Transplant patients are special because their medical care requires tremendous coordination. From the moment they’re diagnosed with an illness and doctors determine that transplant may be the correct path, patients meet with many people, including:
- Physicians
- Nurses
- Financial planners
- Social workers
How do these appointments get coordinated? In the transplant world of hurry-up-and-wait, who ensures that the patient is remaining a good candidate for treatment? In some cases, patients may wait for years before getting the call that there may an organ for them. Who stays in contact with them? Who gets to make that call?
The Path to Becoming a Transplant Coordinator
Transplant coordinators are typically registered nurses or nurse practitioners, meaning they have a bachelor’s or master’s degree, with several years of clinical experience. For Heidi Flanagan, her journey to becoming a lung transplant coordinator started in 1988 when she was hired at UVA as an echocardiographer. She worked her way through nursing school, which was a second degree for her, and wound up getting a job at the bedside on the thoracic-cardiovascular post-op unit.
After some time, she took on another type of coordinator role in the Tissue Adhesive Center. She learned about research and data collection in an extremely detail-oriented role. She continued to find interesting nursing roles around the Medical Center, allowing her to “use her pivot foot,” as she says.
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“There are so many opportunities as a nurse that I can sort of pivot when I need to. If I felt it was time for a change, I could explore other nursing venues and also increase my skill set a bit.”
Heidi moved into a coordinator role in the HIV Ryan White Clinic, where she did a lot of patient education. She also took on all of the OSHA training throughout the hospital.
She had kept in touch with some of her nursing friends from the TCV post-op unit who had since become heart transplant coordinators. It sort of works this way with nursing — as you gain experience, you learn about different roles that may attract your attention.
“I always think it’s important to gain experience and perspective,” Heidi says. At the time Heidi’s practical experience in other roles around UVA made her an obvious candidate for the job.
Educate, Educate, Educate
Patients come to UVA hoping to become a candidate for transplant. The workup is extensive. There are numerous tests, and patients must maintain certain health requirements in order to be listed. There is a lot to be learned, and someone needs to be the teacher.
Heidi works on the pre-op side of transplant, meaning that the skills she learned educating patients in the HIV coordinator role come into play. Patients must be prepared for both ‘yes, you will receive a new lung’ or a ‘no, you’re not a good candidate.’ Both of these outcomes require serious mental preparation and education.
Handing out a ‘no’ may be one of the toughest parts of the job, but Heidi reassures herself and her patients by acknowledging that every lung is “a gift” and that those receiving the organ must be good stewards of it.
“I always tell people, you may meet your donor family one day,” Heidi says.
If a patient does not qualify for transplant, Heidi’s job doesn’t necessarily end there. She may help patients connect with other transplant centers who may evaluate them; she may help them determine another way to medically manage their condition; she may help them make the changes necessary to get a transplant at UVA.
A ‘yes’ does not necessarily mean that the road to recovery will be easy. Transplant is a lifelong commitment and a patient must be aware of the challenges they may face. It is Heidi’s job to help them be mentally prepared for the transplant surgery and life post-surgery.
“It’s important to remain resilient,” Heidi says of both of these outcomes. “There’s a lot of happiness, but when it’s not happy, you have to move on and know that you’ve done your best.”
Support, Coordination & Maintaining Quality Standards
As the title suggests, Heidi spends her days coordinating for patients. There’s a lot of time spent on the phone — giving results, prepping patients for an upcoming test, talking with referring physicians, checking in on waitlist patients. In addition, coordinators also manage a clinic schedule.
Transplant patients must meet rigorous standards. In Heidi’s role, she coordinates with a team of financial coordinators, social workers, nutritionists, physicians and neuropsychologists. “It’s like I’m a party planner,” Heidi joked. “But I can’t really throw a good party!”
If and when a patient does qualify for transplant, Heidi must then complete the lengthy paperwork that is required to be listed by UNOS. Heidi and her team also must rate each patient, giving them a grade of sorts to help determine the significance of their illnesses. UNOS monitors transplant centers to ensure a fair system is being used and all patients are held to the same standard.
Heidi is on the “pre” side of surgery, meaning she meets patients before any transplant has occurred. She chose this because she can watch the continuity of care after the patient receives a new lung. Each organ — UVA transplants lungs, livers, kidneys, hearts and pancreata — approaches the role different, but there are typically separate coordinators for pre-transplant surgery, inpatient care, and post-surgery.
Day-to-day, a transplant coordinator must truly manage a case load of patients. Additionally, they are on-call — calling in prescriptions, checking in on recovering or sick patients, and even making the call that a suitable organ is ready.
Interested in becoming a transplant coordinator?
Remember these three things:
- Nursing is all about communication.
- Gain some practical experience. It’s all about perspective!
- Remain flexible and open-minded.