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Author Topic: My NxStage PureFlow Review: The Good, The Bad, and The Ugly! WARNING LONG!  (Read 32296 times)
Epoman
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« on: January 25, 2007, 01:47:28 AM »

MY 3,000+ word, PureFlow review - The Good, The Bad, and the Ugly.

The GOOD:

Well I finally went for my training for my PureFlow and you can't tell by the pictures you see on the net but it has a lot of connections. But it is all very easy to understand and my training literally just took a couple of hours and those 2 hours included friendly conversation. The PureFlow was very simple to hook up and the nice thing is that NxStage took the time to include MANY different types of hookups for the water supply and all are clearly labeled and have instructions. I literally attached the water supply to the main water supply hose under my sink in less than a couple of minutes. There are some things that you don't hear about the PureFlow, don't get me wrong, I don't have a problem with them but I wanted to make it known here. First off the NxStage says a "batch" will last for 72 hours, but what they don't tell you is that includes the 7-8 hours it takes to create a batch. So you are really looking at 64 hours, less than 3 days. What I am talking about is... A batch is enough dialysate for up to 3 treatments, if you use 20 liters each treatment. However those 3 treatments must be done within 64 hours. Also the "Pak" must be replaced every 12 weeks, and in some cities it must be changed sooner. From what I am hearing from others is that the "Pak" lasts more like 6 weeks. It all depends on how "hard" your cities water is. But it is not a big deal because it's not hard to change and is very easy to "prime". Priming the "pak" takes 2-3 hours all by itself before you can even create a batch. Also there is a sediment filter that needs to be changed once a year and that is very simple and just requires unscrewing the filter and screwing in a new one. The main benefit of the PureFlow is not having to hang those bags, boy that gets old after a while and I would use 4 bags every treatment. I just wish that a batch would be usable until it was ALL used up. if you don't you may end up have to wait while a new batch is created and that takes 7-8 hours. Another thing I like about the PureFlow is the waste line is permanent and does not have to be replaced weekly like the old waste line. I do wish that the water line was more of a hose and not plastic, since it can be damaged easily, if bent, but so far so good, just be sure to put it in a place that it will be safe. I also CUT the waste line AND water line so there wouldn't be to much extra unneeded length, I just used scissors, again very simple. I also like the look of the PureFlow, it blends in nicely with the surroundings.

After I got everything set up, it was time to Prime the "Purification Pak" remember I said it takes a little over 2 hours. So I slide the pak into the pureflow, connected a few cables and hit go. Very simple indeed. There is one connection that is a little difficult for some, you need to connect it at an angle and unless you get on the ground on your knees (not possible for me, wheelchair) it is very difficult to see, you need to attach it by "feeling" it, not seeing it. But after that it's relatively simple. You wait a couple to a few hours and it is all ready. Now the next step is to make a "Batch" The batch comes 2 per box and comes folded and when you place in it the PureFlow metal tub you unfold it partially. You have to unkink a couple of tubes and open the door on the control unit and place the tubes sort of like how you set up the NxStage Cycler, everything just pops in place. It really is user friendly. Then you attach a couple of more tubes, one to the purification pak and the other to the control unit. You see the "control unit" slides out of the PureFlow chassis, I guess to make it easier to transport, when the unit first came on the market it was one piece. Then you hit go and it will make some strange noises, really strange noises and do some self tests and then if everything is hooked up properly it will say "Making Batch..." then it is just a matter of waiting 7 to 8 hours. At the end of the 8 hours it will do a "conductivity" test and then it will prompt you to take a sample of the fluid for a Chloramines test, it is very easy to do. You just undo a tube from the control panel and squeeze a little drop of fluid on to a test strip and if it is clear (passes) you are good to go. Then you get your Nxstage Cycler primed and ready to go, and hook it to your Nxstage, You hit "GO" on your pureflow first, then press the "treatment" button on your NxStage. It's important to hit Go on the pureflow first before the nxstage cycler to avoid air detection alarms.

The BAD:

So how did my first treatments go? Well I primed my first purification pak and had no problem, I made my first batch and no problems. I went through my first batch pretty much alarm free. I did have one alarm, number "54" on my 2nd treatment, which means I had a leak in my purification pak and after several tries the alarm would not clear. I called NxStage and they said take the pak out and wipe up any water underneath the pak, well it turns out I had not connected the waste line tight enough and it had been dripping and caused a puddle under the pak and set off the alarm. Once we tightened the waste line connection and dried under the pak, all was fine. So on my first batch (3 treatments) I got one alarm but that was my mistake because I didn't tighten the waste line enough. Over all a very pleasant experience.

What about batch number 2? Well that's when things take a turn for the worse. Ok so I did my 3 days in a row and I took Saturday off and in the morning I taught my wife how to make a batch, I knew but I followed the manual exactly since I had only done it once before. We set it up and waited the 7+ hours for it to get ready. It passed the conductivity test and got to the point where I needed to check for Chloramines. Again that passed and we were good to go. Then I set up my NxStage cycler and got everything ready. I turned the pump on and then I went to prime the line, some people from NxStage call it the "Chicken Foot" because it is a line that has 3 lines sticking out, one for each treatment per batch. The line would not prime, I could see it pulsating in the line half way thanks to the pump but it would not get to the top. I checked for kinks and what ever else I could think of but nothing worked. So I called NxStage and basically the support person said she had never heard of such a thing before. Of course I am thinking to myself, just my luck. So after trying a few things she told me I had no choice but to go into "Drain" mode, which means I must drain the whole 60 liters and must start over. Damn I did not want to hear that, so I went into drain mode and I asked my wife to hang 4 bags the old way so I could at least dialyze, this taught me a valuable lesson to always have the dialysate bags just in case something happens to the batch that I made using the pureflow, so I dialyzed the old way since it would take another 8 hours to try and create a new batch. So while I was dialyzing, my pureflow was draining. After dialyzing about 2 and half hours later, my pureflow was done draining, well almost but it was light enough where we could remove the bag even though it had some dialysate left over. So I showed my wife how to create a new batch over again, I walked her through the steps and we followed everything to the letter. It was now after 2:00am so we went to bed. Well the next morning I awoke to an alarm, I thought it was just finished so I got up and checked it, but nope it was alarming "43" which is a conductivity test fail. Oh great I thought now what, so I check the manual and followed the directions, which states to hit "stop" to acknowledge the alarm and hit "go" to re-test. So I figured it just hit a glitch or something and I sat there while it re-tested. It started the timer at 15 minutes then when it got down to 5 minutes it went back to 15. I guess it had failed and was trying again. This happened two more times and finally it stopped and got an alarm again. So I called NxStage again. So as I called this time in the middle of the day and not in the middle of the night and having to wake up a tech support person from a deep sleep. I told the support person the issue I was having and the problem that had happened last night and he had no idea either what was going on. We tried a few things and still nothing, he had told me eventually after so many self test retries the machine will automatically kick into "drain" mode. Oh great another 60L of water and 8 more hours down the drain, literally. So he had asked me to disconnect the "orange" tube and see if it is pumping fluid through and viola it was not. So he told me he would call me back, he needed to go talk to one of the engineers. Remember it's the day time now so the engineers are at work. So while I was waiting for his call back I tried shaking the bag hoping that would mix the bags solution better but that didn't work it was still failing conductivity check. So the support person called me back and told me to try to place a clamp on the tube between the blue check valve and the tube going into the control unit door. Well as soon as I did that all hell broke loose.

The UGLY:

As soon as I clamped the line with a hemostat aka plastic scissor looking clamp, I heard a loud POP and dialysate came spewing from the control unit door and practically hit my ceiling and was also dripping from the bottom of the control unit door. So I immediately unclamped the line and told the tech what was happening, he said "that wasn't supposed to happen" So now I have this leak and even though it is in drain mode it is leaking a little faster than it is draining. I never did ask him what was the reason wanted me to clamp that line in the first place. So now I have my pureflow "trying" to drain and I guess this batch is a waste too. But I also will be having the task of bailing out water that is dripping into the metal holding tub. The tech gave me actually a very good idea. He said after the drain is done and since I will have a lot of water left over, instead of bailing it out, cut the line coming from the dialysate bag and place in the water and start another drain cycle. The problem was through that the line was leaking faster than it could drain and it would have taken SEVERAL more hours to get all that extra fluid out. After 2 hours of draining, the bin was 3/4 of the way full. Before I hung up with the tech while I was watching drain, we talked for a long time about the pureflow and things that needed to be re-worked, I told him a couple of ideas I had to make it better. We discussed the company, other companies, my websites, overall a nice conversation. Even after the mini-disaster that happened I felt that the tech was truly sorry and it just reassured to me what a great company NxStage is and how many great employees they have working for them. I had told the tech that I would like to have a backup purification pak, just in case and also I would like a few more boxes of the dialysate Saks. He said he would Fed-ex them to me and I would have them the next day. He also asked if I would please send him the Sak that failed, so they could examine it to see where the defect was, he said he will send me all the packing material.  So after I ended the conversation with him and he expressed how sorry he was several times, I just started to bail the water out. Eventually the bag/sak was getting in the way so I cut a hole in it to remove the fluid from the bag, then I removed the Sak. I bailed the water into a small trash can that I keep by my machine and it took several trips to empty it out in my bathtub. Then after I couldn't bail anymore because of the depth of the water I used paper towels to soak up the remaining water, it took a whole roll. After I totally dried it out, I decided to make a new batch and try it again but this time I said a prayer and held a CROSS up to it and I swear for a second I thought I saw the digital readout on the pureflow control unit say "Nice try, good luck asshole".

So after I rubbed my eyes to see if I was imaging what I saw and the pureflow wasn't taunting me, I followed the instructions like there was no tomorrow, I was tempted to call the tech back so he could walk me through it. But after almost 2 hours on the phone with me from last time, I decided to give him a break. Also he assured me in our last conversation that from what it sounds like these two back to back situations were not due to user error. So I finished setting everything up and hit go to start making a batch. Now it was just a matter of waiting another 8 hours to see if this time it would work. As I was rolling myself out of the room in my wheelchair I thought I heard a diabolical laugh coming from behind me I took a quick look behind me but everything seemed normal.

Well 8 hours had passed, and it was time to see if the old saying is true "3 times a charm". The pureflow had finished making the batch and it had even passed the conductivity test, this time. Now I tested for Chloramines and that passed. So far so good, now was the true test, will I be able to prime the line on the chicken foot. I know it's a silly name but it does look like a chicken foot. I went to prime the line and it started pulsating like no tomorrow, so I untwisted the cap on one of the 3 mini lines (chicken foot) and it primed like a charm. Success. I dialyzed that night with no alarms from the pureflow or the cycler. I also had my 2nd and 3rd treatments from that batch be error FREE, not a single alarm.

Conclusion:

What can I say hanging the "bags" suck, just ask my son, you should have seen his face when I told him "no more hanging bags" it was like I told him I was going to buy him his own amusement park. I love the idea of the PureFlow and honestly NxStage created this machine with the intention of saving them money in supplies and shipping costs. Nothing wrong with that. But the pureflow does have some problems, and according to NxStage their top priority is streamlining the pureflow and getting all the problems/bugs worked out as it vital to the success of their company. The pureflow has many benefits such as when you use the pureflow you need to store a very small amount of supplies compared to when you hang bags. Personally I will always make sure I have a surplus of the bags just in case a batch fails again, and I am sure it will. Myself and others who are using the pureflow are guinea pigs and I am glad to be one and be at the fore front with this technology, paving the way for future home dialysis patients. I am not however looking forward to having a purification pak leak and ruining my carpet like many others have reported, hopefully that will not happen to me, but if it does I will still be glad knowing that I am helping by "testing" the pureflow for future dialysis patients. Do I regret getting the pureflow with all the problems I've had in the first week? Not at all.

Thank you NxStage, for trying to make our lives better..... You've succeeded in my book.

Be sure to check with IHD's Sister site: http://www.ilovenxstage.com for many detailed Pureflow pictures..Coming Soon.

- Epoman
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« Last Edit: January 25, 2007, 02:03:47 AM by Epoman » Logged

- Epoman
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« Reply #1 on: January 25, 2007, 04:13:04 AM »

Great post Epoman. Very informative for those that will be following you to the use of NxStages Pure Flow Unit. I'm sure the NxStage designers will review and make a few improvements in the future.  :)
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« Reply #2 on: January 25, 2007, 05:29:09 AM »

Sounds like you have it under control Epoman. 

Our pureflow has failed the conductivity test on three consecutive batches.  I am waiting for them to overnight a new one.  I uploaded files to Nxstage and they said the second batch failed by 0.01 microsiemens.  I think they said that 12.75 is the lower limit and it registered 12.74!

Anyway, after three batches in a row, they decided to send a new control unit.  When I set up the pureflow, the 2 thumbscrews that hold the control unit wouldn't screw in.  The holes in the chassis weren't threaded.  I wasn't going to change everything out just for that, but since I had to replace the control unit anyway, why not send me a new chassis as well?  They agreed and are overnighting everything.  Also, sending more bags since we are doing bagged treatments as well.

I wish I had followed your lead and not removed the bracket.  Haven't put it back on yet, just sticking it under the side of the cycler which makes it sit unlevel.

As far as being glad to have the pureflow, I'm with you.  Even with the problems we are having, I have been nothing but impressed with the company and its employees and I have confidence that we will get this problem worked out.
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« Reply #3 on: January 25, 2007, 09:08:41 AM »

I hear you..I still have not been able to make a succesful batch for over 1 week now. I just keep trying and they (NxStage) are as well. I wish you the best. I know how much I love my PureFlow when it works.
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« Reply #4 on: February 01, 2007, 04:50:35 AM »

Went through another batch, only 2 sessions though, I had to skip a treatment and I ran out of useable time on the pureflow. But so far so good. I will be making a new batch in the morning. It seems to me once you get passed the conductivity test and your first treatment the 2nd and 3rd treatments should be error free. That is the case with me at least.

- Epoman
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« Reply #5 on: February 01, 2007, 11:55:26 AM »

The other day I decided to dress up the water and effluent lines behind the Pure Flo. I used velco to hold everything in place. It looked great. However, I had to disconnect the effluent and water lines to untangle, etc. Well, I sat down and put in the needles and began the treatment. About five minutes later my wife comes running up the stairs screaming "It's leaking, it's leaking!" It turns out the elbow connector at the back of the Control Unit was leaking. I had about 19 liters to go on the treatment, so my wife (who is not mechanically inclined at all) had to deal with the leak. We went through about 10 towels and a couple of rolls of paper towels, pots and the like. At least half of the dialyzate landed on the floor. Boy was the wife pissed. I fixed the leak after I was done without any problem. I know there are better connectors available, quick disconnect type, that don't leak and are easy for the average person to use. I would like to see NxStage use better connectors.
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« Reply #6 on: February 01, 2007, 09:18:34 PM »

I'm doing my second 30L PureFlow treatment right now, I'll see how my second batch goes but so far so good as far as alarms on this first batch.

Epoman I was thinking if you (or me or anyone else on the cycler with the PureFlow) need to drain the tub - what about using a drain line (the one for tx with bags) as a siphon? I'm not totally up on the principals of the siphon but I think if you get the end below the source you're good to go. Of course you have to get it started but a mouthful of dialysate can't be worse than a mouthful of gas.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
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        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #7 on: February 01, 2007, 09:25:38 PM »

Can you totally submerge the siphon tube?  If you fill the tube completely, cover the end with a finger to stop the air from getting back in, and put the end of the siphon tube into the lower container, the fluid should start draining by itself - no mouthful of gunk needed.  Fluid dynamics at their best!

(I'm so glad that physics degree is finally coming in handy. . . )
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« Reply #8 on: February 01, 2007, 09:45:54 PM »

I'm doing my second 30L PureFlow treatment right now, I'll see how my second batch goes but so far so good as far as alarms on this first batch.

Epoman I was thinking if you (or me or anyone else on the cycler with the PureFlow) need to drain the tub - what about using a drain line (the one for tx with bags) as a siphon? I'm not totally up on the principals of the siphon but I think if you get the end below the source you're good to go. Of course you have to get it started but a mouthful of dialysate can't be worse than a mouthful of gas.

Bill, Bill, Bill, didn't you read my post? :(

Here is a quote from my post:

"But I also will be having the task of bailing out water that is dripping into the metal holding tub. The tech gave me actually a very good idea. He said after the drain is done and since I will have a lot of water left over, instead of bailing it out, cut the line coming from the dialysate bag and place in the water and start another drain cycle."

So as you can see all you have to do is cut the line from the bag, submerge the line in the tub of solution and start another drain cycle.

 :thumbup;

- Epoman
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« Reply #9 on: February 02, 2007, 08:45:46 AM »

I read the post Epoman but the siphon would be quicker. You could start the siphon while the first draining was occurring - you could do both at the same time. The drain process starts a three hour + countdown, a siphon could take all 60L out in I would guess, less than an hour. I've just started my second batch. I'm going to hang out for a while and go into work late to see if it stays happy.

Thanks Jbeany that seems very doable for the PureFlow in this situation.
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Incenter Hemodialysis: 1990 - 2001
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        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #10 on: February 02, 2007, 11:27:16 PM »

I read the post Epoman but the siphon would be quicker. You could start the siphon while the first draining was occurring - you could do both at the same time. The drain process starts a three hour + countdown, a siphon could take all 60L out in I would guess, less than an hour. I've just started my second batch. I'm going to hang out for a while and go into work late to see if it stays happy.

Thanks Jbeany that seems very doable for the PureFlow in this situation.

Ah, gotcha! It would be much faster with a siphon but I'd rather not have a mouth full of dialysate fluid.  ;)

- Epoman
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« Reply #11 on: February 11, 2007, 03:39:47 PM »

As you know, I've been on NXSTAGE system 1 since late 04, and just learned about this pureflow stuff last week when I went to clinic and someone else was getting trained on it.

Epoman, do you know if they're planning on making all patients switch to the Pureflow? I hope not.   I'd actually prefer to keep doing it with the bags, yes, it is a lot of garbage, and very strenuous hanging the bags each day.. but it just seems like less hassle than having to make the baths.  Another thing, my nurse said that you HAVE TO dialyze three days in a row with pure flow.. With the way my schedule is now, I much prefer my 'random' day off, rather than a scheduled day off.

Did any of this make sense?   :-\  LOL.

I guess I really just don't understand the point of the pureflow.. compared to the ease and convenience of the old Nxstage way..
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« Reply #12 on: February 11, 2007, 04:37:36 PM »

As you know, I've been on NXSTAGE system 1 since late 04, and just learned about this pureflow stuff last week when I went to clinic and someone else was getting trained on it.

Epoman, do you know if they're planning on making all patients switch to the Pureflow? I hope not.   I'd actually prefer to keep doing it with the bags, yes, it is a lot of garbage, and very strenuous hanging the bags each day.. but it just seems like less hassle than having to make the baths.  Another thing, my nurse said that you HAVE TO dialyze three days in a row with pure flow.. With the way my schedule is now, I much prefer my 'random' day off, rather than a scheduled day off.

Did any of this make sense?   :-\  LOL.

I guess I really just don't understand the point of the pureflow.. compared to the ease and convenience of the old Nxstage way..

Hi "alrightstill" funny thing about nurses that I have found in my "medical career" is that many of them are very misinformed. The situation about the "3 days" is you have only 72 hours to use a batch but I have only used 2 out of the 3 batches sometimes. I still have my random day, in fact I only dialyze 5 days week. As to the making people "switch", my sources at this time say no, so don't worry PureFlow is no where near being a viable replacement to the bags. And they will always manufacture the bags. For me personally I love the PureFlow however I still use the bags sometimes.

- Epoman
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« Reply #13 on: February 11, 2007, 08:27:59 PM »

Thanks for the detailed description, Epoman.   :2thumbsup; It helped me be ready for the introduction to the PureFlow.

Because Mike is 129kg he uses 5 bags, and can only get 2 uses out of a PureFlow batch.  We will have to drain what he doesn't use before we can start another batch.  Maybe it won't be that hard but right now having to be sure there is time to drain the partial batch left, and then prime, and then make a batch for the next day seems difficult to coordinate the flexibility we were hoping for from the NxStage.  And, is it just me, or is this going to be hard to plan for 6 days a week dialysis?  I mean, will he always have to do four days, skip a day, and then two days, skip a day, and then 4 days, etc., in order not to waste more than half a batch?  If a batch fails and he uses bags then it will be impossible to get back on schedule unless he does bags for two days or wastes more than half a batch. 

BTW, we tried to make a batch with the PureFlow on day three of training -- there was a leak somewhere.  There was a tiny bit of fluid sprayed on the door.  It ran under the filterpak and triggered the alarm, and also  puddled inside the drawer.  We had to use bags on day four and five -- will use bags tomorrow while a batch is making.

IMO, once all of the bugs are out the PureFlow it will be better than the bags, especially for the people who can gets 3 uses out of a batch.
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« Reply #14 on: February 12, 2007, 02:20:31 PM »

Lorelle,

I was/is a pretty big guy (recently lost 65 Lbs). When I started NxStage my dry weight was 135kg and I too was started on the 5 bag 6x a week schedule. When I got my pure flow I was taught by a NxStage clinical educator/RN that I should consider raising my FF to 33 from 30 and process 30L rather than 25L. It was pretty much a wash as far as the time on the machine. My labs have gotten much better with this Rx. You might want to ask when you get trained or ask your Nephroligist about this option. Not having to drain 10L is a great time saver. This way you really are never have to worry about losing a batch.

I was also just told that NxStage is considering making 40L bags in the future. I'm sure this will take some time to work out.

Mike
« Last Edit: February 12, 2007, 02:26:40 PM by MJB » Logged

Mike

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« Reply #15 on: February 16, 2007, 05:25:37 PM »

I had an alarm #52 "Fluid Leak in the CU" last night and the PureFlow will not go into drain. So I right now am putting the siphon technique to work. I cut a one inch slit in the top of the bag and then fed a 25' drain line into the bag after removing both caps. Building on jbeany's suggestion I kept the end with the clamp out of the bag until I had the rest of the tubing fully immersed in the bag.

The last step was to move the clamp as close as it could get to the end of the line and I then immersed the last of the tubing. Through the bag I was able to pinch the clamp closed - which had the same effect as holding my thumb over the end of the line that jbeany suggested. I then took that clamped end to my shower drain which is below the bottom of the tub and opened the clamp. Viola instant siphon. I started at 5:12 my time about ten minutes ago. I'll edit this post as the siphon continues. Looks like my less than an hour prediction was too optimistic. Now I'll guess about an hour and half to drain the tub using a waste line for a siphon. We'll see.

This thread was why I knew what to do. The NxStage tech support was about to run through my options e.g. me and a friend lift the 130 lb sac; instead I was able to say I know just what to do. And no mouthful of dialysate - thank you.

**UPDATE**
So much for that experiment. I fell asleep. When I was done with treatment the Sac was 90% empty. It did look like it might be a three hour process to siphon a full Sac with a drain line but I guess if I wanted faster results I could have used two drain lines. There was a little water in the bottom of the tub that had spilled from the hole I cut but that just required a towel and this morning I went over the whole inside with a paper towel to make sure there wasn't any moisture in the tub.
« Last Edit: February 17, 2007, 10:50:42 AM by Bill Peckham » Logged

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« Reply #16 on: June 21, 2007, 10:27:58 AM »

 :thumbup;
what a great post. I am on PD, and thinking of Nextstage. I was looking into the pro's, and con's. My husband works two jobs and is only home about 2 1/2 hrs between. I am not sure that will be enough time to be on the machine. Also it takes three weeks of training, and he would have to take off work. My daughter n law would go with me but it a bit to ask her to stay with me while I dialysize. Why they won't let me do it alone they say is I might pass out.
I do the cycler at night with pd, and love the freedom. I hear that you feel better on nextstage and can milk again. I miss milk in the worse way and this would make me want to go on it.
Do you indeed feel better, I am so weak all the time.
Sandy
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« Reply #17 on: June 21, 2007, 01:04:28 PM »

I am on PD too and will definetly look into NxStage when my peritoneum gives out (hoping that it never will)  But Epoman and a couple of other members have definetly convinced me that they feel so much better being on NxStage and thats pretty much enough i need to know to switch me over ;) ;)  Good luck to you and please keep us posted  :cuddle;
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« Reply #18 on: November 23, 2010, 04:49:26 PM »

As you know, I've been on NXSTAGE system 1 since late 04, and just learned about this pureflow stuff last week when I went to clinic and someone else was getting trained on it.

Epoman, do you know if they're planning on making all patients switch to the Pureflow? I hope not.   I'd actually prefer to keep doing it with the bags, yes, it is a lot of garbage, and very strenuous hanging the bags each day.. but it just seems like less hassle than having to make the baths.  Another thing, my nurse said that you HAVE TO dialyze three days in a row with pure flow.. With the way my schedule is now, I much prefer my 'random' day off, rather than a scheduled day off.

Did any of this make sense?   :-\  LOL.

I guess I really just don't understand the point of the pureflow.. compared to the ease and convenience of the old Nxstage way..

The bags are less convenient to me. It takes 1 minute to install a bag and I walk away...2 1/2 hours later it's done. Using the Pureflow is also much cheaper. Remember..we are using tax dollars and we must try to be as stingy as possible with America's money.

She's incorrect on the 3 days in a row. I dialyze 5 days a week and my schedule varies. I love being able to pick which days I want to skip depending on my work schedule and my wife's availability. It also helps that I trained my daughter to assist me. Sometimes I skip two days in a row with no problems (other than sounding like a half full water balloon  :rofl;)

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« Reply #19 on: November 23, 2010, 07:23:28 PM »

Medicare reimbursement - the taxpayer's cost - is the same whether you use the bags or the PureFlow.
If you save money, you're saving your provider money.

If you're using 20L of dialysate per treatment you'll need to dialyze three days in a row.
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Incenter Hemodialysis: 1990 - 2001
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        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #20 on: April 01, 2011, 04:08:55 PM »

A question for those of you who home dialyze.  Do you do the connections yourself or do you need assistance.  My Mom has a graph in her upper arm, would she need a fistula to be able to do the home dialysis.  These may sound like silly questions for those of you with experience by I am going blind searching this site for all the answers.  There is SO MUCH information out here OMG I am overwhelmed. 
Mom is getting worse each day.  Always nauseated, weak, dehydrated after every treatment, electrolytes completely screwed up, and rapidly losing control of her fingers hands and feet.  When we talk with her Nephs, they just say hmmmm, we will have to look into it.  And then they leave... :stressed;  I have been checking out the Nxstage sights and blogs and it looks like it might be a fix, I am just scared about having to stick her myself.  I am a true coward.  If it is something she could do herself my fears would be relieved.  Does anyone have any insight or suggestions, other than "stronger glasses and stomach".
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« Reply #21 on: April 01, 2011, 04:25:07 PM »

A question for those of you who home dialyze.  Do you do the connections yourself or do you need assistance.  My Mom has a graph in her upper arm, would she need a fistula to be able to do the home dialysis.,,
Welcome to the forum, MomInDialysis.  You should start a new thread in the general discussion or home dialysis forum instead of appending this question to this old thread on Pureflow. .. but to answer your question, home dialysis does not require a fistula over a graft.  A graft in working order is perfectly fine.  I would suggest you also look into nocturnal in-center dialysis, if it is offered in your area.  It may take away some of the symptoms of 'crashing' because the patient has more time to slowly remove any excess fluid.  In addition, longer dialysis provides more efficient dialysis of phosphates and potassium and you may find that the patient would be less constrained in food intake rich in those substances.
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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
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« Reply #22 on: April 01, 2011, 05:51:02 PM »

I stick my self and I do Nxstage at home.....  I take my own needles out and do everything....   I bet she would do fine....  I dont think a graft would be a problem except for having buttonholes  which is another story...   She would need to train with a care partner for support...  but there are many people who stick them selves either in center or at home....  go to the Nxstage.com and try to find a training clinic close to your home... call them and find out more.....  More frequent Dialysis is much better....its makes you feel better and you dont have all the cramps and crashing like in center...... I would never go back to in center.... I feel WAY better.....  let me know if you have any other questions... You can PM me....thx   kathy
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« Reply #23 on: May 10, 2011, 08:57:30 PM »

I stick my self and I do Nxstage at home.....  I take my own needles out and do everything....   I bet she would do fine....  I dont think a graft would be a problem except for having buttonholes  which is another story...   She would need to train with a care partner for support...  but there are many people who stick them selves either in center or at home....  go to the Nxstage.com and try to find a training clinic close to your home... call them and find out more.....  More frequent Dialysis is much better....its makes you feel better and you dont have all the cramps and crashing like in center...... I would never go back to in center.... I feel WAY better.....  let me know if you have any other questions... You can PM me....thx   kathy

Kathy, it is a wonderful thing to hear you speaking about home dialysis now since it was only a short time ago that you were concerned about doing all of these things yourself in your own home. You truly have come a long way in a short time. Way to go Kathy and thank you for spreading the news to others about the benefits of home dialysis.
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Peter Laird, MD
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Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #24 on: May 14, 2013, 12:08:07 PM »

hmm all very interesting and sort of fits with warnings I got from looking at NxStage.   I have in the past made grumblings about my clunky 2-peice machine (Fresenius 4008B), but to be honest I would hate to go through all that set up. ewww  i live a mostly normal life and if I'm giving time to treatment I'd rather do that while actually getting some.

Besides Nxstage only runs for 3.5 hours whereas I've pushed the 4008B to 10 hours with zero alarms, and I know I could reset the clock and get at least 2 more if I tried before the non-changeable consumables run out. 

I can set up the 4008B in under 30 minutes, and its been incredibly reliable and stable.  Very rarely has it alarmed in the last month (126 hours of treatment), so that's 126 hours of sleep too :-) 

The support you mention is cause for concern - they didn't seem to know their product.  We are lucky in that 1st level support is the health board 24/7.  They not only prepared detailed trouble shooting docs but have sorted 2 pretty serious user-errors over the phone before we had to dump blood lines.  2nd line support is Fresenius and I'm super impressed at how they approach it.  Turn up the next day, and always complete the job.

I did look at NxStage and because of the sale reps call to my Neph they decided to attend a NxStage conference.  But I don't believe they got what they needed from it.  Thankfully with state funded health care they are very strict at checking before buying, and I got the impression that they are not interested.  Especially if is that complicated, with so many HomeD patients in NZ the support cost would spiral out of control.

   
 

   
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Ian Chitty
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(<2yrs) 1Y in-center, 9 months HomeD, 4 weeks tourism dialysis (Philippines/Singapore)

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The aim of KiwiMedTec is to develop online solutions and partnered networks for dialysis patients, to make coping with kidney disease a little bit easier.
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