Carolyn Stanley’s echocardiogram was supposed to be unremarkable — a routine check-up to assess her heart.
But when she sat down to go over the results with her new cardiologist, Lidija McGrath, M.D., an assistant professor of medicine (cardiovascular medicine) in the OHSU School of Medicine, the conversation opened in a way she didn’t anticipate.
“I walked in, and Lidija was sitting there and said, ‘Let’s talk about your aorta,’” Stanley said.
Carolyn Stanley before undergoing open-heart surgery at OHSU.
The subsequent discussion gave way to open heart surgery, shed light on decades of unanswered questions, empowered Stanley to take more control of her own health and inspired her to become an advocate for other women’s wellness. Today, Stanley, 58, a recent appointee to the OHSU Knight Cardiovascular Institute Philanthropic Advisory Council and a longtime supporter of the OHSU Center for Women’s Health, can finally say she’s confident in the direction her wellness is going.
And she credits OHSU for helping her find the way.
“I do still have fear. But what beats fear is knowledge,” Stanley said. “So being informed, knowing that OHSU is on the cutting edge of trying to find cures and treatments that will help prevent other people from going through what I’ve gone through, it lifts you up and makes you feel like you can contribute.”
Signs of trouble
Stanley’s health journey began about 24 years ago when a transesophageal echocardiogram revealed a ventricular septal defect and a patent foramen ovale — two small holes in her heart. After further evaluation at Cleveland Clinic, Stanley was advised to keep tabs on her heart but told that open-heart surgery was unnecessary because of her healthy lifestyle.
A decade later, Stanley checked into an urgent care clinic after feeling dizzy. Her heart rate was 236 beats per minute — the normal resting heart rate is between 60 and 100 beats per minute. She was taken to a hospital for treatment and monitoring and was told she had a heart rhythm abnormality called an atrial flutter and that her heart was going in and out of atrial fibrillation. She underwent ablation surgery, a procedure that creates small scars in heart tissue to inhibit the heart’s irregular electrical impulses.
“After I had that ablation surgery, I thought I was good to go,” Stanley said. “Out of sight, out of mind. Felt great. No problem.”
The heart of the issue
Enter OHSU. Stanley and her husband, Nick, have always been involved at OHSU. Nick is on the advisory board of the OHSU Knight Cancer Institute and the OHSU Center for Regenerative Medicine. Stanley was tabbed by Arlene Schnitzer in 2001 to help fundraise for women’s health, an effort that led to the creation of the OHSU Center for Women’s Health.
“Both Nick and I have such a strong belief in the value of OHSU in our community and what it provides for all of us,” she said.
But when it came to her health, Stanley had always defaulted to her longtime OB-GYN elsewhere. After her provider retired, Stanley switched to using OHSU’s services.
That decision changed her life the day she walked into McGrath’s office to go over her echocardiogram. “She said, ‘A healthy aorta is two centimeters in dilation. Yours is five,’” Stanley recalled.
“All of these things are indications that there could be something worse. There could be something life-threatening. I really want to raise awareness around that.”
Carolyn Stanley
McGrath had proactively investigated Stanley’s health history prior to meeting and saw evidence of lingering heart issues — issues that instigated Stanley’s previous medical episodes but hadn’t been thoroughly examined. McGrath had a hunch a bubble contrast echocardiogram could reveal a missing piece of a puzzle no one else knew existed.
When the results came, they revealed an enlarged aorta, a weakening of the aortic walls, two aortic aneurysms that were causing the artery to bulge, and a leaky aortic valve.
The discovery likely saved Stanley’s life.
“This was on a Tuesday, and on Friday, our family was planning a trip to Walt Disney World,” she said. “She told me not to go on any rides. I could have died with that kind of stress on my heart.”
A valve sparing aortic root replacement surgery was scheduled. Aortic and cardiothoracic surgeon Howard Song, a professor of surgery (cardiothoracic surgery) in the OHSU School of Medicine, eased any anxieties and performed the procedure. Song replaced Stanley’s enlarged aorta with an artificial one, repaired the leaky valve, removed a small appendage attached to her heart that could contribute to stroke and, for good measure, repaired the two holes.
Carolyn Stanley and Howard Song after surgery.
Carolyn Stanley’s husband, Nick, hugs Howard Song.
Stanley’s care, she says, was top notch — but she singles out McGrath and Song for their peaceful, informative demeanor.
“This is a big surgery, and Lidija helped diminish a lot of my anxiety. She was so attentive and caring,” she said. “The morning of the surgery, Howard came in, and he was so calm and professional. He said, ‘This is our team. You’re in the most capable hands. We’ll give your husband updates throughout the day, and I’ll see you later tonight.’”
Stanley’s surgery and recovery went well, but a year ago, she had another heart-related health scare. After feeling sluggish for an extended period of time, she went to OHSU and received a device that allowed McGrath to monitor her vitals remotely.
After monitoring Stanley’s vitals for two weeks, McGrath called saying she needed a pacemaker. Stanley had a total heart block, a condition that inhibits electrical signals as they attempt to pass between the heart’s upper and lower chambers. The pacemaker compensates by sending miniscule electrical signals to help stimulate the heart if it’s beating too slowly. Though uncommon, the condition can occur in some patients who have had an aortic root replacement due to disruption of the heart’s electrical pathways.
Empowered, advocating, thriving
The initial meeting with McGrath was the watershed moment in Stanley’s health journey and led to fixing a major issue with her aorta. Just as importantly, it empowered her to realize the breadth of her own health autonomy and to leverage her story to help spark that same self-discovery for others.
Her experience as an OHSU patient prompted her to join the Knight Cardiovascular Institute Philanthropic Advisory Council, where she hopes to impact the future of women’s heart health. Her goals include wellness kits for patients recovering at OHSU, coordinating events and campaigns to disseminate information and sharing how her experience changed her life.
“All of these things I’ve gone through are not dissimilar from what other women are experiencing,” she said. “Women have a tendency to put everybody else’s needs first and not their own. If you’re not feeling great, it just must be hormones or maybe I’m on my period or maybe it’s stress or I didn’t get enough sleep. All of these things are indications that there could be something worse. There could be something life-threatening. I really want to raise awareness around that.”
OHSU is leading us into a new age of understanding a disease that has afflicted humans from the very beginning.
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