I am new to the group. I have been on dialysis for almost 8 years. I have just recently had a baby and would like to be at home more. I am looking into the nxstage machine to dialyize at home. I was wondering what people know about it. Is it easy to use? Also could I do it myself or must I really have a “partner” hook me up etc…?
As you know from the dialysis_support list, I’m not a patient, but I do monitor this message board along with Beth.
Congratulations on your long-awaited baby! How exciting!! Is it a boy or a girl? Good for you for considering home dialysis to spend more time with your new little family member. I’m sure that folks who are using the NxStage machine will weigh in and tell you all about it. In the meantime, there are several old threads on this board with lots of great info for you:
To see if daily home hemo with any machine is available near you, check for your town in our “Find a Center” database, and look on our brand new maps that show coverage for each type of dialysis.
I had a little boy. My life has changed in a new exciting way! :o I will check out the sites you sent me, and also hope to hear from other patients that are using the nxstage machines.
The NxStage works only for short daily and really is only for patients on the smaller size (their dialyzer is small so doesn’t give sufficient clearances for larger patients). As a larger patient I can’t use it for now, hopefully they will make a larger, more efficient kidney/dialyzer so that it will work for the larger population. If I was able to, the NxStage is the machine for me because I want the freedom to travel.
I use the Frenenius 2008K not at home as it is slower to set up. This machine works for short or nocturnal. It uses an r/o system which is a bit of a pain, and I would suggest using an r/o that reuses its water as the one I use uses around 300 gallons of water a day, most of which goes down the drain. The r/o is a bit of a pain, is noisy and requires lots and lots of testing, but is necessary for a Fresenius.
The Aksys is also only good for short dialysis, although I hear they are working on a heparin pump to get approval for nocturnal. I have no first hand knowledge of the Aksys but hear that reliability is an issue. Another factor is that it runs 24 hours a day so water and electrical use is high. Also, if there is any problem at all you miss that day’s dialysis as it needs to “reset”. Personally I would probably make it my third choice as I don’t know what the benefit of it over the Fresenius is.
There are new machines close to approval.
One “beef” I have with NxStage is their constant statements that you “need” a partner. Self-dialysis is very easy and the NxStage is an easier machine than my Fresenius. I believe they are doing a great disservice to home dialysis by insisting that you have a partner. My suggestion is to get your husband to train with you, but you do it all and learn to self-dialyze. That way you can get “approved” yet learn to do it yourself.
Congrats on the baby, mine is turning 11 soon.
Correct me if I’m wrong, but I detect a certain misunderstanding by some about what machines can be used for home hemodialysis and about the overall circumstances (not you, Cathy). It’s not like deciding to buy a Sony TV over a Panasonic, or a new Euro-style front-loader washing machine over a traditional Maytag. Even home hemodialysis requires a fairly extensive support infrastructure. You’re a patient of some kind of home dialysis unit or centre, and you’re really just extending your lifeline from there to your home. You still have a kind of support umbilical cord, so to speak. There can be relatively frequent contacts with the home dialysis nurses (lots of circumstances in which they you might have to notify them of something), plus, more importantly, the machine has to be technically supportable. This means that you use the machines the unit decides to use and support, and stock supplies for.
The more automated a machine is, the easier setup might be for the patient, but the more complicated the internals and the more problems there can be that the patient cannot solve, whereas on a more conventional machine like the Fresenius, it might be a very simple problem to solve during the treatment. Every time something technical goes wrong with the machine, the downtime means you lose one day of your dialysis, at least, and possibly you sacrifice your external blood circuit too - which is something you don’t want to have to do too often).
With local technical support (my unit has its own technical support staff), if something breaks down or say, conductivity or something goes beyond allowable limits during a nocturnal treatment, someone will be there fixing it the next day before your next treatment.
I understand that with the NxStage, NxStage itself provides the technical support by sending an exchange machine. Notwithstanding the logistics involved with that, personally, I would be a little worried about not having the dialysis machine technicians available locally. I also like the idea of having the option to switch back and forth from nocturnal to short daily if circumstances warrant it.
Any comments? I don’t mean to start any arguments, but I’m just throwing it out there for discussion. What are the real world experiences of those actually trying out the NxStage or using the Aksys PHD system? There doesn’t seem to be too many of you out there at present.
I agree that you need to check with your center to see what machines it supports, however some centers, like mine, offer many machines. My center supports the Fresenius, Aksys and NxStage. They don’t provide the techs, except as back up for the Fresenius, they have contracts with the manufacturers.
With NxStage if something malfunctions they send out a new machine by overnight, so with luck you only miss the day your machine breaks, however if I were on it, since I run in the evenings I suppose I could miss two days since I wouldn’t know there was something wrong until that night, then I would call the next day and get the machine the following day. Don’t know what would happen if I broke down on Friday night, ie whether they have 7 day a week shipping available.
With the Aksys, at least from reports here and on other boards, if you have a local tech you are pretty much okay, if not, they fly in a tech and it can take a couple of days for a tech to get to you, hopefully they have all the parts, but I believe I have heard about more delays if they need to order a part. Don’t know how long it takes to get it up an ready for dialysis after service, I don’t believe that it is immediate, but Bill should be able to answer that question, or anyone else on the Aksys.
Personally I think the best thing is simply to GET home dialysis, with whatever machine you can. Sure I wish the NxStage worked for me for the easier set up and clean up and no water and portability, but I certainly wouldn’t give up home dialysis just because I can’t get a NxStage.
I think you have it right Pierre, the unit (ie the unit staff) is the most critically import piece of the equation after the consumer. The consumer/unit interaction is key - if you are like Cathy it does not matter which machine you use - you will thrive so long as the unit supports consumer independence and provides the opportunity to dialyze more frequently than 3x week.
As to the question “Which machine is best” I think more and more consumers will have a choice of machines. It is not too far fetched that I will have a choice among three machines in the future. The B Braun Dialog - a standard incenter machine with a separate stand alone RO for home use; the Aksys PHD which is what I’ve been using since 8/02; the NxStage - I went to a demonstration/presentation not too long ago.
Looking at these options I would first look at clinical issues and then convenience issues. I would give allot of weight to using ultra pure dialysate and dialyzers size which would put the B Braun third on my preference list and let me say the B Braun is a great machine - I used it at home for a year and never had a technical issue. Daily dialysis on the B Braun is far better than three times a week incenter but in this comparison providing six treatments a week is just the ante.
So for me the real choice is between the Aksys and the NxStage. Every time I talk about this subject I’ll get anonymous email questioning whether I work for Aksys so let me save some people the trouble of setting up a new Yahoo account - I work outside the renal industry. I like the Aksys because it allows me to live the life I was meant to live, of course I am a fan. Other Aksys users may have a different experience but I can only describe mine and how I made/make MY choices between MY options.
So at this point if I were choosing between the Aksys and the NxStage I would need to know which dialyzers I would use with each machine. I would need to better understand the theory behind low dialysate flow rates - what I’ve heard is that low dialysate flow rates work because the dialysate dwells along side the semipermeable membrane longer allowing equivalent amounts of diffusion to take place - I want to see the data. I’d also like to see the data comparing the composition of the dialysate: lactate v. bi-carb. Finally since the Aksys uses a more robust blood tubing I would like to know the impact of the two types of plastics.
One thing I would know, which ever machine I chose, is that I would be advancing dialysis knowledge. There is value in trying something new, it doesn’t have to be a perfect solution. Short comings are just problems to be solved. By trying these new machines your experience will inform the whole renal community. Dialysis is a journey, on the journey you are likely to use several different machines (I’m up to four) there is very little down side to trying something - you can always go back to what your doing now. One thing seems clear - three times a week is not the best choice.
I just received a transplant but was on the NxStage. it is easy to learn and set up, the treatment was just over 2 hrs (baby’s nap?). the machine is about the size of a large computer monitor and it doesn’t need a water filter since it uses bags of fluid instead of water.
I dialyzed 6X a week and felt pretty good, tho I had to take binders for my phosphorous (small price).
I did not have a partner normally since I dialyzed while my sig. other was at work.
if you never did home hemo before I do recommend a partner tho. accidents and errors do happen.
I guess individual needs will influence the choice a lot. Once I finish my training after this coming week, I can choose either short daily (2 hours if done 6 times per week), or nocturnal. The machine can do either one at any time you want. The choice is left to the patient. The nephrologist in charge of the program likes 6 x week nocturnal (for the trial data being collected about nocturnal), but it’s the patient’s choice. The patient can even vary the number of days, say, doing daily for 4 or 5 days instead of 6. Same thing for nocturnal.
For me, the ability to eat more phosphorus will be the big advantage, and so nocturnal is the better choice for me, while it might not matter as much for someone else. I want to be able to eat all the phosphorus I want (and potassium too), because I’m hoping to return to a more vegetarian diet, and all sources of vegetarian protein are high in both phosphorus and potassium. So, even if it was available locally (and the NxStage has been clinically trialled here, but I think only for hemofiltration, not hemodialysis), I have to have a machine which permits nocturnal and not only short daily.
Thank you alll so much for your replies. My next question is, some of you said that you do dialysis more than three times a week. Who pays for the extra treatments?
None of us pay for extra treatments. It is part of a home daily dialysis treatment and the unit covers the extra costs (if there truly are any) or our private insurance pays.
Piere writes: For me, the ability to eat more phosphorus will be the big advantage, and so nocturnal is the better choice for me, while it might not matter as much for someone else. I want to be able to eat all the phosphorus I want (and potassium too), because I’m hoping to return to a more vegetarian diet, and all sources of vegetarian protein are high in both phosphorus and potassium. So, even if it was available locally (and the NxStage has been clinically trialled here, but I think only for hemofiltration, not hemodialysis), I have to have a machine which permits nocturnal and not only short daily.
This is my concern, too. I am not sure if short daily will afford me enough improvement in diet. Supposedly one can have roughly 50% more phosphorous and potassium foods with short daily txs over 3x week dialysis, but I have wondered if I will be satisfied with that rate of improvement. With a machine that is capable of both short daily txs and nocturnal, maybe doing nocturnal some days and short daily the others would be a good solution. Does anyone do this btw? I just know, I would like to return to the humaness of being able to have a healthy diet and to be able to enjoy having larger portions of phosphorous and potassium foods more often or when I am still hungry. You know, like it is really unnatural to desire to have some watermelon, but to only be able to have one little cup or to totally deny oneself of a bannana, dried fruits , nuts, cataloupe and other healthy fruits and vegetables, or to deny oneself of cheese, milk containing foods and drinks etc. So I’m trying to figure out if short daily txs would provide enough improvement in diet to satisfy me or if I would be happier with nocturnal txs. considering the tradeoff in time ( about 12 hrs vs 48), Also, I like the idea of the NxStage with its much easier set up, no need for water system, small unobtrusive size, ability to travel, sterile dialysate, which is something none of the other machines offer. Tough choice.
I haven’t been on nocturnal yet, but I can tell you that since I started short daily as part of my training 6 weeks ago, I’ve been able to drink more, I’ve been able to eat about twice as much potassium as before, and I my phosphorus has improved enough that I’ve been told to cut back my TUMS from one 3 times daily to just one per day. I suspect that a person who still has a fair amount of residual kidney function could get by with short daily in terms of a more liberal diet, but there’s no way it can even come close to nocturnal which literally eliminates the diet.
I know some people in my city (that is, connected to the same home hemo unit as me) who will sometimes change from nocturnal to short daily and back for specific circumstances (and in consultation with the home dialysis unit), but it’s not really something you can do at will, and I’ve never heard of someone doing a mixture of both each week. It seems to me like that would be a little hard to manage.
We use the Fresenius for Nocturnal but can also do daily with it. Although we do nocturnal 99% of the time it sure has come in handy to be able to run a daily treatment once in a while when something comes up and the nocturnal treatment won’t fit in our schedule that week.
I’m excited to hear that dialysis clinics are giving patients multiple options for machines for daily or nocturnal dialysis. This is what I think dialysis should be all about…choice. However, I do understand the limitations that may be required due to technical support. For instance, I’ve heard that in an effort to satisfy its customers it is working to grow its market in areas where technical support is readily available so patients using the Aksys machine get quick turnaround when a machine needs repairs.
So far as who pays for what…Commercial insurance may or may not have a limit on the number of treatments allowed per week. This would be something to check with your insurance. You might also want to check whether your health insurance requires per treatment copays…some do. These copays can run up really quickly when the insurance requires that a patient pay $25 a treatment. Some patients could not afford $7800 a year ($25 x 52 x 6) in copays.
Medicare limits payment for dialysis to 3 times a week unless a doctor provides medical justification for additional treatments. The medical reasons for additional treatments that Medicare accepts are congestive heart failure and fluid overload. It seems to me that Medicare might regularly approve a patient for frequent dialysis if he/she has CHF since this is a medical condition, but I suspect Medicare would not regularly approve a patient for fluid overload since it is reasonable to expect that the patient and clinic would work together to resolve the issues that lead to fluid overload.
If a patient has a commercial insurance as primary and Medicare as secondary, the clinic is supposed to accept Medicare’s allowable as payment in full, but I suspect this is for the 3 treatments that Medicare allows…If a patient is doing daily treatments, this rule probably would not apply to the additional treatments beyond what Medicare allows. Some clinics limit home hemo treatments to every other day to assure that most, if not all, treatments are covered.