As the parents of two toddlers, Sarah and Keith James of Yakima are used to navigating the ups and downs of daily life with active boys.
Elias, who is 3, and 1-year-old Lincoln usually sit side by side on the couch while they watch television, occasionally sharing a smartphone screen or snacks. That has its limits, though. Sometimes the brothers need attention separately, and Sarah and Keith will pick one up with a smile and soft words.
They can do that now, four months after they underwent hours of surgery on the same day so Sarah could save Keith’s life.
Sarah and Keith are the first couple in the University of Washington Medicine’s transplant program in which a spouse gave a lobe of liver to the other. On July 20, surgeons at UW Medical Center — Montlake removed one of Sarah’s two liver lobes, comprising approximately 68% of her liver, and transplanted it into Keith.
Living-donor liver transplantation is relatively uncommon in the United States, with about 450 to 500 completed annually, accounting for about 5% to 6% of all transplants, said Dr. Mark Sturdevant of the UW Medicine Department of Surgery. He specializes in liver transplantation and oversaw Keith and Sarah’s surgeries.
“(It) hasn’t been done in the Pacific Northwest to any impactful extent so many of our patients do not have any knowledge of it as an option,” Sturdevant added. It also meant Keith did not have to wait for a deceased-donor organ donation.
In the United States, about 10% to 20% of patients placed on the waiting list will die before they are able to undergo transplant, he said in an email. “Mr. James is a perfect example of how invaluable it is — he most likely would be on the waiting list for a long time.”
Even more unusual is the fact that their living donor transplant was spouse-to-spouse, Sturdevant said. Only about 6% of all living donor liver transplants are performed from a spouse. It was possible for Keith and Sarah because both have B-positive blood type, which is just 8% of the population.
“Sarah’s courageous act allowed him to forgo the dangers of sitting and waiting on the list,” he said.
While they discussed the option, Keith and Sarah always thought of their boys. Every surgery carries some risk, and Keith worried they could both die on the operating table or suffer fatal complications, leaving Eli and Lincoln without either parent. Those were hard conversations.
Sarah understood and respected Keith’s concern. At the same time, there was no question for her. She didn’t want their boys to be without him. She didn’t want to be without him.
“Being faced with losing him — if I could do something, how could I not? This was for all of us,” Sarah said. “I’m just immensely thankful that he’s here. I’m unbelievably thankful I could play such a big part in him being here.
“We are really lucky to have him, and it’s truly the least I could do.”
A good fit
Sarah, who grew up in Toppenish, met Brian while they attended Washington State University in Pullman. That was the fall of 2010, when they became friends through a few shared music classes.
Sarah’s dad, David Story, saw the potential early and said they should date. Sarah insisted they were just friends and they were, until the summer of 2013. They got engaged in the summer of 2015 and married in July 2016, moving to Yakima that December.
Keith had gotten sick a few times in college before graduating with a social science degree, but blamed familiar college habits like too little sleep and eating poorly. After all, it was college. At one point he became quite ill, with severe jaundice and abdominal pain. Though some liver-related levels were high, suggesting it was struggling, tests didn’t identify anything in particular and his symptoms receded.
“Nobody could figure out what was wrong,” Keith said.
He started seeing a specialist in Spokane in 2014, but when Sarah left for graduate school in Connecticut, Keith went to join her. He wasn’t actively sick, so let it go again.
Sarah, who is a speech language pathologist for the Yakima School District, worried about Keith when he got sick, but he’d always get better. When symptoms flared up again in the spring of 2018, Keith began seeing a primary care physician, who ran more tests and referred him to Dr. Asma Siddique, a hepatologist and director of the Liver Center of Excellence at Virginia Mason in Seattle.
“At my first appointment with her, she said it’s one of these three things — or a combination,” Keith said. Those were autoimmune hepatitis, primary sclerosing cholangitis and and primary biliary cholangitis. All are slow progressive diseases that have been increasing in prevalence, according to an article in the Journal of Clinical and Translational Hepatology.
“There can be overlap so it can be hard to diagnose,” Sarah said. Keith was diagnosed in the summer of 2018 with autoimmune hepatitis, but his diagnosis changed over time. In the summer of 2020, he was additionally diagnosed with primary biliary cholangitis.
“He definitely has autoimmune hepatitis. They think based on his age and some other aspects of his transplant, he likely has primary sclerosing cholangitis ... rather than (primary biliary cholangitis) like he was originally diagnosed,” Sarah said.
Basically, his immune system was attacking his liver. A biopsy indicated scarring and the couple learned in the summer of 2020 that Keith would need a transplant, though they weren’t sure when. He was at Stage 4 liver disease; Stage 5 is considered end of life.
“It’s not the news you hoped for,” Sarah said. “Then it was just like this waiting game, with monthly bloodwork.”
His slow decline over a couple years had been hard to notice. Even Keith couldn’t tell exactly how bad his health had gotten. In November 2020, his condition took a “nose dive,” Sarah said. He couldn’t make it through the day without lying down.
“I was not feeling well, was super, super tired and itchy,” Keith said. His skin and eyes turned yellow, indicating jaundice.
“It just got worse and worse and worse,” Sarah added.
Keith and Sarah learned in the summer of 2020 that he would need a transplant. Late last March, he was referred to UW Medicine’s transplant program, with his initial evaluation in May.
That was when they heard about the living donor option offered at UW Medical Center — Montlake. Their conversations became even tougher. “I can’t say we didn’t argue. I can’t say there wasn’t immeasurable stress and that (it) wasn’t hard on us. But that’s OK. And it’s normal,” Sarah said.
“I wasn’t scared; I was worried about him. His odds were much scarier,” she said. But it took some convincing for him.
“When she first talked about it, I didn’t want her to do it. I didn’t want us both to be in surgery at the same time,” he said. The odds of getting a donor were low, though. And in hearing more, Keith and Sarah learned about the high survival rates for the days and months after surgery.
Two full days of multiple tests in early June confirmed they were a great match and solid candidates, having the same blood type and being physically strong, fit and healthy enough for the surgery, without any anatomical irregularities that could cause problems. Sarah’s care teams — each had their own — confirmed her liver was large enough for the donation; surgeons had to leave her with at least 30%.
Keith’s high bilirubin levels prompted doctors to schedule surgery a few weeks after both met all the requirements. Final approval came June 21 for Sarah and June 24 for Keith.
He had to check in to the hospital the night before surgery. Sarah didn’t need to be there until the next morning, but stayed with him in his room. Hospital beds aren’t made for two, but they slept in the same bed that night.
They laughed as they remembered. The bed wasn’t big enough, but it didn’t matter. “I’m clingy,” Sarah said.
Pre-op, post-op and today
The morning of surgery, Sarah headed down a few floors, checking in for her surgery around 8 a.m. It happened in adjoining operating rooms. The liver donor operation takes Sturdevant about five to six hours. That includes anesthesia preparation for the patient.
Keith’s operation was longer, about 10 hours, according to Keith and Sarah. It normally would take eight to 10 hours, Sturdevant said, but was even longer than usual because he had three bile ducts to connect. “Usually there is only one, but that was the anatomy for his liver,” Sturdevant said.
“There are two completely separate and independent operating teams (surgeons, anesthesia, scrub techs, circulating nurse help). I am the only person who participates both on the donor and recipient sides of things,” he said. “Dr. Patrick Healey (from Seattle Children’s Hospital) assisted me with Sarah and Dr. Ramasamy Bakthavatsalam assisted me with the recipient.
“This is our usual team and they both have specific interest and training in partial graft liver transplant, which is required for this type of surgery. This is the main reason that we are the only medical center in the Pacific Northwest to perform (living donor liver transplants — because UW has recruited and supported the surgeons, hepatologists, radiologists, and anesthesiologists who can handle these highly complicated patients and operations.”
Keith and Sarah appreciate their efforts and also mentioned nurse practitioner Winnie Hu and pre-transplant nurse coordinator Rusti Nelson.
“We’re really really thankful to UW — they made the whole process as manageable and not scary as possible; not to say it wasn’t scary,” Sarah said. “They were nothing but phenomenal.”
Keith’s liver failure symptoms disappeared almost immediately. “He has done very well. He has excellent liver function and has suffered no major post-operative complications. He looks amazing actually,” Sturdevant said.
One big challenge was caring for two active young children while they were simultaneously recovering from major surgery. Neither Sarah nor Keith could lift more than 10 pounds for two months. They and the boys moved in with her parents, David and Carrie Story of Yakima, for three months. The Storys cared for everyone on weekday afternoons and evenings. Keith’s parents, Robert and Rebekah James, temporarily moved from South Carolina and cared for them during weekdays and on the weekends for 21∕2 months.
Robert was also Keith’s initial caregiver, for about six weeks, because Sarah couldn’t care for him while also recovering.
Sarah and Keith and the boys moved back into their Yakima home a little more than two weeks ago. Their long scars are healing, and Keith feels better than he has in many years.
Though Keith’s recovery has been relatively smooth, his stamina is low. “I’m tired. There’s some numbness and tingling. I’m definitely not out of the woods yet,” he said. “I still hurt. I’m still sore.”
They don’t know the cause of his liver failure. There’s a chance it could be genetic, Keith said, but though “it’s very unlikely I passed it down to my kids.
“There’s no family history. That was my unlucky card I drew,” he added. “The boys will get bloodwork when they’re teenagers.”
Recovering from transplant surgery requires care, even more so during a pandemic. They limit visitors and are extremely cautious, taking every COVID-19 precaution possible. Keith will be on medication for the rest of his life, and there’s a chance he could need another liver transplant. There is no guarantee how much time Keith will have with Sarah’s liver.
“There’s still a lot of worry,” Sarah said. “I can just try to enjoy the time we have that we wouldn’t have had.”
She’s back to working virtually for the school district and appreciates that she was approved for that. Keith, who had been staying home with the boys for some time before his surgery, will remain home with them as he pursues a degree in elementary education.
He wiped his eyes as he talked about what Sarah did for him, and for their boys.
“I don’t know what to say. I couldn’t be more grateful,” Keith said. “I don’t know if I could love her much more than I did. I’m so grateful that I get to spend more time with our kids and have a family and not be too sick.”
The last year of their lives has been really hard, Sarah said. She encourages people to reach out to their friends and family if they’re having a hard time or going through medical issues.
“Sometimes when the dust settles, it’s easy for things to appear normal from the outside. But it often takes a very long time for things to feel or go back to normal,” she said. “So keep checking on people. Keep loving the people in your lives.”
She also wants people to know if they’re facing anything similar, it’s OK if they don’t always handle it perfectly.
“And the important thing is that we got through it together. And we both did what we could, and did the best we could to support each other and that doesn’t look perfect,” she said.