One-of-a-kind care gives CTEPH patient her breath back

Emily Pinckard

Emily Pinckard with her partner Josh and dog Oscar (Photo by Laura Bombier).

In May 2017, Emily Pinckard was a 32-year-old lawyer working in Toronto. The Muskoka native was in a wonderful relationship with her partner Josh. Her life was stretched out in front of her: career, kids, travel.

Then life changed.

“The signs were starting to appear,” says Emily, reflecting back to that time. “Just going down the street to grab a coffee would leave me winded. I had to sit and catch my breath before ordering.”

To Emily, her symptoms did not make sense. She was still young, and a former varsity athlete who had competed at the national level in both swimming and rugby. Around the time her medical journey began, Emily had a trial approaching and had planned to run in the Sporting Life 10K. Over the coming months, all her plans would be put on hold.

“I went into the walk-in clinic just after Mother’s Day, and during the walk from my car to the check-in desk, I collapsed.”

A life-changing diagnosis

Emily was sent to the emergency department at Mount Sinai Hospital. Tests revealed a life-changing diagnosis: bilateral pulmonary embolisms in both the upper and lower lobes of her lungs.

Prescribed several medications, Emily was discharged from the hospital after a week and told that with rest she would continue to improve.

“But my symptoms got worse. Everything was a struggle. Simple day-to-day tasks would leave me breathless and I would faint.”

Emily’s lungs were scarring because her body was unable to clear the blood clots from her lungs. The scar tissue was blocking blood from circulating in her lungs, causing elevated pressures in her heart. She was ultimately diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH). Unfortunately her disease was severe, reaching into the small, distal branches of her lungs. Her specialist referred her to Dr. Marc de Perrot, Surgical Director, Pulmonary Hypertension/CTEPH Program, UHN.

“There are only a handful of surgeons in the world who could perform the surgery that I needed on a case as severe as mine. Lucky for me, Dr. de Perrot was one of them.”

In September, Emily was scheduled for surgery in December. But by October 2018, Emily’s health had deteriorated and she was admitted to the ICU at Toronto General Hospital with all the signs of heart failure.

On October 23, Emily underwent a challenging, but successful pulmonary thrombo-endarterectomy surgery. Her recovery included some complications and she was kept in a medically induced coma for eight days after her surgery. It was difficult for her family and Josh, who all stayed by her side 24/7.

“The pulmonary and thoracic teams were incredible. Obviously, it was a terrible time for me and my family, but everyone at TGH was very supportive and comforting.”

A dedication to helping others

A year and a half post-surgery, Emily and Josh are recalibrating their goals in life. Emily would like to return to work one day, but for now she is focused on her recovery and helping young people like herself living with CTEPH and other rare diseases. Emily was elected to the Board of Directors at the Pulmonary Hypertension Association of Canada, and volunteers as a Patient Partner with UHN. She is keen to help other PH and Lung Program patients.

“I know what those people are going through and what they need. It’s a cause I can really throw my heart and soul into.”