to have a bad day. I'll let him know what you said about his aluminum level and that the neph he's had for several years is killing him.
I would not go over board on this. I agree with Hemodoc 15 is too high , but its not exactly lethal.
My suggesstion is to do what we did. Ask to go on bags or a month and retest. See if you can get it down . Then you can try going back to the saks after that and retest again. This is what we are doing.
I do have info that the saks should be improved in the next few weeks . So hopefully you wont need to stay on bags that long.
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The results of my wife's aluminum taken last week was 9. That's down from 17. That's the first result using a set up of 20L from pureflow and the last 10L from bags for a 30L treatment. We used this set up the entire month of September. That's the lowest level since Jan. 2013. I'm going to continue this a while longer. I also "heard" the sacs will be AL free by Fall.......and the leaves are changing.
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I don't know why the SAKs have aluminum in them at all but, I'm guessing it might have something to do with how dialysate in a SAK comes in a large plastic-type bag with many folds in it and is mixed with tap water in the Pureflow machine for 7-7.50 hours and the fact that the SAKs hold over 30 liters of fluid, compared to bags, which are much smaller and hold only 5 liters. Maybe the law requires anything over 5 liters to include aluminum in it for public safety reasons (to guard against bacteria ???), like city tap water is. I don't know...but what I DO know, is that my husband gets up at the crack of dawn every morning and feels up to working a fulltime semi-physical job and despite having an aluminum level of 15, he feels better now than before he started dialysis and his labs keep looking better and better each month. Go figure. His neph says he is an "exemplary patient". He doesn't want to hang bags and I can't and being in a small apartment, we also do not have the room for bags. At least not on any regular basis. He said if he had to, he'd go back to doing in-center and pray that his boss could accommodate such a schedule if he couldn't get in at a center that does extended hours beyond 5pm. Meanwhile, the chances of our being mugged or shot by thugs in the neighborhood seem quite high. There is nothing quite like being on a morning walk with your dog when suddenly and seemingly out of nowhere, thugs run past you and there are cops in every direction, including a helicopter overhead, with you and your dog standing literally in the middle of it all. It's a dark world, folks and having to fear aluminum ain't helping. :(
To make matters worse (and I'm being serious), I just read all the ingredients, contraindications and warnings that come with my asthma inhaler and come to find out, if asthma doesn't kill me the inhaler just might.
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I aggree a bit, Gambro, Fresenius, Baxter, they've all made "ridiculous "misstakes"", and poisoned us in some way or other, profit and health just don't mix. But it is us patients who have to keep opening our minds, and ring the bel etc
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I don't know why the SAKs have aluminum in them at all but, I'm guessing it might have something to do with how dialysate in a SAK comes in a large plastic-type bag with many folds in it and is mixed with tap water in the Pureflow machine for 7-7.50 hours and the fact that the SAKs hold over 30 liters of fluid, compared to bags, which are much smaller and hold only 5 liters. Maybe the law requires anything over 5 liters to include aluminum in it for public safety reasons (to guard against bacteria ???), like city tap water is. I don't know...but what I DO know, is that my husband gets up at the crack of dawn every morning and feels up to working a fulltime semi-physical job and despite having an aluminum level of 15, he feels better now than before he started dialysis and his labs keep looking better and better each month. Go figure. His neph says he is an "exemplary patient". He doesn't want to hang bags and I can't and being in a small apartment, we also do not have the room for bags. At least not on any regular basis. He said if he had to, he'd go back to doing in-center and pray that his boss could accommodate such a schedule if he couldn't get in at a center that does extended hours beyond 5pm. Meanwhile, the chances of our being mugged or shot by thugs in the neighborhood seem quite high. There is nothing quite like being on a morning walk with your dog when suddenly and seemingly out of nowhere, thugs run past you and there are cops in every direction, including a helicopter overhead, with you and your dog standing literally in the middle of it all. It's a dark world, folks and having to fear aluminum ain't helping. :(
To make matters worse (and I'm being serious), I just read all the ingredients, contraindications and warnings that come with my asthma inhaler and come to find out, if asthma doesn't kill me the inhaler just might.
The aluminum came from the lactate in the dialysate. The bags are made by PISA which uses a company named PURAC for its lactate. Purac makes aluminum free lactate. (there is a long invlolved story to this that I will leave out here). The saks are made by another company for Nxstage and the subcontractor who made the lactate had "issues" which cuased aluminum to be found in the dialysate. Its a long story that I just summerized. It shouldnt have happened.
The latest I have is that starting in October or so the Saks should be free of aluminum. Now I will still test as I dont trust this yet. So when we return to saks in the future we will test the aluminum monthly. That is what I recommend to everyone.
AS Hemodoc wrote, NO amount of aluminum is safe. Period!.
The aluminum in the blood should be below 10 or even 5. The effects are long term .
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Hope you are right, obsidianom. Let's hope for aluminum-free SAKs from NxStage and SOON! Stress from worrying about aluminum poisoning is like a killer in itself.
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I recently switched Home Dialysis Clinics and they needed to test my water all over again. So, even though I would prefer to use saks, I have a pallet full of bags sitting in my front yard because they won't fit in my house!
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We are still using bags. We had 60 delivered Thursday. They all had to be put upstairs. Real fun to haul up. My wifes aluminum is still up over 20 . This is taking a lONG time to clear out. I am so angry at Nxstage for it.
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My husband is supposed to train for nxstage sometime after Christmas. The bags are not approved by the FDA in Canada yet!! Guess the people who will be using the nxstage need to start lobbying the government!!