Kidney Solutions

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Austin Lee, An Extraordinary Advocate

On Friday, November 26th, I did an interview with Austin Lee on the Urban Health Outreach Media.

This was a terrific, far-ranging interview with one of the more interesting kidney advocates from the DC, Maryland and Virginia (DMV) areas.

Austin Lee is a two-time kidney transplant recipient, who was born with a rare kidney disease, posterior urethral valve (PUV) and become one of the most active and influential kidney advocates in America.

He received his first kidney transplant at the age of 4 from a live donation made by his Mom in July of 1993, that lasted 14 years until late 2007. He had many challenges with kidney disease as a child.

He then did peritoneal dialysis at home until May of 2010 when by way of a paired exchange, he received a second kidney from a living donor on June 8, 2010.

After that point in time in Austin’s own words, “Since I received the gift of life for the second time, I’ve made it my purpose to give back to my community. I’m now a patient care volunteer at Children’s National where I have committed over 500 hours of my time volunteering with pediatric patients. I also serve as a new Patient Family Advisory Council (PFAC) member, and I am committed to improving the overall care and experiences for other patients and families of the hospital. Children’s National honored me with the Volunteer Excellence Award in 2014, and I continue to be a voice for kidney patients in my local community and worldwide. I’ve also been recognized by the Washington Regional Transplant Community as Volunteer of the Year in 2017, and I was chosen for the Working 4 The Community Award during Black History Month in 2017 too.”

Austin has recently been invited to the Kidney Health Initiative Patient and Family Partnership Council.

Currently, he is pursuing a career in Early Childhood and in the process of becoming a Child Life Specialist to help other pediatric kidney patients experiencing battles similar to his.

He is a member of the Transplant Quarter Century Club, for transplant recipients who have lived with their transplanted kidneys 25 years or more.

To conclude in Austin’s own words: “I want to continue to mentor young pediatric patients on the importance of taking care of their transplanted kidneys so that they may be able to live out their life dreams and goals.”

Kidney Background From Birth to Age 4

Austin was not supposed to be here. While still in the womb, during an ultrasound, they discovered a dark mass in baby Austin’s bladder, an accumulation of fluid.

They told Austin’s Mother that her baby suffered from Posterior Urethral Valve (PUV), or obstructive membranes that develope in the urethral (the tube that drains urine from the bladder. The valve can obstruct or block the outflow of urine the the urethral, causing the bladder, ureters and kidneys to become progressively dilated, leading to possible damage or eventual death. https://www.chop.edu/conditions-diseases/posterior-urethral-valves-puv.

As Austin’s Dad was in the Service and stationed in Germany, the military physician advised Mrs Lee to abort the fetus. She refused.

While still in his Mom, they went in through her bladder and into Baby Austin to remove fluid. After Austin was born, the cut holes in his back to drain the urine from his body. He was immediately placed on peritoneal dialysis after his birth. He became the family project to help keep Austin alive. Multiple challenges and hospitalizations characterized Austin’s first four years of existence.

First Kidney Transplant

Austin’s Father was in the process of being transferred from the base in Germany to one in Washington, D.C. Austin’s Mom had an opportunity to visit with a physician in DC concerning Austin, who immediately recommended a kidney transplant. Mom was a perfect match for Austin. Sacrifices again had to be made by Mrs Lee, who had to lose weight to qualify for her son’s transplant.

At the tender age of 4 years old in 1993, Mrs Lee gave Austin the gift of life in the form of a kidney transplant. This was the first time in WDC that an Afro-American Adult had a kidney removed in one hospital, , and move to Children’s National Medical Center in Washington DC. Austin also had both of his native kidneys removed at the same time. This was a painful procedure as laparoscopic surgery was not available at this time.

Although a kidney transplant is not a cute for kidney disease, and Austin would still have challenges in his life, the quality of his life was vastly improved.

Rejection

Unfortunately, after 14 years in 2007, Austin’s transplanted kidney went into rejection. Austin was in high school at the time and the rejection came as a sudden and unexpected shock.

Back on Peritoneal Dialysis

Initially, Austin had to undergo emergency hemo dialysis, before returning to PD after his rejection. He remained on peritoneal dialysis for a period of 3 years. Again, there were many challenges for young Austin. During this time, Austin elected to educate himself about kidney transplants, hoping and praying for second chance at life.

Second Kidney Transplant

On June 8th of 2010, he got his second chance at a living donor kidney transplant. As a result of a paired exchange kidney swap, he was able to receive a kidney from Stella Christian, that continues to function well to this very day.

Commitment to Kidney Advocacy With Emphasis on Pediatric Kidney Patients

After his second kidney transplant, Austin committed himself to giving back to the community, including the Kidney Community with a definite emphasis on Pediatric Kidney Patients, but also to the DMV General Community as well.

He made a 500 hour commitment to Children’s National, volunteering with pediatric kidney patients. He teaches pre-schoolers. He serves on the Patient Family Advisory Council (PFAC), committed to improving the overall care for patients and families of the hospital.

He is currently pursuing a career in Early Childhood to become a Child Life Specialist, helping other pediatric kidney patients to overcome obstacles similar to his experiences.

Kidney Advocacy Experiences

By far and away Austin Lee is one of the most active Kidney Advocates in the United States. Here are just a few examples:

• He recently published his story for UNOS News entitled, Austin Lee: Giving Back and Helping Others

• He is a member of the Kidney Advocacy Committee for the National Kidney Foundation and he made a video for the NKF & Donate Life America for National Minority Donor Awareness Month.

• He is an Ambassador for the American Association of Kidney Patients, a Member of their Speaker’s Bureau and a Peer Mentor to advise other kidney patients.

• Acts as an Organ Donation Advocate for the Washington Regional Transplant Community.

• Has participated in the Transplant Games of America.

• He is a Wish Granter for the Make-A-Wish Mid-Atlantic Foundation after having a wish granted as a child himself.

• He is a Patient Care Transplant Volunteer for Children’s National Medical Center in WDC in the Heart/Transplant Unit and is currently assisting with a Christmas Gift Drive.  Austin has now done over 500 hours of Service at Children’s National!;

• He has recently done a webinar for CARE DX.

• He is a member of the Transplant Quarter Century Club, an Organization of Organ Transplant Recipients Whose Transplanted Organ Has Survived and Functioned for Twenty-Five Years or More.

Community Volunteer

Austin’s work in the WDC Community is also notable. He is a volunteer for Senior Dogs, Martha’s Table, where 320+ bags of groceries were given away for the needy, and the DC Pantry.

Awards

Children’s National honored Austin with the Volunteer Excellence Award in 2014, as he continues to be a voice for kidney patients in my local community and worldwide. He has also been recognized by the Washington Regional Transplant Community as Volunteer of the Year in 2017, and was chosen for the Working 4 The Community Award during Black History Month in 2017.

Future Work

In the near future, Austin is doing a documentary concerning Pediatric Kidney Disease and his Transplant Journey as a Pediatric Nephrology Patient of Children’s National.

Conclusion

Austin Lee is a terrific kidney advocate and a become for the DMV region. We will continue to follow his advocacy with interest.

Jim Meyers