The surprise of a lifetime: Family friend becomes living liver donor
After experiencing VCU Health’s patient-centered approach to care, a grandmother of 12 says she would “never choose another location to have a transplant done.”
October 21, 2024By Jeff Kelley
As a sheriff’s deputy in rural Virginia, Rachel Scruggs wears 30 pounds of gear, including a bulletproof vest, standard-issue weapon, flashlight, radio and more.
When the chance arose to donate a part of her liver to a longtime friend, Rachel learned that if cleared to move forward, she would not be able to lift more than 10 pounds for three months post-surgery.
Despite support and leniency from her employer, the single mom would still have to cash in all her vacation time. And she’d voluntarily put a scar on her abdomen.
But Rachel did not hesitate.
“It never entered my mind. I was never worried, never concerned about it,” Rachel said of donating her liver to Janet McQueen. “I just couldn’t imagine Janet not being around for her kids and grandkids.”
Janet’s health challenges began in 2019, with symptoms like brain fog, memory loss, and even minor falls. She was hospitalized in 2020, experiencing severe cognitive impairment and inability to remember basic facts — including her husband’s name.
"It felt like my mind knew things, but I couldn’t express them," she recalled.
Doctors discovered toxins were building up in her body due to liver failure. Janet was referred to VCU Health, where she connected to transplant hepatologist Hannah Lee, M.D. She was diagnosed with a form of cirrhosis of the liver and hepatic encephalopathy, a condition that significantly impacts a person’s quality of life and cognitive function.
Liver needed for long-term survival in challenging diagnosis
The clinical term for Janet’s condition is metabolic dysfunction-associated steatohepatitis (MASH), an advanced form of metabolic dysfunction-associated steatotic liver disease (MASLD).
Known as “fatty liver disease”, MASLD is common and experienced by about one-third of Americans. Its risk factors are generally associated with metabolic syndrome disorders like high cholesterol, obesity, and diabetes (alcohol is not a factor) — all issues Janet was fighting. MASH is inflammation in the liver caused by excess fat cells; its presence puts patients at high risk for developing cirrhosis and end-stage liver disease.
In other words: Janet needed a new liver to survive and have a better quality of life long-term. The national Organ Procurement & Transplant Network issues liver transplant recipients a Model for End-Stage Liver Disease (MELD) score, which ranks the more than 9,800 patients on the national liver waiting list by those who need one the most to survive.
“The challenge for MASLD cirrhosis patients is that they have significant symptoms from their liver failure, but have low MELD scores, which don’t accurately reflect how sick they are,” Lee said. “One of the symptoms of cirrhosis that can be debilitating is hepatic encephalopathy, which manifests as cognitive decline, memory issues, and difficulty communicating. Despite the significant symptoms from cirrhosis, with a low MELD score in a case like Janet’s, we needed to look for a living donor. Otherwise, she would be stuck waiting on the transplant list and likely for a long period of time."
Living in the rural town of Farmville, Janet turned to the biggest network she could find to find a donor: Facebook.
(Left) Rachel and Janet are even closer than before after the transplant surgery in July 2023. (Contributed photo)
A plea on social media leads to a ‘God-driven’ surgery
Rachel grew up and played softball with Janet’s daughter, CJ. The five-child McQueen home was a source of fun and always bustling with activity, Rachel recalls.
“They're just really great people, and they were always taking care of everybody's kids and looking out for everybody,” Rachel said. “Everything that they've done for our community and how they treated others just always stood out to me, even from a young age.”
In February 2023, Janet posted on Facebook that she needed a liver. Rachel didn’t hesitate to look into it.
But she didn’t contact Janet directly. Instead, she went directly to VCU Health Hume-Lee Transplant Center. A phone interview ruled out disqualifiers, and staff scheduled Rachel for testing in Richmond, over an hour from her home in Cumberland County. The process took three months to gain approval and because living-donor surgery is elective — unlike the urgency of a deceased donor organ — the transplant could be scheduled.
Janet had no idea that Rachel was her living donor until the day of the surgery, when she spotted her family in the waiting room.
“I knew when I saw her dad that my donor was Rachel,” Janet said. “I just knew that girl was destined to be in my life for the rest of my time here.”
On July 25, 2023, Rachel donated 58% of her liver in a surgery that Janet describes as “God-driven.”
Of the 180 U.S. transplant centers performing living-donor liver transplants, Hume-Lee is one of only 18 that has done more than 200 of them, according to the Organ Procurement & Transplantation Network.
VCU Health’s living donor program was quiet for several years until it was restarted in 2019 under the leadership of Hume-Lee director David Bruno, M.D., living liver donor surgical director Vinay Kumaran, M.D, and living liver donor associate surgical director Seung Duk Lee, M.D. They have performed 100 such surgeries since resuming the program.
Last year, the team utilized VCU Health’s robotic surgical system to assist surgeons when removing a portion of Rachel’s liver. During this surgery, global liver transplant pioneer Gi Hong Choi, M.D., was also on-site to provide additional hands-on robotic expertise. Choi was invited to Hume-Lee to proctor some of their more complex cases and to enhance team members' skills during the initial launch of the robotic program.
With a surgeon at the controls, four robot arms carry a camera scope and instruments into the body via four small abdominal punctures. An incision is made on the donor similar to that of a Cesarean section; the organ is removed and prepared for transplantation into the recipient.
Since Rachel’s surgery was robotic, it allowed for a less intrusive abdominal surgery, speedier recovery and less pain. For recipients, the process is still a traditional “open” surgery.
Rachel Scruggs, a sheriff's deputy, was so pleased with the minimal scarring left by the robotic liver procurement that she felt comfortable wearing a bikini on vacation several weeks later. (Contributed photo)
The fight against MASLD leads to cross-campus collaborations at VCU Health and VCU
While high transplant volumes are good news in terms of saving lives, Hume-Lee physicians and researchers want to put an end to MASLD altogether. They’re working on it through a collaboration with the VCU Stravitz-Sanyal Institute for Liver Disease and Metabolic Health.
The institute’s faculty are global leaders in the study and treatment of MASLD and MASH. Their goal: Identify causes and potential new therapies — such as drugs similar to the GLP-1 receptor Wegovy or Ozempic, which help regulate blood sugar levels treat type 2 diabetes — with the aim of treating or halting the progression of liver disease to avoid the need for a transplant.
Screening can start with a simple blood test whose results help calculate a patient’s risk of liver scarring using the FIB-4 index, developed by the liver institute’s chief clinical officer and professor of medicine, Richard K. Sterling, M.D. For diagnosis, fatty liver disease still requires a liver biopsy, which can be painful and costly.
Looking towards the future, VCU researchers are also trying to identify non-invasive factors that could diagnose liver disease as a means to avoid the need for biopsy.
Strengthening a close bond through the gift of becoming a living organ donor
Janet’s procedure was a success, and her body accepted Rachel’s liver, which grew back to its full size within a few weeks.“When people ask me why I did it, the answer is simple: I just knew it was the right thing to do,” Rachel said. “Janet and her family were always so giving and took care of everyone in Farmville. It felt natural to give back.”
Rachel returned to the field as a deputy exactly three months after surgery. Janet had a longer recovery, with issues around her own incision, and separately dealing with back pain. But thanks to the new liver, her cognitive symptoms and cirrhosis are gone. She and her husband enjoy time with their 12 grandkids, with two great-grandchildren on the way.
She credits Rachel, of course, and thanks VCU Health for improving her health.
“I would never choose another location to have a transplant done,” Janet said. “At VCU, it’s as if you and you alone are the most important of all of their patients in the world.”
A.J. Hostetler contributed to this story.