When it Comes to Medical Issues, Trust and Listen… to Yourself

The life you save may be your own.

Trust your instincts. That simple truth saved Patti Nernberg’s life more than once. Today Nernberg, a lifelong athlete, is enjoying the sports she has always loved. If she had been a passive patient, rather than taking an active role in her care, she wouldn’t be here at all.

Nernberg’s story began in August 2018, when she woke up early one morning with severe pain in her jaw and a strong metallic taste in her mouth. She didn’t know what was wrong, but she knew she had to get medical care immediately. Her boyfriend took her to a nearby emergency department.

When the on-duty staff determined she was not experiencing a heart attack or stroke, she was triaged for later treatment. This, Nernberg says, just didn’t feel right. She knew her condition was serious. She remembers saying, “We have to leave; something is wrong.” The two headed to Torrance Memorial Medical Center’s Emergency Department.

That’s about all she remembers. By the time they arrived at Torrance Memorial, Nernberg was conscious but incoherent. The emergency department physician ordered a CT scan, which revealed Nernberg’s condition: Type A aortic dissection.

The symptoms for this can resemble those for a heart attack or stroke, but an aortic dissection is even more serious. There was a tear in the layers of the artery wall pumping blood from Nernberg’s heart. Blood pressure was forcing blood between those layers, enlarging the tear. Aortic dissection is relatively rare, but it is immediately life-threatening.

“I wouldn’t be alive if I didn’t pay attention to my feelings,” Nernberg says.

Brenton Bauer, MD, director of Torrance Memorial’s echocardiography lab, heart failure program and cardio-oncology program, agrees. “Most people don’t even make it to the emergency department when they have an aortic dissection.”

Treatment is immediate open-chest surgery. All the medical specialists needed were assembled at Torrance Memorial, and Nernberg was rushed into surgery. After eight hours, her dissected aorta was repaired. But she wasn’t home free yet.

She spent nine days in the hospital, much of that time in an induced coma. When she went home, she didn’t feel like herself—sluggish and unfocused. Her medical providers attributed her symptoms to the pain and discomfort of her surgery, but again she trusted what her body was telling her and pressed her case.

Tests revealed the culprit: the dosage levels of the beta blockers she had been prescribed to reduce her blood pressure, allowing her aorta to heal. Her dose was reduced, and her symptoms decreased.

Still, Nernberg felt something was wrong. “I took control of my care,” she recalls. “I began listening closely to my body.”

She scheduled appointments with a pulmonologist, neurologist, ophthalmologist and cardiologist, and was diagnosed with post-pericardiotomy syndrome—an inflammation of the areas around her heart and lungs, causing her pain, shortness of breath and vision disturbances.

“Within a week of starting anti-inflammatory treatment, I began to turn a corner,” she remembers. “Recovery wasn’t easy. I was challenged mentally and physically, but I was determined to reclaim my life. I pushed forward—swimming, surfing, skiing and playing pickleball—living as fully as I could.”

Nernberg spent the next two years recovering and undergoing treatment for papillary thyroid cancer (she is now cancer-free). The effects of her aortic dissection weren’t over yet though. A routine CT scan monitoring her aortic repair indicated a new enlargement.

Her cardiologist, Dr. Bauer, determined she would likely need another surgery. She sought a second opinion, from Aziz Ghaly, MD, a Cedars-Sinai cardiac surgeon and medical director of the Lundquist Lurie Cardiac Surgery Program. His review of her CT scan revealed a leak at the site of her previous surgery. Nernberg needed another surgery soon: a replacement of her aortic arch and descending aorta.

Due to the complexity of the procedure, Dr. Ghaly partnered with colleagues at Cedars-Sinai Medical Center to draw on the combined expertise of both institutions. Pedro Catarino, MD, Cedars-Sinai’s director of aortic surgery, led a team performing a relatively new procedure: a “frozen elephant trunk” surgery (named for the shape of the arch and descending aorta).

Nernberg spent another year recovering and dealing with continuing vision problems, diagnosed as amaurosis fugax—a repeated, transient loss of vision, in Nernberg’s case caused by mini-strokes related to her cardiac conditions. Today she is back on the ski slopes and in the ocean, surfing and swimming, and on the court playing pickleball.

Since her open-heart surgeries, Nernberg has traveled to (and skied in) Japan and Chile, and skied four Aspen, Colo., mountains in a single day. She’s looking ahead, too, with a trip planned to ski the Sellaronda circuit in Italy’s Dolomite mountain range next year.

“Surviving wasn’t the end of my journey; it was the beginning of a new one,” she says. “A journey of learning to trust my instincts, of understanding that even in the most complex medical situations, my voice matters. That persistence matters.”

Nernberg’s health care providers—also some of her biggest fans—agree. “What I’m so proud of about Patti is that she trusted her instincts and took action,” says Dr. Bauer. “I’m partly her cardiologist, but also partly her cheerleader … and that’s the part I’m most proud of. Kudos to her for following up after her surgeries. She saved her own life.”

When it comes to your health care, “Trust your gut and trust your instincts,” Dr. Bauer advises. “Make sure you feel satisfied with the answers you’re getting.”

“You always need to take charge of your health,” Dr. Ghaly adds. “You need to educate yourself—be proactive, and don’t be shy. There’s no shame in getting a second opinion; an informed patient is a good patient. You need to trust your provider, but also ask questions. At the end of the day, it’s your body.”

Nernberg reflects that she worked hard to become stronger and get back to the person she was before her health problems. “Sometimes, advocating for yourself isn’t just important; it’s lifesaving,” she says. “Many people worked together to save my life. It’s all about giving back now and being grateful.”