By Coty Dolores Miranda
Contributor
Two 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 recalled 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 recalled.
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 percent 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 recalled.
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 said 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 said.
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 said.
Butler’s transplant operation was a success and though still recovering, the 20-year Chandler resident said 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 laughed. “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.
A virtual concert, ButlerFest was held in November, organized by Martinez and Mesa’s Nile Theatre owner Michelle Donovan and her crew.
Bands from around the nation filmed 20-minute sets for the event, including Jimmy Eat World, Dropdead from Rhode Island, San Jose-based Exhumed and Bob Bruno from Best Coast.
The outpouring of support and love from some people he hadn’t seen in decades, was extraordinarily moving Butler said.
“So many talented musicians put together an amazing streamed festival that also raised a great deal of funds to help us,” he said. “It makes me count my blessings daily and really value others even more than I did before. The support of friends and family was so touching and amazing.”
The advent of a new year brings memories of last January when Butler started feeling the dreaded hereditary disease start kicking in.
“In January 2020, I was beginning a steady descent. A few months later, I was scouring Amazon for canes. Things just got worse from there.
“Around the time COVID hit, I became extremely hypoglycemic and didn’t know it. Amy had to bring the paramedics in one morning when my blood sugar was below a fifty,” he recalled.
“There were so many problems after that, but I just learned to work with them. That’s all gone now and I hope to have this January and 2021 be one of the best years in my life.”
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 said 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,” said Butler.
“They’ve said that 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.”
One disheartening side effect he’s still experiencing is the numbness in his thumb and two fingers of his left hand, a result from having them taped to an IV pedestal during the operation.
“I’m hoping that the sensation in my fingers gets back to normal and I can maybe start playing music again sometime. Not nearly at a level that I did a few short years ago, but at least in a local capacity.
“Touring is tough financially and physically and I don’t plan on adding that stressor back into my life. I just really look forward to getting back to the life I led before my platelets dropped, anemia kicked in, then fatigue, and all the snowball that ensued afterwards,” said Butler.
“And once COVID lightens up, I plan on spending as much time with family and friends as possible and just enjoying life again.”
Butler said especially in the last month, he’s enjoyed continual and daily improvement.
“Everything has a different meaning now,” he says. “This is my chance to keep going and enjoy what I have been given by science, the doctors and a selfless person who donated their organs.”
According to the United Network for Organ Transplants,there were 8,896 liver transplants in the U.S. in 2019, an increase of 7.8 percent from the previous year.
Butler has great praise for his physicians.
“Doctor 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.”
