Why bother calling it the 'renal floor?' None of the nurses seem to know what that means!

After I rejected my kidney transplant in 1991, I was in the hospital every time I turned around. Despite being on the same floor as the hospital's chronic dialysis unit (called 'the renal floor'), I was shocked at how little any of the floor's nurses knew about dialysis or the special dietary and fluid concerns of dialysis patients.

After abdominal surgery to remove an infected peritoneal catheter, I was put on a liquid diet. This might be standard procedure for healthy patients, but I was a dialysis patient and needed to limit my fluid intake-- and there was more liquid on that breakfast tray than I was supposed to have for the whole day! Salty beef broth, jello, milk and orange juice-- if I'd had all of that, I'd have been in fluid overload by the end of the afternoon. I sent the tray away untouched, and when I told my doctor about it at dialysis later that day, he said, "I never ordered a liquid diet for you-- you need protein to heal up from your surgery!" If I hadn't complained about it, I probably would have stayed on the liquid diet until I was released from the hospital.

The next morning, I was looking forward to some 'real' food-- and what greets me but a tray containing a box of cereal, milk, an orange and a banana! Oranges and bananas are lethal to dialysis patients, because they contain enough potassium to stop the heart. Was the staff trying to tell me I'd overstayed my welcome? I mentioned this to my nurse, and she responded with, "Huh?" She didn't know why I wasn't supposed to have fruits containing potassium! When I told her that I was on dialysis, she said, "Oh, I don't know anything about that!" Even though she'd worked on the renal floor for over a year, she still was not familiar with any aspect of dialysis.

The thing that bothered me the most was that I still had an IV in my right arm. I was eating solid food and not scheduled for any more surgery, so why were they still putting fluids into me? "It's hospital procedure," the charge nurse told me. "That stays in until you're discharged." Great, an unwanted source of fluids! This meant that even though I was limiting my intake of liquids, I still ended up with shortness of breath because the IV put me over my maximum daily intake of fluids. When I returned to my regular dialysis unit after being discharged from the hospital, I was much heavier than I usually was before treatments and I suffered from foot cramps for the last 30 minutes of my treatment-- cramps that didn't respond to the hypertonic solution I was given to combat the pain. I was urged to 'tough it out' because "we've got to get this extra fluid off of you!"

I was thoroughly disgusted with the 'care' I'd received in the hospital, and I told my social worker and my dialysis nurse exactly why I'd gained so much fluid during my hospital stay. At least I'd known not to eat the orange and banana... quite a few of my fellow patients had returned from the hospital with dangerously high potassium levels, because they reasoned that if it was on their food tray, it was OK for them to eat it.

Thankfully, I haven't had to go to the hospital since 1997, but should I ever be hospitalized again, I am going to be more assertive-- IVs will be pulled after I'm able to eat solid foods, or I'm signing the AMA papers and leaving. "Hospital procedure" might be harmless for healthy patients, but it can be downright dangerous for dialysis patients.