“I thought I was out of breath because I was out of shape,” she says. Jane had been recovering from a number of procedures including two knee replacements and endometrial cancer surgery. Walking uphill, singing – even tasks as basic as standing up and talking – made Jane short of breath and resulted in coughing fits.
In a routine CT scan by Jane’s cancer team in 2015, two enlarged lymph nodes and evidence of blood clot debris were discovered in Jane’s lungs. She was immediately referred to the Thrombosis and Thoracic Surgery teams at UHN. Chronic thromboembolic pulmonary hypertension (CTEPH) was suspected – and tests confirmed it.
CTEPH is a condition whereby blood clots get stuck to the blood vessel walls of the lungs, blocking proper blood flow. If left untreated, it can be deadly. An extremely intense and complex surgery (Pulmonary thromboendarterectomy or PTE) can be performed to remove the clots from the lungs. UHN is only one of 20 hospitals in the world qualified to perform this surgery.
Jane was eligible for PTE and UHN’s Dr. Marc de Perrot, Canada’s premier PTE surgeon, was on the case. Dr. de Perrot and the UHN team were transparent about the risks and outcomes. “It was major surgery, but if it were successful, I could resume life,” Jane says. “Without the operation, I would eventually die.” Jane worried for her three daughters, who lost their dad in a car accident 15 years prior. She reworked her will. Deep down, however, she didn’t fear the surgery.
During the 13-hour procedure, Jane was on a heart-lung machine and her body temperature was reduced to 18 degrees. “They turn your body off for 20 minutes at a time while they pull these mutated turnip-like things out of your lungs,” Jane says.
Jane says that a positive attitude, support from her daughters and friends, and the superb care from UHN staff were key to her successful – and speedier-than-expected – recovery. “They are there for you, they support you, and they’re also honest with you,” says Jane. “What really impressed me was Dr. de Perrot coming to check on me I don’t know how many times.”
Today, Jane uses just a low flow of supplementary oxygen most nights. She travels. She writes. She shared her story at a CTEPH symposium in 2016. She has also become a Stephen Minister, walking alongside others going through tough times. “You see life with new eyes when it’s almost been taken away from you,” she says.
Jane is forever grateful for the care she’s received from Dr. de Perrot and the UHN team. “There was this gentle hammock of support I found myself in,” she says. “I can’t speak highly enough of the staff at UHN.”
“I would dance on fire for them,” she says.
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