I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Nocturnal => Topic started by: keefbeer on May 06, 2009, 11:27:15 AM
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Do you fellow nocturnal patients feel short changed from the support services offered to other people? Having been on the night shift for 12 months I have never seen a ward sister ( unit manager) or any other specialist nurses, dietitian's (not a bad thing), social workers or access coordinators and we have only 1 nurse whose first language is English.
I have just lost my fourth fistula in 20 months, it was in bad shape from the beginning but it received no attention from specialists as they are all work 9-5 Mon-Fri nor would they rotate me onto an odd day shift so I could be seen.
It seems to me that we are definitely the poor relations, we have the lowest staffing levels, the highest number of bank staff ( casual/ non contract nurses) and the patients the day staff do not want. We have two alcoholics one of who should be tazered to calm him down and of course the mystery patient who comes in accompanied by a couple of prison guards.
Am I unlucky or does this situation ring a bell with you?
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I still see my dietition once a month and the stupid social worker once every other month which is once too much. He is so worthless. Doc is supposed to come around once a month which is not enough if you are having problems.
The level of care just depends on who they are. I have a nurse and tech who are the best and then I have 2 that if there were 6 of them would be no better.
I'm sure the good ones want days and we usually get what is left over.
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When I was in clinic, I felt that way too. When I was diagnosed with kidney failure and put on dialysis, I had so many questions about this strange new world I was suddenly thrown into. It was over a month before I finally saw the nutritionist or social worker. They only do their rounds 1/month, and I happened to start right after their round. By that time, I didn't even want to talk to them anymore, I had struggled enough and found most of the answers by myself. It sure would have been nice to have seen them in the beginning. After a month - thanks, but no thanks. I asked the nurse several questions, but I ended up giving her more info than she could give me.
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When Jenna was in-center she was on days, and occasionally a random visit was made - but she usually slept through them and it was pretty pointless. I imagine at night it could be less staff available, and hopefully quiet and restful.
If it were me I would make an appointment to see the nephrologist or the vascular surgeon as problems come up, rather than relying on the random visits. In other words, don't wait for them to come to you, don't expect ongoing care. If you get copies of your labs (we had them faxed to us every month) and go get checked out as needed, even if it means seeing a nephrologist not associated with your unit, you may get better care. There's no law that says you have to see their staff. That's my non-medical advice, for what's it's worth.
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I have found, "out of sight, out of mind" where nephrologists are concerned. One of my nephie's had a baby and was gone for 6 months, and her partner only occasionally came by to see her patients. Now that I'm on nocturnal, my neph has totally forgotten about me. Not completely his fault, because he is not usually affiliated with the clinic where I'm doing in-center nocturnal. But sheesh, I'm the kind of person that would follow up on a patient, regardless of wherever they may be, or what modality they were using.
I think, sometimes, that nephies are kinda grateful when we choose alternative treatments because we're one less hassle for them. As long as we don't up and die on them, they can sorta forget about us. Boy, but don't let us have a problem-- because then they say, "I told you so!" when they have to see you. There's one nephrologist I will have to :boxing; if he says, "See, home dialysis/nocturnal dialysis/PD is a bad idea..." if I have to see him the emergency room. He should keep the trap shut, because *I* don't go around telling everyone how when I was in his clinic several of his patients seemed to need CPR every treatment.