Cecelia Dukuly woke up in the hospital with a scar on her abdomen and no recollection of what happened or how she got there.
“I was in complete shock,” she said. “Then, I found out I had been given the gift of life.”
An Urgent Transplant
A week earlier, Cecelia, or Cece, as friends and family call her, was transferred to Froedtert Hospital, part of the Froedtert & the Medical College of Wisconsin health network. Cece had been diagnosed with autoimmune hepatitis, or AIH, a condition that causes the body’s immune system to attack its liver cells. AIH is more commonly a chronic, progressive disease. Its symptoms are gradual and the liver deteriorates slowly. But for Cece, the onset was sudden and an effective treatment was needed quickly.
“When Cece came into our care, she was on a ventilator and had already been started on high-dose steroids,” said Aiman Ghufran, MD, hepatologist and MCW faculty member. “Her body was not responding to the immunosuppressive therapy. There was an urgent need to get her evaluated for a transplant.”
The transplant evaluation is a collaboration between all members of the care team, including physicians, surgeons, nurses, pharmacists, social workers, counselors and coordinators. Shannon Sova, BSN, RN, was the pretransplant coordinator for Cece’s evaluation.
“My ultimate goal is to get patients evaluated and listed in the shortest period of time,” Sova said. “Cece was listed, with the highest priority status, for an organ.”
The Only Option
She received a new liver on Oct. 19, 2017, just three days after being admitted to Froedtert Hospital. Transplant surgeon Johnny Hong, MD, director of the Solid Organ Transplantation Program and MCW faculty member, led the transplant.
“For patients with acute liver failure, there is a very narrow window of time for treatment,” Dr. Hong said. “These patients deteriorate extremely rapidly. With a nationwide shortage of donor livers, we knew we needed to act fast in order for Cece to be an eligible recipient. And for Cece, transplant was the only option.”
Cece recovered in the transplant intensive care unit, cared for by the same clinical team that cared for her before her transplant. “Everyone was incredible,” Cece said. “I would never go to any other hospital.” Cece grew especially close to her posttransplant coordinator, Jenelle Griebling, BSN, RN.
“We follow these patients for life,” Griebling said. “We organize all of their appointments, manage their lab work, see them in clinic and communicate with their physicians. Our job is to be the patient’s lifeline to the transplant team and support them however we can.”
Dr. Hong said the comprehensive continuity of care within the transplant program, combined with an intensive care unit dedicated solely to transplant patients, are reasons for the program’s success.
“Our comprehensive liver transplant program cares for and transplants extremely high acuity patients at a proportion that is nearly three times higher than national rates,” Dr. Hong said. “We treat some of the sickest liver patients in the country, yet the data shows our patient survival outcomes exceed the national average.”
According to data released by the Scientific Registry for Transplant Recipients, the Froedtert & MCW Liver Transplant Program’s one-year survival rate is 98.15%. The national average is 93.37%.
Grateful for Support
Cece said she feels blessed to have the support of her care team for everything from managing medications to navigating the emotional experience of corresponding with her liver donor’s family. Cece’s donor was a teenage girl, and the donor’s mother reached out to Cece with a letter.
“I was shaking so much and crying, knowing that a part of her daughter lives on in me,” Cece said. “Jenelle was there for me through all of that. It just brings me chills.”
Three years after her transplant, Cece is healthy, happy and enjoying life with her children and grandchildren. She is used to her regimen of immunosuppressant medications that help prevent her autoimmune hepatitis from recurring, and she never misses a follow-up appointment. Cece hopes to someday travel back to Liberia, the country in West Africa where she grew up.
“My faith helped me through this,” Cece said. “No matter what you’re going through, do not give up. This wasn’t about luck for me, this was a miracle.”
Organ Donation's Ripple Effect
In Wisconsin alone, more than 1,600 people need lifesaving organs. A single donor can save eight lives and change the lives of 75 people. Donations can include liver, kidneys, heart, lungs, pancreas, intestines, tissue and corneas.
Become an Organ Donor
To learn more about how you can become an organ donor, visit froedtert.com/donatelife.