Not allowed to adjust their machine

[needlephobic]

Went to D today and told the nurse not to take any fluids off because i still pee and if they do  i get sick. I was told by the charge nurse she can't let me leave the center if I am a kilo over my dry weight and she wasn't going to set the machine to not take any fluids off case she worked long and hard for her license and wasn't going to get fired if she did it. I told her you tell them I told you to do it if they got a prob come to me but she still wouldn't so i said ok I'll adjust the machine nope not allowed to mess with the machine unless i was home D. So she calls the doc and he ok it. She doesn't do anything without the ok of a doc  if i refuse I am noncompliant if i go with it I get sick so I am screwed on all counts.




Edited: Fixed subject line error - okarol/admin

[Riki]

that nurse has a stick up her butt...  the nurses in my centre will do what we ask, and usually, unless it's something totally outlandish, the doctor will ok it later on the chart.  He really doesn't know dick about the day in/day out procedures of dialysis, so he relies on what the nurses tell him.

[thegrammalady]

my neph solved the problem for me without my even asking. he told the nurse to do it my way because i know what i'm talking about. just let the nurse cover her but and telll her to call the doctor, that way everyone gets what they want.

[okarol]

Jenna had the same issue, she was urinating a lot and did not have fluid retention, and was actually gaining weight after beginning dialysis, because she got her appetite back. The techs would refuse to override the default machine setting, which would take off too much fluid and made her feel horrible. I had to insist that they get approval from the charge nurse, who was also reluctant. We had to insist each time, and not let them start the machine until they agreed. It was so frustrating. But it was necessary to her comfort and health!

[RichardMEL]

I find it bizarre that they would not simply note patients wishes and comply with that. If it goes wrong whose fault is it? The patient that requested it. I understand the fear of being sued or something like that, but honestly sometimes SOME nurses/unit types go a bit too far and ignore the fact that many patients know their bodies and what works and doesn't work for them, and being stubborn about it doesn't help anyone.

I challenged my dry weight yesterday as I think I've taken a bit off due to extra exercise. The nurse queried that I wanted just 0.3 extra off (I'm doing it in small steps) and had to actually go to the head nurse. Luckily the head nurse knows me well and knows that I don't make stupid requests etc and she was yeah sure do it. Still there was that questioning like why do I want to do it etc. I just said "look if I cramp or my BP goes low I know it was a bad move and it's totally my responsibility - and we can just stop the UF."

of course I did not cramp and my BP was fine.

[KICKSTART]

I had all that crap at the start , but now they know im more than capable of understanding my machine , they let me more or less set the whole session up and adjusting or stopping UF is totally left up to me    WHY are you not learning about your machine , is there some reason ?

[needlephobic]

I had all that crap at the start , but now they know im more than capable of understanding my machine , they let me more or less set the whole session up and adjusting or stopping UF is totally left up to me    WHY are you not learning about your machine , is there some reason ?

Kickstart I downloaded the owners book to my machine  can I can adjust it myself but they won't let me I have to be home D to do that 

[BigSky]

The nurse was doing her job as she is expected, cant find fault with that. 

All you need to do is have the dr, write a standing order in the matter then there should be no hassle.  Something to the effect that if you are a kilo over dry that no fluid should be pulled.

[needlephobic]

The nurse was doing her job as she is expected, cant find fault with that. 

All you need to do is have the dr, write a standing order in the matter then there should be no hassle.  Something to the effect that if you are a kilo over dry that no fluid should be pulled.

Dr doesn't listen to me all i get is that stupid look like he cares but don't he talk about what he wants to do not how i feel or is dialysis makeing me sick cause too much fluid is removed it is all him

[Hemodoc]

Jenna had the same issue, she was urinating a lot and did not have fluid retention, and was actually gaining weight after beginning dialysis, because she got her appetite back. The techs would refuse to override the default machine setting, which would take off too much fluid and made her feel horrible. I had to insist that they get approval from the charge nurse, who was also reluctant. We had to insist each time, and not let them start the machine until they agreed. It was so frustrating. But it was necessary to her comfort and health!

This is all symptomatic of the fact that dialysis facilities and staff do not take into account patient autonomy and informed consent for EACH treatment.  If I did a minor steroid injection, I first had to explain the reasons for the procedure, the alternatives to the procedure and their potential complications and then the complications of the procedure.  Then after that, I had to have the patient sign and note their understanding of what I just educated them about and then it had to be witnessed.  That is for a very minor procedure such as a soft tissue steroid injection for trochanteric  bursitis that had very little real chance of having a complication if every thing was done properly.

And here, you have a potentially life threatening procedure where the patient often knows their own body and what is needed for that session better than the nurses and they over ride completely your autonomy.  The first step in procuring proper treatments in dialysis is to regain the lost independence and lost patient autonomy.  How did we lose it in the first place since ALL other patients in America still have it for even minor treatments!!  It is probably going to take some lawsuits to get this back into balance.  I hate saying that as a physician, but what other choice do we have, they are NOT adhering to our medical legal rights of authorizing each and every treatment.

[KICKSTART]

So you know how to adjust what fluid you are taking off ?  ARE YOU SURE?  Will they throw you off the unit if you do adjust it yourself? If it was me (as long as you are 100% sure what you are doing) i would drop it myself. I just want you to be 100% sure you know what you are doing , for your sake. 

[doing.my.best]

There seems to be a thin line between denying the patient his autonomy and taking responsibility for his treatment as a doctor, especially when the ideas about optimal treatment differ.

I think the nurse should not change the setting on her own, but at the same time, the doctor has to be available for such decision making at any time. To discuss the problem together, so that it's a joined decision at the end and everyone is happy.

Also, if you pee before D, and you still need to be left with 1 kg above your dry weight, your dry weight is not determined correctly... What is you BP before and after D if you reach your dry weight? Any cramps?

[brandi1leigh]

When i hear these stories, I feel so lucky to be at the center I'm at. The nurses and techs at my center always listen to my input. If I say, "Hey I think I might have gained a little weight." We adjust the weight together. They always ask me how much I think should be taken off. We recently had a nurse leave, so we've had substitute nurses. A couple of them have questioned me when I asked for something, but never in a suspicious way. They just want to make sure I know what I'm asking for. I still pee and i gain and lose weight frequently, so my dry weight is a bit like a moving target.

[needlephobic]

The only way I can explain it is I pee before going to D and what they want to take off during D is what I can pee after D and it comes out even on my dry weight so there is no need to remove fluids right now  later down the road maybe. Yes I have read the owner book to the machine I use and I could set it myself no prob but they won't let me. Found out today I have Dr orders not to remove fluids from me so I am happy about that.   

[KICKSTART]

   now see how it goes !

[RichardMEL]

Yes, I know how to change my UF target, or to go on a profile, or take a UF break or whatever.

The issue is, and I had a fit a fight with them about it earlier in the year (some may remember!) but in the end I do conceede their point and we are back to a happy medium. Basically their argument was that since I am under their care they need to know what changes are being made and WHY (which is reasonable, of course) not only to document it, but also if something is going on to warrant the change (low BP, feeling a cramp coming on, whatever) then they want to know and that if something happens they're aware of what's going on. I had tried to create a compromise that rather than waiting for a nurse to appear I would change the setting, then when they came to do their obs or whatever i'd explain that I took a UF break for 10, or changed my target down, or whatever and why. Now most of the nurses were perfectly OK with that, but some got upset.

I think the bit that annoyed me the most was that they then went on to say "If you were home trained you could do ALL the setup you want and make whatever changes you want" (we have some home trained patients who are with us for various reasons and they can make their own changes). OK I haven't done home training, but everyone there knows that I know what to press (and what not to!) to make appropriate changes. Further they know I wouldn't be making changes to play around with my machine or anything. So it seemed like a bit of a double standard that some could make changes, and others couldn't. Of course they offered to give me home training(they want to get rid of me!!! 4 and  half years and we're sick of living with eachother!!  ) but it's just not an option for me, and we all know this.

So I just had to pretty much suck it up and call when I want a change made. At least they have moved a bit too and almost always accept any change I want to make as reasonable (of course it is! ) and not argue the point with me about it so I guess there's beet a bit of give and take on both sides.

I'm mostly happy, though I do think that the trust is a bit lacking, but then again I can see the point specially if I *did* do something wrong, and hadn't been trained, they could get in trouble as it's their responsibility, and I wouldn't want that so... in the end I got over it and got on with life

[Bruno]

But isn't that a bit unfair to judge centre care vs. home care (self care is a better description) in that manner?
Reading Needle's message I understand him to say he wants to reserve the right to decide whether fluid will be taken off at any session and I can understand nurses and doctors having doubts about that. He has after all agreed that they have the responsibility for his care and in doing so has agreed that they should have the responsibilty of needling him, setting up the machine, setting the goals for the session taking into account previous sessions and cleaning and stripping the machine.
In self help dialysis (or home dialysis) the position is reversed...you put the needles in yourself, you receive training that lets you set up the machine, learn how to set your goals, clean and strip your machine because you have agreed to assume responsibilty for your care.
I might also add that home haemo dialysis is in fact a better form of care because you know best what is best for you (that's where Needle is right) and have the means to ensure that's what happens. 

[Hemodoc]

Dear Bruno, the issue of informed consent for EACH procedure I did on any patient is a time honored fact of law, except of course with dialysis patients.  Yes, we do consent to dialysis under the care of the provider, but when did that also entail giving up our legal right to autonomous direction of our medical care that is afforded to all other patient groups?  The issue of one size fits all philosophy of dialysis is quite dangerous and the issue boils down to day to day variations in the patient's condition.

Further, self care should be a right to the dialysis patient as it is to many other patient groups upon request of a competent patient.  Even as a physician with multitudes of training and experience beyond the "techs" in charge of my dialysis sessions, I had to fight long and hard to be granted the right to self care in my old dialysis unit.  In addition, it caused quite a bit of consternation among many of the techs miffed that I would even ask for such a thing.

It is time for self care to become a primary option in dialysis centers which has been shown to not only improve outcomes but reduce costs when applied to a large percentage of the patients in the center.  If a competent patient requests self cannulation and to run their own machine, then it should be part of the options of dialysis that the center has the training in place to allow the patient to do so under the supervision of course by staff.

I had an episode with one tech at a unit back east where I could see that the blood level was low in one of the air chambers.  I could easily have carefully done it myself since I was already on self care in my home unit, but she came over and over filled the chamber resulting in possible blood to blood contamination with the pressure pod and the machine since it was such a large overfill.  I immediately demanded that this tech never touch my machine again and place me at risk of this potential complication.  I have always been stubborn, independent and obstinate but never more so than since becoming a dialysis patient and seeing the careless disregard many takes have toward patients in many cases starting with the lack of hand washing.

In many ways, dialyzing at home is my only option since I too become tired of always being on guard and looking at what they are always doing correctly or incorrectly.  I had one poor tech that always tried hard one day come over to me since my regular tech was out for the day with shaking hands from his nervousness.  He is Filipino as is my wife and she simply told him, all my husband wants everyone to do is wash your hands before you touch him, that is all he is askingfor.  Poor man still was nervous around me, but many were not and were continuously casual in proper infection control issues.

With what we have likewise known since 1965 about frequent hemodialysis sessions and its benefits, the only place where you can improve your survival with optimal dialysis is at home and then such things as setting the ultrafiltration rate is less dramatic since dialysis is more frequent and also under your complete control.  I quit banging my head against the dialysis industry about these many different issues and simply went home to the freedom of self control.  It is probably the only way in which you can regain your freedom of medical determination for each dialysis session.

[needlephobic]

well went to D today. Had a new tech and she asked me how much i wanted to take off I said none there is a doctor's order not to remove fluids she couldn't find it on the computer so the tech i like and knows me came over and found the order right off the bat. I did my run no feeling like I am going to  I felt real good a little drained but good. went home and peed and check my weight came out even. I am so glad they listen to me this time. I am tired of fighting them all the time and they just look at me like I am stupid.I have learned more here then at my center and from my neph. That is not right. any way  I feel good for a change   

[Hemodoc]

well went to D today. Had a new tech and she asked me how much i wanted to take off I said none there is a doctor's order not to remove fluids she couldn't find it on the computer so the tech i like and knows me came over and found the order right off the bat. I did my run no feeling like I am going to  I felt real good a little drained but good. went home and peed and check my weight came out even. I am so glad they listen to me this time. I am tired of fighting them all the time and they just look at me like I am stupid.I have learned more here then at my center and from my neph. That is not right. any way  I feel good for a change 

Great news!!  I am fortunate to likewise have enough residual renal function to not need any ultrafiltration as well.  I always tried to hit the same weight as I came in at.  In addition, since I didn't have any fluid restrictions, I likewise gave a complete rinseback of my entire blood lines until they are completely clear, not just pink which I attribute to one of the reasons I don't take EPO and have not had any IV iron for over two years.  I am slowly drifting down, but I am seeing if I can keep my Hb over 11.0 with oral iron, small dose vit C and my B complex vitamins as well as Vitamin D, all of which have been shown in studies to improve Hb levels.  To accomodate the rinseback of about 700 ccs of saline, I allow 300-500 Ultrafiltration so that I end at the same weight I started.

One size does not fill all patients and some on dialysis still have residual renal function meaning that there are salt restrictions but no fluid restrictions.  Not sure why no one seems to understand that.  My nephrologist still asks me what my dry weight is, I tell him, whatever I weight today.

[sullidog]

I am also one that gets no fluid pulled, as for not listening I had the same issue and until I threatened to leave the center they started listening to me.
Troy

[needlephobic]

I am also one that gets no fluid pulled, as for not listening I had the same issue and until I threatened to leave the center they started listening to me.
Troy

Not with me when i started to leave all I got in a rude voice was Have a Nice Day.  My nephrologist still asks me what my dry weight is, I tell him, whatever I weight today.
[/quote]
That is the same way with me if i can pee what they are going to take off it comes out even every time. I talked to my social worker about having a treatment team meeting and found out i can get one but my neph will likely not come so what the f----- he is supposed to be treating me  and he will not come to the meeting  give me a break. I need a new neph bad .

[Hemodoc]

Hang in there and work with them on these issues.  Finding a caring nephrologist and a team that really looks out for your best interests was a long time coming for me, but once I found a great center and a wonderful nephrologist, I really don't want to ever give them up if I can help it.  I don't like the hour plus drive once a month, but it is only once a month.  For some reason, dialysis is just a different animal than the rest of medicine in general from my experience as a patient and as a doctor.

Hang in there and know you are not the only one to have gone through these same issues.  Sad, but true.

God bless,

Peter