I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on June 05, 2014, 08:10:56 AM
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Hello,
I have heard that NX Stage is being accepted by NHS officials to be used on the NHS in the UK,
but some nephrologists don't seem to be overly keen on NX Stage and I wonder why ...
Does anyone know why that is so? How safe is NXStage in the UK ?
Could it be that NXStage in the UK is not of the same high standard quality as NX stage in the USA?
Thanks from Kristina.
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Nxstage is the same everywhere. The issue often comes down to training and what the doctor is familiar with.
When we first tried to get Nxstage here in our area we were told they werent comfortable with it and they prefer the Fresenius system. WE pushed and got Nxstage and they watched us for a year and saw how well my wife did. Now the nephrologists here prefer Nxstage and the nurses love it . There are at least 6 other patients in this area using it. My wifes nephrologist admitted they see how much better the patients feel on Nxstage and are impressed with it.
The nurses love it as it is easy to use and the patients all tell them how much better they feel .
We have been using it 2 years and are quite happy .
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NxStage cyclers for the US or UK are made in Mexico.
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The NXstage has been around in the UK for some years, tested first at the Lister Hospital by Dr Roger Greenwood and his team (I went and had a chat with him with my consultant) It was first introduced in the UK in 2011.
I was offered the NXstage when the home heamo doc changed under my hospital. However he informed me I'd 'have' to do daily dialysis to get the same clearance as any other machine. I declined.
Personally, unless you have a van, or people carrier, its much the same as any other machine, and I wouldn't consider it truly portable. Yet.
They did trial it again in our unit last year, but didn't sell the contract.
Many who do use it however praise it, and do similar hours to my every other day 4 hours at home, and state that its fine for them.
I think its available IF hospitals are convinced patients once it. It also has, as yet no competition in the 'portability field' although the Quanta etc are likely to hit the markets in the next decade if not sooner.
Its basically adapted from PD (although NXstage reps will differ on this) although it is a lot smaller than conventional machines it bears no competition with PD in reality.
It does seem there's a difference between levels of care/whats available throughout the UK and this is highlighted in the Kidney Health Report from 2013..
I've only read it briefly ;)
http://www.britishkidney-pa.co.uk/images/stories/downloads/Kidney-Health-Report.pdf
In addition there are many threads, on many forums worldwide on NXstage useage in the UK including the KidneyPatientGuide board and HomeDialysisCentral
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I live in the US but NxStage machine is same wherever you use it. JW77, I find your comment about NxStage and PD being the same very puzzling. It's a bit like comparing apples with bananas; they are both fruit but that is all. The only similarity with NxStage and PD is that they both use bags (if you do not use Pureflow with NxStage) and they both use a drop- in cartridge. NxStage, even when used as short daily delivers better adequacy than PD. Do get reasonable adequacy with PD, your peritoneal membrane is dialyzing 24 hours a day, seven days a week (bear in mind, if someone is using a cycler, all that is, is a pump to pump fluid in and out). Of course there are drawbacks with NxStage, and as discussed frequently, more is better, but it is essentially weighing up adequacy against quality of life, (I have yet to find a way to sleep while doing extended), and I currently do every other day for 3 to 3.5 hours a time. My adequacy is far better than it ever was with PD, even going back to the days when I first started doing PD; here, I am considering adequacy from PD alone, and not factoring the residual renal function that I had at that time.
At the current time, NxStage, is the only portable hemo-dialysis machine. It is cumbersome but, In the 2.5 years that I have been on NxStage, I have taken five trips to Florida, a trip to Maryland, and a two week trip to the UK. Over the next few weeks, we are spending weekends in North Carolina and Maryland. I plan on dialyzing before I leave, and When I come home, and not even having the hassle of taking my machine with me.
I am a great believer that we are more than a set of lab results. I feel well on NxStage, and have no recovery time, something that cannot be said for the time that I spent doing in-unit hemo. PD did work well for me when I had residual renal function, didn't work so well after I had lost that, and I felt like crap all of the time. If you are contemplating, going down the transplant route, then PD is a good stop-gap treatment.
The other advantage of NxStage over a full size machine at home, is that it really doesn't require plumbing, other than a connection to your water intake.
I really don't know much about the Quanta, but NxStage has been tried and tested over a good few years now.
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My point being was, as I understand it, they got the initial idea from PD and PD bags. Thats all. It was never designed afresh as a heamo machine, as I understand it:)
I dialyse the same as you with the acceptation of 4 hours every other day. Different from what the doc told me was necessary! :)
The main thing is to live and be healthy! :)
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Oh, now I understand. I know that More is better, but I really believe that it really is about a balance. Between physical and psychological well-being and what works for your lifestyle. Have tried many configurations , including extended, which I know is the best option, but I simply cannot sleep or be comfortable for that length of time. It frustrates me no end that I can't, so I try to achieve a workable solution. If I do longer and more days, then I feel as if that is all I end up doing is dialysis and I don't do dialysis for the sake of doing dialysis.
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My point being was, as I understand it, they got the initial idea from PD and PD bags. Thats all. It was never designed afresh as a heamo machine, as I understand it:)
I dialyse the same as you with the acceptation of 4 hours every other day. Different from what the doc told me was necessary! :)
The main thing is to live and be healthy! :)
At 4 hours every other day you are still below the "magic" number of 17 hours per week . Thats 10% of total time. That is why we like Nxstage because it allows longer hours and more frequent dialysis. Yes other machines could do this but generally it it isnt done.
Also I dont get the whole clearance thing . WE test for urea clearance generally but it is meaningless. The middle molocules need TIME to be cleared and we generally DONT test for them . So with my wife for example being on the machine 17.5 hours a week we actually get more clearance of middle molocules than the bigger machines at 3 to 4 times per week at 4 hours per session. Its a slower more gentle dialysis than is less stressful on the body. Then there is the ultrapure dialysate with less inflammatory issues .
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Thank you obsidianom for the information.
I am glad that NXStage is the same everywhere.
Perhaps some UK nephrologists are waiting to have NXStage approved
by the (often non medical) directors of their nephrology Clinic...
Thank you speedy1wrc for this information, I did not know that NXStage was produced in Mexico.
Hello JW77 and thanks for the information about NXStage.
Isn’t the Lister Hospital a very” private hospital only” in Chelsea near the Albert Bridge?
Was NXStage first introduced to the private health sector in the UK like the Lister
and NHS consultants learned about NXStage from private consultants?
... I thought it very intriguing that you went to the Lister with your (NHS?) consultant...
...Did you go there as a representative of a NHS kidney organisation/charity to learn
and inform other dialysis users later about NXStage as a new NXStage user?
Thanks Amanda100Wilson for your detailed information about your experiences,
it is very much appreciated.
Many thanks from Kristina.
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Many local health authorities here have signed contracts with Fresenius so they would built the clinics. Only when all Fresinius machines in an Authority are filled you'll get the Nxstage (that's what happened in mine anyway) And then I still get to hear frome some nephs that I'm realy expensive.
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Many local health authorities here have signed contracts with Fresenius so they would built the clinics. Only when all Fresinius machines in an Authority are filled you'll get the Nxstage (that's what happened in mine anyway) And then I still get to hear frome some nephs that I'm realy expensive.
AND THAT LADIES AND GENTLEMEN IS THE BOTTOM LINE!!!!! Nxstage is MORE EXPENSIVE than the Fresenius machine and fresenius doesnt like it. That is why some nephrologists dont like Nxstage. IT IS ALL ABOUT MONEY!!!
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@kristina.. Negative.. The Lister hospital I am referring to is the Lister Hospital in Stevenage, in Herts.
Here's one of the original stories covered by the BBC, back in 2009. No I didn't go as a representative,(other than representing myself, which I do far far more frequently) I went as a curious barsteward with a positive consultant.
http://news.bbc.co.uk/1/hi/england/beds/bucks/herts/8130911.stm
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Thanks JW77for correcting that.
I associated you with living around London and the Lister in Chelsea is the only Hospital with that name in London
which I have heard of...
Thanks for sharing this interesting article with us about NXStage .
It just goes to show that the NHS executives promote NXStage,
whereas NHS nephrologists and their (often non medical) Hospital directors are careful about the costs involved ...