Liver transplant provides second chance at life

By Audrey Posten, North Iowa Times

“I feel like the most blessed person on earth,” said Austin Bernhard, joy evident in his voice as he chatted via phone from Iowa City last week.

He has reason to celebrate: In February, the 21-year-old McGregor native received a second chance at life thanks to a liver transplant.

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Bernhard first noticed something was wrong nearly five years ago, while still in high school at MFL MarMac. 

“I was hanging out with friends, and they pointed out that my skin looked yellow,” he recalled.

He shook the comments off, but looking in the mirror later that night, he realized the assessment was correct.

The jaundice persisted, and monitoring revealed elevated liver enzymes, an indication of inflammation or damage to the organ. Eventually, Bernhard was diagnosed with primary sclerosing cholangitis (PSC), a chronic autoimmune liver disease that slowly damages the bile ducts, allowing the digestive liquid to accumulate in the liver where it can deteriorate cells or cause cirrhosis or fibrosis.

“Doctors told me I’d probably need a transplant in my mid-20s,” Bernhard said. “It was freaky.”

Over the next four years, the prognosis didn’t keep Bernhard from embracing life. Through the jaundice (which Bernhard admitted made him a bit self conscious), bouts of itchiness and fatigue, close to a dozen procedures and countless pills, he attended college at the University of Iowa. In addition to being a full-time student, he wrote and recorded music and played shows with his band, became the production coordinator for the college’s Student Video Productions, got a job driving a campus bus and started reading more books. He shared little about the disease with others.

“If I got bummed out,” he said, “I would just shut it off. But I was so occupied, I didn’t really have time to wallow.”

But at the start of 2020, the transplant Bernhard thought was still several years away became a current reality.

“I had gotten a random bloody nose that wouldn’t stop,” he said, and doctors discovered his blood wasn’t clotting well. “I shot up to the top of the list.”

The January transplant evaluation was a comprehensive, two-day process. Tests—everything from blood work to an EKG and MRI—evaluated every aspect of Bernhard’s body. Numerous doctors, along with a social worker, dietician and pharmacist, also consulted with him.

“They get to know you,” Bernhard shared. “It’s like they’re building a profile, to decide where on the list you’ll go.”

The morning he was approved, Bernhard said staff gave no indication of when to expect the transplant.

“They said it could be today, tomorrow, even months from now,” he noted.

Around 7 p.m. that night, he got the call.

“I couldn’t believe it,” Bernhard said. “It all happened so quickly.”

He made the trek to the hospital with his mom, Robin, while his girlfriend Paige drove up from Rockford. Surgery was scheduled for around 8 a.m. the next morning. Bernhard said he remained relatively calm through the wait, “but it was kind of intimidating.” He has vivid memories of being dressed in a gown and poofy hat, then wheeled into a room with eight to 10 doctors who prepared him for the procedure.

The transplant was completed by the afternoon, but Bernhard was largely incapacitated due to tubes in his nose and neck. A day or so later, though, he was unencumbered and able to stand for the first time.

“It was really hard actually,” he said. “You have no core strength.”

Bernhard remained in the hospital for eight to nine days. He has check-ups several times a week now, but that will drop to once a week, then once a month and, eventually, once per year.

“I have a lot of limitations,” he added. “I can’t pick up anything over 10 pounds for a long time.”

With a weakened immune system, Bernhard is also relegated to the apartment he shares with his mom. Although he’s enjoyed time to watch Netflix, the restriction keeps him from attending class. Unfortunately, that’s pushed what he thought would be a spring graduation to next fall. He can’t complain, though. 

It’s the same outlook on medications.

“I’ll still take some meds for life—it’s the compromise you make,” he said. “I’ll do that for a new liver.”

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Reflecting on the past few years, Bernhard said there’s no scenario where he would go back and remove the disease—the experience—from his life.

“It’s a bold statement,” he acknowledged. “But it’s benefitted me as a person.”

He’s come to appreciate life and its fragility.

His advice to others: “Pain is relative. Deal with it any way you see fit.”

“Feel the way you need to feel,” he added.

Bernhard appreciates the love and support he’s received from family and friends in the weeks following the liver transplant. He’s most thankful, though, for the organ donor who made his second chance at life possible.

All he knows about the individual is that they were a “young donor.”

“One of the things I can do is write a letter to the donor’s family, then give it to the hospital, which can then give it to the family,” Bernhard said. “I haven’t taken time to do that yet, but I want to.”

It will be up to the family if they’d like to reach out someday.

His situation has made him a strong advocate for organ donation—even blood or bone marrow donation.

“No one wants to sign up with the intent of [donating an organ],” he said, “but, in the real world, things happen. You could save someone’s life with that small decision.”