Post-Transplant Coordinators Help Patients Manage Life After Surgery
Following a successful organ transplant, the main goal for most patients is to resume a normal lifestyle as soon as possible. In many cases, though, it’s a tremendous adjustment with significant demands – especially during the first couple of years after transplant.
In the case of a heart transplant, for example, the new lifestyle involves twice-a-week visits to the clinic for the first 6-8 weeks after transplant, various tests and imaging, and extensive lab work. Each organ type has its specific protocols, but all recipients can expect many months of routine clinic visits and ongoing interaction with their transplant coordinators.
Knowing what to expect can make these adjustments easier for patients, and UAB Medicine’s post-transplant coordinators understand these expectations, some of which are discussed below.
Navigating the ‘New Normal’
Each coordinator typically works with hundreds of patients, guiding them through each phase of the transition to the “new normal,” monitoring their progress during the initial months following surgery and ultimately helping oversee a lifetime of care. They manage prescriptions, make clinic appointments, and evaluate each patient’s adjustment to long-term treatment. Any and all problems that arise should be reported to the coordinator. The shared experience of UAB Medicine’s coordinators is a tremendous resource for conveying to patients what they can expect after transplant.
Heart Transplant Coordinator Connie Bowen, CRNP, views the period after transplant as a time of high expectations and risks, much like the first months of childhood.
“I emphasize the fact that we must closely monitor every aspect of a patient’s health right after transplant, and so those demands and expectations are in place day one,” Bowen says. “Our goal is for the benefits of the transplant to always outweigh any risks, side effects, or inconvenience. The heart transplant protocol is extremely demanding, so it’s not lost on me what we ask of our patients, especially in those first weeks and that first year. Twice-per-week visits are difficult for anyone, but many of our patients have long drives to and from clinic. Sometimes they may need to have labs drawn at home. If there’s a serious problem, they must go to the ER. We try to keep in mind the magnitude of what we ask, and we always recognize how much our patients give back to us. When a patient is calling frequently about certain issues, they tend to apologize for ‘bothering us.’ If there’s any detail of post-transplant care that I would focus on, it’s that patients never have been and never will be a bother. This is a lifetime relationship, and success depends on constant communication.”
A Lifetime of Care
That relationship is especially pertinent for heart transplant recipients, whose post-transplant care is for life in most cases.
“We handle everything,” Bowen says. “No care for these patients takes place that we don’t monitor. No changes in their health care routine, no medication prescribed – nothing happens unless we are consulted first. If a patient lives a great distance away and they already have a primary care physician, then we will ask to coordinate care with that clinic for that patient.”
The high expectations and the efforts needed to meet them are not lost on Lung Transplant Coordinator Kandi Amos, RN.
“During the post-transplant education before discharge, I tell patients that life after transplant is going to be a lot of work,” Amos says. “I also explain that each case is unique, because there are several factors that determine how well they recover and how successfully they adapt to some level of constant care. The complications of immunosuppressant medications, for example, vary from patient to patient. If patients know right away that frequent communication is the main method of dealing with any issues that arise, that hopefully creates a path for our long-term arrangement. It’s a special kind of interaction.”
Along with early evaluation and postoperative management, post-transplant coordinators prepare patients for the adjustments required for long-term care. For Shamekia Gullatte, RN, UAB Medicine’s lead kidney post-transplant coordinator, a key part of that transition comes down to one word: independence.
“I think one of the most important changes for our patients happens several weeks after the transplant,” Gullatte says. “When they are in the hospital and during weekly clinic visits afterward, we definitely want to hold their hand through the process and monitor their recovery very closely. We actively stay in touch with them during this time, but after that there is a big shift to independence. It’s their responsibility to let us know about any problems. For that reason, it’s so important to establish a relationship. Calling us any time, about any issue, needs to become their normal routine.”
The demands of post-transplant care can seem overwhelming at times, but both patients and caregivers at UAB Medicine have witnessed the rewards of what Amos calls “our special interaction.”
“We are always celebrating a new chance at life, first of all,” Amos says. “But we also get to watch that new opportunity lead to amazing adaptations and accomplishments. One of our patients recently participated in a 5K run. Watching him go from not being able to breathe to a marathon is a priceless reward.”
Gullatte agrees. “The most satisfying part of my job now is walking into that room after a patient has received a new kidney and saying, ‘Congratulations.’ Our team has helped this person receive a new life, and now I will be the middle person between patient and clinic to continue on this journey with them. It’s heartwarming and rewarding.”
Bowen sees the relationship as an arrangement that goes beyond medicine.
“Once the responsibility for staying in touch with the clinic is out of my hands and in the patient’s, I feel like I’m sending a kid off to college,” Bowen says. “Then the personal connection grows, because over those months you get to know their family members, their interests, and their habits. But mainly I feel a connection, because they put so much trust in us and then reward us again with the aura of gratitude that surrounds these organ recipients. This has been the most rewarding job I’ve ever had.”
Jim Murrell, who received a new heart at UAB Medicine in spring 2013, is an active, vocal example of that personal connection with the coordinators. He maintains a thorough and informative post-transplant website and YouTube channel designed to share his experiences with other organ transplant recipients, donors, and those waiting for a transplant. He often emphasizes the importance of the special connection between patient and coordinator.
“Having a personal relationship with my coordinator means I get a much greater level of care, hands down,” Murrell says. “My coordinator, Connie Bowen, is awesome. She always does what she says she’s going to do when she says she is going to do it. I can give her a call anytime and she gets the prescriptions, makes the appointments, and gets my questions answered. Connie knows me and she knows my entire family. She’s always there.”