Guiding Kidney Transplant Patients Through Personal Experience

September 11, 2018
adillia

Unfathomable kindness sometimes springs from the most unexpected places.

For Adilia Ortega, LCSW, Independent Living Donor Advocate at Memorial Transplant Institute, the source was an elevator ride away.

In 2013, her neighbor, Cindy, volunteered to give Adilia one of her kidneys.

“At the time, we’d known each other about four years. Five years after the fact, it’s still hard to think about it and wrap my head around it because who does that? But, if you know Cindy, you know that’s what she does. She helps everybody out. We joke because she doesn’t like to share her food. She doesn’t share her food, but she’ll give you one of her kidneys! I honestly try not to think about it, because I cannot comprehend it,” she says.

As a licensed clinical social worker and an organ recipient, Adilia draws from both sides of her experience with transplantation to guide potential donors through the process.

“I’ve been fortunate to try three different roles in my social work career at Memorial, and although all have been rewarding, by far this has been the most gratifying,” says the Barry University graduate. “I figured I would bring something unique having experienced the process as a patient. When I interact with my patients, I think, ‘What better way to honor my donor than to be the person who advocates for potential donors at our center.’”

Adilia Ortega_photo1Born in Nicaragua, Adilia moved to Florida when she was 8 years old. At the age of 12, she was diagnosed with chronic kidney disease. Doctors said her condition would progressively worsen and that a transplant was inevitable. The health threat dogged her, but she didn’t let it stop her from earning a master’s degree in social work, working as a youth and family counselor at Community Youth

Services for seven years and then joining Memorial West in 2005 as a medical social worker.

“I love Memorial,” she says. “I love the culture and everything that Memorial stands for.”

But, as promised, in 2011 her health began to decline and she began the process of getting on the waitlist for a transplant. She shared the details of the process with Cindy not for sympathy, but to talk through the fatigue and fear that were taking hold. One day, Cindy said she wanted to get tested to see if she was a match. The idea both relieved and terrified Adilia.

“I never wanted to accept a kidney from a living donor because I couldn’t handle if something happened to them,” Adilia says. “I didn’t want Cindy to feel that I was pressuring her in any way. I gave her the number to call, but I told her I didn’t want to know anything.” Then almost two years later, a text from Cindy confirmed that everything was set and a surgery date had been scheduled. Adilia “freaked out.”

“I was excited because I knew this was going to help me feel better. But there are so many variables that it was scary too. The fear of the unknown was always in the back of my mind. Having to give up my independence was a huge factor. I live alone. I’m very independent. The hardest part was feeling dependent on others,” says Adilia.

The surgery took place on September 18, 2013. Almost immediately after Adilia noticed a difference. She felt more energetic than she had in years, and she gained color in her cheeks that she never knew was missing. Cindy recovered equally well.

Adilia wanted to bring all of her experiences to the forefront and hoped to join the new Memorial Transplant Institute. In 2017, she got that chance. She naturally draws on personal knowledge to perform her job, however, she doesn’t actually share her story with potential donors.

“My role as the living donor advocate is to ensure that potential donors are properly educated on the donation process, that they fully understand all of the risks associated with donation, that they are able to make an informed decision and are not being coerced or pressured to donate. I feel that by sharing my story, I may be creating undue pressure, and I don’t want to do that. If I was working directly with the recipients, I probably would. I can tell them this is how the process happens. But I want to be as objective as possible with my patients, so I’ve chosen not to share with them,” she says.

One thing she does disclose is gratitude to her living donor. It is an incomprehensible gesture of kindness, altruism, generosity and love – terms that cannot adequately qualify the act of gifting an organ still in use. Perhaps life itself best explains organ donation, and for that, Adilia is “eternally grateful.”