A Narrow Focus on Physical Well-Being

When I first realized that dialysis was inevitable, I thought that the peritoneal dialysis clinic would be a helpmate, a resource, a place where I could turn if I had questions. Very soon I saw how naive that kind of thinking was. I received contradictory advice or nurses were afraid to give advice or they had the blanket response for everything--go to the emergency room. So I have tried to figure things out for myself and avoid the clinic as much as possible, except for my required monthly visit.

Let me cite one example of the craziness of dealing with the PD clinic. When I was training to do home dialysis in early February of last year, I must have asked a dozen times what I was supposed to do in order to get to the bathroom at night, as I was attached to the dialysis machine by a 9-foot cord. Nine feet was not nearly enough length for me to get to the toilet. All I kept hearing was that I should not disconnect myself as this would be unsanitary. I asked if I could put an extension cord on the electrical outlet, but that idea was nixed as it could shortcircuit the machine. So what I was left with was pulling the therapy cart as far as possible toward the bathroom, stretching the electrical cord and the patient line to the max. Once this resulted in the dialysis bags falling off the cart and pulling out of their connective tubing. This of course created a major risk of infection, plus I had to stop the treatment and start all over with new bags.

As part of the work-up for the transplant, I had to undergo all kinds of tests, including a colonoscopy. What was I supposed to do about going to the bathroom now? I'd be getting up many times during the night before the procedure. Finally, a nurse told me that there were patient extension lines that could be attached to the normal patient line, thereby extending it another 12 feet. Why hadn't this ever been mentioned before! Since then I have continued to use the extensions.

Then a month ago I was in a hospital in Fontana. I had to stay overnight, so dialysis supplies were provided. The nurse gave me a cassette that had an extra long patient line built in. This way I would not have to connect an extension, a good thing, since with every connection that is made, there is a potential avenue for infection. Why, why, why hadn't my own PD clinic told me about this over a year ago!

The answer I have come up with is that most health care professionals don't think of the patient as a real human being. Rather, they think something like, "Well, she should be happy she's alive. She doesn't need to have mobility, comfort, a social life, a sex life, a relationship, etc. She's alive. That's enough." And so they are very narrowly focused on the patient's physical well-being. What drugs can we give her to stop this symptom? What change in her dialysis solution do we need to make? They never take the time to wrap their minds around how they would feel if they were hooked up via a 9-foot cord to a machine for 10 hours every night. They think of their job as very narrowly about pills and protocol and covering their ass.