Written by Zoe Engels, Contributing Writer and Editor
When Trish Phillips became a living kidney donor on December 15th, 2016, she didn’t realize it would shape the trajectory of her life and imbue it with a new sense of purpose. As an African American with this firsthand experience and passion for the cause, she has become an advocate for multicultural organ donation and has spoken to communities across the United States about organ, eye, and tissue donation.
Trish’s Organ Donation Journey
When Trish’s best friend of over twenty years, Kimberly, was struggling with her health and had been put on dialysis, it was difficult and painful for Trish to watch Kimberly’s health deteriorate. They had coined themselves the modern-day Thelma and Louise, minus the tragic ending. Trish missed her best friend, too, as Kimberly’s declining health made it difficult for them to spend time together as they once did.
Trish and Kimberly (photo from Facebook)
Kimberly did not openly speak about the fact that she needed a living donor, but when Trish asked what she could do to help, Kimberly gave her the information that would begin Trish’s organ donation journey. At the time, Trish didn’t have the education about organ, eye, and tissue donation that she would have needed to take initiative, so the conversation with Kimberly was imperative to help her learn about this life-saving option.
Trish began the process of becoming a living organ donor in April 2016. She describes it as a lot of work, though necessary, as doctors must ensure that an individual is the right fit for organ donation and is also healthy, particularly so that, down the line, they won’t need the healthy kidney they intend to donate. She first spoke with a representative from Tampa General’s Transplant Center by phone for approximately an hour.
“They're getting to know you,” Trish explained. “They're feeling you out, they're telling you what you're up against, making sure this is something that you want to do [and you’re not trying to] do it for the wrong reasons.”
After passing this step, she gave between six and eight vials of blood. Later, doctors conducted a 24-hour urine analysis test. Although most people complete the latter test in one or two tries, Trish had to redo the urinalysis several times. While factors such as not storing the cup properly and menstruation can alter results, she was also a runner, which meant she was doing strenuous workouts and could be prone to dehydration—factors that made it so that her creatinine levels were not reading as within the ideal range.
“I’m a five-timer,” Trish jokes of her urinalysis process.
For her, the trick was to stop taking supplements and not work out for two weeks prior to the urine test.
Next, Trish had to lower her Body Mass Index as doctors felt it was close to the benchmark. Trish lost twenty-three pounds the healthy way from April to August. By September, she was given the all-clear to proceed and went to Tampa General in person for tests.
“When I say tests, it makes you feel like you are trying out to be on the A Team or something,” Trish said. “Because they really dig deep between the psychiatric evaluations, meeting with a nutritionist, CAT scans with contrast, [and] many different [exams]."
After Trish passed all the exams and was deemed a good fit, she and Kimberly were able to schedule the transplant approximately nine months after the process began. Since donating her kidney to Kimberly in December of that year, Trish says the duo are closer than ever before.
“[Kimberly has] picked up some of my traits, and we're pretty much inseparable now,” Trish shared. “Becoming a living kidney donor is also a blessing for me because now I'm more conscious of what I'm putting in my body, … so it's really life changing. And something that I didn’t expect to happen is I’ve become the advocacy voice for living kidney donors, especially in multicultural communities. I’m trying to make a difference and change statistics when it comes to [organ, eye, and tissue] donation for us.”
Multicultural Organ, Eye, and Tissue Donation
According to the American Kidney Fund, African Americans, Hispanics, Nativen Americans and Asian Americans are at an increased risk for kidney disease, and more than one in three kidney failure patients in the United States are African American. Through her personal experiences, Trish saw firsthand that there was a need to increase organ, eye, and tissue donation awareness and education in multicultural communities, and she decided to take action.
SODA is trying to close the gap between the number of African Americans who need transplants and who are organ donors! Learn more about SODA’s HBCU outreach here.
Following her transplant, Trish became a volunteer for several Organ Procurement Organizations and member of volunteer groups for Donate Life and kidney organizations. She says few of the volunteers and event attendees looked like her.
Trish explained, “If there’s someone that looks like me, a person of African American race, [at a volunteering event] and I’m standing next to someone that’s not the same race as me but we have the exact same spiel, the person would tend to listen to someone that looks like them or has [lived] through the experience. This goes back years to the medical mistrust that has formed in our communities. So, I thought, … what’s stopping us [from becoming donors]? We’re number one on dialysis, but we won’t even think about being organ donors.”
As Trish thought about these barriers, she also wondered how she could spark change. She decided that if people in multicultural communities could relate to her and her experiences, then she could help advocate for and educate about organ, eye, and tissue donation. For her, the key was not to push the discourse of “register to be an organ donor first,” although that is the end goal, but rather to change the narrative in people’s approach to organ donation by presenting the facts and statistics, busting organ donation myths and letting people know the risk-factors that make them prone to needing a transplant (with the disclaimer she includes that she is not a doctor and individuals should still contact their physicians).
Trish had her first speaking engagement two years following her kidney donation. A woman at the event told Trish, “You are a rare unicorn because you are a person of a minority race, and you donated to someone you are not blood related to.”
These words inspired Trish to create the mascot MODA the Marvelous Unicorn, meaning Minority Organ Donor Awareness.
MODA the Marvelous Unicorn
“She's a unicorn that sprinkles joy and brings awareness that you don't have to be blood related [to donate to someone], and we need to change the narrative,” Trish said. We need to change the stats. We don't need to be so rare. Let's stop being the black, mystical unicorn.”
MODA is now the mascot for Trish’s organization, Multicultural Miracle Donor Foundation (MMDF), which became a 501(c)(3) nonprofit in 2021. The organization’s mission is to inform, assist, support, and advocate for multicultural living donors and the families of deceased donors.
“I just took it and ran with it,” Trish revealed. “And I have had more joy and more success with speaking to them, changing the narrative, debunking the myths, educating them on prevention and the stats that are so alarming [than anything]. I have had people say, ‘Oh I'm ready to become a living donor, I'm ready to sign up to be a deceased donor.’”
Check out SODA’s FAQ about organ donation here.
Trish begins her speaking engagements by asking, “How many people here know someone or you yourself are on dialysis?” She finds that approximately a third of the hands in the room go up. At the end of each speaking engagement, she asks everyone to close their eyes and think about, “If you or someone that you know–your brothers, parents, sisters, children–[and] someone you want and love or need in your life needed a kidney, wouldn’t you want to help them?” She finds that this approach generates the most feedback and interest in learning more about organ, eye, and tissue donation and becoming a donor.
Trish also has a Weekly Kidney Awareness radio show, which launched on March 10th, 2018, and has developed a following in the Fort Lauderdale area. A client of Trish’s had lost their father and brother during dialysis, and when they found out Trish was a donor, they said “You have to tell your story.” Though Trish had left the DJ booth and is now a General Manager, they offered to sponsor her show. Trish saw it as an opportunity to further her advocacy efforts.
She has inspired listeners to go to the doctor to get check-ups and blood tests, with some people even calling her from the doctor’s office to have her speak with their doctors. She includes a fruit of the week and discusses the benefits, and she also uses it as an opportunity to encourage people to maintain communication with their doctors in case there are certain fruits they shouldn’t be eating. The radio show isn’t only about kidney health and donation as Trish’s focus is organ donation advocacy and education at-large.
Advice for Students
“Teach them while they’re young,” Trish says.
She adds, it is important to educate students about organ, eye, and tissue donation because they can then bring that information home—to their parents, families, and communities—and educate future generations through a chain reaction.
To Trish, organ, eye, and tissue donation advocacy and education means having a voice and using it; it means sharing the importance of organ donation with others and working to debunk the myths. She finds that beginning with education and prevention instead of leading immediately with the organ donation registration ask is most effective.
According to the U.S. Department of Human Services and Minority Health, in 2020, 28.5 percent of the total candidates waiting for organ transplants were African American, but only 12.9 percent of organ donors were African American. Trish’s approach to organ donation education means she shares statistics like these early-on in her speaking engagements.
“For me, my advocacy work stands on educating, prevention, dispelling the myths and then letting [people] know that it's okay [to become an organ donor] and how much we need living donors of multicultural races and deceased donors—in that order,” Trish explained. While there is no one-size-fits all model, it is an approach she recommends students try out in their advocacy efforts.
Trish describes the work SODA and our student leaders are doing as remarkable, especially because it fosters life-long advocates who can teach about organ donation in their communities.
“They can take it home,” Trish said. “I wish I would have had [something like SODA] when I was in school.”
If you’d like to try out Trish’s organ donation advocacy and education approach, apply to host a SODA event or start a SODA chapter at sodanational.org/students.