Jennifer Nixon (’11) sees both sides of the transplant process. There’s the before — a worry-filled waiting game for word of donation. And then there’s the after, where patients emerge with a whole new lease on life.
“I see these patients super sick in the hospital, and then I see them six months after the surgery when they’ve just gotten back from their daughter’s wedding or the birth of a grandchild,” says Nixon, who for the past five years has worked as a transplant social worker at UT Southwestern, where she works with heart and kidney transplant patients, as well as living kidney donors. “You get to see what you do turn out so beautiful.”
Social workers are a crucial part of a transplant team, and have specialized knowledge in the financial, education and support needs of patients. A large part of Nixon’s job involves connecting recipients and donors with resources and information about support services, including the National Living Donor Assistance Center, which can cover costs associated with travel or lodging for those who live far from their donation site, as well as benefits for lost wages and dependent care during the recovery process.
• The National Kidney Foundation provides a list of helpful resources for living donors and recipients, as well as up-to-date medical and research information.
• The National Living Donor Assistance Center aims to reduce the financial disincentives to living organ donation.
• The United Network for Organ Sharing explains the donation process and offers data, news and perspective on policy surrounding transplantation.
• The Southwest Transplant Alliance, which is part of a nationwide network of agencies that are responsible for coordinating the recovery and allocation of organs and tissues within its federally designated service area.
• The American Society for Transplantation provides a list of resources for transplant patients.
• UT Southwestern Medical Center’s transplant page includes information about conditions and treatments, statistics, locations and more.
She also connects transplant recipients with pharmaceutical programs to help them afford medications — many patients are on a fixed income, disability or Medicare, so their co-pays may otherwise be unaffordable.
“I want donors and recipients to know there is assistance out there,” says Nixon, who in her job also assesses if patients have any psychosocial barriers to success.
It’s important, she says, that recipients and donors have stable housing, people to support them during the recovery period, and access to long-term health care and medication. Additionally, mental and physical health history, including substance use history, are important factors.
“If we identify anything that might get in the way of one’s ability to take care of an organ, we help make those referrals,” Nixon says. “We always want to help someone be successful if they were to give or receive an organ.”
And as the transplant field continues to evolve, social workers will continue to play an important role. There have been several areas that have shifted both in policy and public perception, including the legalization of medicinal and recreational marijuana use, which has recast the conversation about substance use and disqualification of donors/recipients. Additionally, there’s the extension of Medicare benefits, which used to expire three years after a transplant, but can now — depending on qualifications — be kept for life following a procedure.
There also is research like the National Institutes of Health’s HIV Organ Policy Equity (HOPE) in Action clinical trial that tracks outcomes of kidney transplantation from HIV-positive donors to HIV-positive recipients. Such transplants were illegal in the United States until the passage of the HIV Organ Policy Equity (HOPE) Act in 2013, which allows U.S. transplant teams with an approved research protocol to transplant organs from donors with HIV into qualified recipients with end-stage organ failure who also are living with HIV — a practice that, according to the NIH, may shorten the time people living with HIV wait to receive a transplant. UT Southwestern currently participates in the HOPE in Action program.
There’s a lot of information out there, Nixon says — and many resources that can help prospective donors learn more.
“For anyone who is curious about the process, there’s a wealth of information on the websites of centers that do living donation,” she says.