Dividers with tabs. Check.
Black Sharpie marker. Got it.
Hole punch and reinforcements. Ready to be used.
Big black binder. Perfect.
Crisp and wrinkled medical documents encircled me in the neat and meticulous piles that I’d made. I was a human “spin-the-bottle” in the middle of massive amounts of paperwork, wondering which pile I should tackle first.
I was 22 years old. Ten years after receiving my second kidney transplant from my precious deceased 4-year-old donor, I was about to embark on my new health care journey: I was about to see my nephrologist all on my own, with no parent there to hold my hand and ask all the questions. Only my nephrologist and me. It was time for me to take full responsibility for my own health, body, kidneys, and life.
When I was 7 months old, the health care professionals who had become my second family diagnosed renal agenesis, which means that my kidneys had never fully developed (one was shrinking and the other was deformed). All of the papers that surrounded me summed up my life with chronic kidney disease: reconstructive bladder surgery in an attempt to “fix the plumbing,” peritoneal dialysis for 2 years starting when I was 3 years old, my first kidney transplant when I was 5, years of bed-wetting and an arthritis diagnosis after that first transplant, a second transplant when I was 12, worsening joints, and more.
When I was growing up, health care professionals always spoke to my Dad about my body and the condition of my defunct kidneys. Those professionals didn’t know that an active participatory patient was waiting to be released when I finally became a legal adult. White-coated people looked at me, smiled, and swooned over how cute I was with my moon-pie face from prednisone; they pinched my chipmunk cheeks and placated me. Little did they know that I was listening to every conversation and every word they and my father uttered about me. Truly listening to my body, as well as playing the quiet, intuitive observer and listening to the discussions about my body, was the first step in becoming a proactive patient. Proactive patients quickly learn that from listening and observing comes careful thinking, along with decision making and then, finally, corrective and maintenance actions aimed at managing one’s own health. I knew my body better than anyone. I was a pint-sized, unique person who packed a punch with the volume of my voice and the articulation of my words. Yes, I was short at only 4’11”, but loud in life and living, and especially in taking care of myself. Now that I was going to see my nephrologist all by myself, I was going to prove that I packed a punch in the active participation of my health, body, and precious, pre-owned kidneys.
Sprawled on the floor, I leafed through the piles of paper with slight trepidation. How was I ever going to organize all these papers? How was I to make the transition from child to adult and prove to my health care professionals and myself that I could handle everything involved with my health, from dealing with the paperwork to being a proactive patient? How was I ever going to solidify the position that I was indeed a patient who asked to be taken seriously and wanted to work alongside my health care team rather than beneath or even above them?
I began to carefully punch holes in as many sheets as I could. Then I labeled each divider and filed every single piece of paper correctly in the sections I had created: Lab Results, Insurance, Doctor’s Notes, Correspondence, Prescriptions, etc., etc.. My hands were getting numb from all the filing. My eyes were weary and watery from looking at all the small print, but this torture left me strangely satisfied. Small steps led to achieving the greatest goals imaginable.
I was prepared and ready. I was independent. My meticulously organized black binder was done. I would obtain copies of any medical documentation at my first independent appointment with my nephrologist—and the many after. I had taken the first steps to managing my own health and body. I was a proactive patient who could take on anything to keep my kidneys functioning at top speed!
Mary Wu lives in Ossining, New York
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