A New Worry

[cat]

This is my first post and I am still not sure why I am writing.  Maybe getting it out will help me.  I am frustrated, still scared and wondering what exactly happened yesterday.    About half way into my dialysis, I started feeling awful.  Both my hands and feet started cramping – even my jaw felt like it was locking up.  I also had a rather sharp pain in my left side.  I called the nurse and she brought me a small cup of water.  She THEN looked at the machine and noticed that more than twice the amount of fluid that I should have had taken off in the total treatment had already been removed.  She immediately added a liter of fluid.  When I asked what had gone wrong, she only said that someone hadn’t “confirmed” my goal and the machine reverted to the default – which was almost four times the amount of fluid I should have had removed.  By the end of the session, I still felt crampy and had a terrible headache.  Most of last evening I felt confused and had difficulty remembering words.  My husband insisted I drink more water than usual and I did start to feel better.  I am fairly new to dialysis (August 2008) and have had problems since the beginning with the center taking off too much fluid.  I do not retain fluids.  I rarely gain any weight between sessions, but they seem to feel they need to take off fluids!  After my awful experience yesterday, I worry more than ever about how much fluid they have to remove.  Can I tell them how much I want removed or is there an amount they must take off?

Although I still have a mild headache, I do feel better this morning; but I am wondering what I should do Tuesday.  To make matters more complicated, Tuesday is the day they start using my fistula for the first time – I was already nervous about that!

  for listening.  Venting did make me feel better.

cat

[willieandwinnie]

cat, when my husband was on dialysis, he went through the same exact things that you have mentioned. They are taking too much fluid off of you  and you have to tell them what to take off. Do you know your dry weight? When you become to de-hydrated, your whole body is begging for fluids. Goo for your husband to insist that you drink more  We had some bad experiences with our clinic and we decided to do home-hemo which was a blessing. I know that some people can't or it is not offered but have you thought about it? In the mean time I would tell the clinic how much to remove, they can stop removing fluid at anytime during dialysis and just clean you blood of toxins. I feel so bad for you and I hope things start to improve. You'll get more information from other folks here. Please keep us posted. 

[monrein]

Cat, now you must scratch back.  They are taking too much fluid off, they aren't listening to you (or you aren't yelling loud enough), and they're not being careful enough with their checking and this has to stop.  I would absolutely be telling them exactly how much you want to remove and learning how they set that on the machine so you can always feel in control by checking yourself.  My machine doesn't return to the default UF setting of 3 kilos but it does stay there if it isn't set in the first place.  However, I'm the one who sets all that so there's just me to blame and I like it that way.

So sorry this is happening and I really hope it gets sorted out soon.   

[kellyt]

I agree with the two above posts.  They know what they're talking about.  Good luck on Tuesday.

Also, welcome to IHD.  You came to the right place for answers.  Don't be a stranger!   

[swramsay]

When I had problems with a center (that I left) I wanted things like that documented. I reported the errors and my concerns to the social worker who documented them in my file.

[peleroja]

Definitely tell them how much fluid you want removed (in my clinic they ask me how much I want removed).  You are the patient; you are in charge, not them.  You may not be retaining fluid, but you still need to remove the toxins.  Welcome to the group and be sure and come back and tell how it goes next time.

[del]

Always check the machine yourself to see how much fluid is coming off!!!!  You have to look after yourself in most cases.  people make mistakes. Sometimes it is what happened to you with not confirming and sometimes people do the addition wrong for how much fluid has to be removed.  Hubby always checked!!  He always kept a check on his weight and knew exactly how much had to come off. A few times the nurses actually added things up wrong and we noticed it and got them to change it.  The way you felt is the feeling that hubby would get when too much fluid was removed.  It would have helped if you had eaten something salty along with drinking more!!

[boxman55]

Kick some butt at your center. Talk to the managing nurse to set some rules with their staff...Boxman

[jamoman]

learn those settings, make sure their set correct, hang in ther we`ve all been drawn too hard & it sucks. once you take a more active roll it will get better.

[cat]

for all the input.  I guess I just assumed that they knew what they were doing.  I will definitely take a more active role from now on.  I especially like the idea of having everything well documented.

cat

[Rerun]

I always know what my dry weight is.  Having said that, dry weight is a moving target.  Dry Weight is your weight minus any extra fluid.  If you aren't retaining any fluid then they will probably only take off what they will rinse back into you to clear the lines at the end.  Usually .5 or whatever that is..... 500 cc's  


This is how I calculate what I want them to take off.  I weight in at 51.6 kilos.  I know my dry weight is 49.  I subtract 49 from 51.6 and get 2.6.  Then I add .5 for rinse back and they need to take off 3.1 kilos.

    51.6
  - 49.0
__________
      2.6
+      .5
________

     3.1  Total Fluid Removal  or 3,100 (different techs say it different)


So, yes, tell them what to take off and make sure you double check.  

If you don't want to use your fistula on Tuesday then deny it.  You can use your catheter for as long as you want.  You are in charge.

[Bajanne]

I am happy to see that you are experiencing what IHD is all about.  "Knowledge is Power" is one of the mottos around here.  This site promotes patients standing up for themselves and taking charge as much as they can.
At my centre they take off what you tell them to take off.  Most patients go along with what the nurses say, however.
Please update us concerning your next session, especially since it will be the first with the fistula.  We are with you all the way.

[monrein]

Cat, Rerun has a very good point about the fistula.  For your own peace of mind you could delay starting the use of the fistula and I would even tell them that they need to help restore your confidence. 

[paddbear0000]

I can't really offer anything more than a hug, as I just stared dialysis myself (on Tuesday, in fact!)   

[jbeany]

Oh, they'll fuss and holler, but if you stand your ground, and insist on having things done your way, they will.  Learn how to read the machine.  Always get your own weight, and decide how much you want off.  Do your own math, and double check the machine settings.  It's very easy for the techs and nurses to make a simple mistake that cause you all kinds of agony, even when you have a good center and good staff.

[Gramapat]

I am another one who doesn't gain fluid but need dialysis to take the toxins out.  It took me several months to learn to read my machine.  One of my nurses sat down and explained how they figured what fluid to take off and where it was entered on the machine.

I let the techs figure out how much fluid they take off and make sure it agrees with my calculations.  A lot of times, I tell them how much to take off because a lot of them think I should have "at least" so much taken off.  NO!  I am very firm about how much they take off.  It is my body.  Learn how to calculate and learn your machine.  You have to be in charge.   

[RichardMEL]

Cat - lots of good suggestions here! I can't stress how important it is for YOU to check the machine settings yourself as a double check. It doesn't mean you're checking up on them(even if you are ) or you don't trust them - just for YOUR peace of mind. It's YOUR treatment and YOUR body!! If you know your dry weight you can easily calculate how much fluid you should be taking off (remember to add a bit more for washback/any drinks you might have during treatment - usually it's 0.5l here) and tell them! Double check what the machine's UF target is set to so you know (remember the UF target is in ml, so 3000 is 3 litres). Ask to have the machine turned towards you so you can see it. If they raise a fuss about it just explain that it's YOUR treatment and you want to monitor the progress. If they bitch about it's their job etc just say it's for your peace of mind etc. It really shouldn't be an issue (hopefully).

The thing is this experience underlines a lack of proper procedures at your unit in that a second nurse SHOULD  double check and confirm the settings and UF calculations by whoever sets you up - and also double check things like heparin settings, pump speed etc etc - that should catch things like the UF target being wrong and all that. Definitely something that should be taken up with the administrator of the unit. I mean taking off twice your UF target can be quite dangerous - and you suffered with the cramps and all from pulling all that extra fluid out!! That's just not right.

Best of luck with it cat!