Art, 75, recalls the many years he served on the local Police Department and coached high school football. Those were the years he would regularly hit the gym to lift weights or jump on his bike for a ride around town — before he ever knew about a devastating disease called transthyretin (TTR) amyloidosis (ATTR).
Today, Art’s life is very different. Not only does he know of ATTR, he lives with it. The disease means that Art becomes easily short of breath, even from a brief stroll or a walk up the stairs, and can’t participate in many family activities he once loved, such as camping.
“We used to have barbecues and invite friends over,” says the Northern California native. “It was an active life. And it just seems like boom, this happened so sudden. But I’m understanding now that it’s something that was building over the years.”
ATTR is a disease that occurs when a common protein found in the blood, TTR, becomes unstable and builds up in various organs. These buildups are toxic to healthy cells and can interfere with the normal function of the tissue.
He first suspected something was wrong in 2016 during a surprise anniversary party for him and his wife, Cheryl. He had recently gained 40 pounds, seemingly from fluid retention. Then, at the party, he had a hard time catching his breath. Visits to the cardiologist revealed atrial fibrillation, an irregular heartbeat that can be caused by ATTR. Doctors also drained excess fluid from his body, relieving uncomfortable pressure.
To identify the cause of Art’s condition, his doctors took tissue biopsies and identified TTR amyloid deposits. “The doctor told me I had amyloidosis,” he said. “I’d never heard of that before, and I wasn’t aware of a family history.”
While ATTR can be passed down in families, it can also occur in people who do not inherit a mutated gene. In these instances, the TTR protein is destabilized due to natural aging processes. This form of the disease is called “wild-type ATTR,” and it’s the type that Art has.
Doctors told him that the only true cure for the disease would be a double transplant: a heart and a kidney. He chose not to pursue that route, and instead chose to make the most of every day and find inspiration for the future. Art uses a scooter to get around, and continues to have fluid drained for comfort, as his kidneys aren’t doing their job effectively.
Art says he has gained tremendous support from an amyloidosis patient group, where he’s met new friends and a new doctor who specializes in the condition.
“I’ll tell you, when I went to the first meeting, the biggest thing was just seeing others who have the same type of illness,” he said. “I wish that none of us were in a sickened state, but it was uplifting to know that I’m not alone.”
Today, Art is optimistic that a therapy for wild-type ATTR will reach patients within his lifetime.
“It’s been a journey down a very uncertain road,” he said. “I know there are others that are fighting [amyloidosis] and some who have already succumbed to it. It’s been an awakening for me to learn about it. And the more I learn about it and what is actually happening, I gain additional courage and strength to carry on.”