As Spokane School Board president donates kidney to her husband, they had role models and friends who did the same

May 8—Since they hit it off on a blind date in 1997, Nikki Otero Lockwood and Bill Lockwood were romantically compatible.

Introduced through work friends, the two worked in health care, Bill was an emergency room physician at Holy Family Hospital, while Nikki was a dietitian at Deaconess.

The couple married in 2000 after three years of dating and raised two daughters together.

In 2022, Nikki, president of the Spokane Public Schools' board and Bill sought out to determine their compatibility in a different way.

Diagnosed at age 25 with autosomal dominant polycystic kidney disease, a genetic condition that causes the gradual decline of kidney function leading to renal failure, Bill and Nikki hoped for the slim chance she could prevent dialysis by donating her kidney to him. Nikki knew of his condition since before they married and decided then she would give him her kidney, if possible.

"There was always like, 'Well, if I could give you a kidney I will.' " Nikki said. "From the get-go, that seed was planted early on. I never retreated from that."

Nikki kept a 20-year-old promise when in March, 56-year-old Nikki and Bill, 62, went under the knife after over a year of testing and preparation for their procedures.

It's not often that kidney transplants happen between couples, said Okechukwu Ojogho, Providence's executive medical director of transplant services and Providence practitioner of 14 years. Ojogho performed surgery on Bill, nestling Nikki's kidney in his abdomen among his two failing ones.

Four years prior to their surgeries, Nikki's friend Julia Larsen donated a kidney to her husband Eric Larsen, also in the later stages of autosomal dominant polycystic kidney disease.

"I think really it's entirely selfish," Julia said. "It was because I want my husband to be around."

"Like a bunch of grapes"

Like Bill, Eric was diagnosed early with the genetic condition. He was 17 when he found out a kidney transplant or dialysis was an inevitability.

"Different people progress at different rates, but ultimately it's a progressive disease that will ultimately lead to kidney failure," Ojogho said.

In the relatively common affliction, cysts slowly cover the kidneys until they eventually fail and no longer filter blood. In every case, patients will eventually need a transplant or dialysis as their kidneys begin to fail.

"Then it just grows like a bunch of grapes," Ojogho said. "With two kidneys, if somebody had that, you can see the abdomen and you see they're like eight months pregnant, potentially."

Eric's cysts would sometimes pop, leaving him in pain for days as they bled.

If a parent has the disease, there's a 50% chance they'll pass it onto their kids. Eric's grandfather died from the disease with no transplant. His mom was also afflicted, but received a donated kidney when she was around Eric's age.

Bill inherited his faulty kidneys from a long lineage of Lockwoods. His grandfather died from kidney failure in the 1930s, he said. His father, uncle and cousins all had the condition but received successful transplants. For these reasons, he was optimistic.

"I'm pretty pragmatic. Like I don't worry too much about that stuff. I'd seen my dad go through it successfully and my uncle and so I just knew it was there in the future, but I didn't really focus on it. I just tried to stay as healthy as I could," Bill said. "So I mean, I was really thankful and certainly really thankful once the time came."

Specialists consistently monitored the levels at which their kidneys were filtering blood. As the men aged, their kidneys grew slower and they felt significantly more fatigued and nauseated at times.

"I just kind of always felt like I needed a nap," Bill said.

"Just before the transplant, when my kidney function was down like around 10%, I would just get super tired. Sometimes I'd kind of doze off at work or I'd come home and take a nap for a couple of hours," Eric said. "It's just a lack of energy, that's really what it does to you."

Eric's brother intended to donate a kidney, although he didn't make it far enough in the extensive screening required of donors.

Once doctors determined Bill was teetering into kidney failure they began testing him to first deem the recipient a viable candidate for a new organ. Doctors strategically select the optimal time to transplant, walking the line between the recipient's fading health and maximizing the lifespan of their donated organ.

"They say, 'Well, it should be right before you feel terrible,' " Bill said.

Tests, surveys, screenings

After the recipient is cleared, then began the stressful process to test for compatibility and viability. Donors underwent extensive testing through X-rays, blood and urine analysis, dentist visits, a mammogram, colonoscopy and cancer screenings that took nearly a year in each couple's case.

"Their whole perspective is that, yes, a kidney will help Eric, but the recipient needs to not be left in any state where they're compromised, so it's a really thorough workup," Julia said.

Through the months of testing, there wasn't a moment Nikki thought twice about the decision she made 20 years earlier. Julia made her decision as soon as her brother-in-law failed the screenings; she didn't falter either on her relatively quick choice to surrender one of her kidneys.

Being able to donate her kidney meant her husband would get an organ from a living donor, which more often lasts longer, Julia said.

"It was helpful that it took time. Because it takes time, it allowed me time for it to sink in," Nikki said. "My decision didn't change over time, but it just helped me give very informed consent to the idea of donating."

While it gave Nikki time to adjust to her once-hypothetical decision, the lag was anxiety inducing. As time went on, Bill's kidney failure was noticeable. He grew more tired faster and his regular test results were troubling, indicating the kidneys were filtering less blood. Dialysis inched closer and closer. If the extensive testing deemed Nikki incompatible, the couple would have had to repeat the long process with another donor, if they could find a willing person, or join the five-yearlong cadaver kidney transplant waiting list in Washington.

As is standard practice, the hospital broke the good compatibility news to Nikki alone, giving her a chance to back out "quietly," she said, though the thought never crossed her mind.

"He was sitting right across the table when they called and I got a little choked up and I was just so relieved," Nikki said. "That was the overwhelming feeling, was just relief, like, 'Oh, good.' "

Julia also wept the moment she got the news. It still makes her emotional, she said, recalling the same sense of relief and delight. A month later, she was under the knife, sharing the wall of an operating room with her husband.

"It takes a village"

By both party's sides through the entire process was a team of physicians and professionals to help smooth the bumpy road, including a living donor advocate. A specific designee, the advocate ensures the donor understands the process and knows they can change their mind.

"The living donor advocates, they really establish trust with the potential donor and they go through, perhaps in not just one setting of interviews but provide opportunities to really revisit and review and evaluate thoroughly," Ojogho said.

Advocates screen the mental well-being of the donor, Nikki said hers helped her to better understand the previously "abstract" concept of kidney donation and empower her decision. Part of the screening involves confirming there is no money exchanged between the parties involved, including to caretakers for after the surgery. This prevents coercion, Ojogho said.

The advocate shared with Nikki what to expect in recovery: minimal pain medicine and lower energy from reduced kidney function by a minimum 25%, she said. While there are always risks to undergoing surgery, Ojogho said having one kidney doesn't reduce a donor's life expectancy.

Long-term recovery is typically worse for the recipients, managing incision site pain, wearing a catheter, taking anti-rejection medicine that suppresses the immune system and visiting doctors daily for checkups. Days after the surgery, however, it was the donors who felt worse for the wear. The donor's body incurs a loss, the recipient gains.

"The adjustment is just miles apart, so just adjusting to something completely new and quite a major surgery is new to (the donor), and then adjusting to medications, basically anesthesia and medications, all these things are totally new to them," Ojogho said. "Whereas the recipient, in all likelihood they've been in the hospital other times, and they may have had other procedures as part of just the illness aspect of it.

Julia was still bed bound and woozy when Eric came to visit her hospital room one door away from his, sporting a shiny new cystless kidney as his wife's body adjusted to losing an organ.

"He looked really good," Julia laughed. "Perhaps a bit pale."

The fresher, the better

Nikki's and Julia's donations are a part of the third of all organ transplants that come from a living donor.

"Finding a compatible, living donor is not easy. If you are related it may be a little bit better, because genetically, you would imagine that there's some things you share, so that may be a little more reasonable expectation," Ojogho said. "They were totally unrelated, genetically, then the chances are even smaller that you're going to find compatibility."

For both couples, a kidney from a living donor was ideal. Compared to those harvested from cadavers, live donations generally last longer and the immediacy of transplant, carried from one operating table to the next in a neighboring room, the organ can get to filtering blood faster. Cadaver organs obtained through the national transplant list can come from anywhere in the country; sitting on ice during transit.

"Depending on how long he's been sitting in there, ultimately when you take it out and recirculate blood, it may be sleepy," Ojogho said. "You may continue to require dialysis until that kidney wakes up, so to speak, and that could be occasionally hours or days or sometimes weeks."

Live donors are also screened extensively to ensure they're healthy enough to be down to one kidney, whereas organs harvested from cadavers have often endured trauma in the donor's death.

Partners also find sentimental value in the transplant. Nikki would lie on her bed affectionately murmuring encouraging words to her kidney before she gave it to Bill.

"I'd just be like, you know, 'Go forth and do good work,' " Nikki said. Now, she repeats affirmations to her lone kidney.

Eric's kidney donated from Julia was featured in their family's Christmas card, photoshopped into a picture of Julia's cupped hands extended toward a delighted Eric.

"It was kind of funny, especially in recovery in the hospital and things like that. It was like there's a little bit of her right there. It was interesting," Eric said. "And sometimes I think about her when I pee."

Born with three kidneys, Eric's donor kidney works better than any in his collection.

His energy isn't up to par with someone without kidney disease, but it's certainly better with the help of his wife, he said.

Bill's kidney from Nikki is filtering more blood than his last two were, although recovery goes up and down for both of them, who had their surgeries in March.

By giving him a kidney, Ojogho said Nikki saved more than just her husband's life, but she's boosted the lives of the patients he'll serve as an emergency room doctor.

"He spends his days helping save lives and other people," Ojogho said. "So for him to have this situation where it's limiting his ability to do that and maybe even affecting his life in general is huge."

Elena Perry's work is funded in part by members of the Spokane community via the Community Journalism and Civic Engagement Fund. This story can be republished by other organizations for free under a Creative Commons license. For more information on this, please contact our newspaper's managing editor.