My long journey with CKD

Five days after I was born a healthy baby in Canada, I got an E. coli infection that landed me in intensive care for 22 days. My parents remained outside the ICU, praying that I would make it out alive. Fortunately, I did but was diagnosed with stage 4 chronic kidney disease (CKD) at only 27 days old. The doctors told my parents that they didn’t expect me to make it past 8 years old without a kidney transplant or receiving dialysis. My parents were saddened by the turn of events, but were determined to work together to overcome my condition and encourage me to live a normal life.

My condition changed my parents’ lives drastically. They had to rearrange their schedules and diets to accommodate my needs. My mom followed a kidney diet cookbook written by four moms, adjusting her cooking and always limiting my intake of phosphorus, potassium and sodium. She kept track of all of my required medications using pill boxes, setting a timer that reminded her when to give me my medications. My parents’ love and care—and following the advice given by the doctor—gave me a normal life like any other child my age and helped preserve my kidney function.

We moved to the United States when I was three because my parents wanted the best possible care for me. When I was 12, we moved with my Dad to Switzerland for a work assignment—an amazing experience that allowed me to travel around Europe and develop fluency in French. Two years later, we returned to our home in Rockville, Maryland. I saw it as a brand new start giving me the opportunity to reunite with old friends and my previous doctor.

One day at the doctor’s office, a nurse handed me a flyer about an art contest that was sponsored by the American Kidney Fund. I considered myself to be pretty creative, so I decided to apply—I loved the idea that my artwork could published in a national calendar and maybe even land on the cover, which would get me a ticket to the American Kidney Fund’s national annual gala, the Hope Affair, in Washington, D.C. in the fall of 2012.

But what to draw? I wanted to be original and creative. I looked through the previous year’s finalists and to my surprise, not all of them were drawings about living with kidney disease. I decided to draw my future cabin which would be located in the woods surrounded by mountains. After a sketch, I created the final copy of my artwork. I used a combination of construction paper, cotton balls, and colored pencils. After spending nearly a month perfecting it, I finally submitted my project. I wasn’t the most artistic person, but I believed that what I submitted was done to the best of my ability.

After submitting my artwork, I waited to hear back, hoping my artwork would be selected. Even if it wasn’t, I was still grateful for the opportunity and could always apply again the following year. I started thinking philosophically: You can’t always win in life so it’s important to not be afraid to fail and learn from your mistakes.

Eventually, I received an email notifying me that I was one of 13 finalists for the 2013 American Kidney Fund calendar! I was filled with excitement and literally jumped with joy at the news. When online voting for the cover started, I immediately reached out to all of my friends and family members asking them to vote for my artwork. Even though I didn’t get the most votes, I was still proud of myself for having achieved something great, stepping outside of my comfort zone and taking the initiative to do the best drawing that I possibly could. Even if you don’t win or achieve what you wanted, it’s important to acknowledge the fact that you tried your best.

Five years later, I’m already in my third year of college with plans to graduate in May 2018. I look back and recall the moment when I was notified that I had been selected as a finalist in the competition and how great it made me feel. It was a rewarding opportunity and something I’ll never forget.

Today, I’m moving on to new challenges. I hope to make an impact in the renal and transplant community with a book I’m writing which recaps significant moments I’ve experienced with chronic kidney disease during my lifetime. Through my parents’ love and affection, as well as my own persistence, discipline, and drive, I’ve been able to surpass the expectations of doctors and many people while living a pretty normal life. I hope my example can demonstrate that having the right mindset is one of the keys to pursuing a life or goal that you want.

Martin Portocarrero lives in Rockville, Maryland, and is a student at University of Virginia's McIntire School of Commerce. His drawing, “My Cabin in the Woods,” appeared in the American Kidney Fund’s 2013 calendar.

Posted: | Author: Martin Portocarrero

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