Grandkids, beach trips, family-filled Christmases and fresh cinnamon rolls are just some memories Sharol Lucey has been making the past 26 years — thanks to a heart donated in 1997.
Lucey is among the longest-living heart transplant patients in Oregon. As she has for many of the past 26 years, the 76-year-old Vancouver resident joined others who have benefited from organ transplants during an August event at Oregon Health & Science University to raise awareness about the importance of organ donation.
OHSU has the largest and longest-running heart transplant program in the region. Today, Lucey is a walking testament to the life-saving act of those who check the organ donation box on their driver’s license.
“Surviving with a transplant and living with an organ that requires long-term care and attention takes a special person. And Sharol is special,” said Deborah Meyers, M.D., associate professor of medicine (cardiovascular medicine) in the OHSU School of Medicine, and section head of heart failure and transplant cardiology. “She is still living a full and active life despite the challenges she has faced.”
Lucey had always prized her stellar health — no serious issues and never broke a bone. That was until, at age 49, she started to feel tired during light activities, such as making the bed. By Memorial Day, she felt terrible and extreme tightness across her chest.
“The doctor told me I had a heart valve that was bad, but that the issues were from cardiomyopathy,” Lucey said of her initial diagnosis at the OHSU Knight Cardiovascular Institute.
Cardiomyopathy is a condition that affects the ability of the heart to pump or function well. It is a common cause of heart failure.
From then, Lucey was on blood pressure medicine every four hours. She was active with her new window tinting business, but eventually had to close it as her strength and endurance depleted; just fixing her hair sapped her energy.
“I’d do my hair a little, wait a few minutes, do something else, then finish,” Lucey said.
At a follow-up appointment, her health care team told her she needed a new heart, and she was placed on a transplant list.
“I had a lot of anxiety when I was told I needed a transplant,” she said. “There are so many emotions that go along with a transplant.”
Six months later, Lucey received a donor heart — one that would change her life more than she imagined possible.
A grateful heart
After recovering, Lucey’s heart beat with revived passions — dressing up for costume parties, traveling throughout the world, and spending time with her grandkids for baseball games and holiday baking. Although living life to the fullest and with gratitude for her new heart, she could not stop thinking about her transplant.
“This person had to die, and I am living,” she said. “I was concerned for the family, wondering who they were and what they were doing. Heart transplants are a blessing with a very dark cloud; someone had to die for you to get this gift.”
Lucey and her husband, Mike, began researching information on her donor. They learned his name was Steve. He was a father and worked for a large wholesale company. Lucey left her information with the OHSU donor program and let them know she was open to having her donor family contact her if they wished. In 1998, she began receiving phone messages from Steve’s mother, Marlene. Those gentle texts budded into a vibrant friendship that continues to this day. She and Marlene go on vacations and even advocate for the organ donation program together.
“We get mistaken for sisters sometimes,” Lucey said. The pair have presented on the importance of organ donation at various speaking events for civic groups and schools. They shared their photos in donor program calendars and have made squares for donor quilts.
One of the top questions Lucey receives about her donor's heart is whether she has interests or a fondness not experienced before the transplant.
“Steve liked working on cars, and I do not like to work on cars,” Lucey laughed. Yet, her new heart has given her a fondness for collecting heart décor: Paintings, knick-knacks and other heart-shaped treasures decorate her home.
Giving other patients hope
Living 15 to 20 years after a heart transplant is common these days, Meyers said. Living with a transplanted heart for 26 years and counting is still remarkable. However, it’s not always smooth sailing.
“My journey had some bumps in it,” Lucey said. “I had the transplant for a few years, and during a checkup, they determined I had a bicuspid aorta.”
The bicuspid aortic valve in Lucey’s donated heart is different than a normal heart’s aortic valve, which is between the heart’s left ventricle and aorta — the main artery that carries blood away from the heart to the rest of the body — to ensure blood does not flow back into the left ventricle. A bicuspid aortic valve contains two flaps instead of three. Because it doesn’t pump as efficiently, people with the condition sometimes need to have them surgically corrected later in life.
Lucey underwent three valve surgeries between 2001 and 2005. At the time, the procedures were invasive: To access the heart, surgeons cut through the sternum and spread her ribs. Today these procedures are much less invasive and can be done through a catheter-based approach, Meyers said.
“If you look at me now, I look healthy, but before, I looked very sick,” Lucey said.
Determined to help shed light on heart ailments, in 2006 she participated in research that led to genetic testing for idiopathic cardiomyopathy. A simple genetic test can now tell anyone at any age whether they are at risk for developing idiopathic cardiomyopathy. Her kids and grandkids were tested, and to her relief, the gene has not been inherited.
Through her participation in the donor education program, clinical trial and her health care needs, Lucey has developed deep relationships with OHSU staff, including Meyers.
“Sharol is not just a patient. She has increased donor awareness with her work. She has a very full life, a wonderful, supportive husband, a great sense of humor, and a great determination to live her life to the fullest,” Meyers said. “She can give hope to patients looking at advanced therapies and transplants.”
Nearly three decades after the gift of her donated heart, Lucey has advice for other patients who need or have received a transplant:
“It’s a miracle. The outcome is worth any effort you have to put into it,” Lucey said. “There are no promises in life, healthy or unhealthy. Things can change in a day. Heart surgery is not a magic bullet. There are still challenges after, but you have to face each one. And the staff at OHSU will do everything in their power to help you.”