When Shelley Callaghan of Mequon, Wis., woke up after her transplant surgery in June 2017, she noticed immediately that for the first time in years, she could see her toes.
When she was a teenager, Shelley was diagnosed with autosomal dominant polycystic liver and kidney disease, a genetically inherited disease that caused her liver and kidney tissue to be replaced by cysts that grew larger over time.
“My liver and kidneys had become so enlarged that my abdomen grew to the point where I looked like I was nine months pregnant,” Shelley said. “When I woke up from my transplant surgery, my stomach was flat. It was a very strange experience.”
Though Shelley had been diagnosed with her condition at a young age, she had been able to maintain an active, healthy lifestyle. She participated in triathlons, traveled with her family and enjoyed gardening until her disease decreased her ability and energy. While Shelley had been monitored by a nephrologist from another health system for years, she wanted to take a proactive approach and sought expert opinions from several academic medical centers across the U.S. Shelley’s condition is extremely rare – only .2 percent of the worldwide population has the disease.
“I actually had an MRI and was surprised when a nurse told me that, in addition to my kidneys, my liver had also become dangerously enlarged," she said. “Before, I had only known about my kidneys.” Normally, the liver makes up about 2 percent of a person’s bodyweight. But Shelley’s organs had grown so large that together, they made up 22 percent of her body weight and occupied 75 percent of her abdominal cavity. This caused multiple issues, including malnourishment, compression of vital blood vessels of the liver and intestine, and she was at risk for other long-term complications.
Shelley received a recommendation from another hospital to have a liver resection — surgery to remove part of her liver. Shelley felt unsure and sought other opinions and options. That’s when she met liver transplant surgeon Johnny C. Hong, MD, director of the Solid Organ Transplant Program, a joint program of Froedtert Hospital and Children’s Hospital of Wisconsin. Dr. Hong said only 10 percent of Shelley’s liver was functioning because cysts had replaced much of her healthy liver tissue, and his recommendation surprised her.
“I advised her not to let a surgeon touch her short of a liver transplant,” Dr. Hong said. “Liver resection was not the right surgery for Shelley. Liver transplant was the only definitive treatment.”
“This news was very daunting, but Dr. Hong had a confidence about his decision that made me feel comfortable it was the best option,” Shelley said. “I knew the other options were not ideal and the more time I waited, the less time I had. I decided to have the surgery and was put on the transplant waiting list.”
Dr. Hong said Shelley’s transplant was extremely complex, involving several surgeries and multiple teams of specialists working perfectly in sync. The liver and kidney transplant surgery teams worked with consultant physicians, anesthesiologists, operating room nurses and techs, perfusionists, transplant coordinators, organ preservationists, and dedicated transplant intensive care unit and ward nurses and staff to make the surgery a success. Still, there were challenges.
“Because of the size of the liver, each time we turned it, it compressed the blood vessel that goes to her heart, meaning her blood pressure dropped repeatedly,” Dr. Hong said. “The procedure required expertise and precise teamwork in a facility that is prepared to do everything to save lives.”
Once Shelley’s liver was removed, the donated liver was transplanted. Then, the kidney transplant team performed her kidney transplant. Two days later, surgeons removed her old kidneys. In total, the damaged organs weighed about 35 pounds.
“Aside from the survival benefits patients experience after a liver and kidney transplant, Shelley’s quality of life will improve immensely because she will not have to carry the additional pounds that threatened long-term complications,” Dr. Hong said.
“I know I absolutely made the right decision to trust Dr. Hong and his team,” Shelley said. “They are an amazing, comforting group of people who helped me feel safe during a very uncertain time in my life.” Shelley said having the support from her transplant team and from her husband, family, friends and co-workers got her through.
“Transplant surgery is extremely unnerving,” she said. “When the time actually comes for the surgery, it’s difficult to feel completely ready. But the Froedtert & MCW transplant team does a tremendous job up front of informing patients about what life will look like after surgery. It’s a tough road, and they walked it with me.”
Today, Shelley is looking forward to healing and returning to biking, gardening and traveling when she is fully recovered. She also has another item she wants to address.
“I want to heal some before I reach out to my donor’s family, and I plan to write to them,” she said. “I cannot imagine how difficult it would be in a time of grief, amidst their own suffering and loss, to think about others. That’s amazing. I want to tell them I respect them. I feel so fortunate to have been the one to receive this incredible gift and will do everything I can to take care of their loved one’s organs.”
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I need a liver doctor who deals with a fatty liver ? Is there a specialist in St Louis or Kc