Shaping the Future of Kidney Care

By Lori Hartwell

The RSN Renal Teen Prom has been a labor of love for me and countless volunteers, as we recently hosted our 25th prom. Over the course of more than two decades, I have had the privilege of meeting and getting to know an incredible group of youth who battle kidney disease and are winning the fight. Their resilience and positive outlook on life have taught me so much, and they motivate me to continue advocating on their behalf.

It fills my heart with joy to see many young adults whom I have come to know not only pursuing their dreams but also seeking ways to help others. I spent 13 years on dialysis and had my fourth transplant 13 years ago. By sharing my own story of living with this illness, I let them know that they too can lead long lives. They can get married, own a home, have a meaningful career, have a family, enjoy a household full of loving pets, and pursue their dreams. They have promising futures ahead of them.

RSN is thrilled to share “Capturing Dreams”—stories which highlight the journeys of some amazing people. When we were doing the photo shoot for the cover of this magazine, it felt like we were having a family reunion! We have a common bond and consider each other kidney kin.

Natalie is definitely a badass when it comes to overcoming adversity. Reading her story made me think that it should be made into a movie. She displays so much courage and understanding for her family, and she has a lot to teach others.

Trent has the biggest heart ever. As a recipient of kidney and heart transplants, he maintains an unwavering attitude of optimism toward life.

Mihi’s story always brings a smile to my face. I have always enjoyed Taylor Swift, but Mihi’s article of how this superstar inspires her takes it to a whole new level. I think I am a Swiftie now.

I have watched Austin grow up since we first met at the 12th prom in 2011. He is an advocate with a compassionate ear and a naturally kind disposition. I hope he chooses a leadership role in some capacity since he was born to lead. Maybe President of the United States?

Asha is wise beyond her years, and her quiet calmness and curiosity will take her to great places. She remains composed in a stressful environment where she is helping people who may have possibly committed a crime understand their options.

I have witnessed Meghna grow up, get married, and choose a career. Being a long-time attendee of the prom, I am delighted to see her develop her interests and fall in love with a wonderful guy. She is very creative and always ready to lend a helping hand.

Michael attended the very first prom and many thereafter. Having a similar story has always allowed me to connect with him, and I admire his zest for life. I will never forget his expressive moves on the dance floor. Those moves were at the level of Dancing with the Stars. His journey to sobriety and finding true love exemplifies resilience.

Joey and Vinnie are forever connected, as their moms have become best friends through their babies’ diagnosis. I love this story as it shows that not only do people with illnesses need to make friendships, but caregivers need a connection as well. Joey can bust a move too.

When I first met Isela, she had just learned she had kidney disease at the age of 16 during a physical examination. She was a student at Notre Dame High School and decided to volunteer for the prom, and now she works for RSN full time. She is an amazing person, and I am excited to work with her every day to further the mission of RSN.

Finally, Jasmine became friends with Reyna at a prom, and they have been BFFs ever since. When I read this story, I realized that the mission I started 30 years ago is thriving. These incredible individuals, along with many other stories of hope and the power of overcoming adversity, are showcased on our site.

To thrive, we need a kidney healthcare system which is easy to navigate, has enough healthcare professionals, fosters innovation for improved care, and most importantly, acknowledges that the only way for people who have a chronic illness to be able to effectively communicate our needs is by expressing how we feel. Much of the correspondence we receive at RSN comes from people who need to express their feelings of depression, fatigue, loneliness, and confusion surrounding their diagnosis, often feeling immobilized by these emotions. It is essential to remember that patient-centered care hinges on listening to and responding to patients when they express their feelings.

When I established RSN 30 years ago, I understood that mental health was crucial for my overall well-being because it influences every aspect of my life. Greater emphasis should be given to mental health as it is the most crucial aspect of overcoming the multitude of challenges presented by a serious illness.

Connecting with peers is paramount to navigating this illness. Online forums provide a pathway for this connection. We know that the most influential and impactful connections occur face-to-face. After all, humans are inherently social beings. Getting support from people who have “been there” is the glue that helps many people cope emotionally. One friend can make a difference.

In order to ensure a promising future, it is crucial to have a healthcare system in place which caters to our needs.

As I invest more time in learning  about the policies regarding kidney disease care, I am becoming more aware of the intricate and complex nature of the subject. It is imperative for all of us to actively engage and advocate for a healthcare system that serves our needs.

The future is upon us, and I have had the privilege of witnessing my peers embody the epitome of the human spirit. These exceptional people have demonstrated immense strength, courage, and resilience. Their very existence hinges on the healthcare policy choices we make today.

” I am happy to share “Capturing Dreams” stories, which highlight the journeys of these amazing people by Maxine Phoenix.” Learning their stories has given me a great deal of knowledge. Learn more and read their stories at” –Lori Hartwell. Click here to read all of the Capturing Dreams Stories

Lori-Hartwell-foudner-president-kidney-talk-host-authorLori Hartwell is the Founder and President of Renal Support Network (RSN) and the host of KidneyTalk® Podcast. Lori was diagnosed with kidney disease at the age of two and is now living with her fourth kidney transplant. She has published numerous peer reviewed articles and the book Chronically Happy. She is a thought leader in the kidney community and her goal is to always improve the patient’s experience of care and to let her peers know they are not alone in their journey.

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