“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.”
Traveling to Penn to for Transplant when Other Centers Wouldn’t Take a Chance on Him
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. But, heart-lung transplant recipient Evan Rood, 32, went the extra mile — or rather, 3,000+ of them to get the care he needed.
In March of 2023, the Seattle architect flew across the country for his five-year follow-up visit with the Penn Transplant Institute 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 such deep gratitude for the team that took a chance on him when other transplant centers would not, he gladly made the long trip. He wanted to spend time with the team with whom he formed deep bonds during his time at Penn Medicine.
A Rare Condition Leads to Heart Failure
Evan first fell ill while in college in Oregon. After he graduated in 2014, he was diagnosed with systemic sclerosis, a rare, chronic autoimmune condition often leading to life-threatening lung and cardiac diseases necessitating transplantation. In 2016, living in Seattle, he was in heart failure, and his condition rapidly deteriorated to the point where he urgently needed a combined heart-and-lung transplantation.
Many lung and heart transplant programs rejected Evan as a transplant candidate due to his challenging underlying diagnosis. Few thoracic organ transplant centers in the country are willing to take on this patient population.
A Beacon of Hope at Penn Medicine
Evan’s cardiologist at the University of Washington in Seattle advised him to reach out to Penn's lung transplant program based on the program's expertise in performing transplants for 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.
During Evan’s five-year follow-up visit, Maria Crespo, MD, his pulmonologist and the medical director of Penn’s lung transplant program, took him on a tour of the new HUP-Pavilion.
“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.”
The post-transplant journey was not without challenges – Evan faced multiple rounds of rejection. But with the unwavering support of his care team combined with his strength and determination, he was able to go home to Seattle in March of 2019 feeling “reborn.”
When it was time for his six-month follow-up appointment he returned to Philadelphia in the fall of 2019. 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 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.
Like Coming Home
During his recent trip back, Evan made time to see many of the members of his care team for happy hours and other non-medical visits. “Penn hires great medical personnel who go above and beyond for their patients,” Evan 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.”
It is unusual and special that Evan continues to receive his follow-up lung transplant care at Penn. But it is not unusual is for HUP staff to connect deeply with patients and their families during prolonged pre- and post-transplant hospitalizations. “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 transplant team members recognize this and personalizes care to each patient.
The Gift of Life
Thanks to his organ donors, Evan has his life back. Today, he stands tall as a living testament to the life-saving impact of organ transplantation and the exceptional care provided by the Penn Transplant Institute. Evan 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.