From the moment of his birth in 1987, Zach Branson has struggled with a rare disease that causes bile to back up in his body, slowly devastating his liver. Doctors operated when he was a newborn, but they told his parents that the surgery could only delay the disease’s progress.
By last May, after three decades of repeated health scares and unlikely recoveries, time was finally running out. Branson, 33, of Whitewater, Colorado, needed a new liver, his doctors told him, and he needed one soon.
Late last month, he got the news he’d been praying for. His uncle, Troy Branson, 45, had passed all the required tests. Doctors at the UCHealth University of Colorado Hospital in Denver would remove part of Troy’s liver and implant it in his nephew, potentially adding years to his life.
The transplant surgery was scheduled for March 25.
“It meant everything to me,” Branson said. “After struggling with my health for my entire life, it felt like I was getting another chance.”
But that was before the new coronavirus began spreading widely in the United States, upending routine life across the nation and forcing hospital administrators to begin making difficult decisions about how best to deploy limited medical resources. These choices could be particularly devastating for the tens of thousands of Americans awaiting new organs, transplant experts said.
The outbreak has already caused serious disruptions. Doctors in some parts of the country say an inability to quickly test potential donors for the coronavirus has led them to decline viable organs, forcing some ailing patients to wait longer. To avert the spread of the virus among vulnerable patients who must take immunosuppressive drugs to prevent rejection of their new organs, doctors have canceled most routine follow-up visits for transplant recipients. And in anticipation of a surge of coronavirus patients requiring beds in intensive care units, some hospitals are now performing transplant operations only for patients who are at the most dire risk of death.
That may mean delaying kidney transplants for patients who can get by on dialysis, or holding off on heart transplants for those surviving on mechanical heart pumps.
“I think this is incomparable to anything that we’ve experienced before,” said Dr. Emily Blumberg, president of the American Society of Transplantation, which published updated guidelines Monday to help transplant programs deal with the coronavirus crisis. “We’ve been very concerned always about the safety of the organ donor pool, and we pay a lot of attention to lots of things to make that safer. This is a whole different level of concern.”
Branson started to get nervous that his surgery might be in jeopardy when he heard news reports about confirmed cases of COVID-19, the disease caused by the coronavirus, in Denver and across Colorado. Then his transplant coordinator called last week, on Friday the 13th. The operation was off, she told him.
Without a transplant, Branson said his surgeon told him last week that he might only have about 30 to 45 days to live. But he said the hospital considers the surgery needed to remove part of his uncle’s liver to be elective — and therefore nonessential.
Let our news meet your inbox. The news and stories that matters, delivered weekday mornings.
In a statement to NBC News, Dr. Elizabeth Pomfret, the chief of transplant surgery at UCHealth, confirmed that the hospital had suspended some transplant surgeries.
“After careful consideration and consultation with the majority of transplant programs across the country, UCHealth University of Colorado Hospital is putting our living donor liver and kidney transplant program on hold for two weeks, in keeping with recommendations reflecting the national pandemic,” Pomfret said. “We and the remainder of the transplant community do not believe that choosing to immunosuppress a recipient and expose a donor to excess risk right now is in the interest of either the donor or recipient.”
Branson said he is devastated. His sister and other family members were initially outraged. His cousin, Kylie Drum, called the hospital’s decision “a death sentence” and said she hated that “the rug was pulled out from under him.” But Branson said he understood that doctors have to do what’s best for everyone, not just him.
“We were all upset,” said Troy Branson, insisting that he’s willing to risk being infected with the coronavirus if it means saving his nephew. “But as it was explained to me, they’re concerned about space in the hospital beds for people who may need it because of this virus outbreak. You’ve got to understand that we’re small pieces in this puzzle. There’s something much bigger going on, as well.”
As the coronavirus has spread, hospitals across the country have begun limiting elective surgeries, disrupting the lives of thousands of people who normally would benefit from more aggressive medical intervention. Patients with gallstones have been sent home with painkillers, rather than scheduling surgeries to remove their gallbladders. Some hospitals have even postponed operations to remove cancerous tissue from early stage cancer patients, with the goal of keeping limited ICU beds open for the anticipated surge of COVID-19 patients with respiratory failure. People with advanced organ failure and awaiting transplants are among the most vulnerable patients affected.
Melissa Smith, 41, is on the waiting list for a double lung and liver transplant at UW Medical Center in Seattle, which has been at the center of the nation’s coronavirus outbreak. Smith, who suffers from pulmonary fibrosis and liver disease, said the pandemic has added another level of complexity and uncertainty to a system that’s already difficult to navigate.
She has to both avoid getting the coronavirus, and hope that the outbreak doesn’t significantly slow the process for getting new organs. Smith, who has two children, corresponded with a reporter via email, because her condition makes it difficult to speak without losing her breath.
“For now I have been told by the transplant doctor to stay home and focus on ‘living to stay alive,’” Smith wrote. “So I am tethered to my bedroom, which fortunately I have been able to turn into a great space for healing and passing the time with movies, reading, playing games with my kids and visiting people through the sliding glass door of my bedroom.”
So far, the virus has not resulted in a dramatic drop in the number of transplants performed in Seattle and surrounding areas, said Kevin O’Connor, president and CEO of LifeCenter Northwest, a federally designated nonprofit tasked with evaluating and procuring donor organs in the region.
Download the NBC News app for full coverage of the coronavirus outbreak
That’s in part, O’Connor said, because doctors at the University of Washington School of Medicine have ramped up COVID-19 testing capabilities that are not yet available for donors in other parts of the country. But O’Connor said he expects that, as the outbreak worsens, patients will notice a difference.
“I think it would be unrealistic to think or believe that there won’t be some negative impact on the donor and transplantation enterprise in the United States,” O’Connor said. “I just don’t think that’s reality based. So what we need to do is mitigate the risks and find ways to adapt how we do the work we do.”
O’Connor and other experts said they worry about what will happen if a surge of COVID-19 patients leads to a shortage of ventilators in some hospitals. In order to procure organs from donors who’ve been declared brain-dead, hospitals must keep blood and oxygen circulating through their bodies, often for several days, until a transplant team can arrive.
Dr. Howard Huang, the medical director of the lung transplant program at Houston Methodist hospital, shares that concern. But for now, he said the primary challenge in Texas and the surrounding areas is hospitals’ inability to test donors for the coronavirus. Doctors don’t know how dangerous it would be to transplant organs from a patient who’d been infected with the virus, but many are afraid to risk it — especially for lung transplant recipients.
“What really throws a wrench into things is that we don’t have, for now, a rapid diagnostic that can guide this decision,” Huang said. “So we have to ask, ‘Can we wait to transplant this patient?’” And you have to weigh that against the possibility of importing COVID-19 into your center, into a transplant unit, that would basically, in one swoop, disable your ability to do transplants.”
Huang said it’s important for doctors to have honest conversations with patients and let them know that the coronavirus outbreak has led to uncertainty that could affect the timeline of when they’ll receive a transplant.
For now, Branson said he’s taking it one day at a time. He tries to spend as much time as possible in his backyard greenhouse garden, where in addition to vegetables, he’s growing cannabis, to help dull his constant pain. But some days he doesn’t have the energy. He struggles with severe fatigue. His bones are fragile, a result of his failing liver function, and his skin and eyes have grown jaundiced. He’s lost more than 20 pounds in the past few months.
He’s still holding out hope that something will change and that he and his uncle will be allowed to move forward with the transplant. Plus, there’s still the possibility that he could receive a liver from a deceased donor, though he knows the coronavirus crisis might also interfere with that process.
After giving it some thought, he gave his sister the OK to begin making alternative arrangements — just in case. On Monday, she called to make plans for home hospice care. Branson hopes he won’t need it.
But he wants to be prepared.
“I’ve been pretty open to life and death for probably going on a decade or more, knowing that death doesn’t necessarily mean the end of everything,” Branson said. “Whatever is meant to be is going to be. That’s the way I’m trying to approach this.”
Mike Hixenbaugh is a national investigative reporter for NBC News, based in Houston.