Finding Common Ground—and Love—Through Organ Donation Advocacy

Were it not for their status as transplant recipients, Iris Resto and her fiancé would not be on the verge of getting married.

But there she was one day in 2016, volunteering at Google’s New York City office on behalf of LiveOnNY, the city’s federally designated organ procurement organization. It was her job to explain to employees the vital importance of organ donation and encourage them to register as donors to help respond to the overwhelming shortage of transplant organs. Across the U.S., about 100,000 people are awaiting life-saving transplants.

As their shift ended, Resto, who received a kidney transplant in 2007, asked another volunteer, Kevin Roberson, a double lung transplant recipient, how to get to the train station. He offered to walk her there. They became Facebook friends, and he attended a transplant event at City Hall in which she was involved. They went to lunch and found out they both loved the zoo, so they purchased a Bronx Zoo membership. They also joined the Bronx Botanical Gardens and wandered through the lush foliage. “The rest is history,” says Resto, 56.

Getting diagnosed with kidney disease and waiting for a kidney

In 1992, Resto was diagnosed with polycystic kidney disease. Her sole symptom was high blood pressure so the diagnosis, made through ultrasound, came as a shock. Ten years later, her kidneys had enlarged, growing to the size of a football, and had all but stopped functioning. One kidney was removed in 2003 due to recurrent infection, shortly before she started dialysis. Even before Resto began dialysis, her doctor had added her to the transplant list, knowing that dialysis could sustain her for only so long.

“The first year I was on dialysis, I thought I’d be lucky and get a kidney that first year,” she says. “But the years kept passing. I just kept sitting and waiting.”

As the years ticked by, Resto did what she could to keep herself as healthy as possible. She meticulously monitored her diet and went to all her doctor’s appointments to keep tabs on her kidney function. She volunteered at a high school, printing copies, answering phones and talking with kids in the counseling office. Keeping herself busy and the support of her family helped her pass the time. “My family was my backbone,” she says.

A new kidney and a second chance at life

Finally in 2007, it was Resto’s turn to move to the top of the transplant list. Since she received her transplant from a 6-year-old girl who died from an asthma attack, Resto has been grateful for second chances and on the go non-stop. She volunteers for Transplant Recipients International Organization (“TRIO”), travels—she’s notched five cruises—and goes fishing and bowling, all activities that would have been harder to pursue without a new kidney.

A few years ago as part of her travels, she attended the American Association of Kidney Patients’ annual conference, where she met CareDx and bonded over their shared commitment to transplant advocacy. Now she relies on CareDx’s AlloCare app to monitor her fluid intake and track her long-term trends.

She’s also busy planning a wedding. Although Resto and Roberson got engaged several years ago, the pandemic pressed pause on their plans. They intend to get married toward the end of this year in a small ceremony at City Hall followed by a luncheon at an Italian restaurant—Resto’s favorite—or a steakhouse (Roberson’s pick).

Using her experience to help her fiancé

Making plans to spend the rest of her life with another transplant recipient is comforting, says Resto. Both she and Roberson understand the stresses and challenges associated with transplant. Roberson is currently on peritoneal dialysis because the medications he took after his double lung transplant to treat his sarcoma also damaged his kidneys.

Fortunately for Roberson, Resto knew the ropes. “When his kidneys started failing him, I went with him to appointments,” she says. “I knew the questions to ask.”

Resto only wishes that she had been offered the option of peritoneal dialysis, which Roberson does overnight at home each day. When Resto was on hemodialysis, she had to quit her job as a claims representative at a health insurance company approving dental claims. And she had to spend hours multiple times a week at a dialysis center as well as observe numerous fluid and food restrictions. To make matters worse, she suffered a stroke during the five years she was on dialysis waiting for transplant.

Now as Roberson waits for his own kidney transplant, Resto is by his side, cheering him on and supporting him. “Neither of us have been married before,” she says. “We are so grateful for our donors. We wouldn’t be alive without them, you know.”