Evan Rood, left, with Maria Crespo, MD, his pulmonologist and the medical director of Penn’s lung transplant program.
It’s not uncommon for patients to drive many miles for their appointments at Penn Medicine. Heart-lung transplant recipient Evan Rood, 32, went the extra mile – or rather, thousands of them. In March, the Seattle architect flew across the country for his five-year follow-up visit at the Hospital of the University of Pennsylvania (HUP). While some patients would choose to get their follow-up care locally, Rood is filled with deep gratitude for the team that not only took a chance on him when other transplant centers would not, but with whom he and his sister, who served as his guardian during the transplant process, formed deep bonds.
Rood first fell ill while in college in Oregon, and after he graduated in 2014, he finally received a diagnosis of systemic sclerosis, a rare, chronic autoimmune condition often leading to life-threatening lung and cardiac diseases necessitating transplantation. By 2016, now living in Seattle, he was in heart failure and his condition rapidly deteriorated to the point he urgently needed combined heart-and-lung transplantation surgery.
Many lung and heart transplant programs rejected Rood as a transplant candidate due to his challenging underlying diagnosis; there are few thoracic organ transplant centers in the country willing to take on this patient population. His cardiologist at the University of Washington, in Seattle, advised him to reach out to Penn's lung transplant program based on the program's experts in performing transplants in patients with this condition. Pulmonologist Maria Crespo, MD, and cardiac and thoracic surgeon Christian Bermudez, MD, medical and surgical directors of Penn's lung transplant program, respectively, accepted his case, and performed his transplant in March 2018.
Evan Rood and his younger sister Mica—who served as his guardian during the transplant process—pose for a photo in March 2023 with some of his care providers on the ICU floor where he spent several months in 2018.
“Evan represented a technical and management challenge considering his need for a combined heart and lung transplant in the setting of his scleroderma and connective tissue disease that makes the postoperative care much more complicated,” Bermudez said. “His drive, willingness to overcome any obstacles, and perseverance stimulated the team at Penn to offer him transplant despite a rapid decline in his health condition. We are proud of what we have accomplished working together with Evan and his family.”
Rood lived at HUP for more than 15 months before and after the transplant, including multiple rounds of rejection, but he was able to go home to Seattle in March 2019 feeling “reborn.” He returned to Philadelphia in the fall of 2019 for his six-month follow-up appointment, and if not for the COVID-19 pandemic, he would have returned for many more visits before his five-year visit in 2023. In the interim, he has stayed in touch with many care team members, who, besides providing medical care, played board games, shared their lunch breaks, and just spent time with him when he lived at HUP. During his recent trip back, he made time to see many of them for happy hours and other non-medical visits.
“Penn hires great medical personnel who go above and beyond for their patients,” Rood said.
“I was in the hospital long enough that I created a community of friends among my nurses, doctors, physical therapists, and occupational therapists ... They meant so much to my family.”
One of them, physical therapist Joe Adler, PT, DPT, worked with Rood in his immediate post-transplant phase in the intensive care unit and was struck by Evan's positive attitude during a difficult time.
“What impressed me immediately about Evan was that he was never going to be defined by his illness but rather by his many interests and desire to live. He is an artistic and thoughtful person and connects with people in a real and honest way,” said Adler, a cardiovascular and pulmonary clinical specialist and acute care team leader. “Evan and his sister are clearly special people, and I felt lucky to have the opportunity to not only work with them under trying circumstances but also get to know them personally.”
Today, Rood lives with his girlfriend, works for an architecture firm, owns his own design consultancy, and coaches high school lacrosse. He says he is under no illusions that he is cured – he takes several different medications daily – but he feels confident about his future, something that wasn’t guaranteed five years ago.
It is unusual and special that Rood continues to receive his follow-up lung transplant care at Penn, but “like us, he is committed and values the team-based approach that we take,” said Stacey Doll, MPA, director of clinical operations for cardiothoracic transplant. It is also significant, but not unusual, for HUP staff to connect deeply with patients and their families during prolonged pre- and post-transplant hospitalizations, Crespo and Bermudez said.
“A bond forms between a patient, their caregivers, and the team as there are often shared goals around the fight to survive and treat a life-threatening condition,” Crespo said. That closeness comes from the wait for an organ that may not come in time to sustain life; the challenges of post-operative recovery; and the re-acquisition of activities of daily living, such as self-care, walking, meal preparation, and driving. “Every case is special and unique ... The HUP staff recognize this and personalize care.”