It is your body - TAKE CHARGE!

[aharris2]

Folks I read a lot about what they do to you at dialysis. Please remember that it is your body and you have a right to tell them what you want and don't want.

Crashing blood pressure, cramping, passing out - you tell them to raise your dry weight. If you are feeling "wetter" than normal between sessions, you tell them to challenge you a little.

YOU, not THEM!

Here's my rant, Rolando is quite a lot nicer than me 
 
Yesterday, Rolando was a bit light headed and crampy after dialysis. As we were leaving the charge nurse said that she had decided to "challenge" Rolando's dry weight a little because his blood pressure was high.
I asked Rolando if she had asked his permission to challenge him. He said no. I flashed - I saw bright yellows, reds, and oranges, and I saw my prey - the nurse. I bared my fangs... and I was ready to go chew her up and spit her out! But Rolando wouldn't let me, he wanted to leave... grrr! (but, there's always next session!)

We put a lot of thought into the target weight that we request at each dialysis session. If there is to be a change, we expect it to be done only in discussion with Rolando and the he has absolute veto power - as do you all, it is your body!

Rolando's blood pressure was high due to a medication issue, not a fluid issue, and, IT ROSE during the session. It did not fall which is what it would do if related to fluid. She made the change after I left (1 1/4 hours into the session) - unilaterally. I am not happy! Ultimately she did what she has orders to do - administer clonidine. That helped. We will be making our displeasure known on Monday.
 

The militancy in this point of view dates back several years, before we recognized the issue - they allowed his ending weight to creep upward due to errors in their own calculations until he ended up in the hospital from fluid overloading. At that point "we saw the light" and took charge, learning as we went.

[Sluff]

It is true and if anything is to be learned on this forum, it is just that.

Knowledge is power! Take charge of your care! You are your own best advocate!

[Wallyz]

Sweet fancy moses.  This needs to be taken to the clinic director.

[peleroja]

Yup, been there, done that.  They were always trying to bring me back to a mythical dry weight in spite of the fact that I am deliberately losing weight to get on the transplant list.  Took charge.  I explained that they may not be removing enough fluid because part of my loss between one session and the next is body mass.  Now they ASK me how much I want to take off.  Also, a new nurse screwed up my machine twice.  I told them she was not to touch me or my machine ever again.  Bottom line is they don't care what happens to you after you leave the center.  They're off to another patient. 

Rules also apply to yourself.  I finally made the rule that I go straight home after dialysis, no shopping (I'm allowed to stop for dinner only if they have a drive thru!).  Remember, just because your BP seems fine in the center, it still takes the body time to adjust.  My BP was fine in center, then I stopped at an ATM and nearly passed out.  I got home and my BP was below 100. 

[okarol]

 

[MandaMe1986]

I couldn't have said it bette raharris2. 

[Neo]

couldnt agree more. I try to double check everything the nurses ans staff do because your right they do try to change that dry weight on you all the time, among other things. Give em hell!!

[jbeany]

I've learned to do my own calculations, and then double check what they are entering.  Even with a calculator, some of them can't subtract when there's an odd number involved!

[petey]

aharris,
I agree with everything you said!  This is so important for a dialysis patient and/or caregiver!  It is true (sad, but true) that often times when you sit in that chair, you are just a BODY to the nurses/techs.

This quote could describe me many, many, many times during the last 14 years that Marvin has been living with ESRD and dialysis...

I flashed - I saw bright yellows, reds, and oranges, and I saw my prey - the nurse. I bared my fangs... and I was ready to go chew her up and spit her out!

Most of Marvin's nurses/techs/even doctors have seen my "fangs."  Mess with my Marvin, and you've had a baaaaaaaaddddd day.  Unfortunate as it is, those of us who are aggressive, intelligent, well-informed, well-read, and persistant are often seen as hard-to-get-along-with.  I know a lot of Marvin's nurses/techs/docs think I'm a bitch.  I don't care. 

[jbeany]

Mine don't see me as bitchy (mostly!) but I do a really, really good donkey imitation - stubborn, stubborn, stubborn!  Might as well give me my way, 'cause I'm just gonna keep at it until I get my way!

[swramsay]

  Remember, just because your BP seems fine in the center, it still takes the body time to adjust.  My BP was fine in center, then I stopped at an ATM and nearly passed out.  I got home and my BP was below 100. 

My blood pressure is always below 100 - usually in the 90's. I start feeling it (light-headed etc) when it goes below 80. Today, it's been hovering in the 70's/50's. I've been dizzy and feel a bit strange. Even my vision seems a little off. I weigh more than my dry weight. I got off my run yesterday higher than my target dry weight and drank extra fluid last night as well. Me feet cramped several times waking me up last night. That's never happened before. My stomach cramped twice. It's possible I've put on some weight because I feel like I am eating more and exercise is putting on a little muscle but I don't think I've put on that much (weight or muscle). I didn't go to the gym today because I wonder if it could be my heart. Hopefully it's a fluid issue.


p.s. While in-center, I calculated my own uf targets and gave them to the techs.

[G-Ma]

Why not try uping your dry weight .5 at a time....it sounds like they sucked all the fluid out of you...my BP is like yours and if its below 85 over whatever I weigh before needles come out and then get saline if needed.  You know your body best.  Good Luck

[thegrammalady]

i always tell the tech how much to take off, if they ask about my dry weight i say "ingnore it" and the problem of challeging dry weight was solved when my doctor wrote orders not, under any cercumstances to challenge my dry weight, ever.  i usually don't have any problems though, doing nocturnal i always have the same nurse and tech. and they know better. i'm sorry rolando had problems.