Absobloominlutely MAD !

[KICKSTART]

Well yet another head to head faces me on tuesday ! You can say what you want about hemo , maybe its not that i hate? maybe its just the staff ? In the six months i been on it ive learnt more about the machine than people who have been on it 2 years! and believe me ive had too ! Now i know we all have different machines but i hope you can follow me ? They are doing some crazy things to me at the moment , like just trying to pull and pull fluid off me regardless. But im not going to crash for anyone! So one way to prevent it , is to monitor your BP and your BVM , if either of those get too low chances are your going to crash. So when mine gets low or i start to go funny , i call a nurse over show her my BP and BVM and usually stopping my UF for 10 mins , puts things back on track. Or reducing the amount of fluid i need to take off. So today on the machine , my bp drops way low and the prognosis says i dont have that much fluid on me, so i call the nurse over and she said ..oh you must be pretty dry , we will reduce the fluid to take off. Now sometimes an hour or so later the prognosis will change ,as i refill, so i call the nurse back over to higher the fluid again. Now being of sound mind and body and keen to learn , i asked the nurse what to press so i could adjust it myself as it went up and down (and to save keep calling her over) and she said ....Ive been told NOT to show you anything because you keep altering things on the machine WTF? I will say it again WTF ? The only 2 things i do are check my BP and BVM and doing this has saved me from crashing many times! I couldnt alter anything else even if i wanted too! So now im waiting to go head to head with the person that said this on tuesday. So much for education , so much for learning , so much for being in control , so much for hemo. It looks like the lunatics have taken over the asylum here .

[okarol]

  Sometimes all you can do is say WTF?

[Rerun]

GRrrrrr.  Tell them to show you or you are going to just start pushing buttons.

[HubbysPartner]

You would think they would want their patients to learn how to manage their treatment so it takes some of the pressure off them.  It's time to get out the really big stick and start   

Considering you've been able to keep yourself from crashing, they should see that you are a smart person who is interested in taking control of your treatment.  It would be nice if they could realize that it would benefit everybody to partner with the patient. 

Sorry you are still having such troubles, KS.  I hope things start to work out for you.

[kitkatz]

Lordy Lord!   

[thegrammalady]

they are afraid if you change the settings and do something that harms you, you will hold them responsible and sue them. keep fighting. 

[cookie2008]

I would just keep calling them over to adjust it, and I would also have a talk with the head nurse or whoever is accusing you of making adjustments.  They would be having a heads up with my hubby if I was going thru what you are going thru. 

[del]

Kickstart, do they have units there where you basically control your treatments? They do here in Canada. Monrein was at one in Ontario and at the hospital where hubby trained for home hemo they have one.  I think you would do well at one of those centers.  You have a lot ,more control.  I really wish you could do home hemo. I think you would like it a lot better and do well on it.  Home hemo only started here in our province about 4 years ago. Hubby was the third person trained for it and now there are over a dozen people doing it and lots more on the waiting list to be trained.  Take care and keep pushing for more control of your own treatments!! 

[RightSide]

GRrrrrr.  Tell them to show you or you are going to just start pushing buttons.

I didn't wait for the nurses or techs to show me.

I downloaded the Operator's Manual for our dialysis machines from the manufacturer's website:

http://www.fmcna.com/operatorsmanuals.html

Everything I needed to know was right there.

[billybags]

RightSide, You are so naughty , power to the people.  lets face it half the time the nurses don't understand the machines. You could become a tech in your spare time. LOL

[cariad]

GRrrrrr.  Tell them to show you or you are going to just start pushing buttons.

I didn't wait for the nurses or techs to show me.

I downloaded the Operator's Manual for our dialysis machines from the manufacturer's website:

http://www.fmcna.com/operatorsmanuals.html

Everything I needed to know was right there.

I love this idea. Kickstart, pry the control straight out of their hands. We're with you on this. 

[RichardMEL]

Yeah I feel KS's pain in this regard - some of my nurses have started to get annoyed and "forbid" me from touching anything (although I think with most of them it's more tongue in cheek, but I do know one or two are dead serious). Most of them are OK when I quit alarms or the like, but they really have started to get annoyed when I change things - or even when I take a 10 minute UF break because I am feeling horrible. Should be my choice I reckon, and it's not hard to hit the "UF ON/Off' button. Had one nurse the other day go "You turned it off. Why? You don't need it off" and turned it back on (and then decided to reduce my UF target, which I *didn't* want!!)  I thought about arguing, but I'd had 5 minutes off so I thought OK, whatever... and well I got through the session. I think I have it better than KS because usually if I explain WHY I have done something they are cool with it.

Re the BVM KS... are they running it with a UF profile? You will often see refills occuring if you do it with a profile. I used to run profile 6 with a BVM (so you'd take a large amount off for 30 mins, then 30 minutes at UFR 100, then another large, but less than before, for 30, and 30 at 100(to refill) and so on). Also with the BVM the idea was to leave everything (ie NOT change UF targets) until the end, and thus it would give a more realistic idea of how you were doing fluid wise. I mean if at the end your refill was around 90% you were on target - any less and you're too dry - any more and you've still got fluid. I would think chopping and changing during a BVM run might invalidate the results a bit - but I could be wrong.

I have found a good compromise with the nurses that hate me changing stuff is to call them, if they are looking after me, and propose a change and let them do it. I don't feel bad about calling them back again and again if they insist that I can't change anything - that's THEIR decision. You should do the same I reckon.

[KICKSTART]

RM with regards profiles ive used 2 both with BVM. One is what we call the Loop where fluid just gets pulled off , no stop time for refill and i get down to a BVM of around 87. The other is profile 3 with stop/start times for refills and i get down to a BVM of 83! and i feel like crap ! I know the Loop suits me and not getting a BVM of below 86/87. I come off at my target weight with no extra fluid on me , in fact i came off under my target on Sat !

[Bub]

Power to the people.  Attica, attica, attica, attica!!!

[nursewratchet]

Kickstart, you crack me up!  Just the title of your post alone... Other than that, I'd be pissed.  You can certainly control your machine...

[RichardMEL]

re the control of machines... maybe SOME nurses want to protect themselves (and/or the patients) from those that DON'T know what they are doing (or think they do and don't) and screw around with things too much, then when their treatment goes bad they have problems and whatever. I don't think I've ever screwed up my settings or made mistakes, but it could just be something like that. Also maybe there's a bit of "That's our job" kind of thing going on.. even though at my unit some of the nurses say to me stuff like "You can do the machine you should be doing home training" - even though they know that's not an option for me (alas)... so it's like they register that I am fine with the machine... just some others don't like it.

[Bub]

I have to say I enjoyed this post if only because of the word "absobloominlutely".  I had a very dear friend who is gone now that used it as her email address, and seeing the word brought very fond memories of her that left me feeling happy and melancholy at the same time.

thanks Kickstart

[RightSide]

Kickstart, you crack me up!  Just the title of your post alone... Other than that, I'd be pissed.  You can certainly control your machine...

The staff at my center have gotten annoyed with some of my antics too.

But I've told them:
"What can you do to me?
You can't fire me.  I don't work here!'"

[Stacy Without An E]

One of the aspects of Dialysis that frustrates me is the level of quality in clinics across the nation.  There should be a certain level of quality control and personnel competence, but unfortunately, that is not always the case.

I'm fortunate I've spent the last six years at a great clinic with superb staff.  But when I was in a hospital clinic in Stockton, they could have cared less if you lived or died.  Some of the staff would laugh at you when you had cramps and were in serious pain.  Just some of the worst cretins I've ever experienced in the medical field.  Angry, foul-mouthed, and totally unsuited for the medical profession.

I was very shy and less cantankerous during those days or you can bet there would have been complaints a plenty.

[jbeany]

When I first started, I got them to angle the machine so I could see it.  They were fine with that, actually.  I had a good center.  The first time I reached out and checked my blood pressure, I thought they were going to faint, though!  None of them had ever had a patient who was both interested in what the machine was doing, and wanted to know anything about it. 

[RichardMEL]

Lordy!

I got told yesterday that one reason I was no longer allowed to set up stuff on my own machine (eg: UF, temp etc that I am perfectly able to do) is because "Someone else might see you do it and want to do it too!" (huh?) - ffs if they have no idea what they are doing I understand that - but if they learn how is that a bad thing? Never mind the contradiction with home patients that come in and do their own thing sometimes. To me it was just a lame excuse because for whatever reasons I'm now no longer allowed to set my own machine.

Well guess what I was stuck in a side room (no, not kickstart's little room!) with one other guy and basically they came to check on us whenever. I started to feel like I was about to cramp.. I couldn't see the nurse around who was supposed to look after me.. so well guess what suckers. I changed my UF goal and took myself off UF for a few minutes till my body calmed down. Well finally she appears and I told her that I did it, but before she could get angry I defended myself with the fact that she wasn't around that I could tell and I needed to do it. Well she said "OK that's fine"

go figure.

[KICKSTART]

Not only me then RM ! Do you think that they think when our kidneys failed , so did our brains ?

[RichardMEL]

I think I just rubbed someone up the wrong way. Maybe they think I'm trying to be too smart or something. Or maybe it's not really related to me but maybe someone else fooled with their machine and stuffed it up so they're taking it out on anyone who wants to work their own treatment.

meh

So my new approach will be if they're around and I want something, fine I'll ask (and bug them doing so!!!) but if they ain't around well bugger it. I'll look after myself. It's my treatment!!!

I suppose there's the odd chance that someone could get spiteful and somehow mark me as being non compliant, but I hardly see how running my own treatment is not being compliant. LOL

[cariad]

so well guess what suckers. I changed my UF goal and took myself off UF for a few minutes till my body calmed down.

I know I'm fairly new to this forum, but Richard, this is a side of you I did not realize existed, and it is  awesome

Kickstart, I hope you can force some changes around there. Good luck.