Am I crazy???

[chefmagnus]

I had been in the hospital since I blacked out at dialysis Tuesday before last. I normally have dialysis MWF on the third shift. The last one there every night that I get treatment. I end about 90 minutes after everyone else is gone. I waited 6 months to get onto MWF shift. I had to go on Tuesday cause I was too sick with the flu on Monday to go in to dialysis(Fever and throwing up) I have a viral infection between my dermal layer and muscle layer in my lower legs. It doesn't go away but I can control it unless I get another infection like the flu. Last week between the flu and the leg infection it was too much.  Then Wednesday before last the hospital said that I was too sick for dialysis so they moved it to Thursday. Then they overbooked and I got bumped to Saturday. I was doing better was supposed to come home on Sunday but got a different lower GI bug. They wouldn't let me go home with a high temp.

On Monday morn, I was still in the hospital but doing better. I asked what time my dialysis was going to be that day. I was told that since I had missed a week of my clinic appointments that I was going to go to the end of the schedule and back on TThS schedule. On this schedule I do not get to see my daughter at all. I called them up and asked them if this was true. They said yes, I can't believe that I can loose my spots to  being in the hospital. I asked them what would happen if I did make it in to the clinic that afternoon. They said that my schedule would not change. So against doctors orders I checked myself out and made it into my scheduled time. I was feverish and hallucinating the whole 3 hours. That morning the hospital had given me 160mg of Lasix. So three hours into dialysis I had to go to the bathroom. On my way down the hall I heard the nurse ask the tech if I was going to clot off so that they could get out of there an hour early. Her response was, "Probably."

I was extra caution after hearing this. I did my business and returned. She hooked me up and with out doing anything to my arm started breaking down the machine cause I had clotted off. The nurse then came over and pulled my needles and got huffy with me cause I want to see how big the clots were. She informed me that they could not do that and there wasn't time. In the past nurses have always shown me the clots on paper towels, so that I could tell my doctor that I needed more heparin. I was told that I was being crazy and overly demanding. 

Am I just being crazy cause of illness or should I be more concerned about this?

Another thing was that I came in 4.5kg over dry weight. The tech said she wanted to try and take 5 kg off. I told her that they had been giving me lots of Lasix and I would pee a good deal of the 4.5 off. I get really sick when they take more than 3.5kg off in a session. Even with ending an hour plus early I weighted out at .1kg over my dryweight. My trip to the bathroom was only 0.3kg so how far over 3.5 kg had they set the machine?

The day after the Lasix kicked in and I am now 1.5kg under my drywieght. I slept for 25 hours after my treatment. Do patients requests mean anything? Can I learn how to set up the machines myself cause they aren't listening to me? Is my dry weight correct?

I am having a hard time trusting my clinic and they do not have a good relationship with my doctor. I can't wait until his clinic is open in Aug...

Sorry about the long and winding rant....

Chef

[geoffcamp]

YOU ARE NOT CRAZY!!!!  You are in control of your healthcare PERIOD.  Fight for it. I had a similar situation as I am on a 3rd shift and usually one of the last people to finish dialyzing. Sounds like you clinic is getting lazy. In my opinion you should request to speak to the head administrator in your unit. Calmly but firmly insist your reasons for wanting 3rd shift and there did not seem to be any issues before this (unless there were) and explain how these nurses and techs are making you feel. Express your concern for their lack of commission and how dangerous you think this situation is at this point for you. Ask that the meeting in person or via phone be private and try to keep this in the hands of the administrator fixing your issue. Is there anyone else that can back up your situation?  Maybe another patient or a nurse/tech that understands your side??  I totally agree with you on the clots, I've had A LOT of clotting issues and they have always been able to show me when I asked and even when I didn't. With such a high risk of losing that access you have the right to make that request. Remember your in control. You provide their job!!  I feel for because I have been in your shoes but I did the above. I got a little backlash from the nurses and techs but it quickly went away by my insisting that only you can control your care and what makes you feel the best you can. It's nothing personal against anyone, it's just you know what is best for you and you work within the guidelines and so should they. But again IT'S NOT YOU!!!  Take the bull by the horns and demand treatment your way within the given guidelines you have had in the past because it worked for you and that my friend is all that matters. Good luck keep me posted. By the way I bring in little treats for my dialysis staff just to have a good relationship. Donuts, candy and I even occasionally give a bottle of wine. I have a great relationship with people at my clinic now and I've been doing 3rd shift for over 11 years now. Main point is be nice but firm explaining that you the patient have rights and feelings that need to be respected. If those nurses /techs do not like it they may just have to find another job. In today's economy I'm sure there is staff out there that would be more than happy to have the work and in it for the right reason..... To make you feel the best you possibly can. Regards, Geoff

[gothiclovemonkey]

holy crap, sounds like my first clinic!
They were horrid!!! I ended up going to a new clinic!
You are your own best advocate. you have rights. if you feel that they arent being met, you can contact the higher ups...
your not crazy, i would be concerned too.
My first clinic, one of the nurses used to do something to the machine that caused me to cramp like a S.O.B. so she could leave... it was bad.
there were other things that were happening there too, and the workers were really rude sometimes. I QUIT dialysis, for about 2 weeks, and ended up in the hospital, where i had dialysis, and ultimately moved to a new clinic... an hr away from my home. same dr unfortunately... i cant stand him. (ive since moved, new drs new clinic, and things are much much better!!!)
i certainly hope things improve for you as much as possible.
 

[Lexxtech18]

That is unacceptable. I've said it before and I'll say it again, no one has the right to disrespect you, especially not someone who is getting paid to take care of you! You are your own best advocate and you need to speak up to someone higher up about the situation. If something is done and there is backlash, take it to corporate. This is YOUR life; you do not choose to be there and tied to a chair for hours a day. It's not your fault and you are not crazy!! It really pisses me off that people have no empathy or compassion for people with a chronic illness. It you would think that a dialysis tech or RN would as they see firsthand what we go through. Totally asinine. Absolutely say something to someone before you really get hurt. Please.

[CebuShan]

Some nurses and techs will definitely take advantage of you if you are the least bit unsure of yourself. Do some research and firmly insist on how you want it to go. When I was in clinic, I always asked why things were being done the way they were. And I didn't give up until I got a satisfactory answer!
Hang in there!