Kidney Patients Deserve Better

I go to the same dialysis facility every Tuesday, Thursday, and Saturday from 1 – 5 pm. I know the staff quite well now. Once I’m hooked up, the technician leaves me alone and simply asks that I give them a holler if I need anything.

Last November, about an hour and a half into my treatment, my body started feeling stiff. As soon as I noticed this, my whole body started cramping. It was one of the most painful experiences I’ve ever endured since being on dialysis. As this was happening, I tried asking for assistance but the staff was busy with other patients. I felt helpless. The pain seemed to go on forever until I fell into darkness and then it was gone. Later, I found out that all of this happened in a matter of seconds.

I woke up in the emergency room hours later and was told that my blood pressure had fallen dangerously low. I don’t know who called 9-1-1 or how long it took for them to realize that something was wrong with me. I went home feeling thankful that I had survived.

It was after that incident that I grew aware of how many patients one caregiver has to look after. I would see 3-4 caregivers busy with up to 16 patients at a time with some people requiring more attention than others.

Even though I’ve been given a second chance at life, it has been a difficult journey. Dialysis has prevented me from working but my wife and I still have a family to support.

On top of this, my 12-year-old daughter was recently diagnosed with leukemia. I’m staying strong for her and have been driving her to chemotherapy whenever I can. Although she’s getting better too, we all have to constantly be on our toes. I can’t afford to worry about landing in the ER again.

I worked for 20+ years as a social worker where I enjoyed helping others and giving a voice to individuals with developmental disabilities, so I know patients’ voices matter. We need to come together with dialysis workers and policymakers to fix the dialysis industry.