Never should anyone be alone on their kidney disease journey

Chelsea Roman, 36, from California, USA, was diagnosed with kidney disease at a young age and received a kidney transplant in 2019. She has dedicated her life’s work to helping others facing kidney disease and is now involved in several organizations supporting patients and ensuring their voices are heard.

What was your diagnosis or your experience with kidney disease, and can you briefly describe your experience or the treatment you have received?

My diagnosis of kidney disease started at birth. I was born two months early weighing only 3 pounds. I had no kidney function for two days. I spent two months in an incubator at the NICU. I eventually gained some kidney function but it never exceeded 25%. I started home hemodialysis as a solo patient in 2017 and had gone 32 years without the need for dialysis by maintaining a healthy diet. I have now been transplanted since 2019 and the gift of life came from a deceased donor after waiting 7 years on the transplant list. I have known about my kidney disease since a very young age when my parents would cook homemade foods with NO salt. To this day, that is something I continue to do to maintain my kidney health. 

What was your level of education about kidney disease prior to your diagnosis/ involvement with KD and how has it involved since then?

I have become very involved with my kidney health and others’ kidney journeys. Not only am I an Advocate and Patient Consultant at NxStage Medical Inc by Fresenius Medical Care, but I do advocacy work for the American Association of Kidney Patients as an Ambassador and I am on Home Dialyzor’s United Patient Advisory Board to make sure the patient voice is heard loud and clear. 

I spread awareness of kidney disease, dialysis, and transplant through newspaper articles, Youtube, Facebook, Twitter, and Instagram. I did “How To” videos on home hemodialysis on Youtube. I shared my journey to transplant with a following of people trying to learn as much as they can for their own journeys. 

What or who did you find the most useful (resources, methods, sources, supporters) on your journey of continued kidney education?

In the beginning during my birth and childhood, my parents, family, and friends were my greatest supporters.
After my parents passed away and I was on my own to deal with my kidney disease, I relied on the internet, my doctors, nurses, and eventually social media and other kidney patients in the same boat as me. 

What would you say to people who are not familiar with kidney disease to raise awareness about kidney health and how to care for their kidneys?

For those of you who are not familiar with kidney disease, I recommend having a conversation with your doctor. Get tested, kidney disease is silent until the last stages. Life does not need to slow down because of a diagnosis of kidney disease. I am an example of this. I have graduated high school, college, gotten married, and now working for one of the largest dialysis companies in the country. I also support smaller groups in their efforts to spread the word about the prevention and treatment of kidney diseases. It takes determination and hard work, but living a life with kidney disease can be as fulfilling. It will be what you make of it. For me, positivity and perseverance are what helped me continue the fight, not just for myself, but for others as well. Ask many questions, there is no such thing as a dumb question. Follow your heart and talk to other kidney patients. We are all in this together. Never should anyone be alone in this journey.