Loss of Control

I am new to the forum. But I do need input from all of you on my subject. I have been on dialysis since December 2005 and doing well. My fear is that I am not in control of life any more. It seems my nurse is! I am such a Control Freak!! Help, please. I do not need a manager or mouth piece. Have any of you experienced this feeling?
Thank you.

Hi Korki, and welcome to Home Dialysis Central!

This is the PD patient message board–are you doing PD? People often feel like PD does give them back their sense of control over their lives, because they do the treatments themselves. What is it about your relationship with your nurse that makes you feel out of control?

Hi Doris,

Yes, I am a PD patient. That part is going well. Although I am not able, for some reason, to use the cycler. I used the cycler very well at first, for about a month, than started getting the “Slow Drain” alarm…constantly. My physician and I have not been able to find the reason. Tried a bunch of different things.

My nurse got changed after I sent that Out of Control message. But the problem for me is the complete lack of personal privacy. It seems that they try really hard to interfer with my life. If I have a problem, I can and will call the doctor, as I did prior to dialysis!! I handled (managed) my labs and diet very well. So, I don’t need someone in my business. (So to speak). If I have a problem she needs to be aware of, I will tell her.

Thanks for your response. Have a great day!


Hi Korki,

I guess maybe it’s relative. Compare to not having a kidney problem (and not having any medical people wanting to know about your weight and your blood pressure, what you’re eating, which meds you’ve taken, etc.), there’s no question that any form of dialysis is a loss of some personal control.

Compared to in-center hemo, though, I believe that PD gives you a lot more control over your schedule and your treatments–at least that’s what we’ve heard from other folks on PD.

Is the new nurse working out better for you? Sometimes personality conflicts can interfere with care. But largely, it may be a matter of choosing how you look at your situation.

I know it may be hard to believe at this point, but PD patients that I’ve known come to trust and rely on their training nurse even more than their doctor for things related to their PD treatment. In reality, the nurse is probably more knowledgeable about the procedures needed to do PD and how to troubleshoot problems with the cycler (CCPD) or manual PD (CAPD) than any nephrologist I’ve known – and working in dialysis since 1978, I’ve known quite a few doctors. Doctors typically defer to the nurse in these matters. When the PD nurse doesn’t know, usually the customer service staff who work for the company that make the machine can troubleshoot a problem like a slow drain alarm. Therefore, I’d ask the nurse or the company what might be causing your slow drain alarms.

Also, it might be worthwhile trying to work on the relationship with the PD nurse. If I were you, I’d talk with the PD nurse and tell him/her that you like being in control and taking care of things yourself He/She will probably like that. Also tell her that you’ve always consulted with the doctor instead of a nurse when you had questions and you don’t know what things you should talk with a nurse or a doctor about. If you’ve had bad experiences with nurses acting as gatekeepers and keeping you from speaking with a doctor or giving you misinformation, share that with him/her while telling him/her that you don’t expect to have that with him/her. Ask the nurse what types of things you should talk with him/her about and what types of things you should talk with the doctor about.