Published on Tuesday, May 22, 2018, at 5 a.m.

James "Lee" Lewis had waited years for a new heart, praying for the day he would be free of the mechanical pump doctors implanted in him in 2015. The device had extended his life after his heart began to fail, but he hated that its wires and the portable battery pack kept him tethered to land and off his fishing boat.

The call from the hospital finally came on the first day of 2018.

Lewis and his wife, Jennifer, drove nearly two hours from their home in rural Bay City to Baylor St. Luke's Medical Center in Houston, one of the nation's most celebrated heart transplant hospitals.

About the series This story is the result of a collaboration between the Chronicle and ProPublica, an independent nonprofit newsroom based in New York. Mike Hixenbaugh is an investigative reporter for the Chronicle. Charles Ornstein is a senior editor at ProPublica. Trouble at St. Luke's

The hospital and its legendary surgeon Denton Cooley performed some of the world's first heart transplants back in the 1960s. In recent years, though, it has had some of the worst heart transplant outcomes in the country. Click here to read the story. A hidden legacy

Over decades, Bud Frazier has played a leading role in the development of mechanical heart pumps and an artificial heart. Out of public view, he's been accused of putting his quest to make medical history ahead of the needs of some patients. Click here to read the story. Help us investigate

Are you an employee, patient or a family member of a patient at the Texas Medical Center? We'd like to hear from you about your experience. Please fill out this confidential questionnaire.

The program, though, had fallen well short of that reputation in recent years.

As detailed in an investigation by the Houston Chronicle and ProPublica, St. Luke's has performed an outsized number of heart transplants resulting in deaths or unusual complications, has lost several top physicians and has scaled back its ambition for treating high-risk patients, all the while marketing itself based on its storied past. Among St. Luke's patients who received heart transplants between mid-2014 and the end of 2016, twice as many failed to survive a year as would have been expected.

A few weeks after Lee received his new heart on the morning of Jan. 2, the Centers for Medicare and Medicaid Services would hit St. Luke's with a serious citation for its poor outcomes. By the time Lee left the operating room, the 52-year-old pipefitter was in worse shape than when he entered.

For the next three months, he remained connected to life-support machines, enduring nearly 20 follow-up surgeries and procedures, before dying on March 23. For many weeks, the hospital withheld key details about his care, the family said, including what went wrong in the operating room during his transplant.

HEART FAILURE: At St. Luke's in Houston, patients suffer as a renowned heart transplant program loses its luster

Along the way, his wife and daughter chronicled Lee's downward spiral in matter-of-fact Facebook posts that belied their sadness and anger but sometimes hinted at their frustration with the transplant program. The Chronicle and ProPublica confirmed their account through a review of medical records, answers to written questions from the hospital and an interview with a physician involved in Lee's care.

Taken together, excerpts from their social media feeds show how loved ones coped after Lee's transplant — his shot at deliverance — went seriously wrong.

Jennifer got her husband out of bed and told him the news. Then she hurried to pack for what she thought would be a two- or three-week hospital stay. She called the principal at the elementary school where she worked as a teacher's assistant, in a classroom for children with autism, to let her know she wouldn't be at work for the foreseeable future.

Excitement and fear swirled inside her. During the long car ride to St. Luke's that morning, Lee had time to think. Tears welled in his eyes, Jennifer said.

"He was afraid something was going to go wrong."

But Lee knew he wouldn't live long without a heart transplant, and the father of two had unfinished plans: He wanted to meet his son's new baby, and in June, he intended to walk his daughter down the aisle at her wedding.

The next afternoon, after hours of surgery, Dr. Masahiro Ono emerged from the operating room. Jennifer, 50, knew right away that something wasn't right. Ono told her the new heart wasn't doing well.

"I remember his face," Jennifer said of the surgeon. "He came out and he was really sad, like he wanted to cry."

More than two months would pass before she learned why.

The donor heart had gone into shock, Jennifer remembers one of the doctors telling her. Another suggested too much time might have passed between when the organ was taken out of the donor and implanted in her husband.

It was difficult for Jennifer to make sense of any of it.

From that point forward, it was the program's surgical director, Dr. Jeffrey Morgan, not Ono, who worked on her husband.

Lee endured a series of procedures in the days that followed. Most critically, he was connected to a life-support machine, called ECMO, that pumps oxygenated blood through the body, doing the work of the heart and lungs.

The goal, Jennifer remembered Morgan saying, was to give the donor organ time to rest and strengthen.

Jennifer prayed that's what would happen.

Days passed, but the heart did not improve. Morgan connected Lee to a pair of external heart pumps — commonly referred to as an LVAD and RVAD — to keep blood pumping through the heart.

Soon after, Jennifer said Morgan approached her in a public waiting room. He explained that, even with the pumps, the donor heart had shown little sign of strengthening. Eventually, he said, her husband would likely need an artificial heart.

Jennifer remembered how much her husband hated his heart assist device and how he'd longed to get out on his fishing boat. He had come to the hospital for a new heart, not another device. She told Morgan she didn't want an artificial heart for her husband.

Morgan said in a statement that he did not recall "the specific details" of the conversation, but Jennifer and her family members said they will never forget his reply.

His answer was, "Do you want him to die?" Jennifer said.

She sat quietly for a few seconds, she said, considering how to answer.

"I said, 'No,'" Jennifer said. "I mean, how do you answer that?"

That settled it. Physicians began making preparations for Lee to receive a Syncardia total artificial heart.

Lee's condition continued to worsen. He suffered a stroke at one point, and for days afterward, Jennifer said he seemed to stare blankly at the ceiling.

She began to lose hope. What's the point of putting an artificial heart in him, she thought, if he never wakes up?

Then, on Jan. 12, he started responding. Jennifer asked Lee if he could hear her, and he nodded. He nodded again when she asked if he was angry.

Jennifer thought she knew why. She surveyed all the tubes and wires coming out of her husband.

"He always said he never wanted to live connected to machines."

Doctors were preparing to implant another one in his chest.

Jennifer could hear the artificial heart pumping as she approached her husband's recovery room. Whoosh! Whoosh! Whoosh! Whoosh!

She knew her husband was going to hate that sound. He still could barely communicate and had been inconsistent in his responses to simple questions — Can you see me? Are you in pain? — but now Jennifer wondered if she should have asked for his permission before allowing doctors to put the device in him.

"It'll be fine; he's alive," her daughter, Ashlee, told her.

"All right," Jennifer replied, sitting at her husband's bedside. "I'll let you tell him, then."

As Jennifer's frustrations and worries mounted, she mostly kept them to herself. But a couple of times, including after she said Morgan failed to update her following a surgery, she vented to her Facebook friends.

"I can't believe the doctor didn't come by!" a friend and former nurse commented.

"I can, he's done it before," Jennifer replied. "But I'm remaining calm."

In a statement, Morgan said, "I recall engaging in near daily discussions with Mr. Lewis's wife and other family members to update them on his clinical condition."

Staying calm became increasingly difficult, especially after Lee suffered a second stroke.

What if her husband's brain was permanently damaged? What if he never got strong enough to qualify for another heart transplant?

Friends from church filled her inbox with messages of support, urging her not to give up hope. She spent long hours at her husband's bedside, asking God to save him.

For the next several weeks, she searched desperately for signs of recovery.

For every hint of progress, her husband endured painful setbacks.

On March 7 — the same day a general surgeon removed her husband's gallbladder and remarked afterward that the organ was "dead" — Ono, the surgeon who performed the initial heart transplant, asked to meet with Jennifer.

When she arrived, a representative from the hospital's risk management department and her husband's cardiologist were there, too.

They explained that at a key stage of her husband's transplant — more than two months and more than a dozen surgeries earlier — Ono tried to use a defibrillator to jolt the new heart into rhythm, a common technique in transplants. But the device did not activate, and Ono had to pump the organ by hand while staff searched for a backup.

Later, in a separate phone call, Ono told Jennifer that nearly 10 minutes passed before another defibrillator was brought into the room, but by then, the damage likely had been done.

"I was so frustrated," Ono said in an interview. "I tried my best to preserve the function of the heart but it couldn't make it. That did happen, and I'm very sorry about that."

In a statement, the hospital seemed to contradict Ono, saying "a backup defibrillator was nearby and readily available." The hospital said it waited until its internal investigation was complete before explaining its findings to the family.

TELL US YOUR STORY: Help us investigate care at the Texas Medical Center

The hospital also sought to minimize the damage done to Lee. "You should know that although the defibrillator didn't function initially, the heart was still beating and circulation was maintained. A second defibrillator was available close by and was utilized. Subsequently, the heart responded appropriately."

The operative note in Lee's medical record, which the hospital provided to reporters at Jennifer's request, makes no reference to the equipment failure.

After the meeting, Jennifer shook with anger.

If she had known about the initial problems during the transplant, she might not have agreed to let the hospital put an artificial heart in her husband, she said.

She might have let him go sooner.

As infections coursed through his body and his organs began to shut down, Lee was taken across the hospital for yet another procedure.

That afternoon, a hospital staff member called Jennifer to tell her something had gone wrong. A thin wire had gotten sucked into the artificial heart during the procedure, causing it to malfunction.

Jennifer rushed to the hospital. By the time she arrived, the medical team had managed to remove the wire and restart the artificial heart — but her husband did not look well.

Later, an anesthesiologist told her what happened: When the artificial heart malfunctioned, the medical team realized they had forgotten to bring the heart's backup driver, an external pump that could have been used to quickly reset the device. Instead, a physician "continuously resuscitated" Lee for 45 minutes until a new driver was retrieved and connected, according to his medical records. During that time, the anesthesiologist told Jennifer, her husband went without normal circulation, likely starving his brain of oxygen-rich blood.

The hospital said in its statement to reporters, "There was emergent rescue equipment readily available at the bedside during the procedure. A full investigation of this case is in process."

That night, Jennifer sat at her husband's bedside, looking into his gray, hazy eyes.

She knew then that he was gone.

Jennifer didn't want to be in the room at the end.

She didn't want her final memory of her husband to be of the lifeless figure in his hospital bed; she wanted to remember him as the hulking man she'd married 32 years earlier. The man who worked long hours as a pipefitter and in other labor-intensive jobs to provide for his family. The man who was baptized only a few years earlier, after finally agreeing to attend church with her.

She learned later that, when Lee first became sick, he had secretly gone to several members of El Campo Church of Christ and asked them to take care of her if anything ever happened to him.

Several of those church members surrounded Jennifer at the hospital on March 23 as she awaited the final word from doctors. They sat with her and prayed silently.

At about 3 that afternoon, the life-support machines in James "Lee" Lewis' room went silent.

Finally, he was free of them.

Mike Hixenbaugh is a Chronicle investigative reporter focused on health care. He recently was awarded the Associated Press Media Editors storytelling award, is a four-time Livingston Awards finalist, and in 2018 was named Star Reporter of the Year for the state of Texas. Before joining the Chronicle in 2016, he was a reporter at The Virginian-Pilot in Norfolk, Va., where his work on the military and veterans affairs was co-published with ProPublica, NBC News and the Investigative Reporting Program at UC Berkeley. He graduated from the University of Akron in 2007, before going to work for newspapers in Ohio and North Carolina. Follow him on Twitter at @Mike_Hixenbaugh. Contact him at mike.hixenbaugh@chron.com.

Charles Ornstein is a senior editor at ProPublica, overseeing its Local Reporting Network. From 2008 to 2017, he was a senior reporter covering health care and the pharmaceutical industry. Prior to joining ProPublica, he was a member of the metro investigative projects team at the Los Angeles Times. In 2004, he was a lead author on a series on Martin Luther King Jr./Drew Medical Center, a troubled hospital in South Los Angeles. The articles won the 2005 Pulitzer Prize for Public Service. He previously worked at the Dallas Morning News, where he covered health care on the business desk and worked in the Washington bureau. Ornstein is a past president of the Association of Health Care Journalists and an adjunct journalism professor at Columbia University. Follow him on Twitter at @CharlesOrnstein.





Elizabeth Conley is an award-winning photojournalist who moved to Houston from Michigan in September 2016. A professional photojournalist for over 20 years, she still feels she has the best job in the world every time people let her share their stories. Not only was she part of the Chronicle staff covering Super Bowl, Harvey and the World Series, but she also received a three-week fellowship through the International Women's Media Foundation to cover the Great Lakes Region in Africa. Follow her on Twitter and Instagram, or reach out to her by email at elizabeth.conley@chron.com.

Lucas Waldron, ProPublica's social visuals and graphics producer, is a motion graphics journalist focused on storytelling across social media platforms. His work has previously been published by The New York Times and KQED.

Design by Jordan Rubio/Houston Chronicle

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