After loved ones’ long-awaited organ transplants, caregivers often find challenges are just beginning

By the time his wife Glenda Daggert received a double organ transplant in 1999, Ira Copperman already had a lot of experience as a caregiver. The couple had been together for over two decades, married for one, and Copperman had become accustomed to helping Daggert manage her diabetes and its complications. Mixing insulin, going along for doctor’s visits, administering injections: it was all routine.

After the transplants, Daggert had a new kidney and a new pancreas, and was no longer diabetic. Yet this was not the ending to all her health issues, nor to Copperman’s role as a caregiver. “Transplantation is not the end story. You don’t stop what you do as caregiver or care partners the day after a transplant,” said Copperman, who serves as vice president of the nonprofit Transplant Recipients International Organization. “It is a lifelong journey.”

For Copperman, as for thousands of other caregivers, it is a lonely journey, too, marked by a profound lack of support for the people helping loved ones through the long process of recovering and adjusting to the complexities of managing post-transplant health. At a minimum, this involves routine check-ups; keeping up with medications, including anti-rejection drugs that can lead to severe long-term side effects; and staying on constant high alert because transplant patients have particular needs when it comes to diet, lifestyle, and medications.

Transplant centers typically manage recipients to the one-year mark, Copperman said. After that, the responsibility for managing recipients’ care is offloaded onto caregivers for the rest of the patient’s life.

Advocates, doctors, and patients, led by the National Alliance for Caregiving (NAC), are trying to improve the outlook for caregivers, proposing reforms that include setting clear guidelines to select, train, and support caregivers early on in the transplant process; offering ongoing counseling to caregivers; and updating the Family Medical Leave Act (FMLA) to allow caregivers paid leave. (For this last measure, the NAC is working alongside other advocacy organizations.)

“In the vast majority of transplant situations, whether that’s solid organ or stem cell or bone marrow, those processes and those centers require that a caregiver is identified in order to be eligible for transplantation,” said Jason Resendez, president and CEO of NAC. “And that’s tremendous because that means the health system and health centers are saying, ‘The caregiver needs to be part of this care team in order to move forward with this life-saving treatment.’ But then once the caregiver is identified, they kind of fall off a cliff.”

The costs of caregiving

While Beth Dickinson Gavney was caring for her husband Dean as he awaited a heart transplant, his health kept deteriorating. She helped him with IV drips and kept the batteries of his left ventricular assist device (LVAD), implanted in his chest to support his heart, charged. The LVAD also had a power cord that came out of her husband’s belly and needed to be plugged into the power outlet at night, so Gavney learned how to do a sterile dressing change each day so that he wouldn’t get an infection.

“That was my first clue that transplant caregivers, we really serve as almost nurses,” Gavney said. “We had home help come once a week to change out the IV, but I had to learn how to work the pump and put in a new bag of the medication twice a day, and keep up with these complex medical charts on Excel.”

When the transplant finally took place at Vanderbilt Health Transplant Center in 2021, Gavney and her husband relocated for three months from Jackson, Mississippi to Nashville, Tennessee. Afterward, they kept traveling to Nashville for follow-up visits — once a month to begin with, then once every three months, then twice a year — that required her presence as well, forcing her to take time off work.

“It was just incredibly difficult. And then to have to keep your job and make sure that you’re going to all of the appointments with him and managing all of that and doing the research,” Gavney said. Not to mention, “[i]t was very cost prohibitive.”

Gavney says she is privileged to have resources to cope with the challenges that come with post-transplant caregiving — a supportive job at the American Cancer Society, a good degree of medical literacy, a family who pitched in with financial support. But she knows many others who don’t have the same luck.

Through the Mississippi Organ Recovery Agency, she and her husband have been mentoring caregivers who live in rural areas and rely on Medicaid. They can’t ask their family for financial support or go to other states to get a faster transplant. “They just sit and they wait and they wait and they wait. When you look at all of the disparities, it’s incredibly unfair,” she said.

The NAC is campaigning to help caregivers deal with financial burdens. “We’re proposing to build on FMLA to include paid time off,” said Resendez. “If you are lower income, someone who’s working a wage-earning job versus a salary job, you’re less likely to have an employer who has their own paid family leave policy. So that’s why I think building on FMLA to establish a national paid family and medical leave policy is the template that we need to adopt.”

Who cares for the caregivers?

Even with all the privileges Gavney recognizes she has, she found the mental toll of caregiving hugely taxing. “You feel like you’re the person who’s got to be the strong person,” she said. “You’ve got to make sure that things are being handled, and you’ve got to be the caregiver, and you’ve got to be the breadwinner, and you’ve got to be strong.”

In its latest Transplant Caregivers Report, the NAC found mental health struggles to be a central area of need for caregivers. Although studies don’t often follow caregivers for longer than a year post-transplant — a common mark for evaluating transplant success — the few that did found that caregivers had increased stress and depression compared to their pre-transplant baselines even 10 years after the transplant. They also experienced the same level of psychological distress as patients, or even higher.

“We’re not screening and referring family caregivers to mental health support,” said Resendez.

Providing that support is an integral part of the changes that he says are required to improve transplant outcomes for patients and their families.

“While oftentimes the medical protocol lasts for, let’s pretend, one month, or 100 days, the reality is that the distress that families experience does not end once a patient has completed their transplant,” said Allison Applebaum, the director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center and the author of the forthcoming book Stand By Me. “And so it’s very important that the psychosocial support continues and endures once patients have completed transplant and are discharged from that team.”

Part of what makes transplant caregiving so challenging is also what makes it so important: The success of the entire process depends on it. “Caregivers are being asked basically to take on responsibilities once assumed only by trained medical professionals, often without training,” said Applebaum. Such responsibilities may include changing bandages, administering IV drips, dressing wounds, dispensing medications, and monitoring vitals.

“It’s so important for caregivers to receive early — I’ll emphasize early — and repeated education and training in all of the medical and nursing tasks they’re going to have to do,” she said.

Family members who provide caregiving services to transplant and other patients provide an estimated $600 billion in unpaid care annually, according to the AARP Public Policy Institute. As of 2024, the Centers for Medicare and Medicaid have introduced codes to reimburse physicians for the time spent training family caregivers, a change intended to help caregivers get dedicated training.

Yang Wei, who has been her son’s caregiver for nearly 20 years, also notes that many caregivers for people with organ transplants receive no preparation before taking on the role. “And when there’s no preparation, you make mistakes and you get a lot of consequences from [those] mistakes,” she said. “So I think support and education are very important.”

When Wei’s son Justin was two, an autoimmune disease compromised his heart functions. In 2018, at the age of 15, he received an organ transplant. “For these complex health care situations, it’s more like a caregiver also has the role of the case manager, because there are so many aspects, [a transplant] affects the liver, the kidney, the heart and all the organs,” she said.

Then there are the logistical challenges. For instance, the day Justin turned 18, everything they knew about his health care changed. His entire care team, whom he had known for years, was changed without a word of notice, as his insurance had stopped covering pediatric care. His friends on Medicaid had until age 21 to switch to adult care, and Justin was unprepared. “I was like, ‘Oh my gosh, if I knew I probably would have said goodbye at the last meeting,’” he said.

He later moved to New York City for college, where he gained new insight into the amount of work that went into coordinating his care. “My mom knew everything about my medical condition. She could repeat my medical file, which was 100 pages long and super huge. But once I moved to New York by myself, I had to be the one responsible for my own health,” he said.

It required a lot of work. “I went to my primary care provider, who referred me to a heart transplant doctor, but also to a nephrologist, an endocrinologist, and a hematologist…They did not talk to each other. So I had to explain to them fully all of these things that happened to me. And if one doctor said one thing, they would not communicate that to the other doctors. I would have to update them,” he said. Justin eventually transferred back home, to California State University, East Bay, to have more family support in handling his health.

‘Caregiving is art’

Being a family caregiver for a transplant patient isn’t just about case management, taking on medical responsibilities, or ensuring financial support when a loved one can’t work. So much more goes into it: understanding nutrition, keeping up with medical literature and new innovations, encouraging exercise, providing emotional support. It’s a lifelong work of lifelong love. “Caregiving is art,” said Wei. “An art that is dear to somebody’s life.”

But while it’s hard to design a system that can help with all the more intangible aspects of caregiving, at least some issues can be addressed.

“If we identify caregivers and screen them for their unmet needs — whether that’s support groups or food assistance, economic assistance or training on how to manage medications or training around cleaning a feeding tube or a port for the delivery of medicines — we know that they will be better able to provide the care that their loved ones need,” said Resendez.

Applebaum also said that transplant caregivers need a “caregiver champion,” a health care professional who’s on the transplantation team.

“It could be a nurse, a social worker, or a psychologist … someone who is the point person who’s going to be the liaison to the family caregiver,” she said. This person should be the caregiver’s point of contact as they navigate the health care system, helping to connect them with training, ensuring that health information is shared among the patient’s care providers, and proactively referring them to support groups and other forms of support.

Some transplant centers already take these steps, said Resendez, “but it’s certainly not uniform across the over 200 transplant centers in the U.S.”

For Copperman, more than two decades post-transplant, his responsibility in supporting Glenda’s health is a fact of life.

“We continue to keep ourselves educated by going to lectures, by reading, by signing up to scientific and medical journals. I get the New England Journal of Medicine every week, and I read it. I read the American Society of Transplantation. I read the Transplant Surgeons magazine,” he said.

Copperman attends his wife’s medical appointments and tests. He helps her liaise between doctors, sharing necessary information and medical history with new care providers, and ensuring any drugs she’s prescribed are compatible with her post-transplant status.

“Glenda is now 24 years post-transplant. She has never had a rejection episode,” he said. “And quite frankly, we think it’s because we do a damn good job together of managing all of this and keeping on top of all of the issues — all of the blood tests, of all the doctors’ appointments, of all the clinical work, everything.”

Copperman prefers thinking of himself as a “care partner” rather than caregiver. He’s grateful that both of their jobs allowed flexibility for doctors’ visits and that they had enough resources to minimize the inevitable worries that come with long-term care for transplant recipients.

“Glenda and I have in some way been able to live a very charmed and lucky life,” he said.

The greatest of luck, he said, is that they were able to age together, and now it is Daggert who sometimes helps him out with his health issues, acting as his caregiver just as he is hers.

Nearly 50 years after they first met, they feel happy to be on this journey together. But they could have used a little more help along the way. “It seems to me that if the medical community and the transplant world recognized that transplantation long-term management is a team sport,” Copperman said, “they could do a far better job.”