When Don White Jr. first went on the waiting list for a pancreas and kidney, there was no transplant program in Spokane.
Then 32, White had lived with type 1 diabetes since he was 14, and his kidneys were failing from the strain of poorly-managed blood sugar over the years. He needed a new kidney to filter his blood, and a new pancreas to cure his diabetes, solving the underlying problem.
“They told me my kidneys were shutting down,” he said of his initial visit.
But the relatively uncommon surgery was only offered at a few hospitals in the region.
White and his wife, Brandi, first traveled to the Mayo Clinic in Phoenix, Arizona, to get on their transplant list in 2011. While they were waiting, White began peritoneal dialysis, a form of the treatment he could do at home.
He worked as a salesman at Wendle Ford and would change the bags of cleansing fluid for his dialysis in the bathroom while he was on the job, he said. He left the job in December 2012, too worn out from treatment to continue.
White’s kidney problems grew out of his diabetes, which he managed poorly after diagnosis.
In healthy people, the pancreas produces insulin, a hormone that regulates blood sugar. But in type 1 diabetics, the pancreas doesn’t do its job.
As a teenager, he didn’t want to skip out eating treats with his friends, he said. He didn’t have health insurance when he was diagnosed, so it was hard to get insulin and other supplies he needed.
At 26, he got insurance and an insulin pump, which he said “changed my life.” But his kidneys had been severely damaged by fluctuations and unhealthy blood sugar levels.
When Brandi found out White was in kidney failure, she was terrified.
“I thought he was dying. I didn’t know that there was treatment for kidney failure,” she said.
The two met on a blind date bowling at Lilac Lanes in 2003, and married just six months later. Brandi said she was “star-struck” on their first date, impressed by White’s strength and care.
“He was strong and assertive but kind and just thoughtful, always thinking about what I needed and what I wanted to do,” she said. She was just 26 when he was diagnosed.
“It definitely grows you up. It makes you appreciate things differently and see things differently,” she said.
People with type 1 diabetes usually get a pancreas and kidney transplant at the same time, since having diabetes tends to degrade kidney function.
The healthy kidney addressed the immediate medical problem, kidney failure, while the new pancreas effectively cures their diabetes, allowing them to produce insulin normally and taking strain off the kidneys.
But the surgery is far less common than a kidney transplant alone, said Okechukwu Ojogho, the surgical director for Providence Sacred Heart Medical Center’s abdominal organ transplantation program. A busy hospital program might do five to 10 of the dual transplants a year.
The surgery also comes with a higher risk of rejection and complication, including clotting in the vein that connects to the pancreas.
Ojogho had performed the surgery about 150 times in his prior role as chief surgeon at the Transplantation Institute in Loma Linda, California, but couldn’t do it in Spokane without approval for a Sacred Heart program.
When the Whites were commuting to Phoenix to keep White’s registration on the Mayo transplant list current, Brandi had a dream. She saw a map of her husband’s recovery, which took the couple back to Sacred Heart.
“I remember thinking that this isn’t where we’re supposed to be. We’re not supposed to be on this list,” she said. “God gave me that vision that we were going to end up having this transplant at home.”
They moved his registration to Swedish Medical Center in Seattle to be closer to home, while Providence worked to get a new transplant program approved. It had been in the works for several years, but transplant doctors said they pushed harder because of White.
“He really inspired us to get this program added,” Ojogho said.
Sacred Heart was approved in early 2016, and White went on their registry for a dual transplant.
“I was so happy and excited,” said Samer Banihani, one of the program’s transplant nephrologists who worked with White. Nephrologists are doctors who specialize in kidneys and work with patients to manage medications and care before and after transplant surgery.
Patients waiting for a dual transplant go on a separate waiting list. They can’t receive organs from a living donor, since humans only have one pancreas and need it to survive.
White’s blood type was O negative, a type known as the “universal donor” because people with O negative blood can donate to any other blood type. Unfortunately, as a recipient, that meant White could only accept organs from another O negative person.
He received an offer for an organ donation, but it ended up not being a good match. Brandi saw it as a good sign.
“That was really disappointing but it also gave us a lot of hope … this isn’t as far out as we thought,” she said. “People wait on those lists for 10 years before they even get a call initially.”
The next call came on Aug. 10, 2016 at 5 p.m., while the couple was at a birthday party in the park. Ojogho was on a plane to Boise to get the organs, and White got a call saying everything looked good later in the evening.
They got to the emergency room around 8 p.m. and waited for test results. White remembered being excited and scared.
“It was just a lot of prayer happening,” he said.
Around midnight, they got confirmation: it was a match. Brandi felt calm as her husband was wheeled into surgery.
“I had so much peace about it. I wasn’t scared, I didn’t think anything bad was going to happen,” she said.
The surgery can take two or three hours per organ, in addition to the time needed to get the organs from a donor. It was a long night for Ojogho, but everything went smoothly.
White remembered being told to stay still as he was taken into recovery. He took the directions perhaps too literally, prompting some teasing from his wife.
“She said I was stiff as a board,” White said.
Brandi remembered how his joy shone through the anesthesia and other drugs he was on.
“He could barely speak but the first thing he said was, ‘I’m so happy,’” she said.
The joy was shared around the hospital.
“The staff in the ICU, everybody at Sacred Heart was excited because this was the first time we did it at Sacred Heart,” Banihani said.
Saed Nemr, another transplant nephrologist on the team, said seeing a patient thrive after surgery is the best part of his job.
“We become like family,” he said. “To see a life change 180 degrees, nothing is more rewarding than that.”
White is now “setting the bar” for dual transplant recipients at Sacred Heart, Ojogho said.
Three months after surgery, he was back at work Wendle Ford. But his experience with a transplant eventually led him to a new career at Providence Holy Family Hospital, where he works in sterile processing, cleaning and sterilizing surgical equipment. He’s thinking about going back to school for a medical career.
Four other patients have now received a dual pancreas-kidney transplant at Sacred Heart, and four more are on the list.
The transplant center serves patients from around the region, which includes much of Eastern Washington, North Idaho and Montana. Offering dual transplants locally means families don’t have to travel even farther, to Seattle, and pay big-city hotel costs while waiting for loved ones to recover from surgery, Banihani said.
Because of medical privacy laws, White will never know the identity of the donor who saved his life. But he knew it was someone young whose death allowed him to keep living.
After surgery, he and Brandi wrote a letter to the family thanking them and explaining what the organs had meant for them.
“Organ donors are absolute angels. They’re a gift from God,” he said.
Brandi said the couple can now focus on things they put off for the five years between her husband’s diagnosis and his eventual surgery. They’re thinking about having children. She’s between jobs now and considering starting her own business.
The Whites credit their families, the congregation at Kingdom Fire Church, God and each other for making it through. But none of it would have happened without the donor.
“They gave us our life. They gave us the ability to dream again and to look forward to the future, and we didn’t have that. We didn’t have that for a while. We really just kind of lived day to day, not knowing what tomorrow was going to bring, and they gave us a lot of hope,” she said.
The couple will celebrate their fifteenth wedding anniversary in July.