How to convince nurses it's the dry weight that increased?

[marlinfshr]

I guess once they determine a dry weight for you they won't believe that you can actually gain weight. Normal for me is to fluctuate by 5 lbs or so up or down. Especially here in the summer.
Why I'm bringing this up because 2 weeks ago I was on their (Davitas) minimum fluid withdrawal. I was feeling great. Dialysis wasn't affecting me negatively. Then last week came along and I added a few lbs. Of course they are telling me I'm retaining fluid. I told them I'm not but they wouldn't believe me. So they upped it to 2000. I left dehydrated with a headache and my legs feeling like dried prunes. 2 days later I had the same weight when I went in and questioned why they're taking so much fluid off again. Of course the response was that I was retaining fluid. Once again I said I'm putting on weight. I'm eating more junk. I made the mistake of saying that my AC went up so of course that got her saying that I'm drinking more fluids and I'm not getting rid of it. I thought it was because I'd escape my hot house by getting in my car, driving around, and stopping at assorted food joints. But what do I know? It's only my body!

Back to it tomorrow and I'll see what they do and if they bother to listen to me. The three days last week I left dialysis feeling like crap and dehydrated when up to that point I was feeling great. How do you get the nurses to listen? I know my body and I pee everything out I drink. I'm not swelling anywhere either. If they take out all that fluid again tomorrow, I guess the only option is to not eat for the next 2 days to lose the few pounds I gained last month. Don't they understand that weight gain can come from food?

[cattlekid]

A couple of ideas....

1.  Talk to the doctor.  He can change your dry weight "with the stroke of a pen" as my old medical director told me.  I told him that I was eating more after I started dialysis and voila, dry weight change.

2.  Tell the nurse or tech setting up your machine exactly how much you want taken off.  Don't let them decide for you.  I could only tolerate 3 kilos without crashing.  Anything 2.5 or under and I skipped out of there after treatment.  So I would sometimes leave with a half a kilo on just so that I wouldn't go home and directly crash on the couch for the next 12 hours.  If they balk, go up the food chain.  It's your body and your treatment.

[kitkatz]

Tell them what you want taken off and see it is done.  If they do not write up a complaint.

[Desert Dancer]

I second kitkatz and cattlekid. It's YOUR body. It's YOUR decision. Put your foot down and make them do what you want. Don't be afraid to go up the food chain with written complaints if they refuse (but don't allow them to refuse). Raise holy hell right there on the spot till you get what you need.

There's no reason on god's green earth you should walk out of dialysis feeling like shit when you know you've gained real weight. They are entirely at fault for that, not you.

[Grumpy-1]

As said

A couple of ideas....

1.  Talk to the doctor.  He can change your dry weight "with the stroke of a pen" as my old medical director told me.  I told him that I was eating more after I started dialysis and voila, dry weight change.

2.  Tell the nurse or tech setting up your machine exactly how much you want taken off.  Don't let them decide for you.  I could only tolerate 3 kilos without crashing.  Anything 2.5 or under and I skipped out of there after treatment.  So I would sometimes leave with a half a kilo on just so that I wouldn't go home and directly crash on the couch for the next 12 hours.  If they balk, go up the food chain.  It's your body and your treatment.

It is your body and you KNOW your body,  Don't let them take control.   Tell them what you want taken off EACH session and if they don't do that - tell the Dr and file a complaint.    Grumpy.

[marlinfshr]

Well, the other day I had a hard time convincing them and when another nurse saw how frustrated I was she came over and explained to the head nurse of the day that I usually get the minimum (if any) and they dropped it down to 1200. But I was already halfway through my treatment so too much was still removed, but I felt like I had made progress. Until today. I saw they wanted to remove 2700. I am not retaining fluid but they won't believe me. They told me fluid can be anywhere in my body, not just where it is noticeable. I understand that clearly but mine is not the case. Then I pleaded that since everything still works I don't want my system overworked, only to destroy what function I have left. She told me that the dialysis will make the kidneys stop working anyway. Come on, they still work and I'm not retaining fluids. I don't want any more pressure on the remaining function or my heart. I'm getting frustrated. Then they lowered it to 2000 again which is way too much for me.

About 2 hours in I start cramping and have a pounding headache, which is about right for me with too much fluid removed. A nurse came over and asked what was wrong because I was moving my legs as they were hurting. I pleaded with her and said they are taking off too much fluid. She ,looked at the machine and wondered why as she new I usually barely had any removed. So she asked the head nurse if they could tone it down. Of course the head nurse said "no, just give him a flush". So, they take out too much fluid because they think I'm retaining it only to put fluid back in me? Whats up with these people? I know my body and I am trying very unsuccessfully to convince them I gained weight. "Oh", they say. "good thing your getting your appetite back" HELLO. I have had my appetite as good as its ever been since getting out of the hospital MAY 1st. What can I do to convince these people that I'm not retaining fluid and am raising up to my NORMAL weight. AAARRRGGGHHH!!!

One thing I noticed and pointed out was everything was fine up until Saturday the 22nd. It was the next Tuesday where they started pulling all this extra fluid. Now Saturday, the 22nd I noticed that they wrote down that there was a 13lb (yes 13lb) difference between arriving and leaving so my "new" weight may have been set to 13 lbs under normal. They probably misunderstood as I called my weight upon leaving that day and wrote down the incorrect number. Now I think they are using that false weight as a guide and drawing all this fluid. I'm about over it!

[Riki]

refuse to be put on until the goal is set where you want it to be.  They shouldn't be so anal about it.  If you still pee, you're not retaining, at least not as much as they think you are, and they should know this.  Start taking notes, stuff like your weight coming in and leaving, who put you on, what your goal was set on the machine, if you had any problems like cramping or headaches, and if you needed to have a flush/fluid returned.  Keep track of how much you take in and how much you put out.  That should give you an idea if you are retaining, like they say.  I do think that they are mistaken in what your dry weight should be.  And, as said before, talk to the doctor.  If the doctor changes your dry weight, there's nothing the nurses can do about it.

[Dman73]

Refuse this ... refuse that and give them a hard time about something/anything and they will document a case about you and one day you will told to find another dialysis facility because you are considered a belligerent patient followed by receiving a letter in the mail stating the same.
It happened to me and now I tone it down at my new unit and if I have a real concern I discuss it with the head nurse or my doctor.
Good Luck all ...

[Desert Dancer]

Refuse this ... refuse that and give them a hard time about something/anything and they will document a case about you and one day you will told to find another dialysis facility because you are considered a belligerent patient followed by receiving a letter in the mail stating the same.

So patients should just bend over, hand them the vaseline and allow their health to be destroyed in order to be seen as compliant little patients? I don't think so.

There's no need to be belligerent whatsoever. Just simply, quietly and consistently refuse to be bullied into a protocol that doesn't work, whilst documenting everything. Believe it or not, patients do still own their own bodies; you don't sign over your health and bodily integrity just because you're forced onto life support.

[Sydnee]

Last year when Ed was still doing in-center hemo after he started back to work he was having trouble with the techs taking to much off on Fridays. You see for work he needs to wear steel toed work boots which weigh 1 1/2 kilos more than his normal shoes. The techs that weighed him refused to believe there could be much difference between the two pairs of shoe. For the first two Fridays he would leave in horrible pain at 10 pm and since he worked the next day he was late for work on top of it  he needed to be up by 5:30am there was no way.
He told the neph and the head nurse what was happening. They told the techs to listen to Ed. They also told Ed to subtract the shoes weight from the scale and tell the techs to use that weight. And good news it worked they listened.

[marlinfshr]

Well, they at least upped my dry weight a kilo. The nurse was ready to still drain to much fluid and when I saw the numbers I explained everything. So she said she would set it at the minimum and see how I feel. Cool! I have 4 hour sessions and I guess the machine started going crazy with a half hour to go. They tried and tried to shut it off but determined that the machine was having issues and that since I only had a half hour left they'd let me go. Of course I was alright with that, even though I lost all my blood that was in all the tubing. I guess it just looked like a lot but probably wasn't too much really.

My point is that with hardly taking any fluid, losing a little blood, and even getting off the machine a half hour early I felt great leaving. Just like I did upon arrival. No headaches, no cramps, not dehydrated. Much better then the previous several times when they drained all this fluid because they insisted I was retaining it. I hope they'll keep at what they did today.

[Wildrose]

I'm glad they changed your dry weight and that you felt better! The days I get off the machine earlier I don't have headaches and feel sooooo much better. Even on minimum I usually leave the center at a kilo less than I went in at, thats 2 lbs less. Crazy. I've been in the same boat with you regarding the dry weight issue, matter of fact I deal with this a LOT because my weight fluctuates by 5 lbs as well. I get harassed by some of the techs often, other techs know me and believe me when I say I have no fluid. But the ones that try to argue the point I just say no, put me on minimum. Usually they roll their eyes or frown, but they do it. I try to be nice to all the techs as I have to see these people every week and I don't want to burn bridges... but they sure irritate me sometimes. 
 

[Adam_W]

I don't ever have a problem with them changing my dry weight. I just tell them that I feel my DW needs changed and they say "OK, what do you think it should be changed to?" And I set up my own machine, so I just set whatever goal I want and tell the tech and she or he charts it.