My NxStage PureFlow Review: The Good, The Bad, and The Ugly! WARNING LONG!

Originally posted on IHD: http://ihatedialysis.com/forum/index.php?topic=2477.0

MY 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.

continued in NEXT post.

Continued from post above. (forum would not allow such a long post)

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 a**hole”.

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

Thanks for posting your experience and your faith in the company.

Marty

[quote=Epoman;12258]Continued from post above. (forum would not allow such a long post)

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

Epoman,

Nice description and great attitude. I just had a 43 conductivity fail and retested three times after agitating the dialysate each time. Before dumping I checked with the tech who concurred. I’m not sure why the tech was asking you to clamp and disconnect.

For those contemplating the Pureflow what happened to Epoman concerning the spill is a rarity. Clearly bad direction from the tech. The system is closed meaning you should not see, feel, or smell anything unless you open the system, e.g. open a connection. Once you open it there is a risk of a spill because there is a way for the fluid to escape. As long as you follow the step by step and - here is the big “and” - don’t get bad advice from a tech - you shouldn’t have to worry about a spill. Of course unless you made a mistake like both Epoman and I did when we didn’t make sure the wasteline was secure.

Because of the time frame I’m making a new batch and hanging bags today. Pureflow is just another tool available to us to make undergoing dialysis a tad easier.

I know NxStage is certainly open to ideas. As Epoman points out we are the early adopters and will find the bugs, so when you do let NxStage know.

Cheers! Erich

I see that the issues with Pureflow go back a long time. Too bad they have not ever been resolved. It’s 3 o’clock in the morning and the thing is alarming-so much for making a batch overnight. I’ve never had a baby in the house but this thing iis a child substitute. Simply does not let you sleep on a reliable basis.

Your best bet is to contact NxStage Technical Support and describe the alarms you’re getting in as much detail as you can. You can reach NxStage Technical Support at [1-866-NxSTAGE (697-8243)] (tel:1-866-697-8243) and choose Option #1. NOTE: Customer Service is Option #2. Hopefully talking with Technical Support will resolve the problem and allow you to get the sleep you need.

First and foremost, I was informed that Epoman had passed away, not sure when. Does God have a place in his heart for those of us living this very special way of life? I invite you (Epoman) to visit me and advise. Well, it’s May 6, 2021 and if you can read this, 13 ½ years after your original post, I have had every problem you had back then with the exception of the enormous water leak. RIP Epoman. God bless you. I’d appreciate any help you can give me before I meet you up above. You seemed like a very kind and understanding man.