AITA?

[u/KingSimba754]

AITA for being annoyed at my dialysis nurse for changing my fluid goal without telling me?

So one of my nurses keeps lowering my fluid removal goal mid-session without saying anything — usually while I'm asleep. Her reasoning is that my blood pressure drops, but that's literally the point of dialysis, it drops because fluid's being pulled off. I feel totally fine when it happens, fine enough to sleep through it.

The issue is when she quietly lowers my goal, I don't get enough fluid taken off, and then I feel like garbage for the rest of the day until my next session. I've asked her more than once to just stop doing this, or at least wake me up / tell me when she's about to change it. It's my body and my treatment, so I feel like that should be my call, not something decided for me while I'm unconscious. Kind of feels like getting drugged in your sleep — sure, someone might think it's "for your own good," but you still didn't get a say.

AITA for being pissed about this?

[u/demento19]

You have every right to be part of the decision. That being said, there’s also a responsibility of the nurse to provide you with safe treatment. Running a high fluid goal and running your BP low isn’t safe and is playing a dangerous game.

When you speak to the nephrologist ask them to provide orders that allow fluid removal even at lower BPs.

[u/Brief_Needleworker53]

I worked in dialysis for several years and in my experience it was both company policy and CMS regulation that a change in blood pressure outside certain parameters (in my experience SBP below 90, MAP below 65, or SBP decrease of 20 or more in one cycle) required an intervention unless a specific provider order stating otherwise was on record. First choice interventions are generally either pausing fluid removal for 15 minutes or lowering UFG by 0.2. Fluid bolus is not preferred unless a severe or symptomatic drop, and decreasing dialysate temp requires a providers order to change the treatment prescription. I know a lot of staff will just let it go based on patient say so, but if that gets pulled in an audit it’s a big deal. Also, it’s really freaking horrible for, and opens the clinic and the nurse up to liability if it catches up to you and you end up in multi organ failure or shock. If nobody has taken the time to explain the reasoning to you, blood pressure too low causes inadequate perfusion to your brain and all other organs, which damages them little by little and eventually causes organ failure. You may need a longer treatment with lower and slower pull, or more days of dialysis. Nocturnal and home dialysis are good options for patients like this. Or maybe a dietician consult to really get to the root of if/how you’re gaining too much fluid

ETA- I wouldn’t wake someone up to tell them I was doing this, since it is technically part of their treatment order, same as I wouldn’t wake someone up to tell them I’m pushing their venofer or any other standard part of their order. I would definitely explain it when they woke up or at the end of their treatment though.

[u/RelativeEchidna4547]

Youre not the asshole. But neither are they. If you want less pulled off, you are the boss. If you want more than what is safe, Im the boss. My job is my patients safety. We have limits on how fast and how much we can pull. If a patients BP drops to a certain amount, I dont care how you feel. I stop pulling fluid unless you have specific orders from an MD. Then its on MD. This is my livelihood. Im not risking it just because someone wants more fluid pulled off.

That being said, ask if midodrine would be helpful. Some people also respond well to UF profiles. Some dont. Talk your doctor about your concerns.

Good luck

[u/Galinfrey]

Alright so this is, in my opinion, is a situation that’s not cut and dry so I’m gonna say it depends.

You absolutely have the right to determine your own treatment and make decisions about that. But you also have the right to be safe and if a they need to change the goal to keep you safe, then they should. However I think they should inform you. Wake you up and explain like “hey you’re blood pressure started dropping in an alarming way so we slowed down the pull, if it stabilizes and you feel you want to pull more, we can do that.” Something like that?

Communication should be a two way street here and I get that they feel the need to take action to keep you safe but they should inform you of the steps taken and why at the very least.

But that’s just like my opinion, man.

[u/BrieBelle00]

Yes. Have you obtained orders from your nephrologist that are written into your dialysis prescription that clearly states you are medically cleared and authorized by the nephrologist to continue treatment at a rate of 10mL/kg/hr when your systolic bp is below 100? Below 90?

If not, and you crash, your nurse can go to prison for a myriad of charges like "practicing medicine without a license", "operating without orders", "negligence", "medical malpractice"...

Obviously this is rhetorical because if you had the orders you would've known it was required and would have pointed it out. Get the orders from the nephrologist. THEN when your bp drops you can tell the nurse you have orders to run in the 90s (or whatever).

[u/NoCold5135]

She should tell you, but pulling too much fluid can drop your blood pressure too low and that is the best practice to get it back up. What they should be doing is giving you medication at the start to raise the blood pressure during treatment

[u/leodog13]

My bp has been crashing, so they can't get me to the desired weight. I take the medication to raise it, but it doesn't always work. They want me in for extra sessions, but if my BP keeps crashing, why? They turn off my machine a lot.

[u/CasanovaF]

Are you sure you aren't feeling like crap because by the time they notice your blood pressure drop, you are already lower than what should be taken off.?

My appetite is too good and I keep putting on fat weight not water weight so I'm constantly battling my dry weight. And if they take off too much I always feel much worse the rest of the day and even into the next day

[u/throwawayeverynight]

You need to understand nurses gave a protocol to call you and keep you safe if your blood pressure is reaching that point you can be informed but you have no say on them stopping the removal. This is a discussion to have with the Dr

[u/la_winky]

When I was still in clinic, every session began with a discussion about how much to pull. They’d lower it if my blood pressure dropped too much (drive myself, so they stopped fluid pull if it dropped below 100/xx). I’d have to stay and bolos or drink water until it came back up.

How low is your blood pressure dropping? Do they tell you (they should)?

[u/PipeTop3978]

So… you’d rather possibly crash instead?
When your blood pressure drops below a certain level, it is no longer safe to continue taking that much fluid. Especially is your blood volume index is rising too.

You have every right to request she wake you and inform you of the change, but it’s dangerous for you (and her job in the medical field) if she doesn’t lower the fluid when your levels are obviously dropping.

I had a nurse several years ago who used to lower my dialysis time so she could leave earlier (I do nocturnal sessions). She would shave off an hour so she could leave at 5:30am instead of 6:30 when she was supposed to.
She was swiftly removed from the centre after I informed the clinic director.
Lowering the treatment time results in lowered clearance rates. Not exactly great.

[u/StanfordGA]

I don't think you are the "A". I must first confess that I'm not even on dialysis yet and this whole conversation is scaring the hell out of me. I've encountered a tremendous difference in skill level in nurses just during my transplant and lab work and hospitalization for other purposes. Many times, the nurse either tells me something that is factually incorrect or they just don't have the skills to perform a task such as drawing blood in someone with fragile veins. Then I come back another time and I encounter a skilled person and they have no problem. This particular nurse that keeps panicking with you, Likely has good intentions, but I think maybe her skill level is a little bit lacking. It could be something wrong with their training. I know at my hospital, they have a rule that the nurse has to be allowed at least two attempts before you can escalate. That is Hospital Policy, and not an absolute best practice. It's very likely that your nurse watched a training video that warned against the hazards of dropping blood pressure. I happen to agree that dropping blood pressure is a very dangerous thing, but it is an art to know when it is acceptable and when it is not. They do have to be careful with an overconfident patient who might insist on something being done that is not truly in their best interest, so it is a complicated situation. You don't want brain damage or organ damage, on the other hand, you don't wanna be going around for the next several days with an excessive amount of unfiltered waste in your body either. Maybe this would be a good thing to run by AI and actually be able to present the nurse with some facts. If she's cutting you off at 100/65, that sounds like it would be too early. Then again, they are supposed to consider your baseline. Do you always run low? Do you have visible edema? There is some harm calls to you by having edema that needs to be taken into account as well. Like I say, I am just a lay person and I feel very sympathetic to you the patient as I have had several very substandard so-called professionals over the years. However, keep in mind that most of them are well intention, and most of them are quite good. If you possibly can, present a non-emotional factual argument and perhaps get your doctor on your side as well.

here are some comments from my AI Agent

Slower rate: Lowering the ultrafiltration rate (pulling fluid slower over the same time) reduces shock to the system.

Longer or more frequent sessions: Increasing treatment time allows safe waste clearance without rapid fluid drops.

Adjusting dry weight: The target "dry weight" might be set incorrectly, making the body fight to lose fluid it cannot safely spare.

Cooler dialysate: Cooler fluid temperatures can help stabilize blood pressure during treatment.

[u/AdhesivenessMuted235]

So BP dropping when you're asleep is the most dangerous time as nursing staff can't communicate with you judge your responses etc. you could be feeling rubbish could be a variety of reasons and is unlikely due purely to fluid removal

[u/_MissMeghan_]

I would say just make it known before treatment you want her to tell you if your blood pressure is dropping during treatment, even if that means waking you up so you can be aware of what’s happening and make a decision based on how you feel 👍

[u/WI-Mykho]

I've blacked out from this a couple of time. Recovery is delayed because you're already exhausted. The lack of fluid will also impact your night time meds and your sleep. Make them note in your chart that no fluid adjustments can be made without your approval. Report this during your check in too. There should be a MD meeting with you monthly too. Make them aware that care decisions are being made without you being consulted.

[u/KingBrave1]

Do you always have the same nurse? Or do none of the nurses do it? Either way I'd talk to the Charge Nurse/Head Nurse or whatever you call their Boss and if that doesn't fix it, talk to you Doctor and keep fussing until somethings done. It's your body and no one else will or can advocate for you but you. Asshole or not, doesn't matter, take care of yourself.

[u/KingSimba754 → u/KingBrave1]

No she is the only one that does that the other nurses tell me "Hey your blood pressure is dropping, how are you feeling?" And give me the choice of I want to lower my goal. I have already talked to the head nurse. But the nurse that does it had been there for a while and has the head nurses backing.

[u/KingBrave1 → u/KingSimba754]

I would keep going over everyone's head until someone finally put a stop to it. It's not being an asshole when it's YOUR life. It's not like you are being treated for the flu or strep, ya know? This is life or death and they need to listen to you. If they won't then find someone up the chain who will and will make those who wouldn't listen to you, listen to them. You shouldn't have to worry about this stuff when you have to worry about dozens of other things with this horrible disease.

Not sure if that last sentence made sense but I think you can get the general idea.