March is National Kidney Month. Help spread the word about kidney disease this month by sharing your personal story along with educational resources with your friends, family, and community. Kidney disease is a silent killer—let’s end the silence.
In this article, AAKP Ambassadors share why they are more than their kidney disease. Read their responses and take a few moments to reflect.
Iya Bekondo-Granatella
Dealing with ESRD can be challenging and often limiting. For a lot of people, it’s caused them their jobs, quality of life, lifestyle, happiness, and even their life. To an extent, any of those aspects could be me depending on the context. Having CKD and eventual ESRD has often cost me my freedom – FREEDOM to eat, FREEDOM to travel, even freedom to drink basic water. I never knew the value of being able to urinate until I couldn’t pee due to being on dialysis. A piece of chocolate, a cut of kiwi, or slice of banana becomes a treasure of potassium delight after you’re required to be on dialysis. Despite all that, I often wonder what my life would be like if I weren’t a kidney warrior. Being diagnosed at just seven years old, I’ve still been able to complete an undergraduate degree, two master’s degrees, founded a successful kidney charity organization, and continue to work full time as a Quality Specialist in the BioPharmaceutical Industry. I AM MORE THAN MY KIDNEY DISEASE. For me, it’s a mindset of mind over matter and the willpower to be intentional about living and living heartily despite any adversity. Being informed and surrounding myself with like-minded individuals like being a part of the AAKP certainly fuels my resilience. Not even kidney disease can stop me from dancing.
Richard Stacewicz
I am more than my kidney disease. I am also a husband involved in an ongoing and fulfilling forty-year relationship with my wife. We enjoy our retirements by going to museums, theater, and movies, even during the afternoons when we had been unable to do so while working. I am also a traveler who enjoys road trips across the country with my NxStage machine as well as jaunts to visit my grown children in New York and Tucson. My NxStage machine and delivery of supplies has made it possible for us to continue our love of visiting national parks and other sites across the country. We have also taken trips abroad, where I have arranged for in-center dialysis in places such as Puerto Rico, St. Lucia, and Mexico. I am also a person who engages in routine exercise such as biking and going to the gym on a regular basis. Finally, I am an advocate for other kidney patients in my role as an ambassador for AAKP and a member of the patient advisory council for the Kidney Project. I have not let dialysis constrain me or define who I am. I still have a life to live to its fullest!
Crystal King
I am more than my kidney disease. I educate my community about kidney disease while fighting for inclusive and equitable access to care.
Dammeon Marshall
I am more than my kidney disease. Daily, I am reminded that my identity is multifaceted and encompasses various aspects of my life, including interests, relationships, and personal achievements. While managing a health challenge like kidney disease can be a significant part of my journey, it is also the very thing that encourages me to stretch my arms high and wide around everything and everyone for love, by love, and of love. Although kidney disease altered my original plans, embracing and accepting my diagnosis afforded me new growth, new opportunities, and new experiences that motivated me to encourage others to live life to the fullest. For those reading this, remember to focus on your strengths, passions, and the things that bring you joy, hence self-love and self-awareness. Surround yourself with a supportive network of friends, family, and healthcare professionals who listen and desire to understand YOU and the importance of treating YOU as a WHOLE person beyond any specific medical condition—the anatomy. Kidney disease can dominate your identity and permeate various aspects of your life. Still, you can navigate its challenges beyond medical appointments, lab results, and modified nutritional diets by tapping into all things beyond kidney disease. I am more than my kidney disease, and my worth is not determined solely by it.
My identity is multifaceted and is far beyond kidney disease.
Nia Lugo-Koch
I’m Nia. I have kidney disease, but that does not define me. What a journey it has been. I’m a wife, daughter, sister, and friend. I have goals and ambitions. I want to help others and show other patients that there is more to life and we are more than CKD. I’m living proof that humanity can really come together and make miracles happen. From my doctors to family, friends, and my donors. Be positive, be brave, be resilient.
Charles Rice
My kidney journey started in 1993 with my first kidney biopsy. At that time, I really didn’t understand the concept of having a biopsy, nor the true meaning of kidney failure or imagining what my future outcome would be. As my journey continued through kidney failure and dialysis treatments, I started to learn more about the possible reasons and causes of kidney failure.
As person of discovery, I wanted to learn more about other possible treatments for kidney patients and what medications were there to become a successful patient. I needed more education so I could help my family and friends to understand how they could help anyone going through kidney disease.
I am now 16 years post-kidney transplant and I know I am more than my kidney disease. With my past experiences as a patient, you must become an educator for several fellow kidney disease patients. Educate them on medication regimes, concepts, and therapies while also ensuring them that their voices can carry weight through innovation and new considerations of treatments. In addition to the push, we must remember we are our best advocates.
Gary Moore
My motto is: “I don’t live with kidney disease. Kidney disease lives with me.”
It took years for me to put my kidney journey into perspective, but I do know how it began.
On April 18th, 2012, my life changed forever. I was taken to the hospital with what we thought was a bad case of stomach flu. I awoke several days later to find out what I thought would be my new lifestyle. I’d had a heart attack and two strokes, ending in kidney failure. Little did I know that what I would remember most about being in the hospital would become the foundation for what has become my motto and given me the strength to continue to endure and enjoy living. I was asked if I needed anything, and my response was a couple of questions: how’s my hair and when can I take a shower? I had bandages, tubes, etc., all over my body, but I just had to have a shower. My wife and nurse covered me with so much Tegaderm that I looked like a plastic mummy. They started laughing, and so did I. At that moment, I realized that I am more than kidney disease.
Leigh-Ann S. Williams, MPH, MS
I am more than my kidney disease. Even with having kidney disease and being on dialysis, I earned two master’s degrees. I am passionate about giving back and serving my community. Despite having kidney disease, I have served my sorority on the highest level as the international third vice president and currently as my local chapter president. Additionally, I am a board member of the Black Caucus of Health Workers and a life member of the NAACP. My commitment to service extends beyond my health challenges, and I firmly believe that I am more than my kidney disease. I am a patient advocate who uses my story and expertise as a speaker, panelist, and moderator to raise awareness, educate, and empower patients to take charge of their kidney health. I have lobbied for kidney-related policies with members of Congress and believe in the power of education, innovation, and patient empowerment to improve kidney health outcomes and reduce health disparities. I am more than my kidney disease. I live by the motto “These kidneys won’t hold me back!”, which reflects my determination to overcome the challenges of being a kidney and dialysis warrior.
