I am currently in training with the NxStage machine here in Texas
(I am the 1st one here, I think). I am only in my first week of training.
I am 31F, have IgA Nephropathy, on dialysis for about a year now, and am awaiting a transplant.
Anyone have any questions / tips for the NxStage machine?
I am wondering how long most patients are on per day, so far I have had to go 3- 3 1/2 hours in my training, until labs come back good. Also wondering what others see as average weight gain per day on the daily hemo??
The more the fluid, the longer each day you have to do dialysis?
Training has been good so far, though a partner is a must, it does require some sharp wits, no napping, constant attention, and possible having to stand up after dialysis to end treatment on machine, and maybe even standing to reach & get IV meds, which we all know is sometimes difficult after dropping blood pressure, or have a finicky access. I am sure this would be difficult for sometime to do solo if they had a fistula, because of the movement. Setting the machine up is easy, although putting in the treatment amount, etc. calculation are manual, and a bit confusing to someone who isn’t a nurse. The machine is small, fairly quiet, and easy to setup.
Hi Terri! Welcome to Home Dialysis Central, we’re glad you found us.
There are a bunch of folks here who use the NxStage machine and can give you tips on it. A good way to find them is to use the search function for the message boards (look up on the top of the page and click the “search” icon). If you reply to an old thread, everyone who posted to it will get an email telling them that there’s a new message, and you’ll have lots of helpers!
I did 3-1/2 hours when I was on dialysis 3 times per week. Daily, I do 2 hours (pretty much the standard for daily dialysis 6 times per week). I guess fluid gain will vary depending on how much you drink, but I try to keep mine under 1.5 kilograms per day (the equivalent of 1500ml). This is because with adding 500ml for rinseback at the end, this would give me a UF goal of 2000ml. In a 2 hour treatment, that would mean a UF rate of 1000ml/hour. That’s getting to be a little high. My home dialysis unit doesn’t want patients removing more than 1000, maybe 1100ml per hour at home, due to the risk of crashing from low blood pressure (that is, before I would have a chance to infuse saline). I also like to be able to drink a cup of tea or something during the treatment, so I have to leave room for 200ml. I do still have some urination, so that allows me to drink a bit more, in addition to the above.
My instructions if I have to remove more than 1100ml per hour are to not remove more, but rather remove only 1100ml/hour, and then remove the extra amount the next day. If it’s too much to do this (such as after the lay off day), then I can increase my treatment time that day.
Now, personally, I find that with short daily dialysis, I can’t really drink much more than I could on 3 times per week, simply because the treatment time is shorter - there just isn’t enough time to remove more, and if I’m doing dialysis every day but one, I sure don’t want to be on more than 2 hours! The fluid limitation of short daily is one reason I ultimately intend to go nocturnal.
I do my dialysis alone, without a helper, and I do have a fistula. I just make sure everything I need or might need is at hand before I hook up. The hospital provided me with a hospital bed type of table and I put everything on that. I’ve had no problem giving myself epo or venofer.
If you have a digital camera I invite both of you to send some snapshots of your home dialysis setup to my personal site at http://www.dailyhemo.org …I have a gallery there for patients to share their photos…
If the dialysis machine you use is not listed in the categpry list just send me a message and will add it for you.
Pierre@ I also do 6x a week, was offered 2 hours but also was given the option for extra time so I decided to go an extra 1/2 hour. If you have the manual to your NxStage machine you can easily adjust the paremeters, just let your clinic know that you wish to make some adjustments. Dialyzing a little longer with mild parameter adjustments will be better on your body than just dialyzing 2 hours…
The max UFR I have only come to use on my 2 1/2 hours is 1.2kg…randomly, but most of the time it just averages from .5-.8
Thanks for the info, I appreciate it. I will be doing the NxStage without a partner, but I will train my husband for emergencies, etc. He will be nearby during the treatments.
It sure helps to here other stories, thx
I did NxStage without a partner with very few problems. my treatments lasted just over 2 hours but since I never stopped urinating I had no real fluid to remove, just rinseback.
as with any dialysis it is best to control fluids and not feel that you are doing it daily so there is no need.
I am confused about why you had to stand up for all those processes. I administered medications, took myself off, etc. and didn’t stand up until I was ready to come off. of course I didn’t have blood pressure drops since I was removing minimal fluids.
have you had your dry weight reevaluated recently, as you may have it set too low?
What were you able to comfortably gain in fluid when you were on 3 days a week incenter? I am gathering from your post that the reason one has no fluid limits with nocturnal dialysis is due to the low fluid removal rate with the longer hrs. to remove. But isn’t there a concern for the amount of fluid put on (until it is removed at the end of the day) as far as fluid on the heart?
To be perfectly honest, I don’t see that much difference in ability to drink fluid doing short daily than I had doing dialysis 3 times per week. Except on weekends, I have a treatment every day, but it’s shorter, and so I can’t take off as much before I start getting cramps. So, it ends up pretty much the same.
I also have some urination, but on daily hemo, it doesn’t really have as much time to kick in, whereas on hemo 3 times per week, after the first day and a half, I would start urinating in any significant amount. Most of the time, my pre-tx weight is not that different now than it was on regular dialysis at the centre.
Whether I’m on 3 times per week, short daily or nocturnal, there’s still a practical limit to how much fluid I can put on before I start feeling it (I feel it as abdominal fullness, and shortness of breath). That limit, I would estimate, is about 1.5 litres per day, maybe 2 (taking into account that I urinate about half a litre per day). I’m not that big, so I guess I don’t have much spare room to put it and still be able to tolerate the extra fluid.
From my point of view, the advantages of daily hemo are not so much in the amount of fluid I can drink, but in what I can eat. What I can drink has changed too, not in amount, but in what I drink. For example, my phosphorus is good enough that I can drink a Coke every day and not worry about it.
I have almost completed the NxStage training (I have taken a little longer due to a hospital stay). I really like the machine, and hope to start feeling better soon-I liked PD daily dialysis. I have had some problems with my catheter flow, but overall, I am happy with the new machine, and glad I did not make any permanent home construction needed for the Access machine. I have still had the flu-like pain, but not as bad as when my potassium was too low, which may have been caused because I do sometimes make urine. I will try to eat more potassium-yeah! Maybe I can get off those nasty potassium pills. Its hard to re-program yourself to eat foods that were previously restricted. Maybe this will even out with treatment, the NxStage lady said low potassium was unusual.
I am not a big person, 125lbs.
I usually gain 2 lbs a day, but Texas is hot in the summer, I am sure that my fluid intake may increase with the heat.
So far with daily dailysis I mainly have been taking off toxins, little fluid to remove at times, I still occassionally make urine too.
I have been on NxStage about 2 months now and also have a fistula. The most I have run has been 2 hours and 15 minutes. Time does increase as you gain more weight but only minimal.
Figuring out your numbers to input will become old hat eventually as well as getting your own system down aa far as setting up your machine, supplies, and meds. We put my cycler on a filing cabinet (steel) with wheels so we can store some of the supplies right there with the machine. I can roll the machine to where ever I want to dialyze that day.
So far, I have had no problems with my fistula. I use the button hole technique which I love.
Be patient. Soon, you too will love you new NxStage machine.