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 post-transplant coordinators understand these expectations.
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 post-transplant coordinators is a tremendous resource for conveying to patients what they can expect after transplant.
UAB Medicine’s 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.”Share