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The Good Fight: From Patient to Mentor to Registered Nurse

“All I knew was that something was seriously wrong with me. I had been experiencing blurred vision and intense headaches for quite some time, so I went to the Emergency Department to get checked out. I knew my blood pressure was high, but wasn’t sure if that was causing my headaches and vision problems. Part of me wondered if I was having a stroke. The nurse drew blood and ran tests. Later, a doctor told me that I had Stage 5 chronic kidney disease (CKD) and needed to be placed on dialysis immediately.

That was March 24, 2004. I was 18 years old. And all the life I thought I had ahead of me suddenly looked so much shorter.

It’s hard to put into words what it is like to be suddenly diagnosed with a life-threatening illness at such a young age. My mom, who had lupus, was diagnosed with early-stage CKD—and was able to slow and manage the disease’s progress. But that wasn’t my situation. To me, CKD seemed like the end of the world. I thought I had five years to live—maybe.

The people caring for me didn’t give me much information—not about CKD, my treatment options or how to prepare for the long road ahead. As far as I knew, everything good that made up my life—work, education, dating, socializing—was over, except for routine trips to the dialysis center. I moved in with my mother in Florida. My dialysis center was not close, so I spent much of my time riding a bus.

Here’s something you may not know: Dialysis comes with a stigma. People have an image of the terminally ill, permanently hooked up to machines, unable to lead anything like normal lives. My circle of support—mostly friends—quickly vanished; they were going to get married, have kids, build a career. Maybe they didn’t think that was possible for me anymore. Honestly, I thought there might be some truth in that stigma.”

Read the full story on Engaging Patients