Three months ago, Ryan Butler was cutting his hair and stopped, hair trimmer in hand, and wondered aloud why he was bothering.
“I was thinking, ‘Why am I even doing this? What am I doing it for? I might not even be here next week,’” he recalls thinking that October day.
Ryan had been diagnosed with Wilson’s Disease, a rare and hereditary liver disease that causes copper to build up in the liver.
His mother, Lou Butler, had passed from Wilson’s Disease at age 43—Butler’s age when he received the diagnosis following more than a year of downward-spiraling health that included nausea, sleeplessness, extreme fatigue and difficulty walking.
Looking in the mirror last October at age 44, he contemplated his face and future, feeling hope was gone.
“I just felt I was done: I didn’t think I’d make it,” he recalls.
And right at that pensive moment, his phone rang.
A liver had become available and Butler was to report immediately to St. Joseph’s Center for Liver Disease and Transplantation for a possible transplant that very afternoon.
It wasn’t the first hopeful call he had received, but the other liver donations hadn’t worked for various reasons.
This time he was told that rather than the typical 50/50 chance for a donor match, it looked to be a 90% or better possibility.
And it was.
The life-saving donated liver came from a Colorado male donor—all the information he was given.
“Amy and I walked in the main door at the very moment the man with the cooler carrying the liver walked in,” he recalls.
Butler, who started Arcane Digital Recording Studio in Chandler in 2004, is a well-known and widely respected guitarist who toured with heavy metal bands Landmine Marathon and Northside Kings throughout North America and Europe.
Even touring, the hard-driving, all-out heavy metal guitarist didn’t drink alcohol or take drugs.
He says from the minute he awoke following the transplant surgery at Dignity Health St. Joseph’s Hospital, he felt better.
“I felt the symptoms were gone and I felt a sense of hope,” he says.
With him when he awoke was his wife of 12 years, Amy Butler.
He credits her for standing strong through the entire process even as she herself suffers from health issues, including fibromyalgia.
“She’s just been amazing; she’s really pushed through all this and been there for me,” he says.
Butler’s transplant operation was a success and though still recovering, the 20-year Chandler resident says he’s thankful the liver symptoms he’d been living with for years are gone.
“There had been a lot of major fatigue, and I itched all the time, which is weird,” he says with a laugh. “And I’d get the hiccups, sometimes 15 times a day. I just always felt kind of sick, like I had a bad flu. And I had glaucoma in one eye, which resulted in cataract surgery.”
Certain symptoms had begun as early as 2014 and worsened in 2018. He started having glaucoma issues.
He couldn’t help but think of his mother.
“Every time I had antibiotics, or they’d put me under, I’d get sick. I kept telling people to check for Wilson’s disease but they said, ‘No, you don’t have that.’”
After losing the sight in one eye, he was checking in for his second cataract surgery and his eighth eye procedure when it was determined Butler had a 103-degree fever he hadn’t even been aware of. His ophthalmologist told him something wasn’t right.
“I was told to go get a full blood work-up, and that’s what led me to Dr. (Justin) Reynolds. He said I had Wilson’s Disease and if they’d caught it earlier, I possibly could have managed it with medication,” he said.
Instead, Butler was facing liver failure and was placed on a liver transplant list. Even when he moved to the top of the list, the matches weren’t there.
As he struggled with his failing health and increasing financial worries, friends gathered to aid him and his wife.
A GoFundMe page was launched by friend and former Landmine Marathon bassist Matt Martinez.
“As a member of the bands Landmine Marathon, Unruh, Northside Kings and many more, he has released music to critical acclaim, toured the world and established countless lifelong friendships,” Martinez wrote.
“As the owner and engineer of Arcane Digital recording studio, he produced, engineered, mixed and mastered an impressive catalog of music that fills our record collections.”
The GoFundMe site remains open. Nearly $50,000 of the $80,000 goal has been raised.
With 2021 at hand and his new liver making life easier, Butler is optimistic for his future.
“I’m very much looking forward to the new year,” he says with a chuckle. “Hopefully, we’ll be all caught up on bills and the business will be running again smoothly. Hoping to not have any health hiccups.
“They’ve said at the four-month mark, I can really start exercising hard again, so I plan on mountain biking and camping again as soon as I can build myself back up to it and get this water weight off that’s built up from my liver being so bad for so long. My wife and I would like to travel a little more, too, but we’ll see how that pans out.”
According to the United Network for Organ Transplants, there were 8,896 liver transplants in the United States in 2019, an increase of 7.8% from the previous year.
Butler has great praise for his physicians.
“Dr. Reynolds and his team at St. Joseph’s really guided me through all of this over the last year and a half and will most likely be my team for life. Dr. (Thomas) Chaly did an amazing surgery, and it blows my mind what these people were able to do with science and their talents to save me,” he said. “I couldn’t be more grateful.”
