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 nurses 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.
Taking Matters Into My Own Hands
I spent the next several years wondering, “Where do I go from here, what’s next?” I asked the in-center nurses, but their answers sounded like they were read off a cue card, like I was just the next patient to deal with before moving on down the line. Once or twice a year, someone would come around and ask me how I felt, but other than that, the focus was on my broken kidneys—not on me as a person.
The one word that was always repeated in the center was compliance. I had to do this, that, and the other thing in order to be “compliant.” It’s an interesting word to use on a person who feels like there is no hope, as if my disease robbed me of my agency, my ability to think through my choices.
I decided that I wanted to manage my disease, not the other way around. But to do that, I had to be proactive—about everything. I had to start from the ground up, beginning with what my kidneys were for and how they worked. Then learn about CKD and how people manage it while leading a normal life. But when you are young and scared and have no medical background, getting educated is like crawling up a steep mountain slicked with ice.
I endured. I put pieces of information together. Every day, I got a little more education. It was during that time that I first heard of home hemodialysis. Six years of in-center and not once had a single nurse or doctor mentioned it. I found it on my own.
Things began to change when I became an activated patient. I was able to secure the home hemodialysis option for myself. And I was able to get a better education about kidney failure, how to manage it and how to care for myself. Having that knowledge and being able to understand what my treatment options were gave me hope. It allowed me to believe, for the first time in a long time, that I could be strong and productive and live life to the fullest.
I met my husband on an internet dating site. I was upfront about my diagnosis and what I needed to do to treat it. He was very understanding. Soon after we started dating, he started going to the center with me and continued to help me when I transitioned to home hemodialysis.
I also wanted to become a mother. In-center, that wasn’t possible. I experienced five miscarriages, but when I moved to home hemodialysis, I successfully brought my daughter to term. She’s happy, healthy and 4 years old.
I also went back to school. Today, I am in my final year of nursing school at Palm Beach State College in West Palm Beach, Florida. I want to put my experience with CKD to good use by helping other people like me and letting them know that while their journey is going to be hard, it’s not hopeless.
How I am Giving Back and What Healthcare Can Learn From It
The doctors and nurses who have cared for me over the past 13 years have been wonderful, but they sideline the patient to focus on the disease. For example, a healthcare professional can tell you what is in the books or research, and they can speak from their medical experience, but they don’t actually live with what I am living with. Mine is a totally different perspective.
Patient advocates provide advice, guidance and assistance to help patients manage their care and conditions.
It wasn’t until I met and spoke with other patients that my outlook changed. I met patients who lived full lives, who got up and went to work. That gave me the courage to get out there and live a normal life.
I’ve turned my experience into a career. I work as a patient mentor, specializing in educating patients with CKD and ESRD. I provide advice, guidance and assistance to new patients as they begin their journey on dialysis. I like knowing that my experience will help someone else on this journey and maybe avoid some of the burdens I endured.
When I become a nurse, I will tell my patients that while everything seems overwhelming right now, things will get better. It just takes time. Be proactive in your approach. Just don’t react to what doctors are telling you to do. Your journey will be easier if you learn to be your own best advocate.
