When I was a child, I told myself that 32 was going to be a year in which something magical happened. I didn’t know then what the magic was going to be. It seemed so far away at the time, but my gut told me that something was going to happen during my thirty-second year on this planet.
Thirty-two years ago, I was born two months early at three pounds and with no kidney function. I was revived by the amazing doctors and nurses who were working that day. After two days, one of my kidneys kicked in. After two months in the neonatal intensive care unit, I was finally cleared to go home with my parents. My parents supported me and instilled in me the importance of maintaining my kidney function. To this day, I have never known my kidney function to go above 25 percent. I have always known the inevitable. I always prepared myself for what was going to come. My parents, doctors, and nurses were my healthcare heroes.
In 2017, my kidney function was at 9 percent. I had gone 32 years without the need for dialysis, or any other treatment. I have blown family and friends away with my resilience and positivity, which has been an essential part of my life. Today, I know what my thirty-second year had in store for me. I was to begin my journey of navigating the dialysis world. It had come to the point that I need a little assistance in living. It was not entirely a bad thing. Yes, being tied to a machine multiple times a week is no fun, but it is better than the alternative.
I spent two years as a solo home hemodialysis patient and seven years on the transplant list. During that time, I felt inspired by my own experience as a kidney patient to start an online presence. I started it on Facebook by posting about my dialysis treatments, then on YouTube to show how to do solo treatments. Before I knew it, I had gained a following of others just like me who needed and longed for the information that they could not find.
I got “the call” in 2018. It was the call I had been waiting for. “There is a brain-dead donor, and you are a match. Please stand by while we do the final cross-matching,” she said. I showered and waited. She called back. I knew by the tone of her voice that it was not the kidney for me. I had faith, I knew the system worked! The second call came one late Saturday evening in November 2019. I was told to be at the hospital at 6 a.m. the next morning. I felt a mix of emotions. I was happy but devastated for the family who had to lose someone they loved. I also felt a sense of loss that the life I had known for the past two years would be over. The donor who saved my life became my healthcare hero.
When COVID-19 hit, I was isolated from the outside world. I found myself wanting to help, support, and inspire other patients on their own kidney journeys. There is nobody who understands kidney disease more than those who live with it every day. They manage their health in ways most people cannot even comprehend. Between managing a diagnosis of chronic kidney disease, dialysis treatments, or life post-transplant, these amazing individuals live nothing but extraordinary lives. That’s why those people are my healthcare heroes.
Heroes come in many different forms. Heroes are people we are in awe of. I am in awe of my husband, family, friends, colleagues, and fellow kidney patients who I thank for giving me a reason to smile every day, a reason to keep going and not give up. I truly believe that when life gets tough, we are given the strength to get through it. Health challenges are made easier when we are surrounded by people we look up to, which makes them my healthcare heroes.
Human beings are miracle beings. We are all on this planet together. We need to work together to help each other thrive. It is the only way that those of us who are sick can get better. The human connection is a powerful thing. Heroes are everywhere.
Chelsea Roman is a lifelong kidney patient born with kidney failure. She regained some kidney function after spending two months in the NICU. Growing up she never had more than 25% kidney function. At 32 years old, my she started as a solo home hemodialysis patient. She did dialysis 4 days a week for two years until she revived a transplant after waiting on the list for 7 years. Chelsea works as a Patient Consultant and Advocate educating patients on their dialysis options at NxStage Medical by Fresenius Medical Care. She is a member of the Patient Advisory board with Home Dialyzor’s United.
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