I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: raina on December 29, 2006, 01:36:17 AM
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I've been on dialysis for 2.5 years. I've never skipped a treatment or cut a treatment short for any reason other than a sincere concern for my safety.
Sometimes when I'm on dialysis I suddenly feel the symptoms of low blood pressure. I usually wake up to it. My hair feels like its on fire. The room is spinning. I feel like I'm drunk all of a sudden. Why they don't have call buttons, I don't know, but I manage to get a tech's attention. Seconds seem like hours when I'm this sick and it really CHEESES MY NOODLE when they tell me they have to get the nurses permission to give me salene or stop pulling fluids. HELLO? I'M DYING OF LOW BLOOD PRESSURE HERE!!!
Last week I wanted to get off the machine 20 minutes early because I felt really sick. I couldn't stop throwing up/dry heaving, I was shaking violently, and felt really hot and miserable. The nurse kept telling me that I was fine and blood pressure of 90/30 was not a good enough reason to cut my treatment short.
Ahem.. excuse me whilst I rant.
I DON'T NEED A REASON TO GET OFF THE MACHINE EARLY. I DON'T NEED THE NURSES PERMISSION. I SHOULDN'T HAVE TO ARGUE WITH THAT WOMAN EVERY TIME I NEED THE FLUID REMOVAL TURNED OFF FOR A FEW MINUTES SO I CAN ADJUST TO WHAT'S ALREADY GONE. AS A HUMAN BEING, AND ALSO LEGALLY, I HAVE A RIGHT TO REFUSE TREATMENT AT ANY TIME.
In addition, I'm tired the nurse complaining about my fluid intake. I'm try to keep it under 3 kilos, but when its 3.2 I don't need a nagging. "I thought you wanted to keep it under 3 kilos, for your heart.. blah.
Finally, I'm tired of the nurse butting into my personal life. Ok, so my boyfriend drops me off and picks me up every treatment for a year. We get in a squabble and decide to take some time off so I arrive on the bus one day. No, I don't want to talk about it. No, I don't need to talk to a social worker. No, don't ask me about it again. I told that lady I needed some space from my boyfriend and didn't want to talk about it. She kept asking me, is he cheating on you? Hitting you? Why he gone then, don't you love him? Did I mention 20x already that I don't want to talk about it? Especially not while you're putting those needles in my arm!!
A week later my boyfriend is back to dropping me off and picking me up, and guess what.. he doesn't want to talk about it either! Now that we are getting back together, are we goign to ever get married? Gee.. we hadn't thought of that.. what a great idea! This is all none of her buisness! We're just now getting back together and dealing with her questions is not helping.
I'm sure she's mostly well intentioned, but I think she treats me like a child because at 27 I'm her youngest patient, the youngest on this shift by over 30 years.
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You know your rights and you are correct. If you can learn how to work the machine and just make your own adjustments instead of waiting for a nurse.
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Only you know how you feel so you must take charge. just my :twocents;
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Wow I feel for you! I have a nurse who treats me like a kid because I am 33 and the nurse keeps thinking I am only 23 because I look young and talk softly. Everyone else is over 50. But you are right about how you feel. I guess all dialysis units are different and I only know mine and when I say I am feeling dizzy or cramping they always shut off my UF for a few min (this past Wed they had to take me off 8 min early .. I usually don't come off early but having 4.8kg taken off I guess was too much for my heart). Only you know what is best for you and as most will say here, being a dialysis patient means fighting for your own needs. At least you found the right place to vent! Is there anyone at your unit you can talk to about them not listening to your needs? They are important and no one knows you better than yourself. Is it just that one nurse or is it a rule at that unit that they can't just give you salene or stop pulling fluids?
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Maybe you need to have a heart-to-heart with this nurse. Or if that doesn't work, a chat with the center director? You could always start yelling. Nobody wants a scene. "I ALREADY TOLD YOU I DON'T WANT TO TALK ABOUT MY PERSONAL LIFE. STOP HARASSING ME!" or "I AM FEELING ILL, I NEED TO TAKE A BREAK, I KNOW MY RIGHTS!"
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I think you may need to cause a scene just once. Then they will stop and think before starting in on you. I burst into tears one day after a really stressful day at work when a nurse was just teasing me. HE felt bad and I felt bad, but after that they really checked with me first, then went from there depending on my mood.
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>:( Maybe I need to go with you next time >:( We'll get it straightened right out. ;)
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I could join you all with my big stick!
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I could join you all with my big stick!
We will get em Kit.. :rofl;
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I think we need to put a poster up of our pictures with " Have you seen these dialysis patients? Is you have, run!"
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Hi Raina, Welcome to Ihatedialysis.com. This is an awesome first post and a very good rant ;) Can you please go to the introduce yourself section and tell us all a little more about YOU. You have found the right place and your gonna fit right in ;) Lookin' forward to hearing more from you... :2thumbsup;
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She sounds like an annoying cow, very nosey. I would either be looking into home dialysis, or if that isnt possible see if you can learn how to give yourself saline and turn on/off or adjust the UF accordingly. It is very very easy to do and wouldnt take them long to teach it to you.
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I have the same argument everytime I show up I try to tell them my dry weight should be changed because I gained some weight from quitting smoking but they wont change it so I wind up getting serious cramps I am ready to kill someone if they won't listen to me. SHIT WHAT DO YOU HAVE TO DO TO GET THESE NURSES TO PAY ATTENTION
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Any medical treatment given or continued without the patient's expressed agreement is in law an assault, just as much punishable as a criminal act as if the person imposing the treatment on you were punching you in the nose. Doctors, nurses, and most of all, patients, seem to have no idea that this is the law throughout the common law world. I have even heard some patients in a hospital say they did not think they had the legal right to leave the hospital without the doctor's permission. But of course they do: keeping any patient, no matter how sick, in the hospital against his will is the crime of unlawful arrest and punishable by a prison term! You don't lose your rights or cease to be a human being just because you are a hospital patient!
Unfortunately, healthy people tend to view sick people with contempt, as if we were all children with none of the normal social barriers against intrusion from the outside world. If you nurse or social worker ever bothers you about your personal life again, just turn around and ask her the same intimately personal questions about her own life. That should remind her that you are both equally people.
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Unfortunately, healthy people tend to view sick people with contempt ...
How did you come up with this theory? Is it really "us" against "them?"
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Gotta love the "I am G-d" charge nurse. Here's my 2 cents for what it's worth - don't even engage with the charge nurse about your personal life. If there is an issue with your treatment - discuss it with the doctor and ask the doctor to expressly give direction to the nurses about your agreed treatment. If the nurse pushes too far I would have no issue with telling her that she is crossing a boundary and that you would prefer not to discuss your personal life with her. As well, you better than anyone knows how your body reacts and you always have the final say in your own treatment. Maybe the nurse needs to be reminded of that.
If you have no success, file a formal complaint - ask them to make it into an incident report. If you have the option of another nurse for your care, request it. There are a couple of nurses in my unit who I simply don't trust - I've made a point of telling the charge nurse that I would prefer they not be assigned to me. Usually, hospitals are pretty accomodating.
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Unfortunately, healthy people tend to view sick people with contempt, as if we were all children with none of the normal social barriers against intrusion from the outside world.
??? ??? I have never seen contempt.
If anything most seem to be overly compassionate to the point many do what they do because they truly thinks they know whats best for those that are sick.
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Tell that nurse to mind her own stinking business and if she doesn't put in a report to her supervisor. You don't have to put up with that crap. As for getting off the machine early my understanding is that dialysis is a treatment of choice. A lot of centers have you sign a paper if you insist on being taken off early. You're the one who is going to suffer if you don't hsave adequate dialysis not them. If the centers are like the one hubby was at everybody is in one room very close together-no privacy at all. Who wants everyone else hearing their problems??
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Hello, Miss Manners here (not really, but I am a genuine "Southern lady" when I need to be, and that's the same thing).
Next time the RN (in this case, "Rude Nurse") asks you a personal question, just look at her with a perfectly blank face (and glaring eyes >:( ), and say, "I BEG your pardon!", with a hefty emphasis on "BEG". That's Southern for "go to Hell". If she persists, say "Now, WHY would you ask me THAT?" If she comes up with an excuse (she's just trying to help, just interested, whatever), just reply, "Oh." but don't answer the question. She'll be left hanging, and with luck, she'll feel awkward enough to avoid getting into that situation again. If she's really dense, you'll have to do this little verbal dance a couple of times until she gets it, but she WILL get it! ;)
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Hello, Miss Manners here (not really, but I am a genuine "Southern lady" when I need to be, and that's the same thing).
Next time the RN (in this case, "Rude Nurse") asks you a personal question, just look at her with a perfectly blank face (and glaring eyes >:( ), and say, "I BEG your pardon!", with a hefty emphasis on "BEG". That's Southern for "go to Hell". If she persists, say "Now, WHY would you ask me THAT?" If she comes up with an excuse (she's just trying to help, just interested, whatever), just reply, "Oh." but don't answer the question. She'll be left hanging, and with luck, she'll feel awkward enough to avoid getting into that situation again. If she's really dense, you'll have to do this little verbal dance a couple of times until she gets it, but she WILL get it! ;)
Okay, nextnoel, I have to comment on the "Southern lady" thing. One of my very good friends is from Alabama. She is just a wonderful person, and she, too, is a Southern lady. She told me the other day "You can say anything you want about a person, but at the end you need to say 'bless their heart' because that makes it sound like it wasn't insulting. For instance, say that you look at a lady and you say 'That dress is so ugly, bless her heart'. See? Doesn't that sound better? We do that all the time in the South."
I thought it was pretty funny, but now I find I do it all the time. I was at work the other day and I said "That marketing person must be an idiot, bless her heart." And it really did feel better to me than just saying she was an idiot, even though she is!
Do you do that, too? I find it's very effective.
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Yup, I do the "bless her heart" bit on occasion, but I've been away from the South for many years, and that habit has faded a bit. And of course, there's a wide world of inflections available in just how you say the words - I've found that a slightly limp smile with perhaps a slight tip of the head works best to impart the sarcastic aspect of that phrase.
Aren't I helpful? (bless my heart . . . .) ::)
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Hello, Miss Manners here (not really, but I am a genuine "Southern lady" when I need to be, and that's the same thing).
Next time the RN (in this case, "Rude Nurse") asks you a personal question, just look at her with a perfectly blank face (and glaring eyes >:( ), and say, "I BEG your pardon!", with a hefty emphasis on "BEG". That's Southern for "go to Hell". If she persists, say "Now, WHY would you ask me THAT?" If she comes up with an excuse (she's just trying to help, just interested, whatever), just reply, "Oh." but don't answer the question. She'll be left hanging, and with luck, she'll feel awkward enough to avoid getting into that situation again. If she's really dense, you'll have to do this little verbal dance a couple of times until she gets it, but she WILL get it! ;)
Excellent reply!
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Gotta love them "Southern Belles" and yes, "Bless their hearts" (in a good way) :2thumbsup;
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Tell that nurse to mind her own stinking business and if she doesn't put in a report to her supervisor. You don't have to put up with that crap. As for getting off the machine early my understanding is that dialysis is a treatment of choice. A lot of centers have you sign a paper if you insist on being taken off early.
I had a problem a few weeks ago and the nurse took me off the machine 5 minutes early. Okay. A few days ago I asked to be taken off 5 minutes early because I really really had to use the bathroom. The nurse pulled out the paperwork and I said to her you have to be kidding me. :banghead; It's all fine when you decode to pull me off but when I do it I have to sign the papers for 5 minutes early?? I didn't sign anything and she put the paper away.
Donna
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I believe you do not have to sign anything if you are less than fifteen minutes away from your time to get off of the machine.
Foot stomping and nagging seems to work!
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So, Raina, have you had anymore run-ins with her? How's the Southern Belle advice working?
I do the "bless her heart" thing all the time, and I'm not even southern.
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So, Raina, have you had anymore run-ins with her? How's the Southern Belle advice working?
I do the "bless her heart" thing all the time, and I'm not even southern.
Thats because you are so eloquent in your interaction with others.
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Hi, Raina,
sorry to hear about this! The nurse is definitely way out of line to be asking you personal questions that are clearly not welcome (if she can't perceive that... well, then talk to the center director and/or social worker and ask them to enlighten her).
You are also correct about your patients' rights, which include taking you off the machine when you ask for it. The nurse can, and probably will, present you with an AMA form; you don't have to sign it, but she will then chart that you refused to sign the form and that she explained the risks of stopping treatment early (it's just a formality anyway and done for liability reasons). Be aware, however, that too many AMA forms - signed or unsigned (with the note: "refused to sign") - can be held against you if you want to get a transplant; it is considered noncompliance.
As for giving you saline, in some states techs are not allowed to do so; however, they should certainly be able to put our feet up, reduce UF to minimum or stop UF altogether while they get a nurse to assess you - and give the saline! However, don't expect them to allow you to touch the machine yourself; this is usally prohibited for safety reasons (an exception may be a center that teaches home dialysis, or PD patients using the cycler). The machine alarms are intended to get the staff's attention (so don't mute them!). Giving yourself saline is a definite no-no (probably couldn't even be done) as it is very dangerous and can lead, among other things, to an air embolism.
Sorry you're having such trouble, I hope it will get better soon.
Best wishes,
DeLana
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Wow, your nurse would not like me... I would definately give her my :twocents; .. heh.
To comment on the AMA papers, your only supposed to have to sign those if your getting off the machine more than 15 mins early. They shouldn't need a reason, all you need to say is I want off now, thank you. :lol; HOWEVER, like mentioned earlier... don't do it too often if your wanting a transplant.... they will take it as not complying.
Let us know how the nurse thing is going!
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Wow, your nurse would not like me... I would definately give her my :twocents; .. heh.
To comment on the AMA papers, your only supposed to have to sign those if your getting off the machine more than 15 mins early. They shouldn't need a reason, all you need to say is I want off now, thank you. :lol; HOWEVER, like mentioned earlier... don't do it too often if your wanting a transplant.... they will take it as not complying.
Let us know how the nurse thing is going!
That depends. In my clinic an AMA form had to be signed if the patient wanted to get off early, even a minute early. If, however, it was at the nurse's discretion (for medical reasons, such as low blood pressure) then this would of course not be necessary. If at all possible, however, we were not allowed to take a pt off early (some sorry colleagues would have abused that for their convenience - so they could go home early! :-[)
DeLana
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I have the same argument everytime I show up I try to tell them my dry weight should be changed because I gained some weight from quitting smoking but they wont change it so I wind up getting serious cramps I am ready to kill someone if they won't listen to me. SHIT WHAT DO YOU HAVE TO DO TO GET THESE NURSES TO PAY ATTENTION
I'm beginning to sound like a broken record, but, the dialysis nurses don't set dry weight, nor make any decisions about your treatment. The especially don't get to decide how much fluid to take off. Everything is up to you and your doctor. If your dry weight needs to be changed your doc has to do it. Have a detailed discussion with your doc.
My policy is this is my life you're messing with and when it comes to that WE DO IT MY WAY, OR YOU DON'T DO IT AT ALL.
yes, i am a bitch. live with it :)
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Well said gramms! At my unit, they never decided what my dry weight was, nor did they decide how much fluid they took off. I would walk in, weigh myself, write it down, and then hand it to the tech. She wrote it on my chart, I then told her how much fluid I wanted off, she put it in the machine, and were on our way.
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Welcome to the bitch group on IHD.com. Here I saved you a chair right up front with me and my big stick!
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Welcome to the bitch group on IHD.com. Here I saved you a chair right up front with me and my big stick!
Skooch over ladies, another bitch is in the hizzouse ;) ;) (said with pride mind you) :P
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i never, never, never told anyone i was a nice lady. it's all a figment of your imagination.
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This sounds like my home clinic. I've had a few exchanges with the techs, nurses, and even the director. When they step on your feet, step up and let them know, in no uncertain terms. I've found that we get along much better afterward. The charge nurse was the worst one. I've even gotten to tolerate her and she seems to tolerate me. LOL! It doesn't have to be that way. I frequently go to another clinic for extra treatments, and I've never had a problem. I'm like you, I don't need a mother. I'll be 55 years old next month, and they try to make me feel that way at times. I have fluid problems, and often need extra treatments. Everytime we get a new tech, I wind up having an exchange with them. They start with a sarcastic "you know what causes this don't you" or a "I told you so". I tell them that "Of course, I know what causes my fluid overload, I've be doing this much longer than you've been a dialysis tech." They are obligated to inform, but not to chastise. If they can tell me something to try, that I haven't tried, I would appreciate the input. My first exchange was with the clinic director. She directs two clinics, and was at my home clinic on this day. I don't even remember what it was about, but I remember getting her attention. I was beginning to hate going, due to all the smart aleck crap. It is an open area, as I assume most are, and she was across the room. I fairly loudly told her "You know, I HAVE to do dialysis, but I don't have to put up with a lot of smartass crap" The room fell silent for a little while. Later, she apologized. We've been friends since. We laugh, kid, and cut up, and the atmosphere is much better. My advice is to be assertive, and if that doesn't work, you may have to be a little aggressive.
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Aye Raina. Hang in there. This nurse has a lousy attitude and ought to have her plug pulled. Although she may be well intentioned, she isn't doing you any favors by being overly motherly. You don't need a mother there, you need a competent and knowledgeable nurse! I've had to cut my dialysis treatments short for another reason. I suffer from extremely severe intractable pain that is mediated by narcotics. Sometimes the narcotics work better than others, and when they don't work well, I can't sit. So, I have to cut the session short.
At first everybody was aghast, but gradually they understood that I can't sit there in severe pain. I am firm and assertive, but always maintain a gentlemanly attitude. I don't argue - I assert! I encourage you to do the same. Regarding stopping treatment early, you have every right to do this. Nobody can tell you that you can't stop early. I encourage you to stand by your guns and demand satisfaction. At the end of the day, it is you who are paying their salary -- not the other way around.
Thank you again for your post, good luck, and best regards.
Jim :2thumbsup; :clap;
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i never, never, never told anyone i was a nice lady. it's all a figment of your imagination.
Just a note of correction. If you "never never" told anyone, then you must be telling everyone constantly. This is because of the intractable rule that two negatives make a positive. Thus, never never = always. (Gads I must be toxic!!!)
SierraJim
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Yep, two negatives make a positive in a sentence. However never, never is not how a double negative works. Oh forget the grammar lesson!