Heart Failure

A Death in Slow Motion

Elizabeth Conley/Houston Chronicle

A heart transplant. A medical mishap. A drawn-out ending. All told on Facebook.

This story was co-published with the Houston Chronicle.

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, Texas, to Baylor St. Luke’s Medical Center in Houston, one of the nation’s most celebrated heart transplant hospitals.

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

As detailed in an investigation by ProPublica and the Houston Chronicle, 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.

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. ProPublica and the Chronicle 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 Zimmerman Lewis

January 1 •

We just got the call. We're on our way to Houston. Prayers needed that the heart transplant is successful.

Listen to Jennifer describe when the call came in that doctors had a new heart for Lee.

Play the audio

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.

Jennifer Zimmerman Lewis

January 3 •

Lee Lewis was stable through the night. He is still hanging in there. Please continue to pray

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.

Jennifer Zimmerman Lewis is with John Bradley Enochs and 6 others.

January 7 •

Lee Lewis will be having surgery tomorrow morning. Between 8 or 9 the doctor said. They are going to take the ECMO machine off. and attached a LVAD and possibly and RVAD. They are temporary for 1 to 2 weeks. Hope to get him back on the heart transplant list and get him a heart within the time frame. To get on the heart transplant list all his organs need to be working. If the kidneys are not working the doctor said he could do a kidney and heart transplant. We have to hope that the lungs had time to get better. This is his fourth surgery in one week. Please pray that his organs are healthy and to help guide the doctors.

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.

Jennifer Zimmerman Lewis

January 12 •

Today at 3:30 p.m. Lee woke up. Ashlee Nicole Lewis and I were visiting him when he turned and looked at me. I asked him a few questions and he was able to answer them with the little nod to his head. Tiffany Hays and Josh Lewis are staying at the hospital with him tonight. I went and got a room so I can get a good night sleep. I only got 2 hours last night. There were several people in the waiting room. So I couldn't sleep. Plus I was worried about Lee. Today was an amazing day. Thank you all for your prayers . What an amazing God we have. He has been watching out for us.

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 Zimmerman Lewis is with Ashlee Lewis and 6 others.

January 22 •

Lee Lewis will have surgery on Wednesday morning. The doctors feel that this is an opening to get the artificial heart heart. This surgery is more difficult than the heart transplant, said dr. Morgan. Also there's a chance that he could have a stroke due to the fact they have to use blood thinner for the surgery. This is the only way he can LIVE. Doctors do not want to take a chance that he could be getting more blood clots. The blood clots could also kill him. Thank you and please continue with the prayers.

Ashlee Nicole Lewis Lewis is feeling grateful with Jennifer Zimmerman Lewis and 8 others at CHI St. Luke’s Health.

January 24 •

Dad is out of surgery and going to be going into the recovery room so we can see him in a few hours! Everything went smooth and as planned thank the Lord!! He officially has the artificial heart in and it’s working! Praise God!!!

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 Lewis, told her.

“All right,” Jennifer replied, sitting at her husband’s bedside. “I’ll let you tell him then.”

Jennifer Zimmerman Lewis

January 25 • Houston, TX •

Another surgery where dr. Hasn't told me anything.

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.”

Jennifer Zimmerman Lewis

January 26 • Houston, TX •

Lee Lewis CAT scan came back from this morning. He had another stroke. They said that it is on the left side this time and they did say that it is smaller. They said that the CT scan shows no bleeding. His toes are turning black do to the blood pressure medicine he is on. They have started to decrease the blood pressure medicine. There is not as much drainage from the chest tubes from surgery yesterday. So that is also good news. The doctor said that we really won't know if he is paralyzed or if he has any memory loss, until he can fully wake up. Without him being able to talk, because of the trach, we may not be able to find out all the side effects from this stroke.

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.

Jennifer Zimmerman Lewis is with Ashlee Nicole Lewis and 5 others

January 29 • Houston, TX •

Lee Lewis finally responded to a question. I asked him if he could hear me, he shook his head yes.

Jennifer Zimmerman Lewis is with Ashlee Nicole Lewis and 7 others

February 1 • Houston, TX •

He must be on some really good pain medicine. He was smiling for the first time. They went up on his, blood pressure medicine, norepinephrine. And they were able to pull 3 litters of fluid yesterday. They're hoping to do the same thing today. Dr. Castillo just spoke to me they want to try to close him. But they want to wait until more fluid is taken off of him. It gives them more room to be able to close. So no surgery is scheduled for today for closing.

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

Jennifer Zimmerman Lewis

February 11 •

I just received some bad news. The doctor said that the infection is in his blood stream. Friday that is why they replaced all the lights. All but one foreign line was replaced. And that was his artificial heart. They said that all they can do is give him a stronger antibiotic. And they'll watch his numbers to see if they decrease. If it does not decrease then it means that the infection is in his artificial heart. If it's in his heart , it will disperse the infection to his organs.

(Jennifer meant to write, “that is why they replaced all the lines,” referring to the tubes used to draw blood, give medications and perform dialysis.)

Jennifer Zimmerman Lewis is with Ashlee Nicole Lewis and 6 others.

February 22 •

I found out today that they are going to take Lee to surgery this Afternoon. I was not given a time except between one and 5 PM. They’re going to cut his chest open cleaning out and look around.their trying to find answers. I also found out due to the stroke that he had, his vision may be impaired some. We don’t know how much he can see. I just found this out even though he had a stroke several weeks ago. The nurse told me after he read Lees notes.

Jennifer Zimmerman Lewis is with Karen Sharp and 9 others.

March 4 • Houston, TX •

Lee Lewis has been bleeding since surgery. Dr. Chatterjee just called me and said that he has had five units of blood. He called general surgery and they’re going to go back in to try to stop the bleeding. I’m on the transit heading up to the hospital.

Jennifer Zimmerman Lewis

March 7 at 9:44pm • Houston, TX •

The gallbladder was removed and it was severely infected. His blood pressure came up also. He’s still asleep from the sedation. I’m going to head to the house in about 30 minutes. Let him get a good nights sleep.

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.”

Jennifer Lewis talks about Lee with her daughter, Ashlee, in Bay City, Texas, in April. Elizabeth Conley/Houston Chronicle

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.

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.

Ashlee Nicole Lewis is feeling hopeful with Jennifer Zimmerman Lewis and 11 others.

March 18 at 9:34pm • Van Vleck, TX •

Today we had a meeting with the doctors so we can have a better understand of what my dad’s body is going through. As of now the highest priority for my dad is to get a hold of the infections. He has no more fungal infections in his blood but he does have the VRE in his blood which is a bad situation but he does have a fighting chance. His lungs are doing great but they can’t put the trach collar on him due to his body going through a septic shock which in short caused high lactic levels in his blood which pretty much makes his body think it isn’t getting enough oxygen. We were concerned of liver failure but we were assured that the liver is still functioning. His liver was shocked which means it isn’t in great condition but is still holding on. It will take time for the liver to get better but it probably won’t get back to 100%. His kidneys will most likely not come back due to being on dialysis for so long but that isn’t high on our list of worries because he can always get a transplant which is a lot easier than a heart. I hope that helps everyone out a bit for some information and it was a lot of information to interpret so I hope I didn’t confuse any of you😁 Our prayers for now is to let him be healed of all infections so he can begin on the road to healing from the surgeries and trauma his body has gone through! Thank you everyone for keeping up and praying!!

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 Zimmerman Lewis is with Ashlee Nicole Lewis and 9 others.

March 23 at 11:04am •

Lee Lewis was diagnosed brain-dead. It was from a procedure that was done on Wednesday. The family is meeting here at CHI St. Luke’s. This afternoon I am going to turn the machines off. He was a loving husband, father, and friend. I am going to do a celebration of his life in a week or two. And I do know it will be in EL Campo at church of Christ which is our other family.

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 o’clock that afternoon, the life-support machines in James “Lee” Lewis’ room went silent.

Finally, he was free of them.

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Charles Ornstein is a senior editor at ProPublica, overseeing the Local Reporting Network. From 2008 to 2017, he was a senior reporter covering health care and the pharmaceutical industry.

Mike Hixenbaugh is an investigative reporter at the Houston Chronicle. Email him at mike.hixenbaugh@chron.com and follow him on Twitter at @Mike_Hixenbaugh.

Design and production by David Sleight and Hannah Birch.


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