NxStage Device to Prepare High Purity Dialysate at Home

Discussions for Patients, Family, and Friends HD For Patients
21

I don’t fault NxStage for trumpeting the portability. I congratulate them for that. I do think their marketing department is a little over the top with the almost weekly news press releases which suggest they are the only thing going in home hemodialysis. Take for example the latest one about the water device, whatever it is ultimately. If you weren’t already familiar with home hemo, you would think that nobody else already does dialysis using tap water, and yet, we all do. This is not exactly an earth-shattering development. It’s good news for NxStage users who won’t be totally dependent on the dialysate bags, but it’s not really a new development in dialysis, is it?

And frankly, yes, I do get a little annoyed with the constant suggestions that what we “others” are doing is impossibly difficult. This puts people off daily nocturnal, which is arguably the Cadillac of dialysis treatments (OK, make that the Rolls Royce of dialysis treatments for the Brits and Aussies among us). It’s maybe a bit of a drudge (and one that even NxStage doesn’t eliminate as much as is suggested), but it’s not that difficult. The most difficult part of home hemo is cannulating and connecting ourselves successfully every day or night, and then taking ourselves off, and doing it all without infecting ourselves. That’s quite an accomplishment, but it’s one we all have to do no matter what machine we’re using.

Pierre

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Faith based dialysis?

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[quote=“Anonymous”]

Faith based dialysis?[/quote]

Hehehe…

P.S. I will show you pictures of me using it soon with more details and information how it works. Stay tuned… :smiley:

24

Pierre, You are not the only one getting annoyed at all the attention given to NxStage. Our guy was down to do our quarterly and he said it was getting on his nerves all the attention the center was giving to the NxStage. Our nephrologist is getting a little annoyed also over all the attention the NxStage is given by the staff. He is not jumping on the bandwagon that this is the best thing since grandma’s apple pie. Even though what we have to do isn’t by any means that troublesome, I think it’s good someone is looking to make things even easier. There are people in rural areas that don’t have enough water pressure from their wells to use the Fresenius. However, I wonder if treatments are being compromised to do this. At first I thought if you were going to have a daily program and only run 2-3 hrs. why wouldn’t you want the NxStage because it is so simple but then it was brought to my attention that you probably wouldn’t get as good a treatment with the NxStage in 2-3hrs that you do with a Fresenius. I also found it interesting in Nephrology News and Issues that when comparing set up time the PHD was actually shorter than the NxStage. I also don’t
see all the craze over a machine that limits you to daily treatments. That being said I can see the enthusisam in the machine because it does have the potential to make setup, teardown, cleaning, service and traveling much easier for patients but I think were getting ahead of ourselves on
the enthusisam.
The NxStage definitely has a reason for putting a weight limit on the patients the machine is suitable for and it’s not ready to be used nocturnally which I think are important issues.

25

Our experience with the RO and bicarb making is similiar to Cathy’s. And I truly wonder why we in the states aren’t privy to the premixed bicarb and an RO similiar to Pierre’s to save time. Pierre do you have a water softner and carbon tank or filter?

26

We were told by both NxStage and Aksys that their machines can be used nocturnally with stand alone heparin pumps. They said it is up to your doctor and ours has said yes.

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Keep us posted on your experience if you do nocturnal with one of the machines.

28

This is what I have:

A standard tap in my utility room for the water supply - cold water. I have a second tap for hot water, but it is not needed and it’s not in use.

The water goes through a small carbon tank which removes chloramine (the city puts this in the water). There are two of these little stand-up tanks, one is in reserve.

Then it goes into the RO.

Then it goes to the dialysis machine.

For electricity, the Fresenius uses standard power, just like your TV - and not a 240 volt outlet as many seem to assume. However, they do install a hospital grade power outlet which is equipped with a ground fault interrupter.

I don’t need a water softener where I live.

The plumbing and electrical work was done in just a couple of hours. There’s really not much to it, and frankly, I don’t see what the big deal is. There’s no more to it than if you installed a washer and dryer or a dishwasher in your home - and I know many dialyzors have done that. What’s more important to you, clean dishes or clean blood?

BTW, it’s not the marketing itself that upsets me, but the tone of it, and the fact that it’s so deliberately misleading.

Pierre

29

There’s good reasons that NxStage get alot of attention and what makes them popular? Its their goal of miniturizing dialysis…that’s the BUZZ word now…think small. Think different. Change.

Others are following that path, Aksys is already in the works of creating their new generation of smaller dialysis equipment for home use.
http://www.aksys.com/press/20051103.asp …and the rest will follow.

It will make life easier for us patients at home and there’s no complaining that it doesn’t do Nocturnal as it does and those options will be up to the patient to decide.

My invision for the future ahead is that these machines we use now will be a thing of the past. We will have Nano implants! Even better, kidneys re-grown into our own bodies!!.. :wink:

30

I am waiting for my center to get nxstage in. I think the bigest thing about it seems to be how portable it is. :smiley:

I have tried many times to go on vacation only to find that no center could take me or that even a lot of them don’t take people other than their regulars. :frowning:

The way things are going I also think before you know it they will be small enough to carry around in a back pack. :lol:

hemo since 1989 off and on
three times transplanted
hopefuly a fourth time in the not too distant future

31

I think it’s like Lance Armstrong said about winning the Tour de France. “It’s not about the bike”, meaning that he could have won just as easily on a Cannondale or a Colnago as he did on a Trek. It’s the daily hemodialysis that really matters, and it’s doing it at home which is the main convenience factor overall. It’s nice to have choices. Some of us don’t really have choices, we use the machines the “system” gives us, but luckily, these machines aren’t too shabby nowadays. It’s pretty hard to beat having a Fresenius 2008K @ Home next to your bed for daily nocturnal hemo. Once a NxStage can do nocturnal without a separate heparin pump, and with a connection to the water supply, then that will be a good choice too. All the different machines are good choices in their own way.

The main thing is that, while we may have different opinions among ourselves, we are all dialyzing at home, and most of us are saving our hearts by dialyzing daily.

Pierre

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Hey, your new here… :smiley:

longstobefree, Welcome! …soeaking about vacations it is hard! Well, conventionally speaking…worsest scenario is getting infections from distant clinics!!..

Yes, that’s it…smaller is better and that’s what most of us all want. We want freedom, we want to go places, we want to breathe freely…

Thanks for stopping by and sharing your thoughts…if you have any questions about NxStage you know where to find me… :smiley:

Also want to point out, if you ever want to do Nocturnal with NxStage ask your Doctor, they’re doing it already…it has been confirmed at my clinic where I was trained…believe it or not but I have dialyzed without heparin over 3 hours! I am not a heparin user at all so that holds promising surprises ahead…

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Hey Longstobefree
3 transplants and backing up for a 4th, that is pretty impressive! Tell us more. :o

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IU Physician is First in Nation to Use New Dialysis Device
InsideIndianaBusiness.com Report

4/19/2006 10:38:11 AM

Dr. Michael Kraus, a physician with the Indiana University Hospital, has become the first in the nation to treat a dialysis patient with PureFlow SL, a new device created by NxStage Medical, Inc.

The device allows patients suffering from total and irreversible loss of kidney function to be treated by hemodialysis at home, instead of in a clinic or hospital.

Source: Inside INdiana Business

Press Release

INDIANAPOLIS, IN- Michael Kraus, MD, medical director of the Continuous Ambulatory Peritoneal Dialysis and Acute Dialysis Units at Indiana University Hospital and the Indiana University School of Medicine, is the first in the nation to treat a dialysis patient with PureFlow SL, a new device created by NxStage Medical, Inc., that was cleared for clinical use last week by the Food and Drug Administration (FDA). The NxStage PureFlow SL device prepares high purity dialysate (a fluid that meets and exceeds dialysis industry standards for purity) from ordinary tap water in the dialysis patient’s home.

End-stage renal disease, which causes persons to experience a total and irreversible loss of kidney function, is most commonly treated by hemodialysis, a process that artificially separates toxins and excess water from the patient’s blood. Hemodialysis usually takes place in clinics or hospitals, though some units, such as the NxStage System One device, have been adapted for home use.

The NxStage PureFlow SL is an accessory to the NxStage System One device and is designed to prepare ultra pure water from ordinary tap water and mix this water with concentrate to produce high purity dialysate. With the push of a button, the PureFlow SL automatically produces a batch of dialysate fluid ready to use with the System One to perform home hemodialysis.

“The NxStage PureFlow SL is designed to give patients and their families an easier and more convenient way to manage their home hemodialysis therapy by eliminating the need for bagged fluids,” says Dr. Kraus. “This technology offers patients an easier way to make dialysate than standard therapies. The small, minimally intrusive device improves the economics of the delivery of dialysis in order to benefit a wider variety of patients. It’s as easy as turning on the faucet and pushing a button.”

The product is small in size (about the size of an end table) and is uniquely configured to overcome the ease of use, infrastructure, and purity limitations of more traditional water treatment systems.

“This new product will make it easier for patients to take control of their own therapy in the comfort of their own homes,” says Cathy Cox, Dialysis program coordinator at Indiana University Hospital, Clarian Health Partners. “With the new PureFlow SL, patients will no longer need to store and hang bagged fluid, and with the NxStage System One’s portability, patients can still travel using dialysate in bags.”

According to officials at NxStage, PureFlow SL is scheduled for a broad commercial release in July 2006.

For more information about the IU daily dialysis program, call (317) 274-4428. For more information on NxStage and its products, please visit the company’s website at http://www.nxstage.com.

Source: Indiana University

35

Thanks for stopping by and sharing your thoughts…if you have any questions about NxStage you know where to find me… :smiley:

Also want to point out, if you ever want to do Nocturnal with NxStage ask your Doctor, they’re doing it already…it has been confirmed at my clinic where I was trained…believe it or not but I have dialyzed without heparin over 3 hours! I am not a heparin user at all so that holds promising surprises ahead…[/quote]

I like the thought of the nocturnal but unfortunately my life is incredably buisy right now. Don’t think I would have time to do long over night hours. I like the thought of no fluid restrictions :smiley: maybe some day.
I recently lost my mother and my father needs full time care and I work full time. :roll: no rest for the wary.

I do have a question Gus not really just about nxstage as much as about fistula.

How is your fistula holding up being stuck every day? That is my real concern :? I mean like do you feel that the skin is getting too think or do you use the button hole stick? Any ideas or suggestions.

Would love to hear what you think.

36

The NxStage PureFlow SL device prepares high purity dialysate (a fluid that meets and exceeds dialysis industry standards for purity) from ordinary tap water in the dialysis patient’s home.

So it’s not ultra pure - it’s high purity, which I don’t think is a technically defined term, rather high purity is a marketing term. All dialysate used in the US is high purity, dialysis in many European units is ultra pure.

This technology offers patients an easier way to make dialysate than standard therapies.

What would be an example of a standard therapy? A standard RO? If so isn’t this just half of the equation - PureFlow SL produced dialysate is less work to prepare perhaps but there is also less available for use than with a standard RO. I feel the same way as Pierre. While clinically they are moving in the direction of standard machines like the B Braun – RO, disposable Kidney/blood tubing, integrated heparin pump – the marketing gives the impression that until this came along the only alternative was to “store and hang bagged fluid”.

37

Hi beachy I too have (FSGS) no one else in my family has ever had kidney problems so they don’t know where mine came from, :frowning: just lucky I guess LOL!

I found out in 1985 while I was pregnant that I had a kidney problem. They (Dr.) didn’t know what type as they couldn’t do a whole lot at the time because of the baby. Any way after the baby I had a biopsy and that was what they told me FSGS. I was treated with steroids during and after the pregnancy but no luck. In Jan. 1989 I went on dialysis my family was great as soon as they heard they started asking when they could be tested to give me a kidney. In Sept. of that year one of my sisters gave me a kidney. Things were going good for three years. I was on a 6 month check up schedule and my Dr. was just going to tell me I didn’t need to come back for a year when I started noticing fluid in my legs again.

The FSGS was back in the new kidney, :frowning: the kidney lasted another 2 years. Not all that bad when you think they said it would only last another 6 months.

August 1994 back on dialysis :frowning: another family meeting another transplant :slight_smile: this time from my brother. Transplanted in Jan. 1995. :smiley:

:shock: FSGS back again after only one year this time. The kidney lasted another 3 years.

Back on dialysis in Feb. of 1999 :roll:

I had already been placed on the transplant list. My family did get tested one more time but each time a member was tested they each were found to have some thing wrong that kept them from being able to give me a kidney.

Even though I had already had two transplants I was an easy match. My antigen count was only 3 wich is from my understanding extreemly low.

Dec. 2003 I got the call from my transplant Dr. they had a kidney for me. :smiley: I was sooooo excited.

The kidney took a few days to kick in but then it started working so happy. Then a few weeks later problems started they did all kinds of tests. Turns out rejection set in, the Dr. was optomistick though saying they could treat rejection. Just my luck I had a form of rejection resistant to treatment.

I had 4 months of hell with being sick I was in the hospital more than I was home for the next 4 months. Back on dialysis, but there are worse things.

Dr. says a 4th transplant is not out of the question but not for a while yet. The Dr. and I would like to see them make some advances in the treatment of FSGS.

I’m hopefull because they are doing all kinds of studies all the time.

Sorry long post but you asked for my story and there it is.

After that last transplant I developed an infection. That on top of all the meds they used trying to save the kidney made me pretty sick though. They really didn’t think I was going to make it.

Some Dr. think I’m gutsy others think I’m just crazy. But I guess we will just have to wait and see. :twisted:

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Your story sounds familiar - 'cept I went straight to transplant in '88 and haven’t tried for another kidney. Did you consider plasmapheresis?

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I tried plasmapheresis after the second transplant was failing, it didn’t make any differance.

I did plasmapheresis after the last transplant that only seemed to make things worse. It seem to excelle the damage with each treatment. :frowning:

I’ve heard of some people that it worked well for.

40

Hmmm, longstobefree, why did I know you were going to say you had FSGS… I admire your staying power going for a 4th! Good for you. I have just finished all the testing to get on the list over here. However I have to wait to be accepted for another 8 months as I had a melanoma removed several years ago and need the prescribed time to get the all clear. Doesn’t really make any difference in the long run as the list will go back to the time I started dialysis and our lists are state wide and the average wait is 5-7 years unless I am the top No 1 perfect match for the next kidney that comes available in the whole of Australia! I’m not sitting around waiting twiddling my thumbs, as you say dialysis isn’t all bad.

I took heart from your battles though, what a gal! It is great to know at least 2 others with FSGS. Plasmapheresis isn’t that readily available here yet and as for the test to see what the FSGS factor is, I think I would have to live in a major city to get that done, unless my Neph is just playing dumb.
Meanwhile life goes on and it ain’t half bad.
Cheers 8)