Earlier this month, when Baylor St. Luke’s Medical Center in Houston announced it was temporarily suspending its renowned heart transplant program, it threw the care of dozens of patients into limbo, including some who have yet to hear directly from the hospital.
Now those patients are left waiting to learn if the troubled program will restart Friday, at the end of a two-week internal review, or if it is in store for a much longer overhaul.
Daniel Reed is among them. He and his wife, Nelly, traveled to Houston last weekend from their home, six hours away in the Rio Grande Valley, to search for a short-term apartment where she can stay after he receives a new heart. They were surprised to learn from a reporter that the hospital had put the transplant program on hold after three of the nine patients to receive a heart transplant in 2018 died.
“I sort of feel like we’ve been left in the dark,” Nelly Reed said.
The voluntary suspension, announced on June 1, came after an investigation by ProPublica and the Houston Chronicle revealed persistent problems with the program, which in recent years has experienced an exodus of top doctors and a higher-than-expected death rate among patients within a year of transplants.
Reed is among 89 people awaiting a heart transplant at St. Luke’s, though only a half dozen are high on the waiting list and at risk of missing opportunities for a new heart during the two-week suspension. But if the program doesn’t reopen by Friday, that will trigger additional regulatory requirements that could force it to remain suspended for weeks or months longer, potentially affecting the fate of every patient awaiting a heart at St. Luke’s.
In a written response to questions, a St. Luke’s spokeswoman said the hospital directly contacted the most critically ill patients on its waiting list “and others as available” to make them aware of the suspension. Meanwhile, she said, the hospital is continuing its internal review and “will determine next steps for the program at the end of the 14-day period this Friday.”
The investigation last month by ProPublica and the Chronicle revealed that multiple heart transplant recipients have suffered unusual complications since 2016, including two who had major veins stitched closed during surgery, according to numerous sources. Another patient’s heart transplant failed this year after operating-room equipment malfunctioned during a key stage of surgery.
The problems led a few St. Luke’s cardiologists, starting two years ago, to begin referring some of their sickest patients to other hospitals, and in January, the Centers for Medicare and Medicaid Services cited the program for its poor outcomes.
In response to the news reports, the hospital launched a marketing website, HeartTransplantFacts.org, boasting above-average outcomes following one bad year, 2015. Two weeks later, on June 1, the site was stripped of most of its promotional content and replaced with a video of a St. Luke’s official announcing the decision to suspend the program for 14 days following the two most recent patient deaths.
Given the scope of the problems, some experts question whether St. Luke’s can make all the necessary changes so quickly.
“I seriously doubt, being in transplantation the last 25 years, they are going to be able to do it in 14 days,” said Alexander Aussi, a San Antonio-based consultant who specializes in helping transplant programs satisfy regulatory requirements.
A decade ago, Aussi was a top administrator over a California heart transplant program that suspended operations for more than three years in order to make improvements. He noted that St. Luke’s has recently advertised openings in severalkeypositions related to the heart transplant program, including for a surgeon to replace one who left last month, an administrator to direct heart and lung transplantation and a vice president to oversee all of the hospital’s transplant operations. The hospital also has posted openings for several nursing positions in the heart program.
The wave of openings leads Aussi to believe that St. Luke’s is heading for a major overhaul.
“That’s why I think they are going to extend that inactivation period,” said Aussi, now the chief operating officer of the consulting firm Guidry & East. “Because what they have is symptomatic of a much larger problem that is multifactorial and systemic in nature. It’s not one thing.”
When a transplant program is inactivated for more than two weeks, the United Network for Organ Sharing — or UNOS, the federal contractor that oversees the nation’s organ wait list — imposes additional requirements before allowing a program to restart. That regulatory process, intended to protect patients and ensure the most efficient use of limited donor organs, can sometimes take several months, according to experts.
A program that is inactive for more than 14 days is also required to send written notice to every patient on its waiting list and to assist those who wish to transfer to other programs. In Houston, two other hospitals perform heart transplants. Houston Methodist and Memorial Hermann are each a short walk from St. Luke’s and have posted better patient survival rates in recent years.
As patients await word on the transplant program’s future, St. Luke’s has warned staff members against posting on social media or talking to reporters. Last week, St. Luke’s CEO Gay Nord sent a note to all staff members reminding them not to release “ANY information whatsoever to members of the news media regarding patient care or business operations” without permission from the hospital’s marketing staff, lest they run afoul of patient privacy laws and risk losing their jobs. A staff member promptly forwarded the memo to reporters.
A hospital spokeswoman said the note from Nord came in response to “complaints we received from patients and concerns that personal information was being disclosed inappropriately.”
After the ProPublica and Chronicle reports last month, the hospital released a statement characterizing the news organizations’ findings as “inaccurate” and “incomplete,” although it has cited no errors.
St. Luke’s “Heart Transplant Facts” website touted better-than-expected outcomes in 2016 and 2017, but at least two — and perhaps all three — of the patient deaths this year occurred before the website was launched. A hospital spokeswoman said the website did not include 2018 outcomes because “we do not yet have year-end figures for this year.”
St. Luke’s legacy as a leader in heart care has drawn patients from across Texas and around the country. Famed surgeon Denton Cooley performed some of the world’s first heart transplants at St. Luke’s five decades ago, and the program has performed more than 1,400 since then, among the most in the nation.
That history gave Reed, 47, and his wife confidence after he suffered a major heart attack three years ago, and it is why they have continued to travel more than 300 miles to the hospital from their home in Harlingen, near the U.S.-Mexico border. In 2015, a St. Luke’s surgeon implanted a left ventricular assist device in Reed to keep his weakened heart going long enough for a transplant.
He’s worked to lose weight, exercise and stay healthy since then, hoping to make himself a stronger candidate for a new heart. Nelly Reed quit her job to help take care of her husband and, in anticipation of his transplant, has been trying to find a job near the hospital so she can earn money while he recovers from the surgery.
When the Reeds visited St. Luke’s for their monthly appointment only days before the hospital announced it was halting heart transplant operations, nobody mentioned any of the recent problems. The visit filled them with hope: Five of the six patients in the clinic that day had already received transplants and were thriving — one for 25 years, another for a decade.
“I was really optimistic and really in awe,” Nelly Reed said. “I was under the assumption that they were the best. The treatment there has always been wonderful.”
The couple connected 20 years ago in an online chatroom and, soon after meeting in person, fell in love. Daniel’s heart troubles have been stressful, but Nelly said she has tried to allow him to focus on his health. She handles all of the medical and insurance paperwork and stays on top of his appointments.
“I tell him don’t worry,” she said. “Don’t worry.”
They spent Saturday and Sunday in Houston, filling out applications for work and short-term apartments. It’s hard to be so far from home, Nelly Reed said, but it’s worth it if it means her husband receives the best care possible.
Now, after learning about the program’s voluntary suspension, she’s not sure what to think.
“Do we need to change providers? Doctors?” she said. “I don’t know where to go.”
This article was produced in collaboration with the Houston Chronicle.