I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: willowtreewren on April 23, 2009, 10:32:57 AM
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My husband just got back from getting an IV of Venifer and he tells me that NxStage is pushing for us bag users to change to Pureflow (cheaper for them)
Our center wants US to be the first to do this since they say that we are so good at what we do, they figure we will have the least problems.
But I need to know how much time is involved with preparing the pureflow and the down-sides of using that process over the bags. I'm VERY happy with the bags and we don't have very much "spare" time since we both still work full time (well, almost).
What do you all think?
Aleta
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Aleta, my husband, Dave, is my caregiver (wonderful guy!!). He takes care of setting up the machine for my treatments, so I thought I would ask his opinion. Here's his response:
"Here are my thoughts (we both work 45-50 hours a week too) - I think it’s faster overall to use the Pureflow.
It takes me 3 or 4 minutes to set up the sak in Pureflo to make the batch (we make 50 liter batches – 25 liters used each session). Then, the Pureflow runs unattended for 6 hours and 10 minutes (making the batch). That batch is good for 2 treatments (because of our 50 liter requirement), or 72 hours - whichever comes first. Some people only use 20 liters per session. If that is their case, then they will probably get 60 liter batches, good for 3 sessions. A chloramines test is required before you can use the batch. That takes about 2 to 3 minutes. I do that while the cycler is priming before each treatment.
I’ve used bags and Pureflow. I’d rather use the Pureflow any day. It’s probably a couple of minutes faster during hookup to use the Pureflow rather than bags and there’s a lot less garbage too.
Two things to consider –
Concern One - Do you have a place that you can hookup up water to the Pureflow? NxStage gave us everything needed to hook up water (via faucet and/or connection to water pipe). We have ours connected via the water pipe under the sink - it's always hooked up and doesn't interfere with the faucet. I hooked it up myself, and I'm certainly not a plumber. The Pureflow sits next to the sink while a batch is being made, then we roll it over by the chair (about 3 feet across the floor) during treatment. If you want to be able to move the machine - be sure to ask for a rolling base for the Pureflow machine - it has to be requested to get it. We roll it next to the sink to avoid having the water tube running across the floor while a batch is being made.
Concern Two – If a batch expires before you use it all, you have to drain it. The draining of the sak via the Pureflow is very very slow. I always stop the draining process and just pull the sak out, cut open an end with scissors, and empty it in the sink. If you are not strong enough to pull out how many liters of dialysate is left in the sak, then, you have to wait on the draining process until the sak is more manageable for you. "
Hope this helps. If you have any more questions - feel free to ask. Oh, and by the way - the Pureflow machine makes a great table for holding the NxStage machine.
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One more thing we forgot to mention. Generally, Dave empties the Sak and puts in a new one after a dialysis session while I'm holding my sites. It creates the batch during the night. Occasionally, he has started it in the morning and let it run while we are at work. Some people have had problems with leaks, but that has never been an issue for us (looking for wood to knock on). We've been using the Pureflow now for just over a year.
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There are two sources of leaks.
The first is faults int he saks. I have had two of these in a year of using a pureflow.
The second is failing to tighten the connection on the blue line between the sak and the control unit. This has been the cause of four full tubs. Once you can train yourself to check that connection every time, you have a much lower incidence of leaks.
I would agree that it takes less time overall to run the pureflow. However, it can be a hassle if you have alarms during a run when you are not around.
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Thanks, guys.
They have said that there is no hurry (we can wait until school is out). We are looking at our set up at home to see if it is even feasible. We drilled a hole in the wall from our den into an adjacent bathroom for the drain line, and could probably do the same for the water hook-up.
We would gain part of our garage back! :2thumbsup; And we wouldn't have to schedule those deliveries every four months. (oops, that should be weeks1)
What about traveling? Do you still use bags for that?
You know us, have camper will travel! :thumbup;
Aleta
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We do use the bags for travelling. Also, we always have a week's supply of bags on hand, just in case. We've only had to use the bags a couple of times at home, like when we got home from vacation and didn't have time to make the Pureflo yet. Or, once when we timed it wrong and the Pureflow expired before my treatment was done.
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That makes sense.
Thanks, Cherpep.
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good luck & keep us informed with what you decide.
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I agree with cherpep on the benefits of the PureFlow. That's what we started with 20 months ago, and that's what we've been using ever since (well, predominantly using anyway). Hook up with PureFlow to start a treatment is easier (no bags to hang -- right there "ready" for you when you start). We get three treatments out of a batch (or 72 hours -- sometimes you have to time it just right to get the full three treatments).
We make a new "batch" most of the time during the night, so that's not a problem. The PureFlow does serve as a nice table for the NxStage machine, so it doesn't take up any "extra" space. We installed a sink in Marvin's "clinic" (used to be a bedroom), and it's right next to his PureFlow, so we don't have to move it at all. The "sacks" that you use to make a batch for the PureFlow are much smaller (and easier to store -- take up less room) than the premixed bags. That's a big plus for us, as we're pushed for space.
If we get all three uses out of a batch, the draining takes about 10 minutes (because there's very little left to drain). We start it draining, check it in a few minutes, stop the drain, flush, and are ready to make a new batch. However, if we don't get the full three treatments (didn't time it right, Marvin took a night off in the middle of a batch, had to shorten a treatment for whatever reason, etc.), the draining does take a couple of hours.
All in all, we like the PureFlow. However, if you have a leak, it can get pretty ugly (like the time ours leaked and soaked all the carpet in Marvin's clinic -- Oh, my, what a mess that was!). But, now, we've replaced the carpet with tile, so the next time it happens (and it probably will), it will be easier to clean and won't ruin anything.
So, I'd say when the PureFlow is working correctly, it's a piece of cake...top of the line... best thing in the world. When it's not working correctly (leak), it's horrible and will make a preacher cuss.
We keep a week's supply of premixed bags on hand at all times just in case we need them. Also, like cherpep, we've used the bags when we didn't have time to make a batch (back off vacation, etc.) before we wanted to do the next treatment. We also use the bags when traveling.
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The pureflow if so convenient, easy to set up and take down. My husband ran a water line and drain line through a small hole in the floor in the corner of my office. The water line and the drain line go under the house and connect to existing lines. Sweet. I simply roll the pureflow out a few feet so that I can sit at my computer (as I am right now). When the pureflow is full (60 liters) I try to have someone help me roll it out. Pretty heavy rolling it across carpet. I get 3 runs out of a 60 liter batch because I do 18 liter runs. I love the fact that it takes up so muuch less storage and a fraction of the boxes to break down. I do use bags between batches if I'm not sure I'n going to run. I don't want to make a batch and waste some if I skip a day and the batch expires. I plan on having bags shipped to Orlando when we go there for a vacation in June.
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Thanks, everyone for the feedback.
You know, we often think what we are familiar with must be the best way to go, but your comments have really made a difference. That feedback is something that I could not have gotten any where else.
I LOVE IHD! :thx;
I do worry about leaks because there is carpet where we dialyze. Sure wouldn't want to have it soaked. :waiting;
But it really seems like the better way to go.
It may be a moot point. A friend of ours is going through the donation process. Trying very hard not to get my hopes up.
Aleta
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The nice things about the leaks in t he pureflow is that they are contained in the tub. The worst leak I ever had was from hanging bags. I had an extra arm of the manifold that connects all the bags tot he warmer, and I didn't get it closed off,a nd it leaked 6 Liters onto the floor. All my pureflow leaks have been contained in the tub.
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Bags for me. I believe that the bags are easier for me. This is more than likely due to being on CAPD for over 13 years with bags and I have become accustomed to them.
For those using the PureFlow, How often do you have to switch back to the bags due to an error or faulty equipment? Can someone give a briefe synopsis on how you setup the Preflow for a treatment?
thanks much
///M3R
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We have been using the PureFlow for over 2 years with no problems or external leaks. Before the initial use, I made a platform for it to sit on, A nice piece of Oak Plywood 2 foot by 4 foot with 2 inch oak strips glued to the sides, as an extra touch I put some fancy brass corners on it and finished it with a good sealant, the PureFlow sits in it on the carpet and catch's any drips or leaks we may have had from both the Cycler or the PureFlow.
Initial use of the machine involves opening the swing away front door, pulling out the "tub" (it is on slides) inserting the "sak" , a very heavy duty plastic bag that unfolds and expands to hold the 60 liters ( it has about 1/2 gallon of concentrated solution in it at the beginning) you press the green button on the front and it walks you through the rest of the steps, the 2 lines that go to the Sak are foldied over and secured with plastic keepers, pull on each side of this makes the keeprs slide off the kinked section, slide a couple of stiff green sleeves over the formerly kinked section keeps them open for water flow, open the front of the mechanical section of the controller unit and insert the maze of tubes is pretty simple and easy, close the controller panel, make the 2 connections to the incoming filtered water and the drain and hit "Go", 7 hours later it runs a bunch of self tests of itself and the solution, you can then do a cloramine test and it is ready to go...after doing it several times it should take no longer than 5 minutes to do.
The batch is good for 72 hours, but you must keep in mind that the 72 hours starts at the beginning of the cycle, so in reality after it finish's making a batch you have 65 hours of use left.
I should mention that it has a heater built in and it is easily adjusted for temperature from the front panel display. I keep a weeks worth of bags on hand for emergency use, but seldom have had to use them, very reliable machine.
Tom
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The Pureflow is SO much easier than bags! No lifting, to breaking down, no extra trash. It's great! When I forget to start the Pureflow early enough for my run (it takes 7 hours to fill) I use bags and am so disappointed that I have to lug them all out, hang them up and then throw them all and the boxes away. It is nice to have the bag backup in these instances though. I have never had to use them due to falty equipment.
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Now that we have switched from bags to PureFlow, I can say that we really love it!
It takes less time, less effort and most of all, less space. Plus I like the grooved top of the cabinet that makes it easy to swivvle NxStage machine around.
Brian, setting up the batch is a piece of cake. Unfold it, hook it up and push go. It goes through a few tests and then 7 hours later that batch is ready. We start a new batch in the AM before work and use it that night when we get home. Three days later we do it again. Simple, simple, simple!
Aleta
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We are holding out with the bags for as long as possible, our center is also asking us to switch to pureflow. I just do not have the time or the energy to deal with leaks or a bad batch or the extra testing for contaminates or whatever that is that goes on with the pureflow. The bags are always there and ready for use.
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There are times that we use the bags (traveling or because of a scheduling issue with the 3 day supply of a PureFlow batch), but as far as being easy and less time consuming, the PureFlow is by far the winner. Testing for Chloramines takes very little time as compared with lugging and hanging the bags. Plus we don't have to schedule a time to accept the shipments from NxStage. The PureFlow shipments are small enough for UPS to deliver. With our busy, busy schedule it is now a no-brainer.
Aleta
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I have a question about the soln in the pureflow batch.... its has been said here that the soln is good for 72 hours .... what happens to that soln that makes it bad so that you cant use it..... The Chloramines test is tested on each batch are there other test that need to be done.... What about different water chemistries, hard water or soft water or water that has higher iron levels .... I am interested in the pureflow system but have wondered about water quality....
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There are two components (besides the processing unit) to the cabinet. One is the PAK. It purifies the water that is going to be used to mix the solution. The other is the SAK that has the dialysate concentrate. The PAK has all sorts of filters, a UV light to treat the water, etc. After it is installed in your house and the water is treated, a sample is sent in to make SURE it is okay. Then at the beginning of the use of each SAK you test for chloramines. You get test strips and the machine gives you all the directions for testing. The SAK makes 60 liters of dialysate. So you can get 3 treatments of 20 liters. Once a month (or whatever your clinic requires) you draw a sample of dialysate from the end of the 72 hours to be tested. It needs to remain on ice once it is drawn. This is just another way to ensure that your treatments are sterile. After 72 hours the machine will automatically dump the left over dialysate if you forget to drain it.
Each PAK lasts up to 12 weeks (or less if you have crummy water). After 12 weeks it lets you know that it needs to be changed, even if the filters are still good. And you CANNOT keep using a PAK that has expired or that has filters that are used up.
There are all sorts of systems in place to protect the patient. The water used for the NxStage system is leaner than the water used in -center. :2thumbsup;
I'm thriled that you are going to be able to do NxStage without a fight! :beer1;