When you’re on the waiting list for an organ transplant, it might seem like getting the call that an organ has been identified for you will be the end of the story. Instead, it’s just the beginning of a new chapter—but it’s one you don’t navigate alone, thanks to post-transplant coordinators.
“I tell people, you’ve gotten the gift of life and the gift of a transplant coordinator,” says Blessing Masakadza, a UNC Health post-liver transplant coordinator. “We help patients for the rest of their life. We are their cheerleader and their support system.”
Transplant coordinators are by your side in all steps of the process. A pre-transplant coordinator organizes patient appointments and testing, provides patient education while you wait for a donation and tells you when a match has been found. An inpatient transplant coordinator addresses concerns such as pain and immediate recovery while you’re in the hospital. For everything that comes after, a post-transplant coordinator is an invaluable guide.
Masakadza and UNC Health pediatric renal transplant nurse coordinator Lynn McCoy explain the unique challenges and rewards of the post-transplant period.
A “New Best Friend” Who Understands Complex Care
While people waiting for transplants and their family receive a lot of education before surgery, the heightened emotions around the surgery can make it difficult to remember what comes next.
“You can do all the education ahead of time, but when it comes to the day-of, it evaporates,” says McCoy, who supports pediatric patients and their families after a kidney transplant. “You see parents trying to pull from their memory bank—what happens now? One of the greatest things is to reassure parents they’re not being sent home all alone to take care of their child.”
For McCoy, that means creating a three-ring binder full of information for each family—a schedule of follow-ups, instructions for at-home care and calendars of what to expect in recovery. She talks regularly with parents about lab results and medication needs and is by the patient’s side during doctor’s appointments.
“I tell parents, ‘I’m your new best friend, whether you want me or not,’” she says. “Now, they may not always think I’m their best friend, especially when I’m calling them and telling them to go get some labs done, but it’s about doing what’s best for the child.”
Transplant coordinators play an important role in translating complex information and navigating worries about whether a transplanted organ will be rejected, McCoy says.
“I may have to call a parent with concerns about lab work, before they see any symptoms,” McCoy says. “They get worried that the child will reject the kidney, but I can usually reassure them that the child is OK and the kidney is working. Rejection can happen, but it doesn’t mean you will lose the kidney, if we find it early enough.”
Navigating a New Normal, and Beyond
Transplant coordinators are equipped to support the range of feelings people have after a transplant, Masakadza says.
“It’s a new normal that can be hard for others to understand,” she says. “Others will say, ‘why be sad when you have a second chance at life?’ But there are a lot of concerns when you don’t know how it will turn out. A person may have complications or be discouraged when recovery is difficult. They may be worried about affording immunosuppressant drugs or going back into the real world when they risk an infection. We provide a no-judgment zone and can provide any resources they need, as many times as they need.”
Masakadza helps her adult patients navigate appointments, lab testing, medications and communication between a variety of doctors and specialists. She helps patients identify the supports and resources they need, from mental health support to financial assistance for medication. She also helps patients understand that no matter how well they feel, a transplant coordinator will always be a part of their lives.
“Sometimes, when people are feeling good, they don’t want to come back,” she says, noting that it can be difficult to manage a lifetime of medications, labs and appointments. “It can be challenging when people don’t realize we’re in a long-term partnership, and they might disappear and come back when things aren’t going as well. We will do anything we can so they understand that everything they’re being asked to do is for their benefit. We want them to succeed.”
The Rewards of an Ongoing Relationship and Organ Donation
Masakadza and McCoy say that the rewards of partnering with patients for years are immense, and that patients come to feel like family.
“I have teenage patients that I’ve been taking care of since they were born,” McCoy says. “Those teenagers are doing things their parents never thought they’d get to do—drive a car, get their first job. I love to see the children who couldn’t walk because of their kidney disease run down the hallways after their transplant.”
Masakadza is also grateful to get to see patients reach new milestones.
“It’s amazing to develop these relationships and see people do things they didn’t think they’d live to do, like see a child graduating from school or walk a child down the aisle,” Masakadza says. “I see them do things they couldn’t enjoy when they were sick. They can live life again and do great things that are only possible from the gift of transplant.”
Both coordinators encourage others to learn more about signing up to be an organ donor.
“You can make such a difference with this gift, because an organ donor can save an average of eight lives and a tissue donor can make a difference in the lives of more than 75 people,” Masakadza says. “When I see patients who have received a liver transplant, I’m taking care of people who got a literal second chance. To see the gratitude they have makes this the best job in the world.”
If you have questions about organ donation, talk to your doctor. Need a doctor? Find one near you.