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How to Advocate for Organ Donation After a Transplant

Written by Zoe Engels, Contributing Writer and Editor


In 2012, John “JT” Thomas had his life flipped upside-down in the blink of an eye. The then previously healthy 20-year-old received a diagnosis that would put him on the kidney transplant waiting list. After receiving the life-saving transplant over a year later, JT became an outspoken advocate for organ, eye, and tissue donation, and he’s now running a half- marathon every month in 2023 to raise funds for the Brighter Days Ahead Scholarship, a financial aid award he created to assist students who are waiting for a transplant or have received a transplant. Keep reading to learn more about JT, the scholarship, and what it means to advocate for organ donation after a transplant.


Diagnosis and Transplant


Twelve years ago, at just 20-years-old, JT found himself suddenly feeling lightheaded, severely lacking an appetite, and quickly fatigued while playing sports.


At first, he says the symptoms caught him off guard and he didn’t take them as seriously as he should have, primarily because he didn’t know he needed to.


“When you have no previous medical conditions, you aren’t used to speaking up when you aren’t feeling well,” he tells SODA via email. “Kidneys don’t cough, so it’s hard to determine when to seek help.”


It took him approximately three months to get a diagnosis. After completing the necessary bloodwork (which showed that JT was extremely anemic), followed by an ultrasound, and biopsy, doctors diagnosed him with focal segmental glomerulosclerosis (FSGS). When patients have FSGS, scar tissue builds up in the part of the kidney that filters waste from the blood.


From then on, he spent 12 hours every week (for more than two years) on dialysis—roughly 1,464 hours on dialysis in total. He was also on the waiting list for a new kidney.


According to the American Kidney Fund, there are currently more than 106,000 people on the national transplant waiting list, and approximately 92,000 of those on the list are waiting for a kidney.


Ready to take matters into his own hands, JT turned to social media to share his story. In the post, he included his blood type and contact information for anyone interested in becoming his donor.


JT and Niki


After several unsuccessful starts with friends looking to help, Niki Nickeson, an acquaintance from high school, reached out. She’d been doing research and was ready to help. While they waited to hear if Niki would be a match, JT continued with dialysis and carried on as normal. Once they received confirmation that Niki was indeed a match, they prepared for the transplant, which took place on June 24, 2014.


Advocacy Post-Transplant


JT describes recovery after the transplant as a “slow process” because he didn’t want any complications, though he had age on his side at 22 years old.


During the initial portion of the recovery period, I had to learn to celebrate the small victories such as walking up and down stairs and eating foods like banana splits,” JT says. “While on dialysis, there are certain dietary restrictions such as the amount of sodium, potassium, and phosphorus [you can have], so eating ice cream again was definitely a treat.”


He’d gone from not knowing anything about organ donation—aside from signing up as a donor at the DMV because he figured he wouldn’t need his organs posthumously—to being a passionate advocate for organ, eye, and tissue donation, learning its life-saving importance firsthand.


When discussing Niki’s kidney donation with STLPR, JT said, “I am obsessed with taking care of this gift for her. The only way I can fully thank her is to live this way—to live with this kind of fervent attitude to care for this transplant—and to help others navigating the process.”


The experience also brought JT and Niki closer together, from mere acquaintances to being a part, JT says, “of every milestone and goal that I achieve after being given a second chance at life.”


Since receiving the transplant, JT has been an ambassador for a pharmaceutical company that manufactures an immunosuppressant taken by transplant recipients. As an ambassador, JT says he shared his experiences and encouraged patients to advocate for themselves with their transplant teams. Additionally, he’s volunteered at NKF kidney walks, which help fund kidney disease research, transplantation, and advocacy; he’s interned at the Missouri Kidney Program, an organization that supports transplantation research and provides financial assistance to Missourians who have received a kidney transplant or have end-stage renal disease; and he’s “been a patient advocate both on the state and federal level to extend medicare coverage for immunosuppressant coverage as well as living donor protection legislation.”


He’s continued turning to social media as a way to spread the word about organ donation and make a difference. By sharing his story and the impact of organ donation on his life, JT aims to “show others what is possible when given a second chance at life.”


The ‘Brighter Days Ahead’ Scholarship


Now, JT is running a half-marathon every month this year, and documenting the journey on his social media, to raise funds for the Brighter Days Ahead Scholarship. Students pursuing higher education who are waiting for a transplant or have received a transplant will be eligible.


JT and his fiancée after his fifth half-marathon and her first half-marathon


“When I was going through the process of pursuing my education while on dialysis, nobody showed me how to do it,” JT says. “I had to navigate that experience alone, and I want to provide aid to those who are going through that same process of uncertainty.”


He added, “Over the past few years, I have done little monthly ‘challenges’ to help me maintain my overall health to keep my kidney healthy. This year, I wanted to do something that challenged me both physically and mentally. Running has always been a challenge, but the pain and suffering that I experience during the half marathons pales in comparison to what people experience while going through the transplant process.”


As he keeps advocating for organ donation, JT encourages students who want to become organ donation advocates themselves to “get comfortable” and have open conversations about it with their friends and family. Students, he says, should embrace the advantage of being around other students and groups all day, every day.


“People are drawn to movements that invoke emotional connection,” he says. “And, if it can help others in need, then more people will support you and join in.”


If you’d like to join a group of passionate student leaders and advocates through an organ donation nonprofit, start a SODA chapter or see if your campus already has one at sodanational.org/students.

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