How Cleveland Became the Last-Chance Capital for Heart and Lung Transplant Patients

The patients arrive from everywhere. 

They come from small towns in Appalachia, suburbs outside New York City and communities scattered across the Midwest. Some travel hundreds of miles. Others travel thousands. Many arrive carrying the same question: If nobody else can help me, can Cleveland?

Over the past three decades, an increasing number of patients have found the answer is yes.

Cleveland Clinic has become one of the nation’s transplant powerhouses, performing hundreds of heart, lung and multi-organ transplants each year while attracting patients from every state and dozens of countries. But the story of how Northeast Ohio became a destination for transplant care is about more than surgical volume or medical firsts. It is also a story of coordinators who guide patients through months of evaluations, social workers who help families navigate unfamiliar cities, and housing organizations that provide a temporary home while patients wait for a second chance.

For many patients, Cleveland is not where the journey begins.

It’s where hope survives.

In transplantation, volume matters

The more patients a center treats, the more expertise its physicians and surgeons develop and the more opportunities they have to participate in research that can shape the future of care.

“With volume comes experience,” says Dr. Marie Budev, medical director of Cleveland Clinic’s lung and heart-lung transplant program.

That scale also creates opportunities for clinical trials and access to emerging therapies.

“It allows them access to cutting-edge medications and innovations, as well as interventions,” she says.

Budev has spent roughly 15 years leading the lung and heart-lung transplant program and has watched Cleveland Clinic evolve into a destination for patients seeking some of the most specialized care available.

“Patients come here from all over the world, mainly because of our reputation, and that reputation is based on outstanding clinical care,” she says. “Not only the best care but the care that will lead to better outcomes overall, both short-term and long-term.”

Dr. Kenneth McCurry, surgical director of Cleveland Clinic’s lung transplant program, says the organization’s ambitions have always extended beyond maintaining a successful transplant center.

“Our vision within the transplant center here at Cleveland Clinic has really been to be the world leader in transplantation,” McCurry says.

That mission includes advancing innovation, improving outcomes and training future transplant specialists.

McCurry credits much of the program’s growth to the people behind it.

“What has really facilitated our growth and what we offer to patients has really been our dedicated teams and our people,” he says. “The surgeons and the medical people have exceptional skill, and our coordinators, and everyone else who are members of the program, are just extremely dedicated to what they do, and really go above and beyond that singular focus that’s really allowed us to grow and to offer life-saving therapy of organ transplantation to patients with life-threatening disease.”

Nearly every transplant center evaluates risk differently.

For some patients, that can mean hearing “no.”

At Cleveland Clinic, those cases often receive another look.

About 20% of the lung transplant patients treated at the institution were previously declined from other medical centers, says both Budev and McCurry.

“Many of those patients have been declined elsewhere,” McCurry says. “Particularly our lung program, we are really the center of last resort in terms of offering transplantation to those complex patients.”

The cases can be extraordinarily challenging.

McCurry points to multi-organ transplants involving combinations of lungs, livers, kidneys and hearts. Cleveland Clinic recently completed a lung-liver-
kidney transplant, a procedure that required multiple surgical teams and roughly 16 to 18 hours in the operating room.

The center also performs retransplants for patients whose originally transplanted organs have failed, and frequently combines lung transplantation with major cardiac procedures such as valve repairs or coronary bypass surgery.

“A lot of centers will decline patients for a lung transplant if they have a valve problem, a heart valve problem or blockages in the coronary arteries,” McCurry says.

At Cleveland Clinic, approximately 15% to 20% of lung transplant patients undergo some form of cardiac repair at the same time.

Those kinds of operations require an unusual level of expertise and coordination.

“It is really the team focus and the experience and the skill sets that we have that allow us to do what we do,” McCurry says.

The ability to take on those cases is one reason Cleveland Clinic has become a destination for patients who have been turned away elsewhere. Another is its willingness to push the field forward.

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Extending the donor pool

One of the biggest advances in transplantation has happened outside the operating room.

At Cleveland Clinic’s ex vivo lung perfusion lab, donor lungs can be evaluated and, in some cases, rehabilitated before transplantation.

The technology allows physicians to assess organs that might previously have been discarded.

McCurry describes the process as one of the most important innovations in modern lung transplantation.

“We’re one of the busiest two centers in the world doing this,” he says.

The technology has helped to increase the number of organs available to transplant candidates while also giving physicians greater confidence in organ quality before surgery.

For patients, the impact can be life-changing.

“This decreases waitlist mortality,” Budev says.

The technology is also being used for liver and kidney transplantation, reflecting a broader shift in how transplant programs think about donor organs.

“We are now increasing the number of types of donors that we’re looking at and donors that we would not have accepted in the past,” Budev says.

Those advances have helped more patients reach transplantation.

“Our mission and vision that we’ve created together as a team is that we want to offer hope where there is not hope,” Budev says.

Getting patients to that point, however, requires more than surgery.

A team sport

The transplant journey often lasts months. The surgery may last hours. Before a patient ever reaches an operating room, they may undergo extensive testing, consultations and evaluations involving specialists from numerous disciplines.

Both Budev and McCurry describe transplantation as one of medicine’s most collaborative endeavors.

“Transplantation is really a team sport,” McCurry says.

Patients may meet with pulmonologists or cardiologists, transplant coordinators, infectious disease specialists, social workers, nutrition experts, surgeons and many others before a final decision is made.

At Cleveland Clinic, support begins before patients arrive on campus.

Budev says every patient is assigned a navigator who helps guide them through the process, coordinating appointments, answering questions and helping families understand what lies ahead.

“They are not a number here,” Budev says. “They are someone’s mother, father, sister, daughter, son.”

The navigator’s role extends beyond medical logistics.

Many patients travel while dependent on oxygen. Others need help locating lodging, arranging transportation or identifying nearby suppliers for medical equipment.

The process can begin weeks before patients ever arrive in Cleveland. Navigators help families understand housing options, transportation logistics and what to expect during an evaluation that may span several days.

“We truly know that patients will become part of the family,” Budev says.

That philosophy extends beyond physicians and surgeons wearing scrubs and white lab coats.

It includes social workers helping caregivers find resources, transplant coordinators answering late-night questions, and former patients sharing experiences with those still waiting for their life-changing call.

More than medicine

For patients who travel hundreds or thousands of miles for care, a transplant is not a single event.

It is a process that can consume months of their lives.

Many patients remain in Cleveland or nearby while completing evaluations and awaiting an organ offer. After surgery, many stay for weeks or months more as they recover and attend follow-up appointments.

Housing, transportation and family support become essential pieces of the transplant process.

“We do everything we can to help them in that regard,” McCurry says.

Social workers help families identify lodging options and financial resources. Cleveland Clinic also works with organizations such as Transplant House of Cleveland and offers discounted accommodations for qualifying patients.

Budev says Northeast Ohio’s affordability and accessibility make a difference for many people.

“It’s very easy for patients to come here, have housing and stay in the local area, or travel here at a cost that’s affordable for most people,” she says.

For Aaron Babcock, director of development for Transplant House of Cleveland, the transplant journey extends far beyond the operating room. The nonprofit provides apartment-
style housing for transplant patients and caregivers who travel to Northeast Ohio for treatment.

“The surgery itself is part of a lengthy process,” Babcock says. “No two transplant journeys are the same, but typically families need to be in Cleveland for months at a time.”

Growth in local hospitals’ transplantation programs has been impossible to miss.

“We’ve seen the demand grow firsthand as an organization,” Babcock says. “This demand has steadily grown since we opened in 2014, but particularly in the last three to four years.”

Last fall, the organization expanded to 37 apartments to help meet demand. Even so, Babcock says Transplant House has often been forced to turn away families because no rooms were available. Guests have arrived from 43 states and nine countries.

For many families, the challenge is not simply finding a place to sleep. It is learning how to live in a city far from home while waiting for their transplant.

“The cost of an extended stay at a traditional hotel is financially prohibitive for many, and the sense of isolation that one would feel in that living situation would be profound,” Babcock says. “Lodging costs should not be a barrier to receiving life-saving care.”

Patients and caregivers often arrive carrying more questions than answers. Some have spent years preparing for a transplant. Others receive the news suddenly.

“There are many unknowns,” Babcock says. “Will I or my loved one be listed for transplant? If so, how long will we need to wait? What can we expect as a patient and caregiver?”

That uncertainty can stretch for weeks or months.

Babcock describes the Transplant House as a “soft place to land” for families navigating one of the most difficult periods of their lives. Weekly meals, support programs and informal gatherings help create a community among people who understand the unique challenges of transplantation.

One couple who stayed there, Paulette and Bruce of Columbus, arrived overwhelmed by the reality that they would spend months in Cleveland while Bruce awaited and recovered from a transplant.

What they found was more than temporary housing.

According to Babcock, they frequently spoke about the friendships they formed, the support they found during weekly gatherings and the comfort of being surrounded by people who understood exactly what they were experiencing. Friday social hours, pizza nights and community outings became part of the routine that helped them navigate an otherwise uncertain chapter of their lives.

“We see our guests lift one another up during difficult times and celebrate together when a transplant finally happens after a long wait, or a patient leaves the ICU,” Babcock says.

The need for that support is something physicians see regularly.

Budev notes that many patients arrive dependent on oxygen, accompanied by caregivers who have temporarily left jobs, homes and support systems behind.

For families who remain in Cleveland after surgery, Transplant House marks milestones both large and small. Patients recover in their apartments, attend follow-up appointments and slowly reclaim pieces of everyday life. When they are finally cleared to return home, they ring a bell on the front porch, celebrating not only their recovery but the donor who made it possible.

“It becomes a place where families can adjust to their new normal with the comfort of knowing their care team is only minutes away,” Babcock says.

Yet, for all the innovation, expertise and coordination involved, every single transplantation still depends on one thing.

A donor.

Budev says the generosity of donor families remains the foundation of everything Cleveland Clinic’s transplant teams accomplish.

“The most important thing is that none of this would be possible without the donor family,” she says. “All of this is because of the donor family.”  

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