Sisters man warns of silent killer


Last updated 4/2/2024 at 10:43am

Photo by Katy Yoder

Fred Woodworth was at risk of sudden death from a genetic condition that may affect others in Sisters. He is getting the word out to check for atherosclerotic cardiovascular disease.

Fred Woodworth is a jovial man who's quick to smile and even faster to help someone in need of his expertise. Known as the go-to general contractor/handyman in Sisters Country, he's built, repaired, and upgraded homes in Black Butte Ranch and across the region. He was often found under a sink, on a roof, or beneath a home doing what he knows best. Then he got a diagnosis that changed everything.

Woodworth ended up needing open heart surgery that included a double bypass and replacement of his aortic valve. He was stunned. He didn't have any heart disease symptoms prior to hearing from his doctor that he had a heart murmur; that news at least, wasn't a surprise.

"I was asymptomatic for heart disease, not short of breath, had no leg swelling or weakness. The only reason the heart disease was found was because of the heart murmur. I knew about the heart murmur since I was 18 because I had rheumatic fever," said Woodworth. "I went to doctors sparingly because we couldn't afford the insurance. When I went to a doctor in 2019, she mentioned my heart murmur, and suggested an echocardiogram which registered a pressure gradient of 19. Once I qualified for Medicare, I went to an internist in March of 2023, and due to the confirmed murmur, had another echocardiogram with a baseline from the earlier test. The pressure gradient went up from 19 to 38."

The increase in the pressure gradient from 19 to 38 in four years was a red flag indicating a significant increase in his aortic stenosis or atherosclerotic cardiovascular disease (ASCVD). A cardiologist told Woodworth his level of stenosis at 66 looked like something he'd expect to see in a person 10 years older. The cardiologist mentioned a potential risk factor for the increased levels of stenosis as an inherited gene called Lipoprotein(a) or LP(a) that can accelerate plaque buildup. Woodworth learned that 20 percent of the population can carry the gene without any direct symptoms.

After taking an easy and affordable test for the gene, Woodworth and his doctor learned why his stenotic levels were elevated. The LP(a) genetic marker he carries accelerated the buildup of plaque on the aortic valve. ASCVD is typically attributed to high levels of bad cholesterol or LDL which is currently treated by using statins, exercise, and dietary changes. But LP(a) is unaffected by diet or exercise, and flies under the radar because it's currently considered untreatable in the U.S. Even though it isn't currently treatable with medications, Woodworth is optimistic about the future because of several clinical trials currently underway .

LP(a) is in the same family and cousin to LDL cholesterol, sometimes called "bad cholesterol." LP(a) is sometimes called LDL's "evil twin" due to its undetected presence and the fact that it causes LDL cholesterol to be stickier, increasing risk of blockages and blood clots in arteries. Common LDL-lowering drugs such as statins have no impact on lowering LP(a) levels, in fact there are studies indicating that the use of statins can increase LP(a) levels by as much as 20%. Risk ranges for LP(a): Optimal<75, Moderate 75-125 and High >125. Woodworth's initial test result was 181. After starting statins in March 2023 and retesting in September his levels increased to 213. Follow-up tests are already scheduled.

Woodworth knows there are people in the community who carry the gene and don't know it. With cardiovascular disease remaining the leading cause of death in the United States and around the world, Woodworth wants people to know there's more to the cholesterol picture than many know.

"I talked with some customers at Black Butte Ranch, and they told me about a friend whose brother died of a sudden heart attack at 57. His sister went to a local doctor and asked to be tested for LP(a) and found she has the gene," said Woodworth. "Your first event could be your final event, that's why it's called the 'widow maker' or 'silent killer.' When I was diagnosed, doctors told me to stay off my tall ladders and to keep my feet firmly planted on the ground because if I have an event prior to surgery, I could fall and die."

After learning about the genetic and inherited nature of LP(a) Woodworth suggested his family including first cousins and their children get tested. Both his brother and sister tested positive, while his son and daughter tested negative. Woodworth's father had his aortic valve replaced in the 1990s. Testing for LP(a) wasn't promoted during that time; Woodworth suspects he inherited the gene from his father.

"A lot of doctors in our area don't know anything about LP(a) or the clinical trials taking place. I forwarded the information I've accumulated to several people who then shared it with their doctors and others. People need to be aware that it's out there. We have around 10,000 people in Sisters Country and 20 percent of them could carry the gene without knowing it; that's 2,000 people in our area," said Woodworth. "There's 64 million in the U.S. potentially carrying that gene. If you have cholesterol issues and take statins, it's an inexpensive test. In Europe they already have an oral drug that helps reduce LP(a) levels by 64 percent. I'm just lucky I never had a first event. Due to the heart murmur and a good cardiologist, the actions taken were preventative, not reactive."

Despite his diagnosis with ASCVD, Woodworth feels great. He knows there's hope on the horizon for treatments and he plans to be around to benefit from them. He encourages folks to reach out to their doctors and make sure they're not part of the 20 percent with the disease.


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