I’m a relatively new user and I am using a aksys home dialysis system.
Since we’ve been using it for the past 3 months we had several glitches
Which required a technician to come out.
I think this is too much. This doesn’t give me a comfort level because problems
Seem to always occur after the day lay over in my dialysis schedule.
I remember when we first started the training nurse said we could use either NxStage or Aksys. She steered us toward Aksys because she said the NxStage had more problems and also there were so many bags of solution needed it makes It hard to have storage room for it all.
I am really wondering if we made the right choice now. I don’t have the comfort level with our Aksys system since it hasn’t been the most reliable and I have to go back to the clinic and run because my machines down again and a technician can’t come out till Monday and it’s Sunday Morning.
Frustrated with the technical dificulties.
Bruce, the subject of the Aksys Machine Breadown has been reported more than once. I think I would have gone with the NxStage, for me the amount of room required to store the supplies is offset by the service they offer, the convenience of no water to deal with. No long term cleaning cycles. Your center is the 1st I have heard mention of problems with NxStage.
Currebtly, for today’s daily-short home dialysis …the super little machine…“NxStage System One” …hands down…this is the best choice. less hassle, less montly utility bills, and best of all…comfort zone…
8)
If you have any further questions please feel free to ask us NxStage Users…we’re here to assist in your decision making…
Bruce I’m sorry to hear that you’re frustrated. I agree it is important to be confident in your choice of treatment. We’ve had discussions on this board about the pros and cons of the various machines and I think the consensus is that the most important thing is getting more dialysis. Of course if you’re backing up incenter you’re not getting the benefits of more frequent dialysis.
My experience with the Aksys PHD is very positive but I do understand what you’re describing and I have heard from others that the PHD does make a poor first impression. I can’t speak to your specific situation but I can tell you that others have been in a situation similar to yours and had their machine’s reliability improve after a bumpy first couple of months. Speaking of my own experience I can tell you that when the machine operates as reliably as mine the PHD is a great choice.
Bruce, I wonder are you out in the Seattle area (if you’re backing up incenter on a Sunday it makes me think you’re dialyzing through NKC). I’ve spoken to a few people who have had issues with the NxStage. In at least one case it was the Lactate dialysate/liver issue in the others it was the reported inability of the NxStage to deliver an adequate dose of dialysis (these aren’t large individuals but they are, in two cases, long term patients and all had nocturnal experience which would impact what they consider to be adequate dialysis). There is also the unstudied (or rather unpublished) impact of plasticizer inflammation, a type of inflammation that the Aksys does a great job minimizing.
You’ll have to decide how many chances to give your machine, I know how frustrating this can be but it is my opinion that you’ve made a good choice. I know it is easy for me to say – when I left the house this morning my machine said it’d be ready around 3:30 – but hang in there: the PHD’s second (or third) impression will be better.
I’ve spoken to a few people who have had issues with the NxStage. In at least one case it was the Lactate dialysate/liver issue in the others it was the reported inability of the NxStage to deliver an adequate dose of dialysis (these aren’t large individuals but they are, in two cases, long term patients and all had nocturnal experience which would impact what they consider to be adequate dialysis). There is also the unstudied (or rather unpublished) impact of plasticizer inflammation, a type of inflammation that the Aksys does a great job minimizing.
Could you explain in more detail what these problems involve?
I’ll encourage them to post their experiences. In general they’ve told me that they did not feel as good as they had - when either dialyzing at home on a regular machine (B Braun) 3x week (one case) or at home nocturnally 4 or more times a week.
By not as good I took it to mean as well dialyzed or had started to feel like they needed more dialysis - tired, increased EPO needs, nausea.
I’ve been on dialysis for a very very very very long time and have no kidneys inside of me…they were taken out and must say that life has been alot better than beeing in-center 3x a week…
The quality of living is higher and my health has improved greatly…diet is more felxible and stress is way down…you know how stressful things can get when things don’t go as expected… :oops:
Its your right, you try out what is best for you…you shoudn’t be constrained to something you weren’t sure of. I hope things will work out for you ahead.
P.S. Am interested in Aksys’s new portable dialysis machine…
I would think Aksys’s new machine is years away, first it hasn’t been developed and second it then will need approval. But, I too, will be interested when it comes out, the more portable the better.
I should be able to compare daily dialysis between NxStage and Fresenius starting in March when I will be training and testing on NxStage. If I get good clearances I will be switching to the NxStage. I’m trying not to schedule vacations yet, but it is so tempting!!
Cathy
I know what you mean about sleeping on Nocturnal :roll:
One of the main beefs I have about doing more than 4 days ( 3 of them Nocturnal) is the time to set up , water used and the amount of supplies that need storing and consuming with my “Freni”. I find this a bit of a drag (I am probably being too polite to tell you what I really think). I worked out by the time I start thinking about getting the supplies organised til when I pack everything away it is close to 10 hours ( I do dawdle)
To have a machine requiring less consumables and setting up time is still probably several years away down here, but the thought of people like you about to give it a go and Gus happily laterally thinking dialysis of the future gives me strength 8)
Instead of dawdling I spend time figuring out how I can do it quicker, I think I am at the absolute fastest you can get, I can go from getting up to get supplies to hitting start dialysis in 40-45 minutes, includes testing water, getting the product water to make the bicarb and inserting and taping needles. I could probably cut another 10 minutes if we used premade bicarb. Getting off only takes about 10 minutes, but of course I have to wait for the heat disinfect before I can actually turn off the water and try to sleep so it takes about 40 minutes post, so we a 4 hour treatment I generally start at 6:15 and lights out around midnight. I am hoping to cut out an hour with the NxStage, but am really looking forward to the change to allow travel and to do away with the expense and trouble of the r/o.
Before initiating treatment we were told to draw 10cc of blood and let in circulate in the tubing and dialyzer for 10 minutes before starting treatment.
Does everyone else do this?
Never heard of that, Marty. The last big step in my prep after the alarm test and the conductivity test is to let saline recirculate in the tubing for 10-15 minutes. Once that is finished, I do a final saline rinse of both segments of tubing (it’s just a matter of opening and closing a couple of clamps and turning the pump on and off). It takes 5 seconds for the arterial segment, and exactly 1 minute for the venous segment. The saline just goes up into the drain bag. After that, it’s needle time.
Pierre
Me neither, I first fill the lines with saline and prime, then connect the venous and arterial ends and connect the wants and recirculate at 400 while it is coming up to conductivity. Then I do the tests, when tests are done I hook up the dialysate and fill the kidney then turn and get the air out and then let it run at 400 while I put in my needles. Hook up and infuse heparin then start dialysis. I’ve done a 10 minute rinse prior to hooking up to the acid and bicarb.
I do it essentially the same as Pierre. I have not heard of the blood rinse Marty reports, but I assume it is to coat the PVC tubing to prevent any further DEPH from coming out. Blood loss from dialysis procedures is supposed to be the principal cause of dropping hemoglobin. Sounds like a Hoson’s Choice in deciding which problem to address.
Thanks for your replies. Next time we go for our clinic visit, I am going to ask if we have to continue with this. I believe the theory was it is suppose to coat the lines and dialyzer and that would help prevent a reaction from the materials in the tubing and dialyzer. But since most people don’t have a reaction, I think it’s a waste of 10 more minutes.
I am using the aksys machine since January 05. The first 6 months seemed riddled with problems that a tech needed to handle, but since then it has been much smoother sailing. Key pros for me doing daily dialysis on this machine is:
much less storage needed than Fresenius
much, much less prep and no strip down after treatment
technical support is 24/7
problem solving while doing dialysis has been easy
better clearance and since I had the 6 month maintenance on the machine I have had no incenter treatment.
Main con- low blood pressure and long cleansing cycle, takes away some fexibility in scheduling.
I am using the aksys machine since January 05. The first 6 months seemed riddled with problems that a tech needed to handle, but since then it has been much smoother sailing. Key pros for me doing daily dialysis on this machine is:
much less storage needed than Fresenius
much, much less prep and no strip down after treatment
technical support is 24/7
problem solving while doing dialysis has been easy
better clearance and since I had the 6 month maintenance on the machine I have had no incenter treatment.
Main con- low blood pressure and long cleansing cycle, takes away some fexibility in scheduling.
Welome, Tisha, and thanks for sharing your experiences! If you register for the message boards, you can get an email notification so you’ll know if someone has replied to you.
