Celebrating clarity, saving lives

A few days ago, we celebrated a win for everyone affected by kidney disease as one of the uncertainties facing living kidney donors was erased. In response to Congresswoman Jaime Herrera Beutler’s (R-WA) amendment of the Family and  Medical Leave Act, the U.S. Labor Department issued a legal opinion stating its agreement that kidney donation qualifies as a “serious health condition.” The August 28 opinion’s introductory words are as follows: “This letter responds to your request for an opinion letter concerning whether organ-donation surgery can qualify as a ‘serious health condition’ under the Family and Medical Leave Act of 1993 …

Putting Explore Transplant into action

One of the ways we at the Transplant Research and Education Center serve kidney patients is through Explore Transplant, a multi-level consortium of the leading experts in transplant, and a key partner in this endeavor is Health Literacy Media (HLM). In order to get the educational tools we have developed to the people who need it most – the patients – HLM does in-person trainings and workshops with dialysis providers and other professionals caring for people with end stage renal disease (ESRD). To date, HLM has done 125 training sessions. Trainings support discussions about kidney transplant and living donation, to …

Dr. Waterman on resilience and making a difference

We are very excited that TREC’s visionary director, Dr. Amy Waterman, is profiled on The M Dash: Live with purpose, MM.Lafleur’s blog celebrating strong women who make a difference. MM.LaFleur designs wardrobes for women who need to look great in public appearances and behind the scenes but don’t have the time to do a lot of shopping – which fits our director to a T. Dr. Waterman’s profile in MM.LaFleur’s “Women of the Week” column joins those of changemakers like Pulitzer Prize winner Anna Quindlen, actor/reporter Orelon Sidney, Jill Rose of PayPal, and a host of other powerful, creative women. …

It’s time to get your new and improved kidney transplant education materials!

Did you hear? Explore Transplant and Explore Living Donation education has been fully revised with evidence-based health literate best practices, and it’s now ready for purchase! These programs, available in English and Spanish, have helped tens of thousands of kidney patients and their loved ones make informed choices about treatment. Health Literacy Media worked with Dr. Amy Waterman to revise her gold standard kidney transplant education programs with a health literacy lens to bring impactful, patient-centered video and print education to people living with kidney disease. Our Explore Transplant education helps kidney patients answer many commonly asked questions, such as: …

Unequal access to living donor kidney transplant

When someone’s kidneys fail, a transplant may be their best treatment option. Unfortunately, there are not enough kidneys for the almost 100,000 people who are waiting for a kidney in the United States today. The mission of the United Network of Organ Sharing is to reduce the organ donor shortage and ensure equal access to transplants for all Americans. Living donor kidney transplant (LDKT), where a friend or a family member donates a kidney to someone in need, can help more people receive transplants. Every year over 5000 friends or family members donate a kidney while alive to help someone …

Does shipping a kidney from a live donor hurt the chances of a successful transplant?

You’ve watched it unfold on television or the big screen. A doctor, racing against time, removes a kidney and places it into a cooler, and an assistant runs it to a waiting helicopter. It’s flown to another hospital, and is placed into the waiting patient with seconds to spare. In real life, kidneys are often shipped many miles to complete a kidney paired donation (KPD), where a patient who needs a new kidney is matched with a living donor who may live across the country. It’s important to know whether the shipping process is damaging to the kidney or affects the …

Explore Transplant educational materials and trainings available

In this short video, Explore Transplant’s Christina Goalby, MSW and HLM’s Director of Partnerships and Initiatives Allen Todd discuss educational opportunities available to the transplant community. These include Explore Transplant and Explore Living Donation educational materials and trainings to educate dialysis providers about kidney transplant and living donation.

New resource for kidney patients, the UNOS Kidney Transplant Learning Center

Where should a kidney patient or potential living donor go online to get comprehensive information about transplant and living donation? How do they know that the information available online can be trusted to be accurate and unbiased? In June 2016, nationally recognized transplant and kidney disease education experts were invited to take part in President Obama’s Organ Donation Summit to improve outcomes for individuals waiting for organ transplants and enhance support for living donors. One of the experts who spoke at the White House was Dr. Amy Waterman, Associate Professor in the Division of Nephrology at UCLA, and Deputy Director …

My Transplant Coach – A decision aid for patients with kidney failure

Patients with kidney failure have different options when choosing the treatment they feel is best for them, and it’s not always an easy choice to make. According to Dr. Amy Waterman, Professor in the Division of Nephrology at UCLA, and Director of the Transplant Research and Education Center (TREC) at the Terasaki Research Institute, “Patients want to choose the treatment options for kidney failure that help them live the longest. To do that, they have to learn a lot of information about different treatments that can vary based on their health and where they live.” A new resource is available …

Explore Transplant goes international with Explore Transplant Ontario

This October, as the fall leaves changed colors, Dr. Amy Waterman flew to Toronto to represent UCLA, Explore Transplant, and Health Literacy Media at the launch of a provincial initiative to increase the rates of living donor kidney transplants in Ontario. Explore Transplant Ontario is one of the interventions being championed for use within the Access to Kidney Transplantation and Living Donation Strategy, an initiative being sponsored by the Ontario Renal Network (ORN) and the Trillium Gift of Life Network (TGLN) for the next five years. Dr. Amit Garg, Provincial Medical Lead for Access to Transplant and Living Kidney Donation, …

Kidney vouchers – a “golden ticket” for chronological incompatibility

An article recently published in Transplantation1 describes the new kidney voucher program, which allows potential kidney donors to donate at a time that works for them, while “reserving” a priority spot on the kidney transplant waitlist for a patient, often a loved one, to be redeemed later. Drs. Jeffrey L. Veale and Amy D. Waterman, both professors at the University of California, Los Angeles (UCLA), are authors on this article. In the voucher program, a donor chain can be started by a donor who needs to donate before their desired recipient is ready for a transplant. The donated kidney goes to …

Building bridges – A TRI-UCLA partnership

The Terasaki Research Institute (TRI)’s recent Grand Opening celebration, honoring the research and legacy of Dr. Paul Terasaki, was an exciting opportunity to introduce some of the many innovative projects going on at the Institute. The creative workforce behind these projects was present as well, as guests had the opportunity to engage with the group of scientists, researchers, and individuals collaborating together to change the world of transplantation. In addition to the TRI team, the Terasaki family, doctors, educators, researchers, the architect of the beautiful TRI building, and even an accountant involved with the finances of the building were all …

The Terasaki Research Institute grand opening: the legacy of Dr. Paul Terasaki

“We all need inspiration about what is good in this world.” It was only fitting that Dr. Amy D. Waterman made this statement during the Grand Opening celebration of the Terasaki Research Institute (TRI) on September 10, 2017; honoring the day that would have been Dr. Paul Terasaki’s 88th birthday. Dr. Terasaki gave us inspiration on how to do good in this world, and it is our mission at the Transplant Research and Education Center and the Terasaki Research Institute to continue his legacy through research, collaboration and innovation. Dr. Paul Terasaki (1926-2016) was a true leader in the field …

Teaming up for success

Friends and colleagues, I cannot help but feel lucky and grateful that 2017 has brought fresh and exciting new opportunities. In that spirit and effective immediately, I’m thrilled to announce that my research lab, the Transplant Research and Education Center (TREC), is expanding its research and education portfolio. Currently, TREC is an interdisciplinary research and education team that conducts state of the art clinical research to understand and improve important issues affecting transplant outcomes, intervenes to reduce disparities in access to transplantation for diverse patient and donor populations, and tests the effectiveness of interventions to increase transplant referrals and living …

Explore Transplant: the early years

Saint Louis, MO – This month we caught up with Christina Goalby, MSW. Christina is the co-creator of the Explore Transplant Provider Training Programs. She’s responsible for the development of Explore Transplant’s Master Trainers and helps to oversee the quality of ET Trainings. Christina has been a nephrology social worker for more than 20 years. Today she’s a Health Literacy Education Manager at Health Literacy Media, the organization that partners with and administers ET’s programs and services. Christina talks to us about ET’s early days and why she believes in equal educational access for dialysis patients, their families and the …

Each transplant a joy

For former dialysis social worker, Marianne Wilson, there was always a compelling connection between the study of human society, its cultures, healthcare, and human behavior—so much so that an undergraduate degree in anthropology blossomed into a post-college job helping low income city homeowners in St. Louis and shortly thereafter, a degree in social work with a health concentration. “Choosing the health concentration in social work training related to previous research I had done on cultures that effectively utilize a combination of modern and traditional health systems for both medical and mental health care,” Wilson recalled. Wilson did various kinds of …

Kidney transplant and donation education goes national

Have you ever wondered why people choose to donate a kidney? And whether these donors regret their decision later? Amy Waterman first became interested in organ donation over 20 years ago when she conducted surveys of kidney donors as a graduate student in social psychology at Washington University in St. Louis. “It was amazing that hundreds of living donors we surveyed not only told us that they didn’t regret their decision, but also found it to be one of the most profound decisions they had ever made,” said Waterman, now an associate professor-in-residence in the division of nephrology at the …

Transplant, 9,000 miles away

Sometimes you have to travel a long way to understand that health challenges are more universal than you think. Enter my 9,000 mile, 29-hour flight to Singapore recently, which took me very far away from home to discuss an issue that is really close to my heart, helping kidney patients and potential living donors learn about the option of living donation. I had never been to Asia and had never been on a flight that was more than 24 hours long.  But, when the Singaporean Ministry of Health invites you to meet with more than seventy kidney, dialysis, and transplant …

It takes a village: dual perspectives on a partnership

Amy Waterman It takes a village to create and deliver the kind of kidney transplant education that can really meet the needs of healthcare providers, patients, and donors across the United States. To reach 650,000 plus people suffering from end-stage-renal-disease (ESRD). For those of us who work in this field, it also feels as if change is the only constant. While working in my first academic job as a faculty member at Washington University, St. Louis in 2009, I developed an award-winning series of patient education and provider training programs, Explore Transplant and Explore Living Donation, based on my previous …

My transplant origin story

Dear Readers, People always ask me why I work in the field of transplant. I took a memoir writing course where I wrote a piece about the moment I fell in love with this field. I was 28 years old. -Amy Waterman I got an email from the kidney surgeon that morning. The note was direct: “Transplant surgery tomorrow. Need permission from the family to observe. Meet me at 4 pm.” I left my office and walked to the Transplant Center. I didn’t know that I would be meeting patients beforehand, so I hadn’t dressed right for this occasion. Where …