I Have a Question... PLEASE HELP

[rhaggz]

Has anyone ever heard of a dialysis machine arbitrarily take fluid off of you? I was told by a center technician that if you have extra fluid the machine will take it even if the UF Filter is turned off. I have been fighting this for a couple of weeks now.

Normally I have a couple of pounds on and they calculate for the settings on the machine. However I have been under all but once in the last two weeks. The day I was not under I had the technician turn the UF Filter off 50 minutes early and I was .8# over. The time before that I had them turn the filter off 30 minutes early and I was 1.4# under. The next time I only had 0.40# on and told them not to take any. My dialyser is new every time  and they have to flush it every 30 minutes so they supposedly only took what they flushed, However when I weighed out I was 2.4 under.

I am lucky in the fact that I can feel in my legs before I start to cramp and I tell them to stop the UF Filter, but my legs hurt for the rest of the day and I have trouble walking. I usually have to nap for 2-4 hours and even though the pain in my legs goes away. The best description I can come up with is that it feels like they are trying to pull the marrow out of my bones. My legs are always weak afterwards, usually until the next day.

I have had the Dr increase my dry weight as I gain weight and I keep a close watch on that... They have taken as much as 11# off me without any side effects when I first started so it is not too much taken off as I have severely curbed my liquid intake.

Please can somebody assist in answering my question or supply some assistance in conquering this problem.

[Angiepkd]

Hmmmm....I am not sure about this one.  I use NxStage at home, and my nurse told me that the only fluid my machine pulls is my rinse back and whatever I set the UF to remove.  Technically that means that I do remove fluid, even if the UF is off, but only the amount that I am given back at the end of treatment.  I have never used any other machine, but I am sure someone here will give you a better answer.  It would be a plus if the NxStage cycler would just take off whatever it needed to, but it definitely does not.  Hope you find the answer.  Nothing worse than feeling lousy after treatment, especially if it is from pulling fluid you don't need to!

[rhaggz]

Hmmmm....I am not sure about this one.  I use NxStage at home, and my nurse told me that the only fluid my machine pulls is my rinse back and whatever I set the UF to remove.  Technically that means that I do remove fluid, even if the UF is off, but only the amount that I am given back at the end of treatment.  I have never used any other machine, but I am sure someone here will give you a better answer.  It would be a plus if the NxStage cycler would just take off whatever it needed to, but it definitely does not.  Hope you find the answer.  Nothing worse than feeling lousy after treatment, especially if it is from pulling fluid you don't need to!

I'm on hemodialysis 3 days a week at a treatment center. the machines are Fresenius, but I can't remember the model number...

[Wildrose]

I still can't figure out how it works, but I can tell you that when they set it to minimum (to NOT pull any fluid off) it still does. I've left the dialysis center as much as 1 kilo (2 lbs) lighter than when I went in, with the machine set to not pull any fluid. I don't get it at all. It drys me out. I come home and sleep all day.

Sorry you are having the same problem, wish I had some advice for you but I can't figure it out myself and no one else (at my dialysis center) seems to have an answer. 

[rocker]

This also happens with NxStage.  Our current cycler regularly pulls 300-600ml extra.  It seems to be very cycler-dependent - the last cycler didn't pull nearly as much.  I'm not sure if time is also a factor, as he runs for about 8 hours.

I just know that if he has, say, 1L to come off, and he drinks maybe 500ml during treatment, he'll generally come out about even.  If he falls asleep early and doesn't drink much, I'll reduce the UF so he's not overdrawn.

[Rerun]

This doesn't sound right to me.  Not a liter extra.  I'd talk to another tech or the BioTech about it.

[KatieV]

This also happens with NxStage.  Our current cycler regularly pulls 300-600ml extra.  It seems to be very cycler-dependent - the last cycler didn't pull nearly as much.  I'm not sure if time is also a factor, as he runs for about 8 hours.

I just know that if he has, say, 1L to come off, and he drinks maybe 500ml during treatment, he'll generally come out about even.  If he falls asleep early and doesn't drink much, I'll reduce the UF so he's not overdrawn.

I just got a replacement cycler as my NxStage machine was pulling extra.  It was within NxStage's tolerances, but was affecting me quite a bit.  I tried adjusting for the extra, but it still had me dizzy, rapid pulse (130 bpm!), and blagh feeling.  It was taking off between 0.8 and 1.7 liters extra.  I, too, run for 8 hours.  My new cycler is much better.       

[Riki]

Do you use the same machine every time?  If you do, I'd demand to have the machine looked at.  You shouldn't have so much taken off while in minimum, and if I were you, until it was fixed, I'd be asking to be taken off whenever you start to feel the cramping come on

[rhaggz]

Do you use the same machine every time?  If you do, I'd demand to have the machine looked at.  You shouldn't have so much taken off while in minimum, and if I were you, until it was fixed, I'd be asking to be taken off whenever you start to feel the cramping come on

I do use the same machine... It least it is in the same place every time... I have them turn off the UF filter when I feel the first tinge of a cramp coming on... I have also contacted the manufacturer to try to get an explanation for the variance... But have not yet heard back from them...

[ianch]

Cant say I've had that problem, or at least noticed it.  The timing of treatment and meals is a big contributor for me.  I usually weigh exactly what I expect post treatment every time. But then I'm not aggressive with the target as I was told not to be for HomeD.     Never had cramps or hardly any complications since leaving the center.

[PatDowns]

Unless you wear the same clothes/shoes each time you go in, your weight will fluctuate.  The last few weeks have been warmer weather, maybe you aren't wearing as heavy clothing.  It makes a difference since you are still trying to take off the same amount of fluid.

Plus, dialysis machines need to be periodically re-calibrated.  Check to see when the maintenance was last done on the machine in your station.  Also, each machine should be numbered, so it doesn't necessarily mean you have the exact same one each treatment.  Sometimes they are removed from the floor for maintenance.  At my center, each machine has a stenciled number on the lower right front.   Your clinic probably has Fresenius 2008K2 machines.

[jbeany]

They all do it so some extent - it's part of the mechanical process involved in cleaning your blood.  In theory, they return the extra back to you with the saline they use to pump the blood back out of the lines at the end.

My only suggestion - take daily notes and start tracking which machine you are on.  (I know my center rotated machines, but not chair spots, so see if you can find some identifying number.)  Then figure out what you want taken off and demand to be allowed to chose your own fluid removal amounts each treatment.  You should be able to do this no matter what, but some centers will fight you on it until you can prove to them that you know why you are choosing particular goals.

[rocker]

Another suggestion is to bring a bottle of your own beverage with you. Many people find relief by sipping water at the first sign of cramping.