How’s the diet for those of you using NxStage One?
- How is your Calcium & Phosphorous levels?
- How is your potassium levels?
- How is your iron level?
I give it a bump here…sOOo quiet… :lol: …don’t be shy now and tell us how your labs and diet is,… using the NxStage One
Hi LymphNodes,
This is an excellent question, and I’m sorry that no-one has piped up with an answer for you yet. Most likely, the specific diet will vary depending on whether you’re doing short daily or long nocturnal dialysis, both of which are possible with the NxStage machine.
Still, I’m not aware of any diet resource especially for folks using nocturnal or short daily dialysis, so we’ll ask around and see if anyone has anything that we can share with you. If not, this may be an area of unmet need, where new something needs to be developed.
Dori
you may not be getting replies since the machine is so new to the U.S. and there are not a lot out there.
I will start training on mine 11/8, the first person in the area to do so.
my understanding is I should wait until my labs are in before modifying my diet.
I now do nocturnal, 8 hrs 6X a week, so have a pretty liberal diet. I don’t expect to change my diet significantly since I will be dialyzing 6 days a week with the NxStage.
it may be several months before real answers about diet, labs, etc. are in.
Hi y’all,
Lesley McPhatter, the renal dietitian at Lynchburn Nephrology, where nocturnal home hemo (NHHD) started in the U.S., was kind enough to send me the following email to post to you:
Most patients on NHHD have little or no fluid and dietary restrictions. Some patients find it necessary to limit fluid, potassium (K) and/or phosphorus § on the days they do NOT run, but on other days eat what they want.
Fluid is usually not a big issue. We allow patients to remove 0.4 liters/hour, so they multiply that by how many hours they run and can drink roughly up to that amount. (EX: 8 hr treament = 3.2 liters fluid removal).
We do encourage a healthy, low fat, low cholesterol diet, just as we would for any healthy person, to prevent cardiovascular disease. We also encourage adequate but not excessive calories unless a patient needs to gain weight.
We have had a few patients gain too much weight due to feeling better and eating better, and this can be a problem particularly for diabetics or patients who are being considered for transplantation. Many patients eat better but also feel well enough to increase activity and do not gain weight even though they eat more, because they are able to burn more calories with routine activity or exercise programs.
Low phosphorus levels is often a problem and I do have a handout for
increasing dietary phosphorus that we use and I am happy to share. For patients with low potassium, we use the same food lists we use for high K and just encourage MORE instead of LESS.
When traveling, my NHHD patients return to a standard hemodialysis restriction and limit K to 2000-3000 mg/day, P to 800-1000 mg/day and fluid to 1000-1500 cc, always individualized for that patient.
Lesley McPhatter, MS, RD
Lynchburg Nephrology Dialysis INC
thanks for your information about diet, etc. for the NxStage machine which I was not aware could be used nocturnally. don’t really know a lot about it at all except what I saw in the demo.
as to travel, it is my belief that you can take the machine with you if you want. it is my plan to do that, even to taking it along on sailing vacations. we would have to work out the electricity part, I mean a conversion to whatever you use on water, and make room for the supplies.
Lynchburg Dietitian,
When you say one can drink up to 3.2 liters, doesn’t that depend upon the person? If a patient can only drink 1 or 2 something liters before becomming full, then how would nocturnal help him to drink more as in no limits? As I see it, the patient is still limited as he would be with regular incenter hemo. The only difference is, he gets fluid off through the night while he sleeps and would wake up feeling better. Or he may have a little leeway in that if he has drank his 1-2 liter limit by suppertime, if he get’s on the tx by about 9 pm, if he wants to drink a little more on tx he can.
Spiderwoman, I don’t think she was talking about the NxStage. It is not approved for nocturnal, but just talking in general. I don’t think that there is any difference in limitations between daily nocturnal and daily fast dialysis. Since you are dialyzing daily your restrictions are pretty much eliminated or greatly reduced.
Guest, again, talking about fluid restrictions, if you don’t WANT to drink 2-3 liters a day you don’t have to, but on 3x a week dialysis you can’t drink much more that 1 liter a day (unless of course you still urinate), with daily dialysis you basically can drink what you want without worrying, except on your day off or if you travel and have to revert to 3x a week dialysis.
Cathy,
Its not a matter of “want to”, but of what’s possible. Doesn’t it depend on body size and what a patient can comfortably drink in a day?
Guest, I guess I have no idea what your point is. MOST dialysis patients have fluid limitations, certainly not all. IF you have fluid restrictions and you don’t like them, then daily dialysis allows you to eliminate the restrictions or greatly curtail them. IF you don’t have fluid restrictions or don’t mind the ones you have, then daily dialysis will not improve THAT area of your dialysis.
After one week of daily dialysis (6x a week) I had to increase my potassium and phosphorus, having polycystic kidneys I still urinate so fluid restrictions were minor, however, my BUN is in the normal range most times and my creatinine dropped to 2 and I am expecting it to drop further. My pth is in the normal range for the first time. These are the reasons I chose the “trouble” of home daily dialysis. To be healthier and I also get to be in charge of my treatments, I was able to adjust my sodium (with permission from my doctor) to increase my conductivity so I felt better after dialysis, I can run U/F profiles to make fluid removal easier on my body, I can stop U/F if I start to feel a bit “twitchy” knowing cramping is on its way (I don’t have to wait for it to “hit”), I can adjust my U/F based on knowing I am going to have dinner while on the machine or that I had just finished dinner so my weight is a bit high due to eating not fluid retention. In other words being in charge allows me to customize my dialysis session each time as needed to make it more efficient and comfortable.
Has anyone at this time observed how liberal the diet is for short daily as compared to long daily? I am wondering how long I would have to dialyze each day to be able to rejoin the human race in eating the foods I have had to virtually give up while on 3x short dialysis for many years now.
I’m on 4 hour daily runs and have virtually no diet limitations. I did have very low phosphorus and was told to eat more and went a little above board and had a high phos last visit (6), but I’m not deliberately trying to eat high phos foods now and I can report in a couple of weeks if it is still normal.
Thanks Cathy. I’m trying to figure out what would be the least number of hours I could run daily and still have a liberal diet again plus improved quality of life. How did you decide on running 4 hrs a day? I am trying to get psyched up to run 6 days a week. 2 1/2 hrs per tx sounds more doable/tolerable.
I am overweight so need more dialysis than the average person. Originally I was “approved” for nocturnal dialysis but haven’t been able to sleep so they agreed to 5 hours a day at a bfr of 300. Since I don’t have a partner my unit doesn’t like short daily as it can have more problems due to faster blood pump speeds and faster removal of fluids and waste (can cause more b/p problems and cramping) so they prefer a slower, gentler dialysis.
I know Bill does around 2 1/2 hours a day and so does Gus. I believe they are getting good pre and post numbers at that level. Gus has a partner, Bill does not.
I can’t remember if you are already on dialysis, if so, then you probably know what speeds you handle without problems. I have heard that running over a bfr of around 300-350 is much harder on your access.
Cathy wrote:
I was able to adjust my sodium (with permission from my doctor) to increase my conductivity so I felt better after dialysis, I can run U/F profiles to make fluid removal easier on my body, I can stop U/F if I start to feel a bit “twitchy” knowing cramping is on its way (I don’t have to wait for it to “hit”), I can adjust my U/F based on knowing I am going to have dinner while on the machine or that I had just finished dinner so my weight is a bit high due to eating not fluid retention. In other words being in charge allows me to customize my dialysis session each time as needed to make it more efficient and comfortable
Cathy what sodium do you run in order to increase your conductivity…how did you determine what the correct level of sodium was for you? Likewise, which UF profile do you use and how did you find the correct one for you? Agree totally about customizing the tx, but have not found anyone trained in how to do so in my unit.
Is your conductivity always the same at the begninning of your tx before you adjust sodium? I find that when the bicarb is mixed so that the conductivity registers 14.3, I can run at a straight 140 sodium. Otherwise, I need a sodium modeling program.
Hi!,
Since you both run short daily txs, could you say how liberal your diets are? And do you feel well enough with short daily that you are satisfied to run short txs as opposed to longer daily txs?
It isn’t simply the sodium that affects the conductivity, but for me, there was only one acid mixture available for home hemo so the two things I can adjust is sodium and bicarb. The problem is I run a very low CO2 so need a 40 bicarb which lowers the conductivity so I tried a 142 sodium, again with permission, and it brought the conductivity up approximately .2, you can see for yourself on the dialysate screen, you adjust the conductivity and can see the ideal number change appropriately. Some people might not be able to handle a 142 sodium, but I don’t appear to have a problem ridding sodium as my blood sodium was I think 139 last check and has never been high and I do not limit my sodium but seldom add salt to anything, but do eat processed foods such as pre-prepared meals and soup maybe one a week.
With regard to diet, everyone is different. I have PKD so didn’t have big diet restrictions even prior to starting dialysis. Phosphorus was easily handled with a couple of tums every time I ate, and generally I only took them when I had phosphorus in my meals. I was even able to drink diet coke. Although I seldom ate any tomatoes I did sometimes have a tomato based sauce on my pasta, I hadn’t eaten bananas or oranges for a long time, but other than that I didn’t watch my potassium too much either and had normal potassium.
What I am saying, is I don’t know if you will have the same freedoms I do now. Basically I can eat pretty much what I want. I did go a bit overboard on nuts before xmas and did have a high phosphorus. Updated bloodwork will be in about a week, so I’m hoping it isn’t too low (happened the first couple of months so had to deliberately eat phosphorus containing food and stop all binders). I’ll admit that since that number if I do eat some nuts or have 3 diet cokes I will still take a tums or two, just seems prudent, but we’ll see if my numbers are too low. HOwever, I don’t know if everyone can do the same or depending on how much residual function you have and what exactly your kidneys can still do may also affect your diet. I’m not sure you will know until you try it.
You’re not really changing sodium and conductivity with NxStage machines, are you? I thought the fluid was standard except for the amount of lactate.
My posts referred to a Fresenius machine. It is my understanding with the NxStage that there are many different mixes of dialysate to choose from which will affect your conductivity as well as labs, I guess you keep trying them until you get one that works well for you.
Hopefully one of the people on NxStage will address this.