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?
After making 3 batches here’s my BUG…
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=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.
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.
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.
[quote=TheRiverdude;13528]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.
[COLOR=Black][B]I get you now, didn’t really mean to hurt you. Maybe if you said “I would rather have more frequent dialysis at home than beeing in-center facing higher mortality.” would have sounded much better
to my ears.
I really don’t talk about the people I knew who have passed, its just a moment of silence for me. Maybe a few good words about them, but that’s all.[/B]
[/COLOR]
[/quote]
Problems with the Pureflow SL…
It is a good addition to the System One…
In the short time that we have been using the pureflow We have experienced only one failure… PAK failed… sinced replacing it no problems… It works as promised… It even cleared our Alarm #14…one month sleeping well… dialysate flow rate back down to 2.8.
Because the tap water varies from location to location the PAK will have different life spans. When we were using the Fresenius and a RO water system. Testing the different components of the water system and replacing what was not within specification made it a lot harder system to maintain… The PAK is the same concept exept the whole unit has to be replaced… in the RO water system, if my hardness was too high I could regenerate the water softner, if my chlorine reading was out of limit I changed out charcoal sacks (filter), if the water was not the proper reading following the RO the filter within the system could be changed, not enough water pressure, change the filter… The PAK does all of these functions to get ultrapure water to use in the dialysate… So you will never know how long each one will last… If you are having Chlorine/Chlorimine problems I know that I will have them during the winter months… our city seems to spike the water with more chlorimine during the winter to keep the bacteria in check. Any way that is what happened in the past few years… Yes; the City know that they will get a call from me and their standard answer is we will check the supply…
As far as the connector on the PAK… It is not easy to install… but once connected it’s not like you have to do it every time you make a batch… If the PAK lasts 12 weeks on the average then it’s (52 divided by 12 = 4.34 times a year) Big deal 5 times a year… you get a flash light to see what you are doing…it’s not that difficult… Bet that is what the designers were thinking… But when we all state our displeasure about it. The next generation will have this fixed… a quick fix would be to get a short cable(6 inches) made that would be plugged into the control unit after it was installed into the frame then the PAK could be plugged into the other end…
HemoHelper
It’s my understanding from talking with NxStage that some of the variability in how long the PAK lasts relates to saline in the water that reduces the life of the PAK. I would bet that people living on the coasts would have to replace the PAK more often than those living farther from the coasts. Maybe that’s why some people have reported their PAKs last 12 weeks whereas Gus reports his lasts much less.
Hello Beth, we have more reports of this problem. Its happening around, not just from patients in California. Its questionable and knowing the facts why this happens will soon self be reavealed. It could be anything really, perhaps malfunctioning CU software or even the sensors. A handful of Pureflow Sl’s with defects or malfunctions can leave the warehouse to home patients and these issues are beeing addressed when discovered, so in the case of PAKs not lasting, this problem is beeing addressed. My main concern is that I hope our lives are not at stake, all for a defective medical device.
Gus,
As I stated on the Nxstage message board.
My pak only lasts 2 weeks because I use 60L a night.
So basiclly I use 720L before mine gives out. I also run for
8 hrs a night or 96 hours. Don’t know if that will help but I have
it down to a science now.
Also my drain line was giving me problems partly because I had about
10’ rolled up behind the Pureflow before in went another 10’ into
the drain.
Well last week-end I pulled all the extra through the wall and cut
to only what I needed. Put some clorox solution into the line and
low and behold!! Walah!! no alarm.
Pureflow is the best!!!
Sorry for the cross over but thought both worth passing on.
Pat