How to change prescription on NxStage?

[Black]

On 8/9/07 Mike went to the clinic for his monthly visit.  The neph and home program nurse (nurse is new to the position - the one that NxStage trained and who trained us, left) told him that his kidneys are continuing to fail, his Kt/V is not good enough, and that he needs to increase his dialysis.  BUT, no one knew how to reset the NxStage to do that, or really knew what the new settings should be.  Mike told them that we have the manual and that if we had any problems we could call the tech support.  (Apparently, they were discussing knowing how to increase the dialysate from the current amount of 22.5, to the new 25.)  Mike said there was also discussion between the neph and the nurse as to whether that would be the best course of action and whether they should also change the dialysate speed.  They actually admitted to him that he and I know more about the the NxStage machine than they do.  So, they said they will do some research and get back to us.

Anyway, it's now the evening of 8/17/07 and we still have not heard what to do.  Is this a long time to wait for instructions regarding changing his prescription?  The Kt/V was calculated on LAST MONTHS blood work and I'm getting impatient to increase because he does not seem to be feeling as well as he should.

[skyedogrocks]

I would call NX Stage technical and ask them how to do this.  Also, did you look it up in your manual?  It should state that.  I would call your Neph and your nuse on Monday to get the exact info on what needs to change.  Your nurse should be working with you to get to the best kt/v.  Also, if his dialisate is changing, you need the nurse to call in the new prescription for that.

Rob's kt/v is just 2 points from being where they want it.  So, he went down to a speed of 400 and flow fraction of 32.  Rob seems to be doing much better on this.  We are hoping his numbers come back much better this month.   Maybe your nurse could work that out with you?

[jbeany]

I don't understand why changing from 22 to 25 L is a problem - you don't have to have the machine preset for that - just bump up the L vol amount  in the top window on the volume screen when entering your UF goal in the middle.  Mine always shows up as 15 L anyhow, and I have to manually set it to 20.

Changing the pump speed up or down?  I thought changing the pump speed only adjusted how long your session ran - although it will also affect how much blood is processed, I suppose.  I would think that bumping it up would depend more on what his access can handle, not what the doc thinks it should be.  The arterial pressure is supposed stay under 200. 

If they are trying to adjust how much is processed overall, they need to be adjusting the fluid fraction, not the pump speed.

[Black]

Yep, there are more questions than answers.  They were not happy with the kt/v but could not decide what need to be changed.  They seemed to agree on setting the dialysate at 25 but could not agree on anything else.

The dialysis nurse called late Friday (40 minutes before they closed) and left a message to call her.  I called back on Monday and she was with a patient and said she would call back.  She called on Tues and said to increase the dialysate to 25.  Mike told here that the other nurse and the neph had said they would call NxStage and ask about what else they need to change because neither of them know enough about the NxStage to know if the dialysate was the only thing they need to change to improve the kt/v.  She was not aware of that discussion and had no idea if NxStage had been contacted.  She said there was only a note to change the dialysate to 25, so she would consult the other nurse and the neph to see if NxStage had been called.  (Mike said that note was written while he was there and BEFORE the discussion about contacting NxStage.)

It is so frustrating that the only person who has had any contact with NxStage left a few weeks after our training ended in Feb, and no one else seems intertested in learning anything.  The dialysis nurse in charge of the home dialysis program told us if it were up to her there would be no one on NxStage and she had no interest in training anyone.  She apparently wants everyone on PD, or in center.  Most of the time she refers to her department as the "PD Department".  Arrrgghhhhhhh!     She has over 30 years experience with dialysis patients but doesn't seem to be interested in giving them a better quality of life with home hemo and the NxStage.   

Anyway, it has been two weeks and still no idea what his new perscription should be.  I can follow the directions in the manual to make the changes, I just need to know what needs to be changed and what to change them to!!!!

[Black]

WOW!!  I'm still in shock.  The machine got reset today but that wasn't the shocking thing.

When I spoke to the dialysis nurse at our center a couple of days ago, she said that she had spoken to the NxStage nurse and the NxStage nurse would be calling me with instructions to change the machine settings.

During the conversation the dialysis nurse/head of the home program, said that NxStage would not be sending anyone to train her, or anyone else, until they have another patient ready to train AND that they have no one to train.  She said a couple of patients were interested but one had other health issues, and the other didn't have a partner.  I mentioned trying to find two patients who would be interested in being each other's partner, or a nurse/nursing student who would trade the time being a partner for babysitting or house cleaning.  I told her that I have heard of patients doing that for each other.

Today, when the NxStage nurse called, she told me she would be at our center the third week of Sept to start training a patient and the staff.  Was that fast?  I wonder what happened?

Another good thing that came of this is that the NxStage nurse had some really good things to say about our dialysis nurse, who is head of the home program.  I'm glad she has known her for many years and thinks so highly of her.  That makes me feel better about her being in charge.  I had really started to doubt that she cared about patient welfare.  It will be nice to be able to talk to people at the center about the NxStage and much better to know that they have learned how to set and adjust the machine!

The NxStage nurse told me that Mike's Kt/V in mid July was 1.8 and they wanted it at a minimum of 2.0 or 2.1.  The only change is the dialysate to 25 from 22.5.  I wonder if there are other changes which would improve his Kt/V better?  I wonder if the two or three weeks until his next appointment will be long enough to notice a difference? 

[skyedogrocks]

That's awesome that your dialysis nurse is highly regarded.

Does everyone have a Nxstage nurse and a dialysis nurse?  We only have our dialysis nurse who does the training for nxstage.  Didn't know there was a difference?

Rob's last kt/v was 1.8, so instead of going up on dialisate, they are playing with the flow fraction and speed.  He went from a 500 spead with a flow fraction of 26 to a speed of 400 and a flow fraction of 32.  We'll see how that does.  Next step is more dialisate.  Rob doesn't mind, as long as he can stay to 5 days a week.

[Black]

That's awesome that your dialysis nurse is highly regarded.

Does everyone have a Nxstage nurse and a dialysis nurse?  We only have our dialysis nurse who does the training for nxstage.  Didn't know there was a difference? ...

Yes, I am glad our nurse at the center is respected.  Yes, everyone has a NxStage nurse.  They are the ones who trained the nurses at the centers.  They are also available for consultations, just as they did for us.  Our NxStage nurse covers NC, SC and VA.

... Rob's last kt/v was 1.8, so instead of going up on dialisate, they are playing with the flow fraction and speed. He went from a 500 speed with a flow fraction of 26 to a speed of 400 and a flow fraction of 32. We'll see how that does. Next step is more dialisate. Rob doesn't mind, as long as he can stay to 5 days a week.

Yeah, I thought they might do something like that with Mike but I think the neph is still learning the NxStage.

Mike is still on 6 days a week, but with his size, 122 kg, he may never go to 5 days.  He hasn't been on NxStage a year yet, so there is still hope.  Rob is lucky to be able to go to 5.  Having that extra skip day must be wonderful.  Hope the Kt/V improves.