Dry Weight Issues

[shelly]

It seems to be a on going battle with the dialysis nurses and me in regard to my dry weight.  Why is it that the nurses at my center always take off more fluid than will bring me back to my dry weight?  I have asked this question numerous times and the answer I alway get it that the machines are not precise and it depends on the diasylate mixture and that everyone's body reacts differently to having fluid drawn off.  Example, my dry weight is 47 kgs and I initially weigh in at 49 kgs, instead of only taking 2kgs off of me they shoot for 2.25 or 2.50  kgs.  I don't for the life of me understand that and most of the time within the last 1/2 hour of treatment I begin feeling that cramping feeling in my legs and have to call them and have them stop taking any more fluid off.  Please can anyone shed some light on this for me?? 
After I found out my kidneys were failing I dropped about 25lbs not because I wanted to but because I was following a renal diet trying to stay off dialysis as long as possible, not to mention the stress of dealing with the whole situation.

[Ang]

dry  weight  is  a  bit  hit  and  miss  at  the  beginning,the  extra  .5  of  a  kilo/pound  could  be  for  washback,if  you  are  aiming  for  2,  try  1.7/1.8  see  what  happens,  i  regularly come  under  my  dry  weight,  some  days  i  get  headaches  and  feel  like  crap  other  days  i  could  run  the boston marathon.

good  luck  shelly

[Wallyz]

It doesn't matter what the nurses want.  You tell them how much to take off, if they don't sdo what yousay, tell them to get antoher nurse on it.

[willowtreewren]

It could also be that your dry weight has changed (upward). That happened to my husband, but since we were dialyzing at home, I could simply take off what was appropriate and not shoot for the former dry weight.

When he was in-center, they always had to give him saline toward the end of treatment to compensate for taking too much off. Doesn't make sense. We can avoid that at home.

[willieandwinnie]

shelly, My husband had the same problem when he was in center. They would always use the 500ml for washback and I ask them to change it to 250ml and that did the trick most of the times. We did home hemo for 4 years and I never figured in a washback but we did dialysis every other day. You need to tell them how much to take off and tell them you feel like crap when they dry you out too much. Let us know how it goes. 

[peleroja]

My dry weight is also a problem.  If I don't gain very much they want to take off less.  This is problematic because I am also deliberately losing weight to get on the transplant list.  I can't make them understand that if they only take off enough to get me back to a non-existent dry weight, they aren't taking off enough because I am also losing body mass.  I agree with Wallyz, tell them what to take off.

[jbeany]

The centers add in a certain amount to cover the rinseback - all the saline you get at the end when they are flushing the blood out of the lines and back into you.

The machines at my center consistently take off just a bit more than they are set for.  I'm losing weight, so that actually works for me - I end each session .1 or .2 below what we set as a dry wt.  The next session I use that as my new goal, and keep working down.  If your wt is stable, though, that's not such a great thing.
You need to take charge of setting your own goals.  If they are taking off rinseback, and it's not working for you, demand that they stop, or change your dry wt on the chart to reflect what you want to take off.  You may have to fuss and argue with them at first, but you can get them to do what you want - it's your right.
The nurses are right about one thing - everyone reacts differently.  But once you've done dialysis long enough to figure out how you are going to react, it's time to change things so you don't have to crash and cramp every run!

[G-Ma]

jbeany is exactly right.  You need to take charge and know those numbers intimately, know what the rinseback is so you can add to what you want taken off and the secret is what you want...talk to the Charge Nurse or Director and they will put a note on your chart to work out the dry weight between you.  That is going on with me right now.  A couple weeks ago they did a challange without bringing me  into the loop and I passed out about 3 times in center, finally drove home, into bed and slept all the next day...that is not how I want to get sleep so they heard about it and now we are sailing so far.

[aharris2]

You need to take charge of setting your own goals.  If they are taking off rinseback, and it's not working for you, demand that they stop, or change your dry wt on the chart to reflect what you want to take off.  You may have to fuss and argue with them at first, but you can get them to do what you want - it's your right.
The nurses are right about one thing - everyone reacts differently.  But once you've done dialysis long enough to figure out how you are going to react, it's time to change things so you don't have to crash and cramp every run!

WHAT JBEANY SAID!!!

There are lots of techs and nurses but only one you. They do not remember your particulars but YOU DO!!!

You know that you always come off lighter than the ending target (say by 0.5 kg).YOU therefore tell them what weight you want to come off at but adjust it upward to make up the difference. You want to come off at 60kg? Tell them 60.5kg.

Every time you walk in there you tell them:

"My weight is ___kg, going down to ___kg."

Get them used to hearing that and they will start asking you what you want. As much as they would like you to think differently, you are a competent adult therefore they MUST listen to you.

Alene

[shelly]

Thank you all for your most helpful solutions to my ongoing issued regarding dry weight.  I will demand that they only take off x amount and to stop taking off the rinse back .  I just hate arguing with them because I think that they won't give me good care and label me a trouble maker.  Your all right, I am a well educated adult and know what feels best for my body.
What is a challenge? in regards to the dialysis staff. 1st time I've heard of this....

[okarol]

Since Jenna was still urinating she didn't need to take off any fluid, yet the techs would leave the standard machine default. That would cause her to feel nauseous and dizzy and wipe her out for the next 8 hours. So we would ask them to reset it. At first the techs would just ignore the request. One even told me that they are not able to do that. I learned that you have to be direct, insistent and watch what they do. They didn't want to make a change because it involved calling the charge nurse over to readjust the machine, and that delayed the session beginning. I told them "It's fine, we will wait until the nurse is available" which made them realize that we weren't going to be bullied or ignored. Jenna's unit was good over all - but this was one thing that we had to fight for, every session - without fail.

[G-Ma]

A challange is when the tech/nurses think you should be taking off more and want to see how much more and if they are wrong you crash...the only way I'll let them challange me is if the needles stay in and they put fluid back after I weigh.  Sometimes if they think you are retaining fluid in ankles, legs, face, under eyes etc they may want to try a challange as you may have lost weight.  Unfortunately we have no way of knowing our absolute correct weight anymore.  I know my body so I'll just tell them if I want to try .5 more or something.

[kitkatz]

It dow sot matter what is taken off,my BP still crashes at the end of the session.   It just does.  I think it is my body's way of saying enough.  If it doe snot crash you can be sure I will go home with two extra kilos I do not need on me.  I feel terrible with the extra fluid on. So I make a point of pushing it with the tech to set what I want set.

The tech and I figured out that when I stand up my BP will come to normal again so he does not push the fluid unless I am asking for some. He says I have strange BP.  Oh well.

[thegrammalady]

dry weight isn't much more than a wild assed guess, that being said i track my weight from session to session i know exactly how much i've gained from the session before and i always tell them how much to take off. after 3 years no one argues with me anymore, they just do it.

[RightSide]

My dry weight is also a problem.  If I don't gain very much they want to take off less.  This is problematic because I am also deliberately losing weight to get on the transplant list.  I can't make them understand that if they only take off enough to get me back to a non-existent dry weight, they aren't taking off enough because I am also losing body mass.  I agree with Wallyz, tell them what to take off.

I've been having the same problem, but in the other direction.  My dry weight was calculated when I first started dialysis last October.  But that was right after a year of dizzy spells and nausea, in which I wasn't eating well, and I was losing weight.

With dialysis and other treatments, I'm feeling better and my appetite has improved--and I'm positive I've gained dry weight.

If I weigh myself first thing in the morning, before eating or drinking anything, would my neph accept that as my new dry weight?

[hurlock1]

Dry weight is a myth as far as I know. Some time back, Betty the evil Nurse Practitioner, said, " I'm lowering you're dry weight" like it was a good thing. and I thought cool. . . Then a short time later she lowered it again. Several things happened with her and it was decided that it was time for her to move on. In the mean while, I was coming off w/ 90/52 BPs, and walking around like a zombie all the time. Then we got a new NP. The New NP raised my dry weight by a couple of Kilos. BUT the machine kept bringing me down to the level that the earlier NP had had me set. One day this week, I left the center and felt OK, I even was able to excersise. Felt OK the next day. It makes me think that with all the carrying on that they do that they (Them) don't know what they're doing. I don't know anymore than they do, in fact I would say a lot less. But it would be good if I thought that somebody knew something.

[dwcrawford]

 I don't understand all this business about dry weight.  I do know that last night, my first night in center, she said they took off 1.5 (somethings) but would probably take more next time.  As far as weight/weight I also know I've lost over 5 pounds since thursday.  Two week ago I would have been estatic about this, but now I'm scared.  Blood Pressure has been low all day.  I just raied it a little by drinking some broth from 76/43 to 85/52... but I still feel really goofy.  Since it is Saturday and no doctors available, any ideas of what I can do?  Tomorrow I am not going to take my bp meds... good ideas or not?

[petey]

I don't understand all this business about dry weight.  I do know that last night, my first night in center, she said they took off 1.5 (somethings) but would probably take more next time.  As far as weight/weight I also know I've lost over 5 pounds since thursday.  Two week ago I would have been estatic about this, but now I'm scared.  Blood Pressure has been low all day.  I just raied it a little by drinking some broth from 76/43 to 85/52... but I still feel really goofy.  Since it is Saturday and no doctors available, any ideas of what I can do?  Tomorrow I am not going to take my bp meds... good ideas or not?

Holding the bp meds sounds like a good idea to me -- you may also want to drink a glass of ice water -- this helped when Marvin got pulled down too low (something about that cold water seemed to hydrate him quickly).

For years, we struggled with Marvin's dry weight.  The nurses/techs wanted to pull off what they thought would get him down to that "perfect" dry weight that was listed in his chart.  But, from one treatment to the next, a person's weight can change (up or down depending on what you're eating, if you're urinating, if you're sweating, if you're not eating, if you have been sick, how easily your body gives up the extra fluid, etc., etc., etc.).  The ONLY one who knows how you feel on the inside is YOU -- remember that.  Marvin has become an expert at knowing if he's a little "dry" or a little "full" after a treatment.  We got down and dirty with every treatment he had in-center about his dry weight.  His nurses would say, "You're the only one at this clinic who thinks he can walk in here and tell US what to take off.  We're the professionals."  And, Marvin would politely say, "But I'm the patient and I know what I've eaten -- or haven't eaten -- since the last treatment.  I know how I feel now, and I now how bad I'll feel if you pull me down too low.  If I'm the only one keeping up with his dry weight at this clinic, then YOU need to educate your other patients about dry weight, pulling off too much, leaving on too much, or whatever.  I have justed walked in here, and I AM telling you what to take off."

Dry weight is really just a guess -- remember that.  It is an estimate of what you should weigh if you didn't have any extra fluid on; it's not a perfect science, and it changes hour by hour, literally.

Now that we're doing home hemo, we can adjust Marvin's dry weight daily if we want to -- it all depends on how he feels, what he's had to drink and eat, and what he wants.  And, I don't give him any lip about it  .  When will the "professionals" start listening to the patients?  Do they have so many uninterested, uninvolved patients that they think the ones who are on top of things are hard to get along with?  Why aren't they encouraging ALL of their patients to keep a track of what's going on with their own bodies?

[dwcrawford]

Well the ice water certainly tastes good.  Maybe I'm cutting down on water too much.  I'll keep experimenting.

[jbeany]

Dan, at the very beginning, they will keep trying to push your dry weight as much as they can, because your kidneys have been at such a low level of function that you may have been retaining water for quite some time.  When it's been on you for months, though, it's very hard to get off.  I lost enough fluid weight in the first couple of weeks that sometimes it felt like my skin on my legs was loose after a run.  I'd been retaining water and didn't even realize it.  (I was still urinating as much as ever then - but my kidneys just weren't working well enough to pull all the extra fluid off.)  I dropped about 7 pounds of fluid weight I didn't think I had on me.
Still, if your bp is that low - they are pulling too much off, too fast, and you need to drink more water or have less fluid pulled in the first place.
Have patience - this dry weight number is only an educated guess.

[RichardMEL]

jbeany's posts in this thread are spot on.

In our unit they automatically add 0.5kg for washback(rinseback) and that also accounts for the snack they provide during treatment (some lame sandwiches and a cup of tea/coffee or water). For a while I went to 0.4 because I never ate the fruit cup they provided (I am so bad I know!) and that was fine, but I went back to 0.5 because I like to come off 0.1 or so under my dry weight.. I can feel like I can drink more then! (I know it's a myth but it gives me a bit of control!).

The main thing is that every patient should be master of their own body and nurses/techs should listen to them! If they calculate 2.5 and you only want 2.0 off they should accept that. They may not agree, but it's up to you. In my unit they let me decide and usually set the machine (hey, I'm a boy, I like pressing buttons ) but absolutely, within reason, you should be able to declare things like your UF target or UFR and stuff like that, IMHO.

Good luck!

[silverhead]

I believe that all the members on this site are here because they want to learn more and want to take control of their treatments, but I do remember back in the days when Sharon was treated in center that a great majority of the patients seemed to be in limboland about what was being done to them and just blindly accepted whatever goal were set. I talked to many of them and told them about IHD and how to access the site (after making sure they had computer access), but almost always got the blank stare, they just blindly put up with the goals set and suffered along. Sad to see......
No wonder the staff looked at us with disdain when we started asserting our rights, but pretty soon fell in line when our Neph put an emphatic note in our chart that WE would tell them the goal for the day, no more problems after that, I think my hint to them that the note relieved them of any blame if things did not go well worked in our favor.....
Tom

[RichardMEL]

I believe that all the members on this site are here because they want to learn more and want to take control of their treatments, but I do remember back in the days when Sharon was treated in center that a great majority of the patients seemed to be in limboland about what was being done to them and just blindly accepted whatever goal were set. I talked to many of them and told them about IHD and how to access the site (after making sure they had computer access), but almost always got the blank stare, they just blindly put up with the goals set and suffered along. Sad to see......
No wonder the staff looked at us with disdain when we started asserting our rights, but pretty soon fell in line when our Neph put an emphatic note in our chart that WE would tell them the goal for the day, no more problems after that, I think my hint to them that the note relieved them of any blame if things did not go well worked in our favor.....
Tom

Good post. I often see people come in/through our unit and they are of the "accept it all" type. I think it's a combination of an implicit trust in doctors and nurses to always do the right thing by patients as well as to some extent not wanting to know about the whole process because it's so much to take in a deal with and also a bit of fear that if they do speak up they might get into trouble or get the staff "off side" - all reasonable things I think.

I think though the process, specially with long term dialysis care, needs to go both ways and involve respect on both sides. I think in my unit there is that. I know that the staff allow me to chose my UF target, UFR, pump speed, profile etc because they recognise I have an interest in, and understanding of the issues involved.. but I have also indicated that yeah if I change stuff I accept what happens too. I think though it also comes down to that I *talk* to them and go through issues and usually we come to a joint decision on treatment. I'll explain why I want something, if they disagree they'll explain why and we work it out. I think that's the way it should be done - as a team - not "us and them"

Of course I realise I have it very good at my unit and some places it very much is a "sit there, shut up and we will do it all" setup, and I hope I never end up in a place like that!!

I am a firm believer that understanding and information gives you some control over your own body and treatment and I think that gives (me at least) a much more positive attitude/outlook.