UCHealth University of Colorado Hospital (UCH) hosted its first in-house paired-kidney chain transplant on Friday, April 27. It involved eight surgeries in the span of a just few hours, four to remove healthy kidneys from donors, four to implant them into the abdomens of patients whose lives they promised to change. This chain of kidneys depended on dozens of people and a great deal of expertise. It also depended on elderberry syrup.
Jenni Uzri had had a bad cold – faucet nose, watery eyes, puffy face, all adding up to misery. Her sister-in-law gave her some elderberry syrup.
Virologists may quibble, and perhaps she was turning the corner anyway, but she quickly felt “90 percent better,” she said.
Uzri, 41, of Colorado Springs, is the sort of person who wants to help, period. She had once considered being a surrogate mom. She had thought about donating bone marrow. Her stark recovery got her thinking about donating a kidney.
“I could be somebody’s elderberry syrup,” she realized.
She could do that by becoming what’s known as an altruistic donor (the term “nondirected donor” works, too, because live kidney donors are all altruistic, really), though she didn’t know the term at the time. She didn’t know much else about end-stage kidney failure and the transplantation process, either. She googled “How do you give away a kidney?”
Uzri explained all this the morning after UCHealth transplant surgeon Dr. Trevor Nydam removed her left kidney. Another UCHealth surgeon implanted it right away into someone she had never met and whose identity was still a mystery to her. In exchange for Uzri’s kidney, that recipient had lined up someone willing to donate a kidney to another complete stranger. And so it went, until, at the end of the eight-person chain, there was a final recipient, Ethan Lamb, 35, of Colorado Springs, who had been on a waiting list for two years.
Uzri’s husband Kevin and her daughter Thais sat on the couch in Uzri’s room in the hospital’s transplant unit. She also has a son, Jason, 17, and an older daughter, Ashley, 18. Before the surgery, Ashley wrote in blue marker on her mom’s belly, “Limit one per customer.”
Uzri has always been a giving person, Kevin said. “That’s what’s beautiful about her, so it was cool. It’s not a big change. She’s always giving somebody something – money, food, advice, help…”
“And a kidney!” Thais finished.
They have a saying in their house, Uzri added: “Love does.”
“I don’t think it’s enough to just say stuff. You’ve got to do stuff. And I love that I don’t know this person at all. I have no connection other than my decision to do something loving for them. I hope they can feel the love with which their new kidney was given,” she said.
The exchange
Linking together a chain of paired-kidney donors and recipients takes some serious doing. UCHealth transplant coordinators such as nurse Angela Miskolci work with donors and patients up-front and coordinate with ClinImmune Labs on the Anschutz Medical Campus to establish how well the kidney sizes, blood types and immune systems among donors and potential recipients match to avoid rejection and improve long-term outcomes. While perfect matches are ideal, vast improvements in antirejection medications have enabled more flexibility, Miskolci said.
UCHealth kidney specialists Dr. Monica Grafals, who runs UCH’s live donor program for kidneys, and Dr. James Cooper decide what combinations will work best and how to chain together the donors and recipients.
“Whenever I see a donor and recipient, I always disclose the opportunity to do exchanges. You can help more people,” Grafals said. When an altruistic donor such as Uzri comes along, she said, it’s “a jackpot” that can set the chain in motion. Then comes a process of patient preparation, scheduling, planning for surgery and postoperative care, and then the transition of patients back home.
In all, scores of UCHealth nurses and staff, and physicians from the CU School of Medicine, were involved in this chain kidney transplantation. The surgeries involved five transplant surgeons and their teams: Nydam started things off with Uzri and Dr. Thomas Bak operated on the other three donors; Dr. James Pomposelli transplanted into two recipients and Dr. Megan Adams and Dr. Kendra Conzen did one each.
The donors must be healthy – no diabetes, no high blood pressure, no obesity, among other things. They undergo testing including blood draws, X-rays, a CT scan, an ultrasound, and EKG heartbeat monitoring. They must do a 24-hour urine collection, and they spend a day at UCH to learn about the transplant process, recovery and possible complications.
It’s a lot. Why bother? As of early May, more than 95,000 people were on the national waiting list for a kidney, according to the Organ Procurement and Transplantation Network (OPTN). They wait, on average, four to seven years. If someone with failing kidneys can find a live donor, they not only improve their odds of a good outcome (live-donor kidneys tend to perform better than those from deceased donors over the long haul), but they don’t have to get in that long line.
UCH has done chain kidney transplants for years, including a pathbreaking transpacific transplantation in November 2016. As with others before April 27, the nonprofit National Kidney Registry helped manage those pairings, and UCH continues to participate in multi-center chain transplants the registry organizes. But UCHealth’s kidney transplant practice is now big enough to match and manage them entirely in-house, Miskolci said.
For the kids
As of this writing, the donors don’t know who got their kidneys, and the recipients don’t know who their donors are. (UCHealth is arranging a get-together for later this month). But there are, in the mix, three pairs who know each other very well.
Donor Marishia Schiebelhut, 46, and recipient Derek Lewis, 45, are a couple. When they met two-and-a-half years ago, he told her he had kidney problems: specifically, focal segmented glomerulosclerosis, or FSGS. It had flared up more than a decade ago; the steroid treatments kept his kidneys at about 35 percent of normal function, but bloated him 60 pounds and made him lethargic and moody. He stopped the treatments and his kidneys stayed stable for years. But by 2016, they were failing. His son DJ was 11; his daughter Laila, 5. He went on the transplant list; his doctors suggested dialysis.
“I didn’t want to sacrifice the time with my kids,” Lewis said. “If that was the only time I’m going to have with them, I wanted to spend it with them.”
Schiebelhut suggested she donate a kidney, either directly or through a paired exchange. He didn’t want her to. All his life, he’s been the guy people leaned on, not the other way around. She persisted; he relented. What changed his mind?
“She was like, ‘If you’re not going to do it for me, you need to do it for your kids,’” Lewis said. “She was right. I needed to try and explore every avenue.”
Plus, Schiebelhut says, it was her kidney, after all.
“This is my life,” she said. “He’s so amazing with his kids, and I wanted him to see his kids grow up.”
They shared an inpatient room. Schiebelhut’s mom, Evelyn Schweikert, was down from Idaho. She donated a kidney 15 years ago. The scar is 18 inches long. Her daughter’s surgery will leave a couple of inch-long scars (for the laparoscopes) and a third from an incision large enough to remove a kidney.
“There’s just no words to describe that gratitude, that thankfulness, just being blessed, and being in a position where I can receive the blessings,” Lewis said. “I’m just eternally thankful.”
Mother-daughter
Across the way, Carina and Tonya Robertson also shared a room. Tonya, 30, the oldest of Carina’s three daughters, had asked her mom what she wanted for Christmas last year.
“A kidney,” Carina said.
Carina, 57, had been on dialysis – three days a week, about four hours each visit – for two-and-a-half years this time. There had been another time, before a 2004 kidney transplant. A nephew had been a match, and the kidney had served admirably for years, until a viral infection caused it to fail.
Carina wasn’t asking Tonya for a Christmas kidney, but it set the wheels in motion. Tonya did the testing and wasn’t a match, so they signed up as for a possible paired-kidney exchange.
“I was more nervous for her, because I’ve been through a kidney transplant,” Carina said.
Carina’s daughter Leyla, 21, sat down with her mom and held her hand. She and Carina talked about how dialysis wiped Carina out for the rest of day, how it made travel difficult, and how it limited her diet – she could only have bananas, papayas and other favorites shortly before dialysis, she had to watch the meats and avoid things like cake.
Back in 2004, when paired exchanges were a rarity, Carina’s husband Mike had wanted to give his wife one of his kidneys. They weren’t a match.
“When Tonya said she wanted to do it, I was amazed,” he said. “There was a sadness, too, that one of our kids had to do it. But at the same time, I was like, ‘Wow, Tonya’s going to save her mom.’”
As part of the chain, Tonya saved more than her mom.
“I thought it was really amazing that they were able to make so many matches, and especially just here in the hospital,” Tonya said. “It felt better to me that it was local.”
Sisters
Grafals, the UCHealth kidney specialist, added sisters Annette Horta, 40, and Crystal Acosta, 31, to the paired exchange just a few days before the surgeries, when it emerged that one of both Horta, a donor, matched one of the recipients and Acosta, a recipient, matched a different donor.
Acosta had found out she had lupus, an autoimmune disease, when she was eight. It’s in remission now, but she has gone through two deceased-donor kidney transplants, in 2009 and 2013, and a dozen years of dialysis, all told. She managed to graduate from high school and earn certification as a pharmacy technician despite that. But, as she put it, “I pretty much had no life during the time I did hemodialysis.”
When it became clear that the second donated kidney was failing, Horta stepped up.
“I felt sad for my sister because she’s been through a lot,” she said. “It would help her and somebody else also. They have a better quality of life – nobody wants to be on dialysis, because that’s pretty much your life if you are.”
Acosta described the chain transplant as “a blessing.”
“My plan is to get back to work as soon as I feel up to it,” she said. “I’m overwhelmed, happy and excited that I’ll be able to feel better.”
‘They’ve given me a gift’
Ethan Lamb was the last stop on UCHealth’s pioneering in-house kidney exchange. High blood pressure had damaged his kidneys. He was on dialysis for two years prior to April 27, going in on Mondays, Wednesdays and Fridays while still working full-time as an insurance claims adjuster. Factoring in travel time, dialysis was a 20-hour-a-week commitment. That meant starting work at 7:30 a.m. and getting home at 9:30 p.m. or later. Even then he wasn’t sleeping well those nights, “because you’re kind of aching from dialysis.”
Lamb says he’s looking forward to being more active in social clubs outside of work, going back to school, spending time outdoors – “You kind of miss some of that because you’re so tired. Just being outside in Colorado.”
When asked what the chain kidney transplant Jenni Uzri set in motion means to him, he choked up.
“My faith says that God led that person to make a decision that has ultimately trickled down to me. It helped four people,” he said. “Through nothing that I’ve done, they’ve given me a gift, and I’ll always be thankful for that. I’ll never be able to truly express how much this kidney means to me.”