Pureflow update

What is the latest on pureflow as far as have they gotten the bugs out and did they ever figure out what was causing the problems?

I’ve been using my Pureflow for about 6 months and I love it. I have yet to see a bug. Erich

After making 3 batches here’s my BUG…

http://www.youtube.com/watch?v=pfHGKRozvpg

I hope its a temp BUG and certainly not I will not get a knife and make a hole in that bag. We will not live our lives using a wet dry Shop-Vac. Just got new control panel today and will install it tomorrow…will update you on this BUG!!! I guess sometimes some people don’t want to talk about the little bugs, hehehehe

[QUOTE=Gus;13480]After making 3 batches here’s my BUG…

http://www.youtube.com/watch?v=pfHGKRozvpg

I hope its a temp BUG and certainly not I will not get a knife and make a hole in that bag. We will not live our lives using a wet dry Shop-Vac. Just got new control panel today and will install it tomorrow…will update you on this BUG!!! I guess sometimes some people don’t want to talk about the little bugs, hehehehe[/QUOTE]

Whooaaa -that was a bug alright! Do not ever, ever want to see that bug at my tx!!

Ya I know, what a bummer! Because of severe carpal tunnel I can’t maintain this machine myself…my partner does it for me. However, my partner likes it more than I do! Funny eh?

It is a dream machine, only when it works the way it suppose to!..We’ll see…am logging my progress on this.

I also have another video “Gus Swaps the Jewel Box”…In order to use Pureflow Sl I had to do this procedure…it only applies to patients using older cyclers.

http://www.youtube.com/watch?v=rMNuOv4PsEo …turn up your sound! Hehehe

[quote=Gus;13487]Ya I know, what a bummer! Because of severe carpal tunnel I can’t maintain this machine myself…my partner does it for me. However, my partner likes it more than I do! Funny eh?

It is a dream machine, only when it works the way it suppose to!..We’ll see…am logging my progress on this.

I also have another video “Gus Swaps the Jewel Box”…In order to use Pureflow Sl I had to do this procedure…it only applies to patients using older cyclers.

http://www.youtube.com/watch?v=rMNuOv4PsEo …turn up your sound! Hehehe[/quote]

Gus,

I love the Henry Mancini.

One person’s bug is another’s cost of doing business at home.

Maintaining my Pureflow has been cake compared to experiencing fellow patients die next to me at clinic.

Cheers, Erich

[quote=TheRiverdude;13494]Gus,

I love the Henry Mancini.

One person’s bug is another’s cost of doing business at home.

Maintaining my Pureflow has been cake compared to experiencing fellow patients die next to me at clinic.

Cheers, Erich[/quote]

Maintaining your Pureflow is a piece of cake compared to seeing patients die in-center? That don’t sound nice. I wonder if your fellow patients are reading this…

Another gripe I have about the Pureflow Sl is how and where the telepnone like connector that connects from PAKS to Control Unit was designed. I consider this a design flaw…you literally have to bend alot or even lay on floor just to see the slot and connect that piece…you’ll need a flashlight…

The way it should be is that the PAKS slide into Control Unit connector without any user intervention. Another option is this connector should be very easy without difficulty… The front visible fluid connectors are just fine, not too bad but I think it can be better.

That’s my point. Pureflow is simple, losing fellow patients is painful and difficult.

I had to call my Nx Stage tech tonight because I started up from turning off the machine after it was empty and wanted to start a new batch. The machine wanted to run through the drain cycle again which takes 3 hours and taxes the pump. I didn’t want it to. The tech told me what I needed to do in 2 minutes.

I thanked her and told her to remember all of the patients on the Pureflow who did not ot will not call her tonight instead of being bothered by the ones who called and will call who are angry that something isn’t working the way they thought it should. She said she never thought about it that way. Most patients who call her are upset that something isn’t working. Remembering the hundreds who do not call and are not griping may help her make it through the night.

I reminded her that most patients forget that when they are in center, no matter what there will be a chair for them when they arrive. The unit may have to swap out three dialysis machines in order to get one that is working, but the patient never knows because everything is ready for them when they get there.

One of the things those of us who dialyze at home have to remember is we are the patient, the adminstrator, the technician and the nurse. We want it that way that is why we are home. With the option of being home comes tremendous responsibility which includes servicing our systems. No system is foolproof, and many of us can do some pretty foolish things while learning the ropes. I certainly have done my fair share.

I assume fellow patients read this. I also assume fellow patients have had friends and colleagues die next to them. It sucks. I realize that they will die even if I’m not there. But, when I am there and experience their death, it makes me feel much more susceptible to death. I don’t have the luxury of being scared about my own death. I have too much left to do in this life to be reminded of my mortality.

My pureflow helps to give me the independence so that I don’t have to be reminded how sick I actually am. I like to think of myself as being pretty darn healthy. Nx Stage allows me to feel that way.

Good luck with your pureflow. It is a wonderful machine and on the side, it is also helping to combat global warming, the solid waste disposal problem, land consumption issues, and water pollution.

Erich

Gus, I’ve got to agree with Erich. But to stay away from the morbid details he referred to, which I’ve also been witness to, I prefer PureFlow over bags. I think your complaint about the cable connection from the PurPak to the control panel has got to fall in the petty category. I know you may have more trouble because of your carpal tunnel, but I think there was a reason for the design. It was probably to keep the cable away from the door. Were there design problems? Yes, just like with everything else. However, in this case one could always just use bags.

I’ve had problems with PureFlow but it is still worth using. I started a new batch SUnday morning and was planning to start dialysis late afternoon. This past Sunday was my montly breakfast with a bunch of old friends, and my wife decided not to go. I got four calls from her because the batch was having problems. I told her not to sweat and I would just use bags that night. But when I got home I was able to resolve the issue and just postponed my tx a couple of hours. Still was better than using bags.

Erich, I didn’t understand your comment about the drain taking 3 hours – that’s only if the SAK is full at 60 liters. The time mechanism can’t determine what the volume of dialysate there is to drain. From what you described, it sounded like the bag wasn’t full. When I get done with my third 20 liter tx, I drain for about 10 minutes and stop-, and then go to a final flush.

Rich Berkowitz

NxStage 2/06
In-center 3/03

[quote=Rich Berkowitz;13510]Gus, I’ve got to agree with Erich. But to stay away from the morbid details he referred to, which I’ve also been witness to, I prefer PureFlow over bags. I think your complaint about the cable connection from the PurPak to the control panel has got to fall in the

Rich,

I’ll get back to you after my next drain. Erich

[quote=Rich Berkowitz;13510]Gus, I’ve got to agree with Erich. But to stay away from the morbid details he referred to, which I’ve also been witness to, I prefer PureFlow over bags.

Comparing the Pureflow Sl to fellow patients dying in-center is plain st*pid, ignorance. You should compare the Pureflow Sl to other dialysis machines and/or equipment. Give a little respect to the people who have passed.

I think your complaint about the cable connection from the PurPak to the control panel has got to fall in the petty category. I know you may have more trouble because of your carpal tunnel, but I think there was a reason for the design. It was probably to keep the cable away from the door. Were there design problems? Yes, just like with everything else. However, in this case one could always just use bags.

Everyone I spoke to about that cable has said the same, “No one likes it”…with or without carpal you have to bend alot or even lay on ground just to get it in. Most people would need a flashlight. Its the a fact, that’s a design flaw. Its not smooth and easy as it suppose to be. Its not a friendly design. Everything matters to me…if you don’t report these things then Nxstage won’t ever know how to make it better.

I’ve had problems with PureFlow but it is still worth using. I started a new batch SUnday morning and was planning to start dialysis late afternoon. This past Sunday was my montly breakfast with a bunch of old friends, and my wife decided not to go. I got four calls from her because the batch was having problems. I told her not to sweat and I would just use bags that night. But when I got home I was able to resolve the issue and just postponed my tx a couple of hours. Still was better than using bags.

Inconvenienet, hours lost, schedule out of order. However, the backup bags do help in these cases. Just this morning I couldn’t make a batch, all for a #33 alarm…I remembered someone mentioned that in Nxstage Users Group and immediately solved the problem. I think I can live with the Pureflow, but certainly believe it can be made alot alot better

Erich, I didn’t understand your comment about the drain taking 3 hours – that’s only if the SAK is full at 60 liters. The time mechanism can’t determine what the volume of dialysate there is to drain. From what you described, it sounded like the bag wasn’t full. When I get done with my third 20 liter tx, I drain for about 10 minutes and stop-, and then go to a final flush.

That’s another thing that should be corrected. It should automatically be able to drain whats left.

Rich Berkowitz

NxStage 2/06
In-center 3/03[/quote]

My provider is switching everyone on the cycler with PureFlow back to bags after we go through our current supply of SACs. My provider is concerned about their inability to do a water test each time the PAC is changed.

I believe there are new aami guidelines but I am not sure the exact testing requirement (any aami insight would be much appreciated). I like the PureFlow v Bags but I remain committed to daily home hemodialysis and will switch over to bags while I evaluate my options.

[quote=Bill Peckham;13516]My provider is switching everyone on the cycler with PureFlow back to bags after we go through our current supply of SACs. My provider is concerned about their inability to do a water test each time the PAC is changed.

I believe there are new aami guidelines but I am not sure the exact testing requirement (any aami insight would be much appreciated). I like the PureFlow v Bags but I remain committed to daily home hemodialysis and will switch over to bags while I evaluate my options.[/quote]

Over here on my area the water from faucet even passes chloramine testing, but those PAKs don’t last. Manual says at least 12 weeks, well less than a month here.

The new aami guidelines, only affecting your area or the whole nation as whole?

Has anyone spoken to NxStage and determined the reason some are having problems with the pureflow while others are not?

Jane, its everybodies problem. Some people don’t talk about it and others like myself do talk about it. It’s a fact, everyone’s PAKs don’t last as suggested in the manual. Literally, they’re working on it…doing something about it.

I don’t believe anyone with the Pureflow Sl is having trouble-free problems. We’re all dealing with a problem or so then we find workarounds.

Its a great device, it really is…but needs improvement.

Gus,
I have read where some say their pureflow is working fine, no problems. Then there are others who have said they are having significant problems. Would that point to a manufacturing defect such as with the cartridges?

[quote=Jane;13524]Gus,
I have read where some say their pureflow is working fine, no problems. Then there are others who have said they are having significant problems. Would that point to a manufacturing defect such as with the cartridges?[/quote]

Like all manufacturing products any number of them leaving the warehouse will have defects and/or malfunctions…that’s the norm. It will be replaced and taken care of. Also, whats important to me is the end users experience with this device. Questions like…
Has it reduced independence a bit? Are some connectors hard to connect? How long does it take to connect the telephone like connector? Have you had any leaks? Have you ever needed to push this device? There are so many questions…the whole point here is ease of use and friendliness on maintaining it.

No I think the PureFlow is a good system there are just some unanswered questions that my provider has and point of fact my provider cuts no corners, dots every ‘i’, etc. It would help if there was more for me to link to in the way of official comment. It would also help if I could point to the aami guidelines but I’m going to bed (tomorrow is the Breakfast of Hope fund raiser featuring Issac Hayes).

I am continuing to use the PureFlow until the supplies I have - about a month’s worth - is used up. It is a good system that preforms as advertised, my provider is committed to daily home hemo using the System One. But until everyone’s concerns are accommodated, including people who have a narrow interpretation of current guidelines,my provider will provide the System One with bagged dialysate.

As has been often pointed out, this is new technology and it has to be used in the context of existing rules and regulations. A strict reading of current regulations would lead to the conclusion that each time the PAC is changed the change constitutes a new water treatment system. This is a legalistic reading which requires official comment. As new technology there are also novel components and materials that should be vetted completely.

I would put this news in the context of my provider meeting a number of challenges over a short period of time. Aksys went out of business at the same time the home program was commiting to doubling in size over the next three years. We now have I believe over 30 people on the System One after starting the year with I think 7. There’s nothing wrong with taking some time to digest all the changes.

I’ll be using the PureFlow for the next month and by the time I run through these supplies all the questions may be answered.

Gus,

It hurts my feelings reading that you think I’m stupid and ignorant.

I wasn’t comparing a machine with people. I was comparing experiences. Being at home versus being in center.

I’m not sure who you think I was being disrespecful of, the memory of Nancy the seventy-five year old woman, grandmother of ten, mother of three, retired school teacher to whom I was referring? I don’t see how what I wrote gave her any disrespect. I’m sorry if I somehow offended you.

My point is it is very difficult for me to be reminded of death which happens much more frequently in center than at home. The Pureflow and the System One are tools that allow me to cloud the truth of the reality of living with end stage renal disease.

Peace, Erich.