New Plans for a New Year

SURVIVAL TIP: Labor Day is for many a holiday from their daily work. However, dialysis patients in a clinic get no weekends, holidays, or vacations. Dialysis is necessary three times every week, no matter what else is on the calendar. With peritoneal dialysis, patients manage their treatments at home every night instead of spending four to six hours on dialysis in a clinic.

New Year’s Day 2007

The doorbell woke us at 7 a.m. on New Year’s Day. Who in the hell is ringing the doorbell at 7 a.m.?

When I left the hospital on December 30, the discharge nurse told us that a PD nurse would be in touch after the holiday to set up training with peritoneal dialysis (PD) using the catheter placed in my abdomen. I really had no idea what to expect.

I did NOT expect a driver in a box truck delivering a few pallets of dialysis fluid and the equipment required for PD before business hours on the first day of the new year! So by 9 a.m., I had a bedroom full of at least 45 boxes of dialysis fluid, an IV pole, boxes of tubing, and a special scale like a hanging fish scale to be used for the fluid bags. Medicare also sent a digital scale, a blood pressure cuff, and a heating pad for the PD fluid so it’s not room temperature going into a body that is normally 98.6 degrees. Still to come were gauze, bandages, tape, medicines, and surgical masks.

PD allows patients to manage their dialysis at home, generally while they sleep, with a machine that attaches to a catheter in the abdomen. Training starts with gravity fed PD several times per day for an hour. The set-up looks a lot like an IV pole. The actual machine comes weeks later after the patient demonstrates an understanding of how to select the appropriate fluid for the amount of fluid gained (retained). Patients must be near a commode so the waste can flow out. The area must also be a fur-free environment. That was when I understood why our black lab died the September before. It was all in God’s plan. Otherwise, she would have been right beside me to comfort me or crying outside of the door. We had a futon and a TV in the PD room to entertain me at 6 a.m. daily and every four hours thereafter. The procedure required taking my weight and temperature and wearing a mask to set up and end dialysis because of open tubing that went directly into the abdominal cavity. Anytime a catheter is open, bacterial contamination is a concern. Also, patients must be sitting for the hour-long treatment. Lying down causes the fluid in the “belly” or “gut” to be disbursed, which interferes with the drainage when the manual PD depends on gravity. Machine-driven PD is different because the machine pushes the fluid while the patient sleeps. A liter or more of fluid circulates through the peritoneal cavity with a dextrose (sugar) formulation, causing the toxins to bond and leave the system as dialysis waste. A nurse told me adults should output one cup per hour in normal urination. At the time, I was still making a normal but reduced amount of urine. The dialysis was necessary to clean the blood more than to remove excess fluid.

My peritoneal dialysis nurse called and came out within the week to teach me how to use the equipment and inventory in my spare bedroom-turned-dialysis clinic. During training, Amy promoted using liquid soap during training. She specifically said to avoid bar soap to control transmission of bacteria. However in the mandatory training video, the “patient” used Dial bar soap, as plain as day. The videos clearly are not made during an actual dialysis treatment. The machines aren’t connected to allow fluid output, and they don’t appear to be running. Realistic training would go a long way toward showing an understanding of what PD patients do each day. I pointed this out to the nurse, who said I really paid attention. She was a terrific help, and she was as much a counselor and shoulder to cry on as training nurse. But you will see more of that soon enough.

If you or someone you care about is facing dialysis, please share your experiences and concerns. This is a forum for learning and inspiration. Please share your stories and questions. What were your experiences and challenges with peritoneal dialysis?

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About dialysisgal

When I joined the 450,000 Americans on dialysis, I wondered what "normal" would be. Would people stare at my access and ask what was wrong? In this blog, I hope to save other patients and their families from the difficulties I have faced. I want to share my experiences, what I learned, had to ask and was shocked to find. I am not a medical professional, but I hope we can have a conversation to help you better understand what you or someone you love with chronic kidney disease (CKD) might expect while living with dialysis.
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