Row number two...

[Sugarlump]

Today I had another row with my centre's head dialysis nurse.

I weighed myself, filled in my flowsheet and wrote down to remove 4 litres in 4 hours. (that's my limit, but my body handles it ok)
My partner programmed the machine, nurse put me on with two needles into my new fistula and everything was fine,
Threequarters of the way through my session I looked at the screen, to see how much time was left and noticed my fluid removal was altered to 3.5
I called the nurse over and he says he changed it, I shouldn't take off so much, etc etc and it's against policy (despite the fact last session I did exactly the same
with no comment from him.and no problems) .
I said to him I am the patient, it is MY dialysis session and I wish to be in control of my own dialysis. If you had wanted me to reconsider you could have spoken to me
and discussed why but not to just change it behind my back.
I think that is a fair comment.
He didn't and went off on one....
My blood pressure was fine and stable to the end, so were my A and V pressures and no alarms but no he wasn't having any of it.
I got the if I don't agree with his decision he'll refuse to dialysis me again...

I stated my side of the discussion calmly. That I needed to clear a backlog of fluid from the weekend before last (my birthday and I am human so I had a couple of drinks!)
and that knocking down the fluid means I can't catch up and because of the way our sessions are set, there isn't time for me to do any extra time. But no, I should get rid of the excess by not drinking during dialysis or at home...
I get so angry when someone doesn't listen to what I am saying... i have been on dialysis for a long while and I know my body, I need a certain amount of fluid during dialysis otherwise I get problems (machine alarms and cramp)
and I need a certain amount of fluid in between sessions, otherwise I get problems (such as constipation and slow brain activity)
so I am aware of my own limitations.
And my renal consultant always says if he thinks you carrying too much fluid to do 4 in 4 for a few sessions until you have cleared it.

What bugs me most is it is MY body and MY dialysis and I am the major part of it. I wish to be involved at every stage. Any changes SHOULD be discussed with me first.
I then later found out my potassium was high last week (when blood tests were done) yet no-one had mentioned it to me .... I despair.
It's this kind of behavior that makes me negative about my dialysis.
    

[Rerun]

You are correct in every aspect! 

               

[MooseMom]

That's beyond outrageous.  I'd be furious.

[NDXUFan]

Today I had another row with my centre's head dialysis nurse.

I weighed myself, filled in my flowsheet and wrote down to remove 4 litres in 4 hours. (that's my limit, but my body handles it ok)
My partner programmed the machine, nurse put me on with two needles into my new fistula and everything was fine,
Threequarters of the way through my session I looked at the screen, to see how much time was left and noticed my fluid removal was altered to 3.5
I called the nurse over and he says he changed it, I shouldn't take off so much, etc etc and it's against policy (despite the fact last session I did exactly the same
with no comment from him.and no problems) .
I said to him I am the patient, it is MY dialysis session and I wish to be in control of my own dialysis. If you had wanted me to reconsider you could have spoken to me
and discussed why but not to just change it behind my back.
I think that is a fair comment.
He didn't and went off on one....
My blood pressure was fine and stable to the end, so were my A and V pressures and no alarms but no he wasn't having any of it.
I got the if I don't agree with his decision he'll refuse to dialysis me again...

I stated my side of the discussion calmly. That I needed to clear a backlog of fluid from the weekend before last (my birthday and I am human so I had a couple of drinks!)
and that knocking down the fluid means I can't catch up and because of the way our sessions are set, there isn't time for me to do any extra time. But no, I should get rid of the excess by not drinking during dialysis or at home...
I get so angry when someone doesn't listen to what I am saying... i have been on dialysis for a long while and I know my body, I need a certain amount of fluid during dialysis otherwise I get problems (machine alarms and cramp)
and I need a certain amount of fluid in between sessions, otherwise I get problems (such as constipation and slow brain activity)
so I am aware of my own limitations.
And my renal consultant always says if he thinks you carrying too much fluid to do 4 in 4 for a few sessions until you have cleared it.

What bugs me most is it is MY body and MY dialysis and I am the major part of it. I wish to be involved at every stage. Any changes SHOULD be discussed with me first.
I then later found out my potassium was high last week (when blood tests were done) yet no-one had mentioned it to me .... I despair.
It's this kind of behavior that makes me negative about my dialysis.
    

ND:
Have your Nephrologist write a script that allows you to take off that fluid as you wish, he will not be able to say a word.

[cdwbrooklyn]

That's the same reason why I decided to do it at home.  Can't handle the BS that these jerks dish out.

[Riki]

I must be in a good centre, because everything from the amount of fluid to take off to the pump speeds are discussed with me before my needles are put in.  I'm not a good advocate for myself, however, I do have my mother who will speak very clearly (and loudly if necessary) on my behalf.  I think this is part of why I have such a say in my treatment.  I like it that way, and I like knowing everything that is going on.  I got mad at them one day for discussing me in front of me as if I wasn't there

[Sugarlump]

Sadly, unless you stand up for yourself and make it quite clear you understand your rights as a patient, they have a habit of ignoring you, running roughshod over your feelings and the worse one, in my book, treating you like a child.
When I am faced with a lot of aggravation like yesterday, it makes me feel so negative about my dialysis. Because in the UK you can't choose your centre or your sessions or who dialyzes you, the urge to walk away is sometimes quite strong. As if life wasn't difficult enough for us, don't make it even worse...

i always have in the back of my mind that dialysis is supposed to make you feel better  AND improve the quality of your life...

  for your messages of support x

[cassandra]

I'm sorry about that Sugar. If you are not on HDF you can change your UF goal quite easily. Although I agree with you with everything. Have you contacted someone about Nxstage ?

Stay strong girl, love, Cas