NxStage and fluid removal

Discussions for Patients, Family, and Friends HD For Patients
1

Does anyone have the problem I have- I feel great on NxStage, but although I have little edema/swelling anymore, I seem to have fluid in my stomach area that doesn’t come off. I may be wrong, but I get the feeling the buldge in my midsection is fluid. I have tried to challenge, but the machine will not pull anymore off.

Something I like about NxStage is I can tell the second it won’t let me remove any more fluid and turn the UF off if necessary so I don’t cramp. This is good, but I’m concerned because I do not feel I am dry- just that the machine will not allow me to comfortably pull anymore off. Does anyone else feel they are carrying a fluid pouch or am I the only one? I am doing sdd- don’t know if things are better for those doing nocturnal.

2

How much do you gain between sessions?

3

I average .8-1.2 daily and after my one day off I may gain about 1.5-1.8

4

I am carrying fluid in my abdomen area and in my face, not in my legs or ankles. I didn’t have this problem when I was in center or on the fresenius machine. Don’t know if the machine has anything to do with it or maybe years on the machine.

billable, why do you ask the amount of fluid gain?

5

Possibly, billable asked the question because he thinks I am a big fluid gainer?, but I’m not. What you say confirms what I have experienced with NxStage. I love the txs and feel so much better, but that does not negate the fact that I am having a very uncomfotable problem with fluid in my midsection. I also have been on FR machines. I have experienced doing txs on different machines in-center, all the same model, but because they were calibrated differently, I would have good txs on one machine, and when put on another machine, would cramp. That is because, like I said, they were calibrated differently which would throw my goal off. But I did not have the problem I am having now with too much fluid left on in my midsection when I was in-center, so I believe it is related to my peramiters on NxStage. There probably is a way to adjust for it, but I don’t know what it would be yet.

I don’t think it is as you wondered attributable to yrs on dialysis, because when I was in-center, certain machines would leave me like this unable to pull off anymore fluid, and others would pull it off and I would see my midsection flatten right out. So, I feel certain it is fluid that is not removed. Also, when I was on FR, in one unit I could gain a maximum of 3.6 and remove with absolutely no problems (this included rinseback and 2- 6 oz. drinks on the machine). But as soon as I switched to another unit with the same model machines, I could not remove anywhere near 3.6. This was because my machine prescription was different in the 2nd unit.

I also started a thread about Critline and feel that if I could add a Critline to my tx, I would get every bit of extra fluid off each tx as I have experienced Critline first hand and can vouch for how well it works. That’s why progressive units have gone 100% Critline. As I said, when I used Critline, it got off .9 more than my usual txs and I could breathe in so deeply it was amazing to me. I never felt so well! Forgot I was on dialysis for as long as the effects lasted from that tx.

I am wondering if any more people will say that they have noticed fluid left on the midsection with NxStage. They may not have the problem if their machine prescription is working for them.

6

You’re right. I was wondering if you were a big gainer.

If you are in clinic, 3x/wk. I could see where a critline may be of value. However, doing sdd, I don’t see how it is going to be that beneficial, especially if your hematocrit isn’t stable. You aren’t going to get a huge shift doing daily, IMO. We haven’t seen that and just don’t have a big problem getting dry weight pretty close. I think that it would probably just confuse most home patients. Too many variables to watch. If you are having that kind of problem, maybe you need to stretch your UF out over a little more time.

If I were a suspicious person, I would wonder if, just maybe, you worked for Hema Metrics. :wink:

7

[QUOTE=billable;12401]You’re right. I was wondering if you were a big gainer.

If you are in clinic, 3x/wk. I could see where a critline may be of value. However, doing sdd, I don’t see how it is going to be that beneficial, especially if your hematocrit isn’t stable. You aren’t going to get a huge shift doing daily, IMO. We haven’t seen that and just don’t have a big problem getting dry weight pretty close. I think that it would probably just confuse most home patients. Too many variables to watch. If you are having that kind of problem, maybe you need to stretch your UF out over a little more time.

If I were a suspicious person, I would wonder if, just maybe, you worked for Hema Metrics. ;)[/QUOTE]

You may be correct, billable, as far as Crit not being of value for daily txs due to not getting huge fluid shifts. It is a question mark in my mind so I have wondered if anyone else uses a Crit. for SDD and what it does for them. I just know what it did for my in-center tx.

And, yes, a Crit might confuse most home patients with too many variables to watch, although it might not bother other home patients at all who are observant and can handle it. Regarding stretching my tx out a little bit, I tried that, but for a different reason, and it did not help. Strangely, I felt worse, not better, when I got off tx. I had gone to using an extra bag of therapy fluid and txs ran about 45 min. longer. Didn’t affect fluid removal. I am only guessing, but I think tx peramiters could be the cause of the problem I am having, because as like I said in previous post, I have experienced before where the settings made a big difference in fluid removal.

And honestly, I do not work for Critline. But I am very unterested in their product as I experienced it and it was the best tx I ever had in yrs of dialysis.

8

[quote=Unregistered;12353]Does anyone have the problem I have- I feel great on NxStage, but although I have little edema/swelling anymore, I seem to have fluid in my stomach area that doesn’t come off. I may be wrong, but I get the feeling the buldge in my midsection is fluid. I have tried to challenge, but the machine will not pull anymore off.

Something I like about NxStage is I can tell the second it won’t let me remove any more fluid and turn the UF off if necessary so I don’t cramp. This is good, but I’m concerned because I do not feel I am dry- just that the machine will not allow me to comfortably pull anymore off. Does anyone else feel they are carrying a fluid pouch or am I the only one? I am doing sdd- don’t know if things are better for those doing nocturnal.[/quote]

If I understand you correctly, you are saying that the water in the tissues in your midsection is stuck there? It can’t get from your tissue in your gut to your blood stream? As long as the water gets to the blood stream it should be available. It may be that during your treatment you remove the water in your blood stream and that there is not enough time for the water to transfer from the tissue before you cramp and your blood pressure drops. In that were the case try to manage your gains so that you do not put on more than needs to be pulled off.

The System One doesn’t know when you cramp or your blood pressure drops that is up to us to tell it. Once you get a cramp or your blood pressure drops then we have to drop you goal and if need be turn of ultrafiltrating by setting the goal to zero.

9

[quote=Unregistered;12394]Possibly, billable asked the question because he thinks I am a big fluid gainer?, but I’m not. What you say confirms what I have experienced with NxStage. I love the txs and feel so much better, but that does not negate the fact that I am having a very uncomfotable problem with fluid in my midsection. I also have been on FR machines. I have experienced doing txs on different machines in-center, all the same model, but because they were calibrated differently, I would have good txs on one machine, and when put on another machine, would cramp. That is

What does your nurse say about your machine’s settings concerning this problem?

10

[QUOTE=TheRiverdude;12413]If I understand you correctly, you are saying that the water in the tissues in your midsection is stuck there? It can’t get from your tissue in your gut to your blood stream? As long as the water gets to the blood stream it should be available. It may be that during your treatment you remove the water in your blood stream and that there is not enough time for the water to transfer from the tissue before you cramp and your blood pressure drops. In that were the case try to manage your gains so that you do not put on more than needs to be pulled off.

The System One doesn’t know when you cramp or your blood pressure drops that is up to us to tell it. Once you get a cramp or your blood pressure drops then we have to drop you goal and if need be turn of ultrafiltrating by setting the goal to zero.
[/QUOTE]

Not sure you fully understand what I said. I am not a big fluid gainer. I have no problem pulling off what I gain from the previous tx, thus almost always make my goal. But it seems there is some fluid in my midsection that stays put there and does not come off- like you said does not release to the blood stream. As I said, I have tried running 45 min. longer txs, but that did not help. Something blocks the removal of fluid in that area and I am guessing it has something to do with the machine peramiters since as I stated, had the same problem before on another model machine. My home nurse does not know what the solution is. His knowledge does not go that far. So, I have wondered if anyone has had this problem and also, would be interesting to know if one goes from SDD to SND, if the much longer, slower tx reaches fluid in the midsection better.

So far, only one other person has confirmed that she has fluid in mid-section, too. And I don’t know if its related to NxStage so much as SDD txs. But when I was in-center, just about every patient had a distended stomach, so I would think more patients would say they have this problem.

Also, my bp does not drop on NxStage yet I can still feel crampy if I have gained a little weight. My goal might be off .1 or .2. So on days like that I do turn down, and then if necessary, turn off the UF like you said. I really like the fact that with NxStage I can catch an impending cramp faster than with other model machines I have used. I don’t know how it does it, but there is more of a safety net with NxStage.

11

Barring any health conditions (ie. CHF, etc.) and assuming you aren’t overloaded with sodium, the fluid should come off. With Nxstage, we take off our fluid in the first 2 hours, even if we run 2 1/2 or 3 hours. What I was suggesting was to maybe slow down the UF rate and that would give the extra fluid a little more time to shift to the bloodstream.

Don’t know if that would help or not. What does your nephrologist say about it?

12

Was your dialysis clinic doing sodium modeling? Sodium modeling during dialysis helps get fluid to move from the tissues to the blood stream and available to be removed by dialysis without cramping and dropping your blood pressure, but it can leave you with a higher blood sodium and thirsty so you have a hard time avoiding drinking too much fluid between treatments. Here’s some information from the DaVita Patient Citizens website that might give you some ideas of things to talk with your doctor or nurse about.
http://www.dialysispatients.org/lowBP_drop.cfm

I assume you dialyze sitting up or perhaps in a recliner. Bear with me because this is a wild idea. Have you ever tried dialyzing lying flat since you’ve been on the NxStage (like on a couch watching TV) to see whether more fluid might come off your midsection?

Finally, is it possible that the puffiness you see in your midsection isn’t fluid or did it totally go away when you were doing in-center dialysis?

13

[QUOTE=Beth Witten MSW ACSW;12427]Was your dialysis clinic doing sodium modeling? Sodium modeling during dialysis helps get fluid to move from the tissues to the blood stream and available to be removed by dialysis without cramping and dropping your blood pressure, but it can leave you with a higher blood sodium and thirsty so you have a hard time avoiding drinking too much fluid between treatments. Here’s some information from the DaVita Patient Citizens website that might give you some ideas of things to talk with your doctor or nurse about.
http://www.dialysispatients.org/lowBP_drop.cfm

I assume you dialyze sitting up or perhaps in a recliner. Bear with me because this is a wild idea. Have you ever tried dialyzing lying flat since you’ve been on the NxStage (like on a couch watching TV) to see whether more fluid might come off your midsection?

Finally, is it possible that the puffiness you see in your midsection isn’t fluid or did it totally go away when you were doing in-center dialysis?[/QUOTE]

Yes, we used sodium modeling in-center. I found ways to tweak the machine using sodium modeling that enabled me to get a decently comfortable tx. Prior to that, I was on a straight 140 sodium, no sodium modeling, and had very decent txs. The key is individualizing the tx to the patient and there are many bells and whistles on machines and peramiter choices that most techs and nurses are completely unaware of as their training is not extensive enough.

When I was in-center I was really appalled at how incomplete staff training was. And I have been in a number of units. Most staff did a very good job at what they knew, but the problem was, the companies inadequately trained them and they had so many holes in their dialysis knowledge. It is possible to get a good tx in-center, but only if the tx is individualized to the patient’s precise needs. I found good settings by trial and error, but still had a lot to learn. I have spoken to a few professionals who knew their stuff, but found them to be the exception to the rule and could never find anyone to fully explain to me how to individualize the tx.

At home doing SDD, I dialyze lying in my comfy bed. No, it does not help to pull fluid off my midsection, but is the most comfortable way to dialyze IMO.

I don’t know for sure at this time if the puffiness in midsection is fluid, but I’m willing to bet it is. Because like I said before, I’ve had fluid build up there before and have seen it come completely off when I was in-center and had a machine that gave me individualized txs due to the machine settings working well with my body. This is what I think a lot of patients and staff don’t get- txs really can be individualized, beyond what was suggested in the article you shared and beyond what most patients experience in-center. It is an art few understand. The true professionals know what I am talking about. If you could bring a true dialysis professional on here, you would be amazed by what they could tell you about individualizing txs. And I have known home patients who by process of elimination and much observation have discovered the keys to individualizng txs.

In the time that I have been home with my txs, I am rapidly picking up new insights about the machine and how it operates and believe in time I will figure out the keys to individualizing the tx. I find that longtime dialysis staff and some patients who have been observant pick up dialysis knowledge through seeing things go wrong and how they are corrected. The more I talk with others sharing dialysis tips the more I see.

14

[QUOTE=Unregistered;12429]Yes, we used sodium modeling in-center. I found ways to tweak the machine using sodium modeling that enabled me to get a decently comfortable tx. Prior to that, I was on a straight 140 sodium, no sodium modeling, and had very decent txs. The key is individualizing the tx to the patient and there are many bells and whistles on machines and peramiter choices that most techs and nurses are completely unaware of as their training is not extensive enough.

When I was in-center I was really appalled at how incomplete staff training was. And I have been in a number of units. Most staff did a very good job at what they knew, but the problem was, the companies inadequately trained them and they had so many holes in their dialysis knowledge. It is possible to get a good tx in-center, but only if the tx is individualized to the patient’s precise needs. I found good settings by trial and error, but still had a lot to learn. I have spoken to a few professionals who knew their stuff, but found them to be the exception to the rule and could never find anyone to fully explain to me how to individualize the tx.

At home doing SDD, I dialyze lying in my comfy bed. No, it does not help to pull fluid off my midsection, but is the most comfortable way to dialyze IMO.

I don’t know for sure at this time if the puffiness in midsection is fluid, but I’m willing to bet it is. Because like I said before, I’ve had fluid build up there before and have seen it come completely off when I was in-center and had a machine that gave me individualized txs due to the machine settings working well with my body. This is what I think a lot of patients and staff don’t get- txs really can be individualized, beyond what was suggested in the article you shared and beyond what most patients experience in-center. It is an art few understand. The true professionals know what I am talking about. If you could bring a true dialysis professional on here, you would be amazed by what they could tell you about individualizing txs. And I have known home patients who by process of elimination and much observation have discovered the keys to individualizng txs.

In the time that I have been home with my txs, I am rapidly picking up new insights about the machine and how it operates and believe in time I will figure out the keys to individualizing the tx. I find that longtime dialysis staff and some patients who have been observant pick up dialysis knowledge through seeing things go wrong and how they are corrected. The more I talk with others sharing dialysis tips the more I see.[/QUOTE]

Now that you are doing treaments more often than in the clinics… feeling better, eating more and anything your heart desires within limits and drinking when you are thirsty rather than sucking on ice cubes… is it possible that you are gaining weight… why am I saying this, is because my partner has gained about 5 kilos since being on nocturnal… whenever she would get cramps before removing all the liquid I would start increasing her dry weight… So usually she would have edma in her ankle because if she stood alot that is where most of the liquid would flow to… her waist line has increased… don’t think this is where she is carrying excess liquid…

HemoHelper

15

[QUOTE=Unregistered;12430]Now that you are doing treaments more often than in the clinics… feeling better, eating more and anything your heart desires within limits and drinking when you are thirsty rather than sucking on ice cubes… is it possible that you are gaining weight… why am I saying this, is because my partner has gained about 5 kilos since being on nocturnal… whenever she would get cramps before removing all the liquid I would start increasing her dry weight… So usually she would have edma in her ankle because if she stood alot that is where most of the liquid would flow to… her waist line has increased… don’t think this is where she is carrying excess liquid…

HemoHelper[/QUOTE]

I do eat a little more on SDD and have gained 2Ks. I don’t drink more as I am not that thirsty since I am not on sodium modeling anymore and I usually have a feeling of fullness from what I think is unremoved fluid in the midsection. Previously, if my fluid intake was at it’s limit, I would get edema in my stomach, face and hands and the ankles were the last place it went to. Now I rarely get edema in my face, hands or ankles, but my stomach is still affected. I have heard that people carry fluid differently.

As I mentioned in another post, I believe it depends on how one’s machine pulls due to the settings/calibration. How else would one explain that I was regulary able to pull a maximum of about 3.6 on one machine with no problems and could not begin to pull that much on another machine, same model? And how would one explain, that when I was critlined, an entire .9 more came off beyond my dry weight and I could breathe in and out so much more deeply?

From experiences I’ve had on dialysis, I believe most patients are not getting the full benefit of what the machine can do as far as fluid removal if the settings are not individiualized to their specific needs and if other factors are not met. I believe the way most patients do dialysis, even home patients, is not individualized as there is more to a dialysis tx then what we are shown to do.

I have not tried nocturnal length txs yet, but as far as SDD, I noticed from the first week, that the machine would only remove so much and I definitely felt that some fluid was yet unremoved. From experience, I can tell if a machine is getting to the last bit of fluid or not. As I have said, the way the machine is set/calibrated determines how well it will remove fluid. I was also disapointed in that I had the preception from what others said, that with doing SDD txs daily fluid should release better. I am taking off less fluid at a time at twice as many days per wk., but there is also less time per tx to remove the fluid. I tried lenghtening the txs, but that didn’t help. So, I am looking for other ways to individualize the tx. I have yet to fully understand how settings and calibration effect fluid removal, but I feel sure there is something to this that most do not understand.

16

You keep alluding to personalizing your treatment. What can you do to get more fluid off besides slow down the UF rate and take it off over a longer period of time?

17

That is what I am trying to figure out! IN the past, I had spoken to some top professionals and experienced home patients and they had a number of tips they explained to me. But this was at a time when I had so much on my mind trying to survive poor unit care, my unit staff had no idea what I was talking about when I ran some things I learned past them, my nephs were not hands on with the machine and didn’t want to hear about indvidualizing the tx. as that did not jive with UNIT EFFICIENCY, so I couldn’t put these tips into action. And over time, I lost most of them. I can still sorta recall some of them, but not well enough to fully explain them or set my tx to use them. But trust me, there are ways to enhance the tx. And it’s nothing costly or complicated, just good dialysis know-how.

It is a mystery to me why more dialysis staff don’t know about these tx tips. The only thing I can figure is the company training doesn’t get involved enough because they only want unit efficiency. And like with anything else, only a small percentage know the tips of the trade. And I have rarely met dialysis staffers who care to be expert at what they do. It is a tiring job and not many go home and study to stay at the top of their field. But it is surprising to me that not many staffers seem to care about staying on the cutting edge or developing their tx skills.