Who uses NxStage for nocturnal?

[MooseMom]

I know that NxStage is awaiting FDA approval for nocturnal, but how many of you use it this way anyway?

[Bill Peckham]

The idea that a device needed a separate indication for nocturnal is new and doesn't really make sense but it's the FDA and their rule making process.


I've been dialyzing while I sleep since January 2008.

[MooseMom]

Bill, what is the major practical difference between using NxStage for SDHD and using it for NHHD?  Is it just a matter of reducing the pump speed, lengthening the time and adjusting the heparin using a pump instead of an injection?  I know I'm trying to learn to drive before getting into the car, to use your analogy, but I'm curious NOW.

[boswife]

I'd love to hear too so thats two of us :-)

[Bill Peckham]

This is why the FDA's decision to consider nocturnal a separate indication is so frustrating - from the machine's point of view it is the same treatment, just longer.


Differences all flows from adding a heparin pump to the mix - you need a different cartridge and a couple different settings on the cycler. The only thing I do different is use more tape.

[MooseMom]

Differences all flows from adding a heparin pump to the mix - you need a different cartridge and a couple different settings on the cycler.

Yes, that's what I assumed.  My husband spoke to the clinic's head nurse yesterday, and she indicated that this was the case...it's a heparin issue more than anything, not a machine issue.  That's good to know.

She also said that there is only one other NxStage user in the entire county!  This surprised me but will not deter me.  Just makes me special!

[tyefly]

  I was told in Feb of this year when I started training with  Nxstage   that there was no one who did extended and no one did nocturnal with Nxstage.....  Even my insurance company told me and all others the same....  I was sure surprised..as I knew  Bill and others did extended....  now several months later .... with lots of documentation  my clinic understands that there is a extended Nxstage  and I have convienced them to let me do it.....  it took months.....  months   and alot of talking.....   and  MY doctors approval and help to which he is the Medical director for my clinic..... that helped...big time....   

I find it alarming to say the least  with so many clinics with so many different stories of what we can or can not do... policies are different  everywhere you go....

[Bill Peckham]

  I was told in Feb of this year when I started training with  Nxstage   that there was no one who did extended and no one did nocturnal with Nxstage.....  Even my insurance company told me and all others the same....  I was sure surprised..as I knew  Bill and others did extended....  now several months later .... with lots of documentation  my clinic understands that there is a extended Nxstage  and I have convienced them to let me do it.....  it took months.....  months   and alot of talking.....   and  MY doctors approval and help to which he is the Medical director for my clinic..... that helped...big time....   

I find it alarming to say the least  with so many clinics with so many different stories of what we can or can not do... policies are different  everywhere you go....

Way to go - one unit at a time.

The weirdest part is that nocturnal has been a better choice for 40 years, it isn't some new discovery. Using NxStage to dialyze overnight is as logical as using any machine to dialyze overnight.

[MooseMom]

When it comes time for me to start D, I am going to gently insist that longer and slower is better and that's what I want for myself thank you very much.  I can't imagine any clinic being able to convince me that thrice weekly in-clinic D is the best modality for me.  Ain't gonna happen.

[tyefly]

   Yes  MM....    Good for you .... like Bill said..... One unit at a time.... and one patient at a time...... 

[cookie2008]

I have been asking about doing nocturnal for the last couple months with my neph and he seems very interested in it.  My nurse is checking into it but no info yet.  I explained to my neph the sites on go on and he is going to check them out mainly Nxstageusers, when I see him in two weeks for my checkup hopefully he will have more info.

[Zach]

Here is a site for the Rubin Dialysis Center, which offers extended dialysis on the NxStage:
http://www.rubindialysis.org/nxstage.html
http://www.rubindialysis.org/daily.html

It's time that more centers around the country offer such programs.

[motreasures]

We're using the NxStage for daily home hemo now...we want to go to nocturnal & our clinic is working on setting it up & want us to be the first to do it (be their guinea pigs) which would be okay.  The question is, would our insurance provider/medicare possibly refuse payment if we got the clinic to let us use the NxStage system for nocturnal as it's not FDA approved? 

Also, we would have to use the bags, well-water in our part of the state has never met the criteria for the pure flow...we live on the iron range.  Would that be an issue to transitioning to nocturnal? 

I think if I direct our Nephrologist to this site, he would check it out and become more informed.  At our last clinic day he said he was researching other machines to do nocturnal.

Thanks for your expertise 

Mo

[rocker]

I see a reason for our clinic to instantly reject this.

"Internet monitoring"

"Sorry, we have no one doing remote monitoring so you can't do nocturnal."

The first NxStage we got didn't even have a jewelbox.

  - rocker

[Bill Peckham]

I see a reason for our clinic to instantly reject this.

"Internet monitoring"

"Sorry, we have no one doing remote monitoring so you can't do nocturnal."

The first NxStage we got didn't even have a jewelbox.

  - rocker

Monitoring is a NY State requirement. As far as I know it is the only state with such a requirement.