When Jennifer Brady boards her United Airlines Express flight on a sweltering Sunday afternoon in mid-July, she has on a self-described “game face.”
The 47-year-old then takes her seat near the back of the plane and her shoulders slowly drop. She’s relaxed enough to sleep for the entire two-hour flight from Halifax to Newark, N.J.
“I’m just feeling tired with all of the buildup, like years-long buildup,” she told CBC News shortly after landing.
How a N.S. woman fought and won her lymphedema surgery battle
For Brady, it signals the end of a six-year fight with the Nova Scotia government for surgery to treat her lymphedema, a disease that causes fluid buildup and can result in painful swelling. Severe swelling in her lower left leg is a side-effect from having her lymph nodes removed during a radical hysterectomy to treat cervical cancer in 2019.
Brady went public one year ago with her application for medical assistance in dying. At the time, she spent several hours a day managing her disease, feeling severely depressed and unable to care for her two children.
Then, last October, after winning a judicial review against Nova Scotia’s Department of Health and Wellness, Premier Tim Houston publicly apologized to Brady. He also promised to pay for her future treatment.
But it wasn’t until Brady landed in New Jersey that she said it finally sank in.
“Holding out hope to get through all of the turmoil that it took to get here was really difficult because it felt for so long like it wasn’t going to happen,” she said.
In 2022, Brady took her fight to Nova Scotia Supreme Court after her requests for out-of-province care were repeatedly denied on the grounds she did not have a referral from a Nova Scotia specialist. Justice Timothy Gabriel pinpointed in his Oct. 2024 decision how MSI, the medical insurer for Nova Scotia, refused to acknowledge there is no such specialist in the province.
He ruled that Brady was “treated in a procedurally unfair manner” and the decision made by the province to deny care was “unreasonable.”
Since having a lymph node transplant on July 16 at The Valley Hospital in Paramus, N.J., Brady said she’s feeling remarkable improvement. She said she can see her kneecaps for the first time in years, and she no longer needs a massage machine that previously tethered her to the couch for six hours a day.
She has also taken her medical assistance in dying (MAID) application off the table.
“It’s kind of hard to believe that I was in that position. I don’t feel that way anymore,” said Brady.
“Just the constant fear that I lived with of blood infections, the worsening disease and everything that weighed on me every day, all day.”
Dr. Joseph Dayan, a plastic surgeon and leading world expert in lymphedema care, did a lymph node transplant on Brady. He said she is the “ideal patient” because she’s been wearing compression socks 24 hours a day and constantly managing her swelling.
But he said these steps only delay the inevitable worsening of the condition.
“It doesn’t stop the underlying cause of lymphedema, which is overactivation of the immune system, and that causes scarring, accumulation of fat, scar and fluid, and all of these things tend to get worse over time,” said Dayan.
While there is no cure for lymphedema, Dayan said some of his patients have experienced such drastic improvements that they no longer need to wear compression garments. He hopes more funding and research will eventually lead to more doctors who know how to treat the condition.
“It’s a huge hole in medicine,” said Dayan.
“I think there’s a lot of room where we can improve basic awareness and the process and logistics of getting patients to people who can help them with lymphedema. Part of that is just basic medical education that starts in medical school, that there’s actual awareness that this is a specialty.”
Dayan sees lymphedema patients each month from all over North America and as far away as the Middle East.
As of 2024, surgical treatment in Canada is only available to residents of Quebec, B.C. and Ontario in rare cases. According to the Canadian Lymphedema Framework, at least one million Canadians are impacted by lymphedema.
Brady initially tried to get surgery at the Royal Victoria Hospital in Montreal but it wasn’t accepting out-of-province patients. That’s when she started looking outside of the country for care.
Once she was eventually approved for out-of-country surgery following the court win, Brady had to find her own doctor and figure out logistics such as travel and navigating two different health-care systems.
“I was sort of flying blind,” she said.
“There is absolutely no help, no support for anyone going out of province or out of country to co-ordinate the care that they need.”
Brady was also on her own in New Jersey for expenses such as ground transportation, meals, home care services and medical equipment, which she said amounted to $5,000.
“Even once you jump through the hoops of getting approved and getting somewhere for care, God help you once you get there because it’s really expensive,” she said.
Both Houston and Michelle Thompson, minister of health and wellness, declined an interview.
In a written statement, a spokesperson for the department said a “number of changes have been made to Nova Scotia’s out-of-province/out-of-country program and approval process over the last number of months.”
“A thorough review has led to better clarity and guidance in terms of eligibility, required information and the application process,” spokesperson Brooke Armstrong said in the statement.
There is also a new review process for complex cases, according to the department.
“The auditor general’s review of the out-of-province/out-of-country medical claims program is currently underway, and the department looks forward to the outcome of that work and any recommendations the auditor general may have,” said Armstrong in the statement.
Brady said she has already been contacted by the auditor general’s office, and she hopes to provide insight from her personal experience.
“It makes me feel like everything I’ve been through has some meaning to it, not only in terms of obviously me getting surgery, but it’s brought about change that is benefiting other people,” said Brady.
“It at least offsets the cost to me — obviously not financial because now that’s been paid for — but the mental and physical cost, the cost that it’s had for my kids, not having a fully present mom.”
