War or Submission ?

[KICKSTART]

Well ive been told in no uncertain terms to keep my hands off my machine ! and to make sure i do they are not putting me on the Loop or setting a BVM , just pull,pull,pull the fluid off till i feel like crap and call for a nurse. In case you are wondering what i did , i used to check my BP , my BVM and if all the fluid got pulled off me , i would stop my UF for 10 mins to 're-fill' as fluid passes quickly from my tissues into my bloodstream, all the nurses knew i did this. But now ive been told im not capable of monitoring my treatment ! I was so stunned (as the sister had been so supportive up to now and learning was encouraged,) that i forgot to tell her THAT , had i not been so alert i wouldnt have noticed i was about to be given the WRONG dosage of epo (ok it was only epo, so no harm done , but what if it has been something else? !!!) I had my dressing on my lines changed twice by 2 different nurses wrongly ! one nurse used the wrong stuff to clean it , one didnt even clean it!and i dont know what its exact name is but we have like a white plastic 5 gallon container that sits on the bottom of our machines (its a mix thats used to clean our blood ? ) Now we all have our names on and we all have different strengths? of this fluid. It seems my name last week was ..Keith ! because i had his container , with his fluid in ,on my machine. SO im going to take great pleasure in telling her about looking at her staff as far as being capable goes and see what she says to that ! Looks like its War doesnt it ? 

[okarol]

Some units complain that patients are not educated or tuned into their dialysis while others treat patients like the should not ask questions or participate at all. I think that it's much healthier for the patient in the first scenario, but sounds like you are not getting support for taking self-care measures. I know there are studies about this, and when we get back from the hospital I will try to post some. Take care. 

[Rerun]

I've been in a unit like yours.  I say fight.  Talk to your doctor and have him/her write you an order to monitor your own treatment. 

[RichardMEL]

A couple of things:

The bottle of fluid you're talking about is more likely than not the dialysate mix, also known as a "bath" (yes, I love the idea of the nurses giving me a "bath" - well the cute ones anyway  ). In the case of you getting Keith's - it may well be that he and you use the same "bath" and they didn't have one marked for you??

The bottles are usually labelled so you know what yours is. In my unit ours all have these pink labels, with numbers of the different baths, eg: 2885 2886 etc. I know what I am so I can just check to see if it's right or not.

btw getting a wrong epo shot can be quite serious I would have though - if it's more than you need then that can overstimulate your hemoglobin production and potentially lead to problems. Maybe one shot maybe not, but more than one definitely.

I also think I have a refill issue like you and like to monitor my machine also. I've been given the don't touch thing - but I'm not sure how serious it is anymore. Some of them are still cool with me doing minor things while others really go a bit wild. I mean just the other day I had a nurse telling me I was such a good "model" patient because i took such an active interest in my treatment and making it the best etc... but then another will go nuts if I want to set my UF target. Go figure.

I wonder if it's as much about them worrying about one of us making a mistake and causing a problem (rather than THEM making a mistake...) and having it come back on them.

I tell you though I am definitely on the side of wanting to control as much of my treatment as I can. For one, it would be nice to be supported by the nursing staff rather than at odds. I mean I want to be able to do things like take 10 minutes off from UF if I feel a cramp coming on - what's the harm in that? If it stops me cramping all the better isn't it? I'm not talking about changing stuff in the machine I don't understand just simple things like the UF goal, machine temp, profile(though I have given up on those for the moment) and start/stop UF and pump speed. That stuff isn't rocket science and yeah it does feel like I'm being treated like a bit of a no hoper by those that tell me NO - even when it's the same people who have said I should do home training... go figure

I say yes, take it up with the neph and the administrator. I would use the argument that I use - it's MY body. It's MY treatment. Shouldn't *I* have some measure of control over it? I know what MY body is doing/feeling and from experience know what works. Why should I wait for some nurse to come along and hit the UF off or take the goal down or something when I can do it myself? I'm not a fool and I'm not playing with it for the sake of playing. I just want a good uneventful treatment so I *can* have a good dialysis, not one where I cramp and am in pain(like yesterday).

Good luck!

[calypso]

They are probably worried that if something goes wrong they might get the blame for it because they set up your machine initially. In that case they should have you sign a waiver or something. Although that isn't practical either because you're not going to give up your right to sue if something does go wrong and it wasn't your fault.

You can see the potential for a problem don't you? Let's say Nurse Wratchet sets up your machine, you're humming along when you realize you want to change something, you do it on your own, no one sees it and at some point crash, or god forbid, die. Now if you're not around to admit you changed it, Nurse Wratchet is going to get blamed for the setting not being as it should, and possibly for your death. She might even forget and question herself if she set it right or not. How many times have we left the house and worried if we left the stove on or some such? They need a lil camera on the machines like they do on ATMs. But it doesn't happen often enough to warrant such measures. So what's your solution? 

[KICKSTART]

RM.... It may well be the dialysate mix but it wasnt a case of no container. I am on a mix thats classed as A17 and this one belonging to Keith was A3  so it wasnt just a case of no container going spare !

Calypso..I understand your point, but its NOT a case of changing something ..its JUST monitoring whats going on . Stopping your UF for 10 mins to refill is not altering the treatment . I HAVE been talked through it by one of the nurses and shown exactly what to do and was told at the time it was a good idea and to certainly try it and see if it worked (after all it gives me a better dialysis and a better result).

[RichardMEL]

ok sounds like they made a real mistake there.. and that is critical.

In my unit one nurse puts us on then a second nurse comes and verifies everything checking the bottle, the settings etc - that's to cut down on stuff like that - do they not do that in your unit?

[KICKSTART]

Ha RM your joking ! No one does a second check , thats why i DO ! The thing is there was no repremand , nothing , just oh right , well its ok ,it doesnt really matter ! Well if it doesnt really matter then  why am i on it ?

[thegrammalady]

i really have only one rule.................."it's my life, do it my way or don't do it at all.  luckily i've had the same nurse for 3 years and she knows me well. we rarely disagree on the way something should be done.

[Ang]

submission= it  usually  drains  whatever feelings  you  have  to  keep  up  the  fight  for  so  bloody  long,concentrate  your  energies  on  more  important  things,


pipe  up  every  so  often,  just  so  they  know  your  still  alive

[KICKSTART]

submission= it  usually  drains  whatever feelings  you  have  to  keep  up  the  fight  for  so  bloody  long,concentrate  your  energies  on  more  important  things,


pipe  up  every  so  often,  just  so  they  know  your  still  alive

What could be more important than looking after my treatment ?  Sorry but submission just might kill me !

[RichardMEL]

I am astounded they do not double check eachother's work. It is a procedure done every shift I am on and it HAS to be a different nurse that checks in case a mistake has been made. Wow is the NHS that bad?

Do US based clinics also have this system of double checks that we have?