By Hilary Brown
In June 2021, Kelly Smoot noticed a change in her son Jalen's weight.
“I didn’t think much of it,” she said. “But then he complained of neck pain, so I took him to my chiropractor.”
It was there, under the bright lights of the chiropractor’s office, Kelly got a good look at Jalen’s eyes. They’ve always been bright, she said. But under the lights, his eyes looked different.
They were yellow.
Kelly knew right away something was wrong. She got Jalen to his primary care provider in their hometown of Charleston, West Virginia. Blood work confirmed what Kelly suspected: there was something wrong with Jalen’s liver. Just 26 years old, he was diagnosed with autoimmune hepatitis, a disease that led his immune system to attack his liver and cause severe, irreversible damage.
This was a surprise to Jalen. Aside from neck pain, he felt fine. But if autoimmune hepatitis is not treated properly, it can eventually leading to chronic liver disease, also known as cirrhosis. Jalen’s yellow eyes were an indication that his cirrhosis was advanced, and he was progressing towards liver failure.
“It is still unclear of what precipitates this type of abnormal immune body response but it is thought that environmental factors, past infections and genetic susceptibility may play a role,” said Hender Rojas, advanced care practitioner at the UK HealthCare Transplant Center who sees Jalen for his regular follow-up appointments. “It is estimated that in the general population, it affects between 100,000 to 200,000 yearly and can present at any age.”
Autoimmune hepatitis is generally well treated with steroids and immunosuppressives. However, Jalen’s liver disease was complicated by autoimmune hepatitis and primary biliary cirrhosis syndrome, which is most common among autoimmune liver disorders.
By the time Jalen met Rojas, his symptoms had worsened. Abdominal pain and distension, fatigue, elevated white blood cell count indicating an active infection were just a few of Jalen’s long list of symptoms, and he had been hospitalized multiple times. The severity of liver disease is quantified using the Model for End-Stage Liver Disease, or MELD score. The higher the score, the more urgently the patient needs a liver transplant. On a scale of six to 40, Jalen scored a 34. His disease had progress to the point where a transplant was his only option.
Jalen was scared. So was Kelly. But with the help of Jalen’s pre-transplant coordinator Missy Wells, the Smoots went into Jalen’s transplant with their questions answered and their fears assuaged.
“Missy was just my rock,” said Kelly. “She talked to me about it, walked me through it, which helped a lot. “It kept me calm, which kept Jalen calm.”
“With him being very sick and much younger than our typical patients, he and his mom were obviously both very overwhelmed and anxious about all the steps and testing needed,” said Wells. “Communication is always very important with all of our patients and families, but when things move even more quickly you have to take some extra time and effort to assure as best as possible their questions are answered. As a mom myself, I felt an even stronger need to talk to and listen to Jalen’s mom as much as she needed.”
Rojas estimates that 20% percent of patients with autoimmune hepatitis will need a liver transplant. Of those, only about 5% will receive one. More than 10,000 people in the United States are on a waiting list for a liver.
In February 2022, Jalen was once again hospitalized at the University of Kentucky Albert B. Chandler Hospital. Once Jalen was settled in his room, Kelly made the two-and-half hour drive home to pick up anything that Jalen might need during his stay. As soon as she got home, she got a call from Wells the hospital. She said she needed her to come back right away.
“I was scared,” Kelly said. “I asked, 'What do you mean, what’s going on?' They said, 'No, everything’s fine. We have a liver for Jalen. Matter of fact, we have two.'”
“Coincidentally, I was the nurse on call that week and was the one who got to call Jalen and his mom the night of February 9 to let them know we had an organ offer,” said Wells. “I knew Jalen and his Mom were both excited yet very anxious. His mom was upset at first because she wasn’t there, but I assured her she was fine and Jalen was fine. I walked her through the steps that were to happen overnight until she could make arrangements to get back to hospital.”
By the time Kelly returned, there were three suitable livers for Jalen. The odds of having one suitable organ for a patient who is already in the hospital is slim – to have three is almost impossible.
“A couple of doctors came by,” said Kelly. “They said they had to see who had three livers waiting on them because this never happens.”
“It’s very uncommon to have organs to choose from," said Meera Gupta, M.D., Jalen’s surgeon and surgical director of the UK HealthCare Kidney and Pancreas Transplant Program. “His MELD score was pretty high, so we were dealing with multiple offers at the same time. When we decide one over another, the decision accounts for timing, size of the organ, function and recipient stability.”
Jalen’s transplant almost didn’t happen. Because he was already hospitalized with a high white blood cell count, indicating infection or inflammation, with worsening fatigue, malaise and diarrhea, Jalen’s care team and family discussed whether to proceed.
“He was pretty sick, already in the hospital for illness when we got a liver offer for him,” said Gupta. “So we were faced with having to decide if his current illness precluded surgery. We assumed his care and optimized him so that we could get him this chance. We also covered him with antibiotics during and after transplant in case he did have an active infection.”
Finally, on Feb. 10, 2022, after just two months on the waitlist, Jalen got his new liver. The transplant lasted more than seven hours, starting at around 5:30 p.m. and ending around 1 a.m.
In the days that followed Jalen’s transplant, according to Gupta, there was a little additional stress on his kidneys. He spent one day in the intensive care unit (ICU), but his kidneys recovered quickly. As for Jalen, his only complaint was that he couldn’t wait to get out of there. About a week after his transplant, Jalen was discharged, having spent nearly two months in Lexington.
Fourteen months after the transplant, and Jalen is feeling great. He works full-time as a data analyst, plays video games and reads comics. He returns to the UK Transplant Center once a year for lab work and follow up appointments. Most impressively, he goes to the gym three days a week. Looking back on his journey, he would want others in his position to be advocates for their own health and speak up when they have questions about their treatment.
April 16 is National Donate Life Blue and Green Day, a day of celebration and recognition of organ donors and their families, support for recipients and those still waiting, and to promote the importance of registering to be an organ donor. While Jalen hasn’t met his donor’s family yet, he wants to thank them. And if he met someone who wasn’t registered to be an organ donor, he has a message he wants them to consider.
“Just think about the fact that even though you’re gone, you can still help someone,” he said. “You can save someone’s life.”
