On the way home from the old domed courthouse in Norristown, the mood in the car was one of absolute joy. Nate Collins and Jaime Gibson had just sworn an oath to take care of their new baby, Mason, and now — seven months after they’d watched over him anxiously in the intensive care unit — he was officially theirs.
Not that anyone could doubt it. Father and son had worn matching outfits to the adoption ceremony: striped shirts and blue ties with little green whales. They would celebrate with a party that night.
Then the phone rang. It was the Hospital of the University of Pennsylvania, and Collins suddenly remembered he was overdue for news on the other great drama that defined his 43-year-old existence.
For the third time in Collins’ life, his heart was failing. After undergoing transplants at age 20 and then again at 28, all the bad, familiar signs had come back once more. Severe shortness of breath, fluid buildup in the legs, loss of appetite. You think taking care of a baby is a challenge? Collins could barely carry Mason up the stairs.
The doctor came on the line. But instead of good news, it was the worst. Physicians had determined that Collins was simply too sick to have his chest cracked open a third time.
The party was off. Instead, the new father figured he’d better start drawing up his will.
The first human heart transplant was performed a little more than 50 years ago, by South African surgeon Christiaan Barnard, in December 1967. His patient, a 55-year-old grocer, died from a lung infection 18 days later.
These days, more than 90 percent of heart recipients in the United States survive at least a year, according to the federal government’s Organ and Procurement Transplantation Network. Half of heart-transplant patients live at least 11 years, and some, such as Vanguard founder John C. Bogle, live for decades.
No one would ever use the word routine to describe the exquisitely timed transfer of a precious organ from a dead person to someone who would die without it. But the procedure is no longer rare. In the United States, hospitals now perform more than 3,000 heart transplants each year.
Yet when a surgeon is called upon to crack open a patient’s chest a second time, the task becomes more challenging. The chest cavity is full of scar tissue from the first surgery, causing vessels and organs to stick together so much they can be hard to distinguish, said Jon Kobashigawa, director of the heart-transplant program at Cedars-Sinai Heart Institute in Los Angeles.
“Everything looks the same,” said Kobashigawa, a board member of the American Society of Transplantation.
And the patient may have developed antibodies to the first donor heart, meaning the immune system could be more likely to reject a second transplant. Finally, the years of taking steroids and other drugs needed to maintain a donated heart can take a toll on the rest of the body.
Among patients who undergo repeat heart transplants, half are dead after 6.4 years, according to the International Society for Heart & Lung Transplantation. The vast majority of those are second transplants. Third transplants are so rare — just three a year in the United States — there aren’t enough cases to calculate a separate survival rate.
Yet Nate Collins was young. And his own experience showed that every transplant was different. His first one had lasted eight years, and now the second one had been pumping nearly twice that long. Maybe the third time would be even better — if he could find a hospital to take the chance.
A pattern in the family?
Jaime Gibson met Collins in an adult kickball league, and soon hit it off with the friendly, quick-witted communications officer who worked for the state House of Representatives in Harrisburg. She learned that he had undergone two heart transplants, but he did not let the medical odyssey define him.
“He seemed pretty normal,” she recalled.
They started dating in 2011, and before long Gibson, a psychologist who teaches at Pennsylvania Psychiatric Institute, could tell the story as well as Collins himself:
Transplant number one, 1994: Collins had suddenly started to feel out of breath during his sophomore year at Florida State University. The campus health center diagnosed him with asthma, but further tests revealed that his heart was dangerously enlarged — weakening with a speed extraordinary in a 20-year-old member of a college rowing club. And no one was sure why. A virus, perhaps? He went home to Royersford, and within three months he was on the operating table for a transplant at Hahnemann University Hospital. It was rocky going. The donor heart was not a great match, and doctors gave him heavy doses of steroids to keep his immune system from rejecting it.
Transplant number two, 2002: Collins made it past the short-term threat, called acute rejection, but as the years went on, the arteries leading to his donated heart started to thicken. This was a sign of chronic rejection — a slower, subtler process that researchers do not fully understand. But the end result is the same: gasping for breath, swollen legs, a weakening heart. Collins’ doctors from Hahnemann had moved to Penn, so he went there to be evaluated for a second transplant. This time, the experience was even rockier. He got chicken pox. His lung collapsed. He was in the hospital for three months, and at one point called family members to say the end might be near. Somehow, he made it.
The family history: In between those two medical ordeals, Collins’ family had been through another. His brother, Ben, was diagnosed with a failing heart, too, and he got a transplant in 1997. The brothers could not say for sure, but they felt that clues to their condition, in both cases a type of cardiomyopathy, could be found in a childhood tragedy. When Collins was 3 and his brother was 2, their mother died in a mysterious swimming pool accident. It seemed likely that her heart had failed, and that the boys had inherited the condition.
After hearing all this, Gibson was undaunted, and she and Collins decided to spend their lives together. They tried to get pregnant, then decided to consider adoption, especially given the risk that Collins might pass along a genetic heart problem.
Mason was born in December 2016. His birth mother used opioids during the pregnancy, so the baby boy had to spend 15 days in intensive care to get through drug withdrawal.
>> READ MORE: Love in the time of opioids: Adoption connects drug-exposed kids with new families
Collins didn’t feel so hot himself. He was a little out of breath and did not feel like eating. He figured it was the stress of watching Mason in the hospital, and decided not to tell his wife. But his struggles continued once they took the baby home. He got winded just carrying the infant up the stairs.
“Call the doctor, you moron!” Gibson said.
Sure enough, tests revealed Collins needed a third heart transplant, and at 43, he was more than a decade younger than most people getting their first one. The transplant team at Penn told him it had never implanted a third heart in a patient but was willing to evaluate him.
But in February, he was hospitalized with pneumonia, and developed a blood clot in his lungs. What’s more, the years of taking drugs to maintain his two donated hearts had wrecked his kidneys — meaning he would need a kidney transplant, too. In June, he came down with pneumonia again.
By Aug. 1, the day of the adoption ceremony, Collins had recovered and felt pretty good. But on that phone call in the car, the team from Penn said his litany of medical issues was just too grim. No transplant.
In a follow-up letter, the hospital elaborated, citing his kidney disease, the infections, the risk of surgical complications. In short, doctors felt he wouldn’t make it.
The complex system for allocating hearts in the United States is designed to balance two principles. One is utility: getting the greatest number of quality years out of each precious organ. The other is justice: distributing the organs fairly based on medical need. Among patients with the same health status in a given geographic region — that is, those who are equally sick — an available organ goes to the person who has been waiting longest.
But that happens only after a hospital agrees to place the patient on the list. Some hospitals are unwilling to do that for patients over 70, as the operation and recovery are so grueling. Another reason hospitals turn down candidates is fear of “noncompliance” — concern that the patient cannot or will not follow the complicated instructions after surgery. Still another red flag at many hospitals: repeat transplants.
In addition to the medical challenge of such an operation, some hospitals see an issue of fairness, said Lainie Friedman Ross, professor of clinical ethics at the University of Chicago. Should someone get a second heart, or even a third, if others are waiting for their first? Especially since a repeat transplant may not last as long?
Ross, coauthor of the textbook Transplantation Ethics, doesn’t see it that way. When a transplant fails, that patient can be in just as bad shape or worse as the person waiting for one the first time, she said. The goal of medicine is to heal the sick, and someone like Collins has been battling grave health problems for years.
“He’s as deserving as the healthy guy who got sick months ago from some virus,” Ross said.
In Collins’ words, the next few days after he was turned down were like a “mourning period.” He had his will drawn up, then he and Gibson started scouting other hospitals. The couple sent his records to Johns Hopkins Hospital, which said no, too.
Help finally came in 21st-century fashion — via Facebook. When the couple shared their story, they heard from an old classmate of Collins’ at Spring-Ford Area High School in Royersford. She said her husband was an anesthesiologist at Temple University Hospital, where they knew of a heart surgeon who was unusually willing to try hard cases.
His name was Yoshiya Toyoda.
A Target run
The first time the young couple met Toyoda, he walked in, examined Collins, and turned to walk out.
“Are you worried about the scar tissue?” Gibson asked, stopping him.
“No,” he said.
And that was it.
“He’s a man of few words,” colleague Rene J. Alvarez said later.
The data bear out his quiet confidence. The last time the Pennsylvania Health Care Cost Containment Council evaluated heart-surgery programs in the state’s hospitals, the agency calculated survival rates for the patients of 127 surgeons who had performed one type of bypass surgery. Just one of them had more patients survive than expected: Yoshiya Toyoda.
Toyoda trained at Kobe Children’s Hospital in his native Japan and at Massachusetts General in Boston. After a fellowship at the University of Pittsburgh Medical Center, he came in 2011 to Temple, where he also performs lung transplants.
The decision to take on Collins’ case did not belong to Toyoda and Alvarez alone. They were joined by a team of nurses, social workers, therapists, and specialists in ethics, psychology, and palliative care. The decision was unanimous, said Alvarez, a cardiologist and medical director of the hospital’s heart-transplant program. Collins was a go.
“It was his third heart, but this was a young man with a young family,” Alvarez said. “He would give a lot back to society.”
On Nov. 29, Temple placed Collins on the waiting list for a heart and a kidney. On Jan. 21, a day Collins expected to spend watching the NFC championship game between the Eagles and the Minnesota Vikings, his phone rang at 2:30 a.m. The organs were available.
They sped in from Harrisburg, dropping off Mason at the home of Collins’ sister along the way.
Toyoda went to work in the late afternoon, gingerly using forceps and an electrocautery tool to separate Collins’ old heart from the sticky scar tissue that surrounded it. The surgeon had to minimize bleeding while sparing the nerves and lungs. A first-time heart transplant takes three hours; this one took five.
“You just need to be careful,” Toyoda said.
After a short recovery period in the intensive care unit, surgeon Kelvin Lau and his team went to work on the kidney. They were done by the wee hours of the morning, though Collins did not wake until 9 or 10.
Unlike the first two transplants, recovery from this one has been fairly smooth. Five months later, Collins, now 44, has been back to Philadelphia multiple times for biopsies to look for any signs of rejection. His immune system shows no signs of fighting off the new heart. His legs are not swollen, indicating that the heart is pumping strongly enough to circulate his blood and other bodily fluids. Collins was too weak to hold Mason at first but has slowly regained some of the muscle on his thin, 5-foot-8 frame.
A few weeks ago, Gibson felt comfortable leaving her guys on their own, driving off to Target for some shopping.
Collins spent the time playing with his son, just being a dad.