There is no Ronald McDonald House for sick adults who must travel, and live, in Toronto to receive their medical care.
“A lot of people assume there's a place to stay, but there's not. We're basically on our own,” said Tina Proulx, a Sudbury native who moved to Toronto in April so she could get on a waiting list for a double-lung transplant.
Proulx and her husband, Joel, moved from Sudbury to Ottawa, where she worked at the head office of a local pizza chain called Gabriel Pizza, and he worked at the Ottawa distribution centre for the Beer Store.
After years of illness, tests and a prognosis in October that Tina, who is only 32, needed a double-lung transplant to save her life, they had to uproot their lives and move near Toronto's General Hospital – which has the only team in Ontario that can perform double-lung transplants.
Without jobs in Toronto, Tina said she and her husband eventually had to bend the truth to find an apartment.
“We tried the honest approach and explained our situation,” she said. “Unfortunately, we weren't very successful with that.”
When they did find an apartment, they were on the hook for $1,475 per month in rent, without any steady income.
Tina was diagnosed with pulmonary hypertension about 10 years ago.
An arterial malformation in her left leg formed small blood clots that eventually worked their way up to her lungs.
After years with the disease – before she had a plastic screen surgically implanted to prevent the blood clots from travelling up her arteries – her lungs were irreparably damaged.
She had constant shortness of breath, sometimes coughed up blood and experienced heart palpitations.
Today, her energy levels are so low she is confined to a wheelchair to travel most distances.
“Tina's normal isn't our normal,” said her mother, Lorraine Giroux.
Her resting heart beat varies between 112 and 120 beats per minute.
Despite her challenges, Tina has maintained a positive attitude, and thanks her husband throughout their five years of marriage, and the 10 years they spent together that preceded that union.
“It's almost like he came into my life at the perfect time. He's the reason why I'm so strong,” she said fighting to hold back tears. “He has given so much for me, that I just hope that when this is all over I can spend the rest of my life giving him as much as he has given me.”
Her family has made an effort to appreciate every moment they spend with her.
“We're trying to live day by day with the hope she'll be okay,” her father, André Giroux, said. “If she's not, at least we enjoyed her that day.”
While Toronto's General Hospital is a world-leader for lung transplants, about five per cent of patients die on the operating table.
With Tina, according to her mother, that risk could jump to 10 per cent because of blood thinners she took to treat her condition.
Even when double-lung transplants are successful, a patient's average lifespan is only five to six years. Some people live 10 to 20 years with a new pair of lungs, but they are the exception.
Tina may not qualify for a second lung transplant.
The average wait time for a lung transplant is four to five months, but some people wait more than a year or two.
“It just depends on when a new set of lungs come in,” Tina said.
The lungs need to come from a person around the same size as the patient, and of the same blood type.
Tina and her husband Joel must live in Toronto because there is a two-hour window after lungs are removed from a donor's body, before they can be used for surgery.
High-tech XVIVO systems, invented by Toronto doctors, can extend that time frame by a bit, but a quick turnaround remains essential.
Since Tina was added to the organ recipient list in June, she has received $650 a month from the Trillium Gift of Life Network to help cover her living costs.
But she and Joel have had to depend on the generosity of friends, family and strangers to keep living in Toronto.
Several Beer Stores in Ottawa and Sudbury – including the locations in Hanmer, Azilda, Chelmsford, Lively and New Sudbury – have set up donation jars to help cover those costs.
Tina's father said his colleagues – at Vale's nickel refinery – have also been very generous and have helped raise more than $8,000 to help Tina.
Tina and her family have also become strong proponents for organ donations, and encourage anyone not yet registered to do so at Beadonor.ca