At age 35, Justin Young's liver was failing, though he did not yet know it. His condition was so grave that by the time he found out, it was almost too late. That he can now tell his story, however, is living testament to the exceptional capabilities of the Froedtert & the Medical College of Wisconsin End-Stage Liver Disease and Liver Transplant Program at Froedtert & MCW Froedtert Hospital.
Thanksgiving 2016: A Devastating Diagnosis
Justin's first inkling of trouble was rapid — and significant — weight gain, which started in 2015.
"I have been heavy, but over the course of one week, I would be able to gain 100 pounds of water," Justin said. He made multiple trips to emergency departments outside the Froedtert & MCW health network, where he received diuretics to eliminate the water but not a diagnosis.
The turning point came around Thanksgiving 2016 when Justin's liver failure was finally diagnosed, and his doctor told him he needed a liver transplant. However, before he could get a transplant evaluation, his condition took another downturn in early 2017.
"By then I was bright yellow and couldn't open my eyes because of the fluid," Justin said.
His wife, Kelly, vividly recalled the reaction of Justin's doctor. "She took one look at him and said he was dying and that he had to go to Froedtert Hospital," Kelly said.
Monday, Feb . 6, 2017: Straight to Froedtert Hospital
"I felt like the world had just dropped out from under me," Justin said. He and Kelly did not even go home, instead going directly to Froedtert Hospital where Justin checked in at the Emergency Department.
"Justin was quite sick and deteriorating rapidly," said Kia Saeian, MD, transplant hepatologist and MCW faculty member. "His liver was failing from fatty liver disease, a common cause of liver failure."
The largest organ in the body, the liver is responsible for multiple functions, including filtering out toxins and producing blood-clotting factors. When the liver fails and toxins build up, it can damage the kidneys.
Dr. Saeian said that when Justin arrived, his kidney function was worsening, which can be an ominous sign. Justin began kidney dialysis to prevent further damage to his kidneys.
"Justin was on the path to dying if a transplant didn't happen very quickly," said Johnny Hong, MD, transplant surgeon and MCW faculty member. After Justin passed a battery of tests to ensure he was otherwise well enough for a transplant, he was placed at the top of the regional waiting list on Friday, Feb. 10, because of his urgent need.
Instead of feeling anxious about the wait, Justin said he made peace with it. "Even if I didn't get an organ, I had a shot," he said. "It was the first time I had hope."
Meanwhile, Kelly was dealing with her own fears while trying to reassure their son, Owen, who was 3 at the time. "They were the hardest conversations I've ever had," she said. "I told him Daddy was really sick, that he had the best care possible, and someday soon he would be home to play with him again — and hoped I wasn't lying."
Sunday, Feb . 12: It's a Go
The wait was mercifully short. Justin was added to the list on Friday and on Saturday afternoon was told that a possible organ had been located out of state and its viability was being assessed.
The final decision came at 2 a.m. Sunday. The donor liver was a match and the transplant was scheduled. Kelly rushed from their home to Froedtert Hospital.
"She came in, we were off to the races, and the next thing I remember was 12 days later," Justin said.
Transplantation is a finely orchestrated sequence that begins with surgeons retrieving the donor organ.
"We have one of the shortest preservation times in the country, which means we are able to significantly shorten the time between the retrieval of the donated liver and transplantation," Dr. Hong said. "This translates to better function of the newly transplanted liver and better patient outcomes. It is one of the major factors, in addition to having a specialized Transplant ICU, why we're able to take care of very sick patients.
"A liver transplant is an extensive operation. We're not only dealing with someone who's very sick, but also removing the organ responsible for making clots to stop bleeding. There are many blood vessels, and the challenge is to keep bleeding to a minimum, implant the new liver in the shortest possible time, and restore blood flow to the organ so it can start making clots."
Dr. Hong divided Justin's surgery into two parts. "The first surgery is to implant the liver, after which we bring the patient to the Transplant ICU for the patient and new organ to recover," Dr. Hong said. "A day or two later, we surgically reconstruct the bile duct. By this time, the patient is more stable and has better liver function. We have used this strategy successfully for our critically ill patients and it has reduced the risk of complications."
Justin's transplant went smoothly. "It's always a good sign when the liver starts making bile right away, and with Justin, that was the case," Dr. Hong said.
Kelly could just tell the surgery was a success. "When I saw him, I told everybody how great he looked, even with tubes everywhere," she said. "His color was back, and he looked alive again."
Tuesday, April 11, 2017: Home Again
In all, Justin spent more than two months at Froedtert Hospital, including a stay in rehabilitation to regain strength and mobility. To help him navigate the new world of a transplant patient, post-transplant nurse coordinators Jenelle Griebling, BSN, RN, and Kate Kopsi, BSN, RN, worked with him and Kelly.
"We tell patients we're their lifeline," Griebling said. "We coordinate essentially everything from medications to diet to physical therapy to home care."
Now, two years later, Justin and his family live in Menomonee Falls, and he is once again doing the grocery shopping, taking Owen to school and pursuing his passion of cooking family meals.
Like his dad, Owen is recovering also. "He's seen a lot," Kelly said. "But the return to normal family activities has been healing. It helps him to know everything is fine."
Justin is thankful for the gift of routine in his life and, especially, for the high level of care he received. "I can live a pretty normal life and that's a blessing," he said. “The experts at Froedtert Hospital really saved my life. I would not be here — full stop — if I had not gone there."
Dr. Hong said the success in treating patients like Justin is the result of building an exceptional transplant program and team. "We are proud to be a world-class program that serves the community," he said. "Our comprehensive transplant services expand access to everyone from low-risk to high-risk patients, giving them an opportunity to survive."
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I absolutely love Froedtert, they saved my life too. I had a double lung transplant 12/16/18- The doctors and nurses are wonderful. So awesome to be able to breathe. 💚🦋