Know your settings

[iketchum]

I just had a typo in my dr. orders. They dropped my dryweight 4 kilo. If I had not been watching the nurse set up the machine it would have been very bad. We will be getting a card with our settings and dry weight on it to keep with us. I know that I will need to keep it current to make it work. Just thought people should be aware of what their treatment is and be forceful when something isnt right.

[RightSide]

I ask the techs to please turn the dialysis machine so that I can keep my eye on the panel. 

[monrein]

I just had a typo in my dr. orders. They dropped my dryweight 4 kilo. If I had not been watching the nurse set up the machine it would have been very bad. We will be getting a card with our settings and dry weight on it to keep with us. I know that I will need to keep it current to make it work. Just thought people should be aware of what their treatment is and be forceful when something isnt right.

This is an excellent point.  We should ALL insist on having the mechanics and details of the machine explained to us, that way we add an extra layer of protection from error and we demystify something that isn't that difficult for the average person to understand.

[Stacy Without An E]

I once had a tech set the machine for five hours.  I'm pretty aware of when my treatment is supposed to be finished, so when the three hours were over I started to prepare for the needles to be taken out.

When I asked, the tech said I had two hours left and should just be patient.

After I politely explained the math didn't quite work out, she laughed about it.

That's right.  I could have been over dialyzed, cramped and crashed, but its okay because its hilarious.

These are the types of personnel at Dialysis clinics that need to be avoided all costs.  Because it could cost you your life.

[KICKSTART]

It seems i have learnt far to much about my settings (more than some nurses) and for my troubles i got told  ..DO NOT TOUCH YOUR MACHINE ! ( i did do a post about it a while ago)

[RichardMEL]

yep same as with KS I got told off. Apparently it was OK for me to manage my treatment before, but now they don't want anyone touching the machine unless we've been home trained. Yeah, well I can't do home training because I'm not viable for home dialysis. Yet all the nurses bloody well KNOW that I know what I'm doing and I've never screwed up the machine settings. So they came to me and said "What if we teach you to prep the lines and stuff, then you can do all that for yourself and we just do the needles" - that way they would let me do stuff like change my own pump speed or turn the UF off if I wanted for a break(this is what I got in trouble for). Well I don't feel confident about doing the lines right because of my eyesight and co-ordination so I said no thanks.

Well guess what happened yesterday? Someone screwed up the lines and I had a whole bag of saline emptied into me so I came off 600ml over. thank YOU so much!!! I just had to laugh at the irony of them telling me they're the experts and I'm not trained so I shouldn't touch anything yet it was still screwed up.

Maybe I *should* do that training.

[monrein]

Hey Rich...this might be really stupid but could you negotiate to do the training with the proviso that you'll do everything from the time the needles are in, until the needles have to come out.  That way you get what you need and they get one less patient to have to attend to fulltime...win, win.   I bet you could set up easily too once you got the hang of it... but why would you want to add that time to your run? 

[RichardMEL]

Hey Rich...this might be really stupid but could you negotiate to do the training with the proviso that you'll do everything from the time the needles are in, until the needles have to come out.  That way you get what you need and they get one less patient to have to attend to fulltime...win, win.   I bet you could set up easily too once you got the hang of it... but why would you want to add that time to your run?

Thanks. I think with them it's really a case or all or nothing. I appreciate that they thought about ways to keep me and them happy - because they did stress they wanted me to be happy with my role in treatments. I just explained to them(after I calmed down) that what annoyed me was that I had previously been allowed, and even encouraged at times, to do stuff like manage alarms and my pump speed and stuff like that then almost out of nowhere I was jumped on for doing what I had always done and quite rudely informed I was not to touch anything(it is true that the specific nurse who did that did apologise to me the next time she saw me) but I still felt like I had been treated like a naughty 4 year old and had tons of nurses coming to me over the next few sessions telling me the same thing like somehow I wasn't listening the first time or something (that got up my nose a bit I must say). Even the other day a nurse came to me said "Are you behaving today?" (geez!).

I'm pretty much over it now. I just leave it to them now if something screws up.. well not my problem.

I don't think they'd go for the "between needle time" stuff because they claim(and it makes sense) that they need to know what's going on so if I do crash or something they have a history of what happened. I mean previously I'd ALWAYS informed them if I felt like I was about to crash, or felt that I needed an extra BP check or something like that, and I'd always informed the nurse that was assigned to me of any changes I made to the pump speed, or UF or whatever - but that wasn't good enough for them. I think they're just worried about liability. I bet something happened with some other patient and they are trying to cover their backsides now.

I think it just could have been handled better if they cam and sat with me and discussed it rationally rather than jumping down my throat and treating me like a child who did something wrong even though I was just doing what I'd always been able to do in the past.

i discussed it with one of the bosses and she agreed that it had been confusing(for me) in the past that some had allowed me more leeway in managing my treatment than others and that from that point of view I hadn't been doing anything wrong per se but it just didn't fit the new regime.

[KICKSTART]

RM , I could have written your post word for word ! This is exactly what i have come up against , one week its fine to be involved , the next week ..hands off ! What scares me most is 2 incidents last week  1) I start to feel that crash feeling come on and my BVM went down to 83 ! The nurse came over and said ..oh no its 89 , i then had to point out to her that was the SETTING she was looking at ,NOT my actual reading !!! She still had to get another nurse over cause she didnt believe me ! 2) Again feeling unwell , thought ok , i wont stop my UF , i'll do as they say and call a nurse , he came over i explained how i felt and he asked me ..what i wanted to do ..so i said i dont know (after all i had been told not to interfere) i said ..what do you suggest and he said ...i dont know !!! and we have to trust these people and leave it to them ..!

[RichardMEL]

Well the other thing that I find rather bizarre is that they seem to trust me with most things - for example they ask if I'm due aranesp or iron or whatever because I know the schedule - some then go on to check the chart(which they should do) and others don't ("I trust you know") - well what if I get it wrong? Or if something comes up and they ask me what I want and I say "do X" then they do it. So the difference between me pressing the buttons to do whatever and them doing it is....? Well if they're worried about liability fine but the thing is *I* know I am totally responsible and if something happened as a result of a change *I* made there's no way I'd hold it against them - I'm not that sort of person. Oh well. Like I said I'm over it now.