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IU Health has a long history as one of the top transplant programs in the country. Now, a team that combines clinical medicine and research is helping one patient in a unique way.
By IU Health Senior Journalist, T.J. Banes, firstname.lastname@example.org
He’s 67 and up until his liver began to fail Vincent “Vince” Agoston enjoyed a full life. He is an avid outdoorsman who loves hunting and fishing and is a master falconer. He built a tree house in his 32-acre woods in Pendleton that is large enough for two queen beds.
Mostly, he loves his wife, Laurie. Together they joy ride in a red Stingray Corvette, and at one point cruised on matching Harleys. They met in their former home state of Ohio and had their first date at a Wendy’s restaurant. Less than a year later, on May 26, 1984, Laurie wore an ivory silk gown made by her mother; Vince wore a tux and the two exchanged vows in a Christian church.
Not long after, they moved to Indiana. For nearly 40 years they’ve worked as a mobile unit repairing and sharpening surgical instruments for 70 hospitals and surgery centers around the state. IU Health was one of their clients.
So the hospital was no stranger to them. But Vince Agoston became a “mystery man,” when his liver began to fail early last year. The first symptoms were dark urine, and then the former 6’2” 195-pound former Fenwick, Ohio quarterback dropped 45 pounds for no apparent reason.
“I’ve never done drugs, drank, or smoked. I’ve always exercised and lived a clean life. My friends say, ‘You’re the last person we thought this would happen to,’” said Agoston. This is still a mystery.
That’s when the Agostons met IU Heath gastroenterologists Dr. Raj Vuppalanchi and Dr. Ajaya Jai. A number of tests followed tracing the mystery to Agoston’s liver. In the care of a team of IU Health hepatologists Agoston was listed for a liver transplant on July 25, 2020.
“He was already in the hospital on July 24 and I remember it like it was yesterday,” said Laurie Agoston. “He was so very ill and I was driving to the hospital that morning and got a call telling me they had a liver donor.”
Agoston received a liver transplant on July 28, 2020. He was in the care of IU Health Surgical Director of the Adult Liver Transplant Program Dr. Chandrashekhar Kubal. Eight weeks following transplant was what the Agostons call “a slice of heaven.”
Then, a pandemic combined with serious health issues turned Vince Agoston’s mystery illness into a life-threatening risk.
“The world went crazy. There are things he doesn’t remember and a lot of things I hope we forget,” said Laurie Agoston. “You think the transplant will be the hardest part and the scariest until you experience something more scary.” What followed was what they call “the worst turbulence on an airplane.”
At last count, they have had 11 hospital visits since May 2020. Vince Agoston recently marked his 90th day of hospital stays – including one where he was in ICU on a ventilator.
“I just held his hand and leaned toward his face and said, ‘babe, I’m here. I love you.’ He squeezed my hand and I said, ‘he’s in there,’” said Laurie Agoston. He has had ten biopsies showing his body is rejecting his donated liver. They thought he’d need another transplant.
That was until they witnessed firsthand the marriage between clinical medicine and research.
Now, doctors say Vince Agoston is the first post liver transplant patient going into chronic rejection to receive a one-pill-a-day called Saroglitazar. The drug, approved in India, is typically used to treat diabetes and is a therapeutic option for non-fatty liver disease.
“He is the first person in the U.S. and possibly the first person at all,” said Dr. Kavitha Nair who specializes in gastroenterology and hepatology. There is some ongoing investigation with the drug’s use for patients with Primary biliary cholangitis (PBC), a disease of the bile ducts, and in post-transplant patients with fatty liver disease said Nair. Agoston has neither.
IU Health is one of those sites researching the drug’s effectiveness, while it awaits FDA approval.
Agoston’s case was reviewed by IU Health Dr. Naga Chalasani who had the idea to use Saroglitazar, said Nair. “We filed for the patient through the FDA for compassionate use of the drug and then reached out to the drug company and in about two seconds, they said, ‘yes,’” said Nair, who is approaching her second year with IU Health. “Since this is the first time we’re using this in a patient who is post liver transplant and is going into rejection, we’re trying to prevent re-transplant. Now we monitor him and look for the bilirubin to normalize,” said Nair.
“If we can use this for chronic rejection it will be amazing and potentially save repeat liver transplant and we can save those organs for other patients and improve quality of life,” said Nair. “The reason I came to IU Health is to do liver transplants. This has been an exciting and different experience. It’s the marriage between clinical medicine and research, which is the benefit of IU. We have the expertise here. We are able to use expert knowledge with the doctors who have been doing the research and we have the resources to implement it.”
And while they wait, the Agostons return to their Pendleton home and hope for Vince’s renewed health.
In the meantime, Laurie Agoston wears her husband’s wedding band on a chain around her neck. Like his body, fighting off the illness, his fingers have gone from swelling to thinning.
“If this works, we will be thankful for a miracle,” said Laurie Agoston. “There have been many, many doctors who have cared for Vince all throughout this unbelievable journey that we’ve been on - too many to mention and I wouldn’t want to leave any of them out. We are especially grateful to Dr. Nair who has been the driving force behind the research study for this investigational medication.”