NxStage frustration!

Discussions for Patients, Family, and Friends HD For Patients
1

Oh dear god I hate this ridiculous machine. The design is horrible, the user interface is a joke, the manual was written by someone who apparently had never actually looked at the machine in person. I’ve been on every type of dialysis available since 1994, had three transplants, and now the latest is failing and I’ve had to go back on dialysis. My last home hemo machine was so much better than in center, that I chose to go directly back to home hemo. Only that machine is no longer available, so instead I was trained on the NxStage Purecrap system. DISCLAIMER: I help write technical manuals, and assembly procedures for a company that builds environmental and biological research instruments. Therefore when I read in the NxStage manual to press the “Go” button, I assumed there would be a button labeled “Go”. But of course not, that would make to much sense. Also, since I was previously familiar with home hemo, I assumed there would be a button I could press that would rinse me back in an emergency, not so. The machine isn’t even ambidextrious! Am I the only one with a LEFT arm AV fistula? And to travel with this monstrosity? Are you kidding me? Think of the hassle, lugging the thing across country while on your vacation (don’t forget the U-Haul just for the supplies unless you are staying in one place the whole time). Then take 3 hours of your day, every day of your vacation to dialize. How fun. I understand the desire to design and build a simple yet functional machine, but boy did they ever drop the ball on this one. I am calling the dialysis center tomorrow to have them come remove it from the premises. It was less hassle when I had to do in center treatments.

For those of you who’s only experience with home hemo is on the NxStage, I apologize for what you’ve had to deal with. There is much better technology out there. But right now, it has been shelved. Hopefully soon it will once again be put to good use. Because this thing is a freakin’ nightmare compared to what used to be.

JDL
The National Kidney Foundation of Nebraskas Patient of the Year, 2005

2

My question is why did you wait until you had the machine home before you decided you didnt like it. Did you not go through training to see if you liked the machine first? Perhaps you did not read the manual fully before you started using the machine. Regarding rinse back… your right there is not one button to press to rinse yourelf back in emergency. It takes two buttons…big deal…
You say that there is better technology but it has been shelved. Can you provide an example?
In my opinion, the NxStage System One is a great start for the advancement for the future of Dialysis. I am currently on the NxStage and could not disagree with you more. I travel without problem. Perhaps the simplicity of the machine is too much for you to handle. Perhaps you were not trained properly You should not have taken the machine home and wasted the resources and expense to start using it and then decide you dont like it.
Sorry you feel this way…

3

[QUOTE=Unregistered;16915]My question is why did you wait until you had the machine home before you decided you didnt like it. Did you not go through training to see if you liked the machine first? Perhaps you did not read the manual fully before you started using the machine. Regarding rinse back… your right there is not one button to press to rinse yourelf back in emergency. It takes two buttons…big deal…
You say that there is better technology but it has been shelved. Can you provide an example?
In my opinion, the NxStage System One is a great start for the advancement for the future of Dialysis. I am currently on the NxStage and could not disagree with you more. I travel without problem. Perhaps the simplicity of the machine is too much for you to handle. Perhaps you were not trained properly You should not have taken the machine home and wasted the resources and expense to start using it and then decide you dont like it.
Sorry you feel this way…[/QUOTE]

I went through all the training, I read the manual, I thought I could make it work even though I saw terrible design flaws the first day of treatment. What is your frame of reference? What other home machines have you’ve been on? Maybe you are just use to it, and don’t have any knowledge of other machines to compare it to. The Aksys machine was much easier to use, with less hassle, and fewer consumables. The NxStage machine is poorly designed, using 1980’s Atari technology. It was dumbed down for some reason, and I don’t understand why. Is a touch screen to much to ask for?

4

Yeah, the aksys machine was easier to use.

BUT

The aksys machine was so complex internally it broke down if you glared at it.
Also anyone remember the fiberglass mixing tanks? Can’t count how many I saw replaced.
Then the new stainless steel ones, sure they wouldn’t bust, but how about the issue where they would fail the conductivity tests because of the design flaw that didn’t allow all the acid/bicarbonate to rinse from the bottles.

It is easy to say how some things are better, but speaking of traveling… where did you take the aksys machine??? absolutely nowhere

Every machine has its pros and cons. I am not saying that the nxstage machine is perfect, no machine ever will be for every single patient, because every patient is different.

5

Are you kidding me?

6

You know the old saying, “you can please some of the people some of the time, and some of the people all of the time, but you can’t please ALL of the people all of the time”? It’s just as true for dialysis machines as it is for everything else. The NxStage System One machine has really helped aid a resurgence of home hemo–more than 3,000 people use it now in the U.S., a number that hasn’t been seen here since 1995. Does that mean it’s perfect for everyone? Of course not.

At Home Dialysis Central, we support making as many modality and machine options available as possible, because no single machine will ever be perfect for everyone. It’s looking like if you hang in there with NxStage, there will be several other options coming out over the next 3-5 years or so (probably including NxStage upgrades, if I had to guess). Or, you could switch to a more conventional machine now. Unfortunately, the Aksys PHD is no longer available, so, as frustrating as that is, there’s not a lot of point in looking backward.

7

[B]Nxstage has made a HUGE stride in the history of home hemodialysis and they did it all with simplicity. It all boils down to economics.

You cannot start the home dialysis revolution with fancies such as touch screen which wasn’t economically viable with current medicare reimbursements.

The historical footprint that Nxstage has started just opened the doors for some incredible innovations ahead of us including Nano Dialysis. Maybe some of us doing home dialysis now won’t see the coming but many many people ahead of us will. [/B]

8

I know you’re right, you can’t please everyone all the time, but I am just seriously disapointed in the NxStage machine. As far as traveling with it, it will most likely never leave my house anyway. The amount of supplies makes it almost impossible for me to do the type of traveling I do while hauling it around. It just doesn’t make sense for me to haul it, and all the supplies, around the country, only to require me to use up over 3 hours a day in set up and treatment times anyway. So the convienence isn’t there, it just isn’t. Unless you only travel by RV. The buttons and display are also a nightmare, as I said, 1980’s Atari tech at it’s worst. If I wanted an old school look and feel to my life saving medical equipment, I’d change it over to a Nixie tube display. At least then it would put out a nice warm glow that I could warm up by, as the NxStage has no temp control. I can only hope that the competition working on home hemo machines right now are close to completion. At this point just about anything that comes on the market will be so far ahead of the NxStage, people will look back and laugh at what we are using now. Being in a related field may be causing me to be to close to the problem. I know what types of parts, and technology are out there, and how far behind this thing is in comparison.

Look familiar?

9

Not at all. If people didn’t reach forward we would all be dead now. If this is the best out there, then we are stuck in a rut and it’s time for the next generation.

Don’t settle.

10

Hi Folks

Just what I wanted to read first thing in the am. I know I’ve not be on dialysis long. But from the short time I had and from this site and others. The thing I do understand is the nxstage maybe late 20th century tech. But from my in center time and seeing what was out there this machine is at least a step in the right direction. For me it not the machine it the thinking in the at large dialysis world. Change the thinking that everyone on dialysis needs to walked hand in hand with a renal team across the street, or we need someone to wipe our noses and maybe the advances will come faster.

I don’t know if you have been on this site before, since you didn’t see fit to use your name. And as you said the nxstage is like a atari, but look at what we have now. For that matter look at anything. From my understanding of kidney failure the not so distance past offer what?
Look , it a machine build by humans to try and help and move dialysis in the right way. Maybe I live to see the day when kidney failure can be fix from replacement generic kidneys. Maybe sometime organ failure can be held off by advances in medinces. It would be great for me to see that, the changes Ive seen in my life people might have said the same thing yrs ago. I would loved to have a computer and the net and all the groups that out there offering insight and help , maybe if I had these things back in the day. Myself and others wouldn’t be so screwed up.

What a load… Thanks, I now won’t go to read my NYTimes, till later. Your own last tid bit said it all you just can’t read. Your not dead …

[QUOTE=Unregistered;16925]Not at all. If people didn’t reach forward we would all be dead now. If this is the best out there, then we are stuck in a rut and it’s time for the next generation.

Don’t settle.[/QUOTE]

thanks
bob obrien

11

In the early days of home HD, people used a washing machine to do their dialysis and they had to build their own dialyzer. People on PD had to hang heavy glass bottles on a huge machine. Now they were the pioneers.

We have a long way to go to make dialysis fit perfectly into someone’s life, but we’re making progress. Hopefully some day down the road, there will be a cure for kidney failure (more than the option of transplantation) and all of us who work in the field will have to retire or find new jobs.

If you want to see some of the dialysis machines from the past, check out the Dialysis Museum:
http://www.homedialysis.org/learn/museum/

12

I’m new here and don’t have a user name yet. Just waiting for my registration to go through. I understand that this is better than what we had, but it’s not as good as what we could have using exisiting technology. That is what irrritates me. I guess I am the only one who expected more from this machine.

Settling for “better than what we had” is the wrong mind set IMO. As is the “they did it to cut costs” explanation. This is life saving equipment, cutting costs is not what I want to hear from anyone as to why the user interface is poorly done. And to be honest, it isn’t better than what we had. The Aksys machine was better, much better. It had flaws also, but the kinks could have been worked out. NxStage instead decided to make a machine that was less prone to problems, but is completely under-designed, and entirely NOT user freindly.

NxStage could take the same basic chassis, redo the key pad and screen, add on screen instructions, and this thing would be 10X better than it is. And I bet it could be done for relatively minimal added cost to the end product.

Anyway, I’ve stated my thoughts and all I got for the most part was people who disagree with me. So I will let it go. Apparently this wasn’t the right board for this type of discussion. I’ll quietly take my plight for a better home hemo machine elsewhere.

13

I think a LOT of folks are interested in your specifics for how to make the System One (and other machines) better, unregistered. Please feel free to share those–a lot of industry folks read these boards, and may learn something from you that would help others.

Or, it sounds like you just might have the perfect background to offer consulting services. NxStage, I believe, has a consumer board that might benefit from hearing your suggestions. Ideas for improvement are always welcome. It’s whining that makes folks cranky. :wink:

14

[quote=Unregistered;16928]I’m new here and don’t have a user name yet. Just waiting for my registration to go through. I understand that this is better than what we had, but it’s not as good as what we could have using exisiting technology. That is what irrritates me. I guess I am the only one who expected more from this machine.

Settling for “better than what we had” is the wrong mind set IMO. As is the “they did it to cut costs” explanation. This is life saving equipment, cutting costs is not what I want to hear from anyone as to why the user interface is poorly done. And to be honest, it isn’t better than what we had. The Aksys machine was better, much better. It had flaws also, but the kinks could have been worked out. NxStage instead decided to make a machine that was less prone to problems, but is completely under-designed, and entirely NOT user freindly.

NxStage could take the same basic chassis, redo the key pad and screen, add on screen instructions, and this thing would be 10X better than it is. And I bet it could be done for relatively minimal added cost to the end product.

Anyway, I’ve stated my thoughts and all I got for the most part was people who disagree with me. So I will let it go. Apparently this wasn’t the right board for this type of discussion. I’ll quietly take my plight for a better home hemo machine elsewhere.[/quote]

I think they already are in those plans of bringing the next generation “Nxstage System Two” … you think with the success they have now with their current machine they will stay like that forever? heck no!! Like anything else, planning takes time. It is quite exciting how the home dialysis revolution is evolving. All the competition out there is proof that we’re in high gear now and nothing is gonna stop this trend. Some impressive technologies out there indeed and sooner or later these small machines we’re using now will be history. Later down the road you’d be saying, “Heck, I got something better inside than that little candy box” …hehehe

15

Hi Folks

Hi Unregistered
Please if your on home dialysis join us. I’ve worked on all types of machines. And the one thing they all in have in common is they are machines. Build by non perfect humans. But the one thing we humans have in common , we keep moving forward. The nxstage one, isn’t the best, but from nxstage I found they are open to ideas , comments. Any time I get a chance to talk with our rep. I let him how things are going and what I would to see in next model.

thanks
bob obrien

16

I’ve used both the Fresenius and the NxStage at home. I did not choose the Aksys due to the poor reliability and the fact that it took 8 hours to get ready for a treatment. I was not home to clear any kind of alarm so ilt would not be ready many days.

I can tell that you do not use the Pureflow. With the pureflow I need a cartridge and a bag of saline as supplies. I get approximately 7 boxes of smaller than saline size, a couple of boxes of saline and 4 boxes slightly larger than saline boxes a month for supplies (not counting needles etc.). This is not too much.

I like the fact that the NxStage machine assumes I am not an idiot and doesn’t prompt me for everything. That only slows things down. I can prep my machine and be in within 30 minutes, much less time than the Fresenius. Not having an ro makes my life so much easier.

I get a kt/v of greater than 3 on the NxStage and the rest of my number are great. I am just starting nocturnal so will have all of my days free.

Could the machine be better, sure, but in my opinion it is the best home option out there right now. It is so easy to operate that when I broke my leg and was wobbly from pain meds etc. (bad break requiring surgery etc.) I was able to talk my brother through the set up and making the dialysate and he had never touched the machine in his life. In training on the second day, following NxStage’s step by step set up instructions, I set the machine up by myself. My then 12 year old son figured out the complete set up just by watching me a couple of times.

Any new machine takes time to get used to. Many people have complained about their machines the first few weeks and then you start hearing about how wonderful life is with a NxStage. If you truly are so unhappy, switch to a Fresenius, the only other option out there at this time, although most centers will not support the Fresenius any more.

Cathy S
4+ years home hemo 2 1/2+ years NxStage

17

I think JDL does use the System Two (NxStage/PureFlow).

I hear you. I used the PHD for four+ years. I was switched to NxStage in Jan. '07. I was starting to burnout trying to do frequent evening treatments. By Nov. 2007 I was looking at all my options. I decided to give frequent nocturnal using the System One (NxStage with bags) and a stand alone heparin pump. I am very happy with this change.

Nothing like getting enough dialysis to smooth out a machine’s quirks. It is not an easy nut to crack. Low reimbursement is a ceiling on innovation, with a new expanded bundle set to go into effect in 2011 we need to act now or the conventional dialysis status quo will be set in stone.

There will be new machines in the next couple of years. I expect a System 3 from NxStage, a new DEKA/Baxter device based on the Aksys technology, a sorbent system from Xcorporeal, Home Hemo Plus has something in the works, and others from around the world.

I see my job as getting as much dialysis as I can stand as often as I can stand it. Conventional incenter dialysis is so unhealthy I’d suggest reevaluating all your options before returning to three days a week. When I was evaluating my options my thinking was there is very little downside to trying nocturnal. If it wasn’t a good fit at least I’d know.

It’s hard to stay down on the farm after you’ve seen Paris. But what can you do? Paris just isn’t an option right now.

18

Dori, if what you’re referring to as the NxStage consumer board is their User Advisory Panel, then I’m one of it’s members, and am always interested in what others have to say about the System One and PureFlow. We always ask our members at NxStage_Users on Yahoo what they want us to bring up with management.

I, too, would like to hear the specifics that Unregistered has about what s/he believes are the shortcomings of the system. It may be a surprise to him, but many NxStagers already have and the User Advisory Panel has not been shy to talk to management about them. And don’t think that
NxStage hasn’t been interested in what has been brought up, because they have been.

However, I don’t understand some of the complaints that Unregistered has unfurled. S/he seems to have a big problem with dialyzing more frequently than three time per week having stated “It was less hassle when I had to do in center treatments” and “Then take 3 hours of your day, every day of your vacation to dialize. How fun.” Well yeah, it was less hassle doing in-center treatments, except for waking up at 5am and fighting wintry weather. Doing in-center meant plopping down in a chair, sticking your arm out and letting somebody else doing the work of setting up the machine and sticking you while you basically did nothing. Home dialysis means taking charge of your own treatment and life. It means the responsibility of dialyzing more frequently so you can get more out of your treatments and live a more productive and healthier life. Dialyzing six days per week is less hassle than three, but as everybody on this forum knows it means the probability of a longer life with dialysis is greater. And I assume in many ways living with a transplant will give a person much more freedom so one’s vacation would be less hassle, but for most CKD5 patients a transplant is in the future while waiting for a cadaver or out of the question for another reason. So hearing “As far as traveling with it, it will most likely never leave my house anyway. The amount of supplies makes it almost impossible for me to do the type of traveling I do while hauling it around. It just doesn’t make sense for me to haul it, and all the supplies, around the country, only to require me to use up over 3 hours a day in set up and treatment times anyway. So the convienence isn’t there, it just isn’t. Unless you only travel by RV.” Well I have travelled with my NxStage. No, it might not have been the travelling our Unregistered participant envisioned. Mine was to one stop in the northern woods and I had NxStage deliver my week’s worth of supplies right to the door, and I had an absolutely exhilerating time. However, I could see having supplies sent to multiple locations or arranging to pick up supplies at different clinics as I went about a travel trip.

S/he seems to have been putting ther onus on NxStage for an all encompassing perfect design because it’s the only viable truly home machine on the market today. It’s not NxStage’s fault that Aksys didn’t survive, and it’s certainly not because of them that others haven’t entered the market sooner. NxStage designed their machine as they did for whatever reasons they had, and I’m sure future competitor machines will force them to rethink the design. But we’re dealing with the here and now, and those of us who want the benefits of home dialysis and more frequent dialysis are happy that NxStage is here to help satisify our needs. I could go on and answer all of the issues brought uo, but I think you get my drift.

BTW, I also have a upper left arm AVF and do indeed the NxStage cycler is an ambidexterous machine – it’s just a matter of which side you put it!

19

First off, Hi Bill, I see you figured out who I am. I wondered what had happened to you after the collaspse of Aksys. Hope you are well.

Second, Rich, I did daily home hemo for several years on the Aksys PHD and was very happy with it. Six times a week hemo is nothing new for me, but having it take over 3 hours a day is. I did in center for years before that, and CAPD before that. My third transplant has just failed due to reoccurance of FSGS. I’ve been around the dialysis block more than once. The machine is on the left, and it’s still a tough reach for the buttons (which don’t work properly, poor vendor choice, and poor design for the part). I’m also not blaming them for Aksys failing, that was Aksys’ fault. I am blaming them for the design flaws of their own machine. With the right input and people, this machine could be much better, thus giving it a longer lifespan. If they don’t upgrade it soon, they too will fail.

And third, apparently Dori is right, NxStage does read these boards. Hopefully something good can come of it.

JDL

20

Whoops, forgot I had signed the first post as JDL. Anyway, our paths have crossed before, on paper anyway.