Wondering how many at this group are using NxStage nocturnally? I realize the co. does not acknowledge the use of the term “nocturnal” at this time. Believe the term is “long extended”, but in actuality it is the same thing.
There are some NxStagers on the net who do the long extended txs that previously did nocturnal txs using Fresenius machines, who state that they do not feel as well on NxStage as they did on FR. I am wonedering if this is due to the fact that home staff do not as yet comprehend the NxStage technology and are using less than optimal scrips.
NxStage technology is described as “volume driven”. I have read where some have stated that NxStage is currently running a trial with the long extended txs, increasing the therapy fluid volume to at least 40-60 L per tx. That is quite a bit higher then scrips I hear of with NxStage long extended patients online who say they only use 20-25L a tx.
Another aspect of the volume driven technology I’ve heard of is that in NxStage’s literature, they recommend using a FF of 30-35. Long extended patients online often report having a FF in the 20’s.
I am wondering if those at this group who do the long txs, would share their scrips and give a little testimony of how well they feel on their txs. It would be helpful to know if any have previously done nocturnal txs with another model machine as far as a comparison of which machine provided the better tx. Any other info you could share about your experience would also be welcome.
Not sure where the term ‘’ scrips.’'comes from. But as someone who using nxstage and started with the day time tx, now on the night time txs. The amount of therapy fluid from my understanding was and has been been based on the what worked. In my case for my size, it was found that 30 L worked both on days and nights. I’m sure your hear from others who use what ever amount works depending on size and what tx they are doing.
Scrip is just short for prescription. In addition to therapy fluid volume, that would include FF, BFR, tx. time. A number of patients report being started at a scrip which has never been adjusted. It is possible to improve upon the scrip.
My first time at this forom or blog site, we do a 2 and half to 3 hour treatment 6 days a week 18liter and 30ff, We run @ 450 and remove between 1&3L a day depending on daily fluid intake. This the same scrip we were trained at three years ago, should we ask about changes if my husbands condition is detererating. Our Dr. only seems to care about getting lab results and flow sheets mo. to turn in for medicare reimbursement.
[QUOTE=Unregistered;17247]My first time at this forom or blog site, we do a 2 and half to 3 hour treatment 6 days a week 18liter and 30ff, We run @ 450 and remove between 1&3L a day depending on daily fluid intake. This the same scrip we were trained at three years ago, should we ask about changes if my husbands condition is detererating. Our Dr. only seems to care about getting lab results and flow sheets mo. to turn in for medicare reimbursement.
Linda[/QUOTE]
Hi and welcome,
What I have heard from other patients is they are started on a minimally adequate scrip and left there. Ones neph should be reviewing labs and working to give the patient a better scrip if called for. What is your husbands pre and post bun, URR and KT/v? These lab results show adequacy. If the results are just minimally adequate, his scrip should be improved. Nxstage literature recommends increasing therapy fluid volume and the FF should be kept between 30-35 to get a more efficient tx. I have had a number of nephs and they were all like you describe your neph, but when I learned to be proactive and speak up for better care, they each responded. Would be nice if they would just do their job, but many don’t if they see the patient is in the dark. And many aren’t up to date on their dialysis knowledge.
FF 26
Treatment around 5 hours and 20 minutes, 5 days per week.
450
I feel pretty good, am able to walk and run. Dry weight is at 102. However, weight can be as high as 110 without any fluid on the legs. Nephrologist visits are once a month. If the script needs to be changed, clinic gets their marching orders from the Nephrologist. I am lucky, if the clinic is not doing what they should, they are told to get with the program by the Medical Director or the Nephrologist. The care I receive at the clinic is outstanding. However, as much as I like everyone, they can get carried away at times. I am lucky.
Hi Jane,
Ralph has been since day 1 60L 8.5 hr a night FF 35 BPS 340 or 350 depending on how much fluid I need to take off of him.
We run 6 nights a week nocturnal.
His pre bun runs about 40 and post about 18 His KT/V runs between 3.4 to 4.3
His K runs about 4.2
His Phos runs low about 1.7 to 2.4
Right now we have him on a chocolate milk and cheese diet.
I give him anything that has phos in it.
Pat
Pat, do you have time to come over and help me. Yum, chocolate milk. Actually my neph told me to start eating ice cream. You know me — with my body? But I have had it a couple of times and I’m not afraid to drink cola — diet of course.
But I think I’m gonna force you to take care of me part time on the cruise. The time we’re eating!