4KG?!?!?!!

[Hubbs]

Damn. about the scales at my center. they have 2 one under the chairs and one for the wheelchair folks but u can use it like a normal one as well. when i get there I way myself. this helps me get a better Idea of my liquid intake.
ok, my dry weight is 78.4KG.  today i weighed in and it was 81.1  hmm i have to take off 3KG. witch is normal for me.  so. 2 and half hrs later i started cramping all over the place.. but sometimes this happens. but not this bad.. i was really concerned. but i didn't say anything. but when i was unhooked i got up and weighed myself.. (F*ck ME!)  77.1 KG's no wonder i feel like crap.  she took 4KG off instead of 3.  I had a little shit fit. she just about put a whole iv bag back in me.  I complained to the head nurse and she took the needles out.. and i told her i don't want that women working with me again.  ok?  "fine"   i hope she disciplined her.. wonder what would of happened if she did that to someone a lot older  and weaker then I?    has anyone exuberance this?  if so what did you/they do?

(singing how dry I am)

[jbeany]

Were the scales off or did she set the machine wrong?  I always found it better to take a couple of weights and take an average. 

As for setting the machine wrong, well, honestly, the only thing you can do is check for yourself.
Every.
Single.
Time.
 Think of how easy it is to mix up a number - 4.3 for 3.4, or to not hear something correctly, or even to add or subtract incorrectly.  Nurses are human, and they do make all the same dumb mistakes the rest of us do.  Except when they screw up a number, it's not the account balance in the checkbook that crashes. 

As for what to do - go enjoy a really large drink of something!

 Seriously, how hard you should be on the nurse depends on the nurse.  Is it a good nurse having a one off bad day?  Then grumble a bit and let it go.  If it's a bad nurse, and just another incident in a long line of screw-ups, then by all means make a stink and refuse to let her near you again.

[Hubbs]

they are not suppose to mix up the numbers. and this isn't the first time she goofed. honestly.. u want me to brush this off?   and trust me.. being able to drink little more was not worth what i went threw. try it some time.

[Rerun]

Write down your weight for them and do the math for them.  Save the paper and make sure someone else checks the entries.

Yes this has happened to me many times.  I have no idea why.                 

[wrenchturningredneck10]

always always always check their work....i watch them set the machine, every time.  They've taken me too light several times.  Extra fluid is nice, but yeah, not worth what we got through for it!!

[KICKSTART]

Take responsibility and check , check,check. and trust me ..we have all tried it sometime! not because numbers are mixed up , but dry weight isnt always correct.

[RichardMEL]

Yes, I always check for myself that I am happy with the figures in the machine. Also in our unit another nurse is supposed to come and check both the calculations made by the nurse that put you on, and what's on the machine and that they all match, so in theory the only way to go wrong with that is if I give an inaccurate weight (ie: say the wrong number, which has been known to happen once or twice?!!!) and thus the calculations are all out. Either way I definitely read the machine myself so that *I* am happy with what is set. I've maybe caught 3 or 4 times in 4 years where an error's been made. One time everyone missed it - I had 3L taken off rather than I think 2.1 it was supposed to be. Amazingly I didn't cramp or anything. That was kind of sweet surprise to come off 900 under. I considered lowering my dry weight at that point, but decided not to tamper with what was working, given my BVM was always pretty much on the money. If I had a little extra fluid running around, so be it.

Anyhoo moral of the story: everyone is human and makes the odd mistake, even you, so always double check.

[del]

Always check the machine and how much fluid is coming off yourself!!!  Anybody can make a mistake.  We do our own dialysis at home and I always double check the machine and hubby always checks as well.  There have been times when the scales have been off as well. Not much you can do about that. 

[kitkatz]

They have to verify with me what to set the machine at every time.  My techs for get the profile 3 and sodium until I remind them EVERY time.  Good Lord!

[RenalSurvivorDotCA]

I ALWAYS do the math myself and I tell them how much UF goal to dial in.

You are the only one who will pay if they make a mistake. To them it's just a mathematical error.    To you it's Welcome to Cramp City.

[KICKSTART]

In fact im such a pain in the  they have FINALLY let me get on with it and do my own settings !

[Hubbs]

sigh, I'm going in today, and i'm not looking forward to it.  I have done nothing but think about this.  cuz they DO just think about it as  mathematical error.. that pisses me off. cuz they have a sign on the wall about how they care and want perfection. blah blah blah.. most of all i'm worried they are going to kill someone some day. 

I know now that i can't put my trust into this.  i'm still new, and i don't know the first thing about checking that thing. and it faces es away from me when i sit down. some do tell me how much they are going to take off..
i'll tell u, i'm ready to walk out of that place if they give me any shit about what happened.


I forgot to mention one thing about how they treat me.. since i'm deaf and half blind. they think my brain dosn't work. and treat me more like a re tart then a man.. i.e.  they clap when my bp was safe to go. this was that day they took  too much off. and i told the nurse to save it.

[RichardMEL]

KickStart - they let you set your own settings now?!! That sounds like a GREAT victory for you!!!!

Ironically I am not allowed to set my own settings anymore. Good grief!  I kind of relish though making my point for every little change I want, since every nurse knows I'm well and truly capable of changing it by myself, but I'm sticking to the rule book so they can't complain.

Some day I should be a real *#)@#*)@ and request a change every 10 minutes or so. Pump speed up a bit, UF target up a bit, pump speed down, UF profile off, pump speed back up.... see how long till they break 

Hubbs - that sucks man. My vision is not that great either so it's a little hard for me to read the machine at times, but they usually put the machine closer to me and angled in so I can read it better which really helps. When you're looking at the machine maybe before you get on see if you can look up close to the machine and know where the specific displays are that you'd want to be interested in, like the "UF Goal/Target"(how much to take off), "Time Left" and maybe the "UFR" (the rate which fluid is being taken off).. when you know where the figures are that you need to keep track of it's easier to know what to look for. We have older 4008B machines which have large digits in set positions and it's real easy to read. On the newser machines we have (4008S's and K's) they are on a screen display, but always the same info is in the same place, so I know where to look.

Good luck!

[KICKSTART]

Yeah RM  ! Thats exactly what i did , i needed things changing so much during a run , profiles werent working for me , the loop wasnt working, so i pretty much devised my own programme. At first i did it by suggesting things , then they seemed happy with me doing it, but just as a courtesy i told them what i was doing, and now they just say ..oh you are more than capable of knowing what you are doing and what you need to do ..so go ahead ! It still needs a few tweeks , but im finding what works best for me AND im getting better results !!!

[Hubbs]

RM, thanks man, i don't know the model of the thing, but it has a turn up/down keyboard and a monitor on top and a monitor face on the thing itself.  i'm not sure how ppl can watch it when it facing away from you and on the side. when u sit back the fan in the back is blowing into your face.  Anyways. as i went in that day. it was like a hush with me.. i saw the women who goofed on me there. she was in another part of the place. I saw her, and she saw me. nuff said.  I had a male nurse named Jim. he is very cool. and knows the good from the bad (techs)
he was blowing me kisses when he saw me.   i just turned around and   we both got an LOL out of that.. he said  you and me today.. so we went threw everything. he WAS disgusted of what happened that day and showed me what he ganna do and take off..  i felt better   and i was back to flirting with the girls working there
but there will be a nother day and another and another... 

[KICKSTART]

Hubbs ..dont know if its of any use to you but the monitor moves ! It swivels up and down and you can pull it round to face you  or push it away from you 

[RichardMEL]

Sounds like the 5000 series machines. We had one in late last year for a test - very cool looking space age thing - but our unit was too cheap to buy any!

[Riki]

They turn the machine away from me too, so I've no idea what anything means, except for the blood pressure.  I've been doing this for almost 2 years, and I don't know what anything means.  I was warned that if I was too dry, I would cramp, but I never have.  I have passed out, though. I"m not sure which is worse.. *L*

They way they do it here, is that once one nurse does the math, another will check it before they put any of the info into the machine.  As far as I know, no mistakes have been made with me.

[RichardMEL]

I think it's wrong to turn the machine away from us. It's like they don't trust us to know, or treat it as their domain. Now yes, there are patients who don't care and leave it all to the staff to do and care about - and that's fine, but some of us actually Do care, and have an interest and want to be INVOLVED IN OUR OWN TREATMENT. This is one of the most important things for me, and we got given this booklet the other day about our "rights and responsibilities" which includes the right to be involved in our own treatment and to be given all nessecary information and all that.

Luckily my nurses all know that a) I'm not an idiot b) I'm interested in my treatment and what is going on and have enough understanding to make reasonable and informed decisions.. so they let me see the machine and don't make changes without discussing with me.

[Hubbs]

Rich, pls share your info with me (US) so we will know as well. lets start with the I.V. bag, thats almost emty when we are done.

[KICKSTART]

Hey RM , you know how long i have had to fight them to do this. Guess thats my problem ..stubborn as a mule, plus the fact i had done 6 yrs pd didnt help ...they dont like us on hemo !! because we are used to being in control 

[ChickenLittle56]

When I changed centers when I moved out of state I went from a center that used treatment sheets during my time on the machine to one that uses the touch screen computer located between machines. I absolutely took interest when I could look at my treatment sheets. I could see how my bp, bfr, last ending Kt/v and other readings. It even had my last blood work on it. When I came to this center it isn't easy to get that information from the some of the techs. Now sometimes I lose interest in getting that info.    I start asking for my info again because I really do nned to be interactive withe my treatment.

[JScott1753]

Since I almost passed out due to room-spinning dizziness after a treatment(BP was OK) about two months ago, and found that the machine had taken off.6 or .7 kg more than was supposedly set, I have *always* inquired about what the setting is. Since I'm not given heparin, they are supposed to do a flush every half hour for .6kg total. Then a .6 rinse back when they return the blood at the end. Total of 1.2 plus difference from dry weight. Always amazes me when they can't add 2.5(for example)+1.2=3.7, without profiles, since my total expected amount is less than 5kg.
Biggest "miss" was 1.7kg below dry weight about three months ago.This was one of the weird times the machine "independently" decided to do its own setting. I've asked the head nurse, the PA, and all I get told is "it just happens now and then." Thanks!
Jon

[Hubbs]

well, it's a new week for me, and guess who was running my show?  yep. the same girl who took more off then she was suppose too. i'm like when am i ganna get a break??? !  I went up to her VERY angry and said.  Are you planning on fuking up again? cuz if u are i want someone ells.  u ppl treated that like a mathematical error. but i'm not. she was shocked. lol, but i was PISSED cuz i told them i didn't want her working with me anymore. so i walked around and razed HELL for everyone. i finally got there attention. and they put there best person on me..
and i was very grateful..  and i told her when she was done. 

[Stoday]

I thought of you last night when I was being connected up Kickstart.

Tech says "3 kg not keeping to your fluid restrictions?"

Me: "Erm — Weight less dry weight plus 2 cups of tea and rinseback = 2 kg."

T: "Oh er yes — sorry!"