After a Heart-Lung Transplant, a Mother Gets a Second Chance
Tandy was still in her 30s when she started experiencing shortness of breath. She was a runner, but suddenly she couldn’t run more than two minutes without having to stop. Eventually, she was diagnosed with pulmonary arterial hypertension (PAH). Despite medical management, her condition deteriorated rapidly. “I had stations set up in the hallway so I could sit and rest on my way to the bathroom,” she said. And trips to the bus stop were a thing of the past.
Three years after diagnosis, Tandy’s health was declining, and she was admitted to a hospital in Richmond, VA. Her pulmonologist told her it was time to consider a lung transplant. Tandy was transported by helicopter to Inova Heart and Vascular Institute. By the time she arrived, she was in cardiogenic shock.
The team at IHVI placed her on extracorporeal membrane oxygenation (ECMO) almost immediately. It happened so quickly that Tandy didn’t even have time to say goodbye to her husband and four children before she lost consciousness. By the time she woke up more than three weeks later, everything had changed.
Lung Transplant as Treatment for Pulmonary Arterial Hypertension (PAH)
Lung transplant is the primary treatment for end-stage PAH, in cases where medical therapy has failed. And after a swift evaluation, it became clear that Tandy was a good candidate, said Shambhu Aryal, MD, a pulmonary and critical care medicine specialist and Medical Director of Inova’s Lung Transplant Program. She was young, otherwise healthy and had good family support. She was also gravely ill.
It quickly became evident that her heart was also impaired. “All patients with PAH have some degree of right-side heart dysfunction because of the elevated pressure in the lungs,” explained Daniel G. Tang, MD, a cardiothoracic surgeon and Director of the Heart Transplant Program at Inova. Often, following a lung transplant for PAH, the heart recovers on its own, he said. But Tandy was also experiencing left-side heart dysfunction. “It became clear she didn’t have adequate heart function, and we listed her for both heart and lung transplant,” Dr. Tang recalled. Three weeks later, on May 8, 2020, she was matched with a donor and received a set of new organs.
Combined heart and lung transplants are relatively rare, and not all transplant centers are equipped to handle them. Inova’s transplant program is one of the most active programs in the Washington, DC, region and the only one to offer heart-lung transplants. “The ability to do this procedure requires close interaction and collaboration between teams on the heart transplant side and the lung transplant side,” Dr. Tang said. “Inova has a unique concentration of expertise to deal with these complex procedures.”
Recovering from a Heart-Lung Transplant
On May 9, Tandy woke up and somehow managed to sit up by herself. In the process, she set off the bed alarm. “I saw all these nurses and doctors running toward my room. When they saw me sitting up, they all stopped and started waving at me,” she said. “Even through their masks, I could tell they were smiling.”
It was the height of the COVID-19 pandemic, and Tandy’s husband and children weren’t able to visit her in the intensive care unit (ICU). “It’s so hard to recover from something like that without your support system,” she said. But her Inova care team worked hard to fill that void. “My nurses were always there, cheering me on,” she said. On her fortieth birthday, they brought her balloons and gifts. Some would stop by to visit even after their shifts had ended. When Tandy was transferred out of the ICU, one of the ICU nurses made a special trip to her new floor to make sure the staff knew exactly how to care for her as she continued to recover.
After she was discharged, Tandy continued to regain her strength at the Inova Rehabilitation Center at Inova Mount Vernon Hospital, relearning how to walk and eat. Nearly three months after she was first hospitalized, she finally returned home to her husband and children, who range in age from 8 to 18. She was thrilled to be home, where she could walk her kids to the bus and cheer from the sidelines at their sporting events. “We’re a family of sports fanatics, and the very first weekend I was home, I was at my son’s baseball tournament,” she said. “At that point, I still needed a wheelchair or walker. A year later, I can walk from the parking lot to the playing field without help.”
Like many transplant recipients, however, her recovery journey was not without some bumps in the road. She developed a cytomegalovirus infection, which lingered for months and sent her back to the hospital for about three weeks. The post-transplant team had to adjust her immunosuppressant medications as she fought the virus, which led to some rejection in her lungs. But with careful monitoring and treatment by her physicians, she was able to clear the virus and reverse the rejection.
Comprehensive Care with Venoarterial and Venovenous ECMO
For Tandy, Inova’s transplant program was truly the right place at the right time. Inova offers venoarterial V-A ECMO, which supports both heart and lung function, in addition to venovenous V-V ECMO, which primarily supports the lungs. “ECMO is an advanced technology, and venoarterial ECMO is much more complex than venovenous ECMO,” said Dr. Aryal. “Few centers have the capability of venoarterial ECMO as a bridge to transplant because it also requires patients to be able to participate in physical therapy while on ECMO.” Fortunately for Tandy, Inova is one of those places.
“We’re also special because we’re not just a transplant center, but an advanced lung disease and advanced heart failure center as well,” said Margaret M. Fregoso, MSN, CANP, CCTC, a nurse practitioner and post-lung transplant coordinator at IHVI. The lung team treats all types of advanced lung disease, including pulmonary hypertension, cystic fibrosis, pulmonary fibrosis and sarcoidosis. “There’s no downside to referring patients to us. Even if they aren’t eligible or are too early for transplant, we are able to manage their illness in our clinics,” Fregoso said.
Dr. Tang and Dr. Aryal stress that referring physicians are a big part of the success of Inova’s transplant program. “Our goal is to collaborate with them, and there are major benefits to starting that collaboration early on,” Dr. Tang added. “If we can see patients early, we may be able to avoid the need for more extreme therapy, like transplants for patients on ECMO.”
Inova Transplant Center: Uniquely Equipped to Help at All Stages of Advanced Lung Disease and Advanced Heart Failure
Collaboration and teamwork are woven throughout Inova’s mission. To successfully perform a heart-lung transplant, the cardiac and pulmonary teams must work together closely. Those partnerships are evident at Inova, said Fregoso, where surgeons and other specialists work hand in hand with one another and with the nurse practitioners who see patients for post-transplant visits. “We’re lucky to have such a collaborative clinic,” she said. “Our pulmonary offices are right next to the offices of our heart counterparts, and we are able to work closely together to monitor and manage patients like Tandy.”
“We’re not just a transplant center but an advanced lung disease and advanced heart failure center as well. There’s no downside to referring patients to us. Even if they aren’t eligible or are too early for transplant, we are able to manage their illness in our clinics.”– Margaret M. Fregoso, MSN, CANP, CCTC
While some transplant centers might perform a higher volume of procedures each year, Inova manages to hit an elusive sweet spot, Dr. Aryal added. “We have expertise treating a good volume of patients, but we’re not stretched too thin,” he explained. “All of our providers are able to get to know every transplant patient, and referring physicians can be confident that every patient will receive world-class care.”
That care continues long after patients heal from surgery. Tandy is still in touch with her nurses, sending them photos of her kids and updating them on the life events, big and small, that she cherishes – walking her youngest son to the bus stop, helping her oldest daughter get ready for her first year of college, and cheering all four kids from the sidelines as they steal bases and hit home runs. Her physicians, too, remain accessible for any questions or concerns that come up. “I’m never afraid to reach out and ask my doctors questions,” she said. “Even if it’s a silly question, they always take it seriously and come up with an answer for me.”
It’s all in a day’s work for Inova’s experienced transplant team, and they wouldn’t have it any other way, Dr. Aryal said. “It’s remarkable seeing that transition from a critically ill patient struggling to live to going back to normal life,” he said. “We have a very close relationship with our patients, and seeing them go back to living their lives is the most gratifying thing.”
Learn More About Inova Transplant Services
The Inova Heart and Vascular Institute in Northern Virginia provides inpatient and outpatient cardiac and vascular care and Inova’s Lung and Thoracic Services provides inpatient and outpatient care for advanced lung disease and transplant.
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