When Brandon Facon learned the wait time for a liver transplant in California was nearly three years, he and his family began making plans to come to IU Health.
Twice Brandon Facon has left his life in California and traveled to Indiana where he has sought medical help from what he considers the best transplant team the world over. The first time was in 2012. The second time was just a few weeks ago.
At the age of nine, Facon, who just turned 24, was diagnosed with primary sclerosing cholangitis. The progressive disease of the liver slowly destroys the bile ducts in the liver. With damaged bile ducts, the gallbladder causes inflammation and scaring of the bile ducts. At the time of his diagnosis doctors told him he’d probably need a liver transplant within eight years. It wasn’t something his parents talked with him a lot about.
“At the age of nine, I didn’t want him constantly wondering when the ball would drop. I wanted him to be a kid,” said his mom Anne Facon. Brandon knew he had stomach issues and had been diagnosed with colitis. He got involved with the Crohn’s and Colitis Foundation.
Eight years came.
Brandon was in his senior year of high school trying to make the most of that milestone year. But it wasn’t easy. On February 1st he wrote: “Already missed the first two periods of my last semester of high school. This should be fun.”
At its worst the disease causes abdominal pain, swelling of the spleen, muscle and joint pain, fatty deposits on the skin, yellowing of the eyes and skin, diarrhea and weight loss.
When he was trying to be a regular teen – free from the disease that slowed him down – he played video games, and some non-contact sports with friends – mainly golf and soccer. “I wasn’t fast enough to play lacrosse and I was too small to play football,” said Facon, who typically weighs about 130 pounds and stands 5’6.”
He found his talent early on in photography and design and worked with the yearbook staff. But always in the back of his mind was the transplant. He knew he needed one.
It was at a support group for people affected by biliary cholangitis that he met a man who had come to IU Health for his transplant. The disease typically occurs in older people between the ages of 30 and 60.
“He said ‘I had your disease and I moved to Indiana and I got transplant in two months as opposed to two years,’” Facon related. “So we went home and checked our options and read about University Hospital and how it’s a hospital of excellence. We came back and I got my first transplant in two months.” That was August 10, 2012.
“He really wanted to walk at graduation so he graduated and we left for Indiana the next day,” said Anne Facon. In addition to Brandon, Michael and Anne Facon have a daughter Danielle, a year older than Brandon.
Following surgery Brandon showed pictures of his scar on his Facebook page and wrote: “Never would I have thought my life would be like this but I honestly wouldn’t want it to be any other way.” One year after his transplant he said he felt the healthiest he’d ever felt. He has spoken publicly about his transplant and his disease, and encourages others to consider organ donation.
The transplant kept him at that healthy stage for five years.
After a year’s deferment, he started classes at California Polytechnic State University. Initially he thought he’d study industrial engineering but after an introductory class, he switched to mechanical engineering. During his sophomore year he got a job in the photography studio of the art department. Eventually he spent more time in the art department working as the main technician. Part of his interest in photography has always been how the camera works. He admits to being more comfortable behind the lens than in the picture.
For three years, things were good and then there were bad days.
“I got into a cycle that at the beginning of the quarter I was feeling good and by the end I was sick. Being in college, it’s easy to pick up germs. It’s hard for college students to understand that if they’re sick they shouldn’t go to class, so I was exposed to a lot of germs,” said Facon. Because primary biliary cholangitis is an autoimmune disease, stress can trigger and heighten the symptoms.
“Five years of college took a toll on my liver and the disease returned. I didn’t want to put my life on hold after college so I said let’s do this,” said Facon. “It was comfortable back here. We met people the first time, we were more familiar with the state, and we knew the team.”
Brandon and his mom drove 10 hours a day for four days back to Indiana. “He had been sleeping about 20 hours a day at this point and it continued on the trip out here. We’d stop at thrift stores along the way to look for camera equipment,” said his mom, who didn’t leave his hospital room during the stay. On September 6th Facon received his second liver transplant – performed by the same surgeon he had in 2012 – Dr. Richard S. Mangus.
His goal is to be back in California by Thanksgiving. “We’d like to get him in an environment where he isn’t depleted by germs and can thrive,” said Anne Facon.
Facon is anxious to complete his senior project focusing on designing camera equipment.
“My photography teacher told me I should start turning the camera on myself and document my story,” said Facon. “But for right now, I just want to get a job and live life in my 20s.”
— By T.J. Banes, Associate Senior Journalist at IU Health.
Reach Banes via email at T.J. Banes or on Twitter @tjbanes