The right side of this woman’s heart was four times larger than it should be

An avid exerciser, health guru and life-long teacher of many things, Kaye Norlin was in the prime of her life. She was devoted to her family and working as a social worker for people with disabilities.

Kaye started to notice changes in her body. She was stopping to catch her breath when she was shopping and experiencing tremendous pressure in her chest when working on her parents’ farm.

She consulted her doctor about the issues she was experiencing. He diagnosed her with borderline asthma and referred her to a pulmonologist. But the diagnosis was wrong. After years of being treated for asthma and noticing her ability to exercise was diminishing, Kaye knew something just wasn’t right.

So why was the right-side of Kaye’s heart four times larger than it should be? The answer lies in her real diagnosis. She was having complications from an undiagnosed case of pulmonary arterial hypertension.

“In some patients with more severe pulmonary hypertension, the right ventricle of their heart becomes enlarged to pump harder and keep blood flowing continuously through the diseased and narrowed pulmonary arteries,” says Dr. Charles Alex, a transplant pulmonologist at Advocate Christ Medical Center in Oak Lawn, Ill. “Initially, the heart tries to compensate by muscular thickening of the walls, which contributes to the enlargement of the right ventricular chamber. This isn’t sustainable in the long run and can lead to permanent damage to the heart if not recognized and treated early.”

“The management of pulmonary hypertension requires a multidisciplinary approach among cardiologists, pulmonologists and transplant specialists,” says Dr. Alex. “This disease can often be misdiagnosed and fatal if not treated properly. In Kaye’s case, it would only get worse.”

Kaye embraced yoga after being diagnosed with pulmonary hypertension to help control her breathing. She had been teaching the skill at a local cancer center since becoming a registered yoga teacher in 2013, two years post diagnosis. Kaye feels that treating the whole person is vital to successful treatment and recovery.

“I wish I had been involved with yoga during my cancer diagnosis and recovery, but it helped with my breathing struggles from pulmonary hypertension, and I knew it could help others.”

In 2016, Kaye went to Texas to teach yoga at the International Pulmonary Hypertension Association Conference and Scientific Symposium. She noticed her legs were huge. She was retaining water and struggling to breathe. Then she went on another trip and could only walk 10 feet. Kaye knew something was wrong. Her doctors told her she needed a heart and lung transplant, but Kaye wasn’t ready to face that reality yet.

“Since being diagnosed with pulmonary hypertension, I have gone to a support group,” she says. “People who don’t have this disease don’t understand what you are going through, so it is important to share your feelings with people who do. I’ve lost support group members who were too scared to get a transplant and died.”

“It was a quality of life decision,” says Kaye. “You know you can’t ride horses with an oxygen tank.”

One day, when Kaye was on her way home from her support group, she had to stop the car to be sick. She knew something wasn’t quite right and headed to the hospital. Her liver and kidneys were shutting down.

“I was referred to Stanford Medical Center for a heart and lung transplant, but I couldn’t go there. I needed to be close to home,” says Kaye. “I went to doctors throughout the Chicago area, but it just didn’t seem like the right fit, and I don’t think I was ready. But when I went to Advocate Christ, it felt like the right fit for me. They gave me the facts and details. I desperately wanted the doctors to listen to me and be straight with me – and they were.”

Kaye needed a bilateral lung transplant, and she got one.

Less than six months later, Kaye is back to helping teach yoga, and on May 5, she completed a 5k with her new pair of lungs in honor of World Pulmonary Hypertension Day.

Dr. Christopher Wigfield, Kaye’s thoracic surgeon at Advocate Christ, says in Kaye’s case, she was diagnosed so late that it could have had severe consequences.

“It’s so important for patients to get diagnosed earlier by a pulmonologist,” says Dr. Wigfield. “Without earlier diagnosis, survival chances decrease significantly.”

“Kaye’s recovery is remarkable,” he says. “Her results with such a severe diagnosis is a testament to her determination.”

The ongoing theme in Kaye’s story to triumph: exercise.

“Exercise got me through my cancer treatment, pulmonary hypertension and now a lung transplant.”