Non wanted fluid removal

[daddyrat50]

I just recently started hemo 3 weeks ago and me and my Dr agreed i did not need fluid took off at this time and promised they would not. I do not have swelling or any shortness of breath that indicates i have fluid. My very first days weigh in was 104.3 Kg. I told techs i was not to have fluid removal they said ok. But when i leave i am always lighter than when going in. I confronted them and even called my doctor and she swears she told them no fluid removal. Just this friday i went in weighing 105.3 and left weighing 104.3 which is number of very first weigh in. Are they removing fliuid from me. I am thinking they are against my wishes. Begiining to think the doctor is just telling me that they not to take fluid off and telling techs to do it. I still pee out most everything taken in. I did a 24 hr test and i took in 89 OZ of liquid and put out 75 Oz in a 24 hr timeframe. I have heard fluid removal will kill your residual kidney function and i want to retain that long as possible. I started dialyis at my request because of constant nausea only problems i was having. The machines set where the patient cannot see the settings. I am seriously considering quitting because of this and toughing out the nausea and no appetiite. My creatine was only 7 when i started i could go lower i think. Is it a requirement for them to remove fluid even if its against your will and supposidly dr orders? How much fluid removal is 1kg, being as i was 1 kg lighter going out? This center is not a national chain but at my local hospital that has this service. But i will say i have no ill effects so far and my nausea has went away and appetite come back with a vengence. My energy a little but not much. Also my weight has always flucuated 2 to 3 pounds either way my entire life. Cause of my Kidney failre is Polycystic Kidneys.

[SutureSelf]

First of all, your nephrologist is not trying to pull anything over on you. If you are not cramping or experiencing a major drop in blood pressure during treatment or feeling drained after coming off the machine, then your body has the 1 kg. to lose.  Secondly, 500 cc. is automatically set to pull off of you to allow for the saline received at hookup (what is in the dialysis lines) and rinseback.  Also, unless you wear the same clothes/shoes each time you go in for treatment, then your predialysis weight will not be the same. You can always ask the charge nurse on your shift to turn the machine so you can see the front and then have your tech show you the gauge showing how much fluid is set to be removed.  Again, it should be 500 cc. if no extra fluid is to be removed. 

BTW, the worse off your kidneys are the HIGHER creatinine level goes, not lower.  Also, BUN goes up and your eGFR (estimated glomerular filtration rate) will go down.

Hope your dialysis sessions continue to go smoothly.

[daddyrat50]

Thanks for reply, i dont use same clothes, but i wear the exact type clothes and shoes ever trip. I am very careful about my clothes i wear to treatments. So i am taking you saying i need fluid removed. I have not expereinced no drop in BP, dizziness or drained feeling. So can a person retain fluid thats not noticeable in swelling or breathing? Sorry for so many questions but i plan on living a long time and want to learn everything i can. I am not on no fluid restrictions.

[LorinnPKD]

Hi there!  I also have PKD, and I also do not have fluids removed right now. No swelling, easy breathing.  I think we're in the same boat.

At every session, I make a point to confirm/remind every nurse and tech helping me that I am not taking any fluids off.  Taking fluids off is also called "ultrafiltration."  So what I say each time is, "My doctor says there is no ultrafiltration for now."  The techs will see this on my flow sheet (instructions) and will punch that in.  I still do weigh-ins before and after the session like everyone else, even though my dry weight doesn't matter right now since they're not taking anything off.

The 500cc SutureSelf mentions takes off the saline they have to put into you for your hookup.  It is normal for them to take that off again, even if you don't have ultrafiltration.  I sometimes weigh in at half a kilo or so less than when I went on, even when I drink water while on the machine.  If your doctor says you are not retaining fluid, you will not need to take anything off beyond those 500ccs.  You may even be on dialysis for a long time without needing ultrafiltration!  We are the lucky ones, for sure.

And I wear the same thing each time, too -- yoga pants and t-shirts in different colors.  At my clinic I ask a ton of questions and have singled out the techs and nurses that are most helpful and willing to answer my many, many questions. I am planning on living a long life, too!

[Michael Murphy]

After almost four years I am still outputting all the fluid I take in.  However my nurse practitioner recommend for technical reasons I have a kilo removed at every treatment so I do.  I also bring a half liter bottle of water which I drink during dialysis.  My biggest problem is when more is taken my digestive track becomes blocked and the contents become as I call it bricked.  Then I gain weight cause I really am full of ...... any way just keep explaining that you are not fluid restricted.  Problem is every claims that they are not fluid restricted, unfortunately fo the few people who are not restricted since 95 percent of the people claiming no restrictions are bending the truth.

[SutureSelf]

So can a person retain fluid thats not noticeable in swelling or breathing?

Yes, especially with someone of your weight.  Fluid can collect in the abdominal area and upper legs.

[justagirl2325]

It could have something to do with the machine as well, ours cannot be set to zero fluid removal, it has a minimum fluid removal of 0.1 per hour.

[Riki]

It could have something to do with the machine as well, ours cannot be set to zero fluid removal, it has a minimum fluid removal of 0.1 per hour.

That's the minimum that our machines take too..

I would ask to have the machine turned so you can see it.. I always ask that... I tend to drop my bp when on the machine, but never have any symptoms.. My doctor has ordered that no action needs to be taken unless my bp drops below 90/60... the machine will alarm if the top number (I can never remember which is diastolic or systolic..*L*) goes below 100.. I sometimes have to remind the nurses not to set the machine to minimum when it drops unless I ask them to, or it drops below that 90/60.. I've had to yell at them a few times when I've looked over at the machine and saw that the UF rate was at .100 per hour, and no one said anything to me when they did it..

[iolaire]

After almost four years I am still outputting all the fluid I take in.  However my nurse practitioner recommend for technical reasons I have a kilo removed at every treatment so I do.  I also bring a half liter bottle of water which I drink during dialysis. 

I'm basically in the same boat at 30 months.  I let them take from 1-1.5 kilos unless I'm very heavy and I drink 500 mil each session, and eat an apple and some other snacks.  On many days I'm down only a bit maybe 0.3, some days I've gone up if I eat even more. 

But that being said, the machines are not accurate (on their fluid removal) if I was not drink and not eat and take off 1 kg more than likely I would not be down 500 mil, but more like 700 or something.  A tech has also pointed at another machine and told me that it takes off even more.

The minimum the nurse wants to remove is 1040 mil across 3.5 hours.  But then go to other centers with other machines and they are fine removing 500.  I think the newer machines only need 300!

[Riki]

The minimum the nurse wants to remove is 1040 mil across 3.5 hours.  But then go to other centers with other machines and they are fine removing 500.  I think the newer machines only need 300!

The machines we use are 15 years out of date... they don't even make them anymore... and they have a minimum of 100mls per hour.. so my four hour session, if I just did the minimum (which I probably would never do, but that's just me) is 400mls

[thegrammalady]

Even new machines cannot be set at absolute zero. They all automatically pull something. Also dry weight is not a static figure it fluctuates during the day in everyone.

[kitkatz]

In the long run YOU are in charge of YOUR treatments, so give them hell as needed to make it right for you.