In the weeks prior to the second double lung transplant of his daughter, Lisa Ali by Cole Harbor, NS, said she was afraid to answer the phone, insecure who would be at the other end.
For more than a year, she and her 20 -year -old daughter, Tahlia Ali, had been living in Toronto waiting for the surgery that saves lives that is not available in New Scotland.
That wait reaches a pocket cost for the newly
“I was living on my credit card and had no way to pay it,” said Lisa Ali in an interview. “I am waiting for phone calls for lungs, but the only people who call me are creditors.”
The Alis is one of the three new Scotland families who have spoken with CBC News in recent months about the financial devastation they have faced while they expect their loved one to access a lung transplant surgery in a different province.
The Ali family said that the lack of financial support from federal and provincial governments has created immense tension for a time already tense. A month after his most recent transplant, Tahlia Ali remains in intensive care. One of the lungs did not take and had to be removed.
“She has many complications of this surgery this time we did not expect,” said her grandmother, Judy Robichaud.
“We were waiting for this time I would be outside the ICU … but even doctors don’t know what to expect. They are taking it one day at the same time.”
1st transplant in 2020
Tahlia Ali was diagnosed with pulmonary hypertension when she was seven years old. At that time, the family was told that the condition was fatal and that the only treatment was a lung transplant.
She had her first transplant in 2020, when she was 16. His family was standing again in New Scotland when he developed new problems and knew he needed another transplant.
“Tahlia, at this time, is fighting,” said Robichaud. “We have to go distance because she is.”
Adding to tension is the problem of money. Lisa Ali said that most people do not realize that a condition of being on the lung transplant list is having a full -time caregiver.
That person cannot work, since it is his work to take the patient to the hospital for multiple appointments per week, and make sure the patient obtains all his medications.
Ali thought he would qualify for the benefits for employment insurance when he left his job to go to Toronto, but he was surprised to know that he had less than 10 hours without qualifying.
A statement of employment and social development of Canada said that he could have appealed that decision, but that he needed to do it within a 30 -day window.
Ali said she was overwhelmed, since she had only days to move from her rental house, find a place to live in Toronto and get to her daughter’s first date.
“I thought, ‘I don’t have energy to appeal that,” he told CBC News.
While new Scotland offers an allocation of $ 3,000 per month to families who have to live outside the province in the long term to receive medical treatment, that only covers the rent of the family in Toronto. Ali estimates that he has accumulated $ 20,000 in debts that cover additional expenses.
Now that her granddaughter faces serious complications, Robichaud hopes it is another year before they get home.
She said people have been gathering behind them, offering what they can help to get to the end of the month. On Saturday, Colleen’s pub at Dartmouth celebrated an event for the family, bringing more than $ 5,000.
“I don’t know how they could handle me there if it weren’t for our family and our friends who stayed there with us and help support what is happening at this time. I am incredibly grateful for them,” Robichaud said.
Robichaud and Lisa Ali said that both the provincial and federal governments must do more to help families and their own, and plan to work with other families in New Scotland that advocate the change.
The Minister of Health, Michelle Thompson, told CBC News last month that sympathizes with families in similar situations, but said that the medical care system stretches in many directions and that the department has to make difficult decisions.
She said that New Scotland is unique compared to other provinces because it covers some of the travel expenses of the support person who should go with the patient.
“We will continue to review that program, to listen to people. We want to answer,” Thompson said at that time. “But it is not a cost recovery program and we also want to maintain the integrity of the entire system, and I know that is difficult.”
