Home Dialysis Partneritis

I don’t know if this subject has been broached yet, but I get the impression that there are many folks on this board that do their dialysis fairly independently, and there are other who seem to be mostly reliant on their partner caregivers. I fall in the former and in over a year, I hardly have had to rely on another person to physically intervene. Oh, yes, I holler for help because I don’t want to get out of the chair to pick something that has fallen, or check and see if I have forgotten to unclamp something. But I’ve self-cannulated every treatment since 2/06, and I’ve removed every needle myself. Sure, my wife went to training for a few days, and she even learned to hang bags and start the NxStage setup — to a point. But by and large, I’m a one man show. Yes, I know the rules — I’m supposed to have a partner. In reality, I don’t, I don’t think.

I also know there are others out there like me (Bill, your dog doesn’t count as a partner!). But it also seems like there are some patients who are totally dependent on a partner. So here’s a couple of questions for the home dialysis community to ponder.

  1. If you’re independent, what happens if a real emergency takes place and you need another person’s help? What if you become incapacitated —even for a short time. I’d hate to go back to an in-center situation. I don’t even want anybody else to cannulate me.

  2. If you’re a caregiver, what if something happens to you? Has the patient learned enough to be independent.

In each case, we may not be in compliance with all of the rules, but we all appreciate the ability to and benefits of home dialysis. How much are we willing to do in order to continue? I need to decide too.

Rich Berkowitz

NxStage 2/06
In-Center 3/03

In our case, my wife had been on PD for about a year before we switched to Nxstage. It wasn’t working for her. She was so uremic that she wasn’t thinking straight. She had gained 30 pounds from the PD and extra fluid that wasn’t being removed. She got to the point that I wouldn’t leave her at home. She had to go to work with me. I had a place set up where she could lay down and sleep, do her exchanges, etc. She couldn’t even drive. I had no choice but to do everything.

That was last October. She has now lost that 30 pounds and is able to drive, help me at the office, do some housework, etc. She feels much,much better than before. She is now capable of doing her treatments.

To answer your question, we do the treatments together. I set the machine up, fill syringes, etc. while she is getting her weight, checking vitals and preparing her access. I record her readings throughout the treatment on an excel spreadsheet that I email to the clinic as soon as we are finished. It is truly now a team effort. I am fully capable of doing everything from start to finish and she is too. If I get too sick or can’t help for whatever reason, I have a backup person that can come in and pretty much do what you say your wife does.

Also, this gives us about 20 hours a week to spend together and talk, watch TV, etc. Also gives me the time to spend online doing research, checking out bulletin boards like this one, etc.

We have about 14 minutes left before this treatment is over. Then we will get up and start our day.