Transplant patient’s pandemic life: family bonding, and hope that lungs come soon

Transplant patient’s pandemic life: family bonding, and hope that lungs come soon

HALIFAX — For 15-year-old Tahlia Ali, life in the time of COVID-19 has meant a hard wait for a lung transplant operation she hopes will change her future, but there have also been some lighter moments to savour.

She, her mother and her grandmother set off from Halifax in an RV on May 20 after receiving word that specialists preferred they be near the University Health Network and the Hospital for Sick Children in Toronto.

They’re now living together in an Airbnb as the country’s premiere transplant system gradually ramps up again.

“I’m pretty chill about it,” Tahlia said during an interview on Monday.

Still, she’s hoping for new lungs to give her the energy to pursue her passions of musical theatre and “being able to dance.”

“My health has been declining,” she said. “I would say I feel ready for the transplant.”

The Halifax resident is diagnosed with pulmonary hypertension, which leads to a lack of oxygen to blood vessels in the lungs, and she has two holes in her heart. Her approval for a transplant came in February, but since the novel coronavirus surfaced in Canada, there have been a number of delays.

In mid-March, The Canadian Press reported that her plans to travel to Toronto for the operation were put on hold due to the pandemic. Since then, there have been challenges, and the road ahead remains uncertain.

“The fact we’re here now is good …. But when we got here, we were told the number of organ donations was very small,” said Tahlia’s mother, Lisa Ali. They were also told Ronald McDonald House — a charity that provides residences for families awaiting treatments — doesn’t currently have room for them.

Last month, doctors in Halifax detected increasing fluid around Tahlia’s heart that had to be treated with medications. “Her health has gotten a little worse, and that makes me nervous,” the 44-year-old mother said.

When Tahlia has her lung operation, doctors are also expected to make repairs to her heart in what’s expected to be an eight-hour surgery.

Dr. Shaf Keshavjee, the director of the lung transplant program, said in an interview in March the delays in the program were necessary for safety reasons.

There was also reluctance at the time to have transplant teams fly around Canada to pick up and transport lungs. In addition, donations of organs fell sharply during the pandemic.

But this week the future is looking brighter, Keshavjee said in an interview on Saturday.

“We’re open,” he said. “The donations seem to have picked up. There were two lung transplants yesterday and another today. It’s certainly a lower rate than it used to be, but it’s getting busy again.”

However, the challenge of matching a lung for size and blood type remains, the physician added. And the wait list has grown for the roughly 200 transplants carried out each year.

“We’re up to 60 again on the waiting list, from levels of about 30 people (before the pandemic) …. And there’s going to be a backlog of patients waiting for assessment to ensure they’re ready for transplant,” he said.

Still, he’s finding the medical teams are starting to adapt with telemedicine and a testing system — including a CT scan — to ensure the safety of the donated organs.

And life for the Alis during the pandemic has also involved some unanticipated fun.

“Once we got on the road, I liked it …. I felt more free and relaxed,” said Tahlia.

All three had always hoped to take a RV journey together, and as it unfolded, they encountered kindness along the way. Two campground owners allowed them an overnight stay, including one where the owner brought her horses for Tahlia to feed and pet.

Tahlia says she’s learned to live life in the moment, “I’ve been chilling and talking to my friends (on social media),” she said. She plays board games, makes crafts and listens to music to pass the time.

Her 70-year-old grandmother, Judy Robichaud, says she is busy advocating for her granddaughter, trying to ensure they enter the Ronald McDonald House soon.

She’s also simply savouring precious time together.

“It has given me more time to spend with my daughter and granddaughter, one-on-one time … and so it’s a bonding we haven’t had for many years,” she said.

The family has received funding from the provincial government, the David Foster Foundation and private fundraising.

But Lisa said her anxiety over the future will only relent once Tahlia’s operation is successfully completed and they’re driving home.

“That for me will feel more like the end of the journey,” she said.

This report by The Canadian Press was first published June 10, 2020.

Michael Tutton, The Canadian Press

Note to readers: This is a corrected story. A previous version incorrectly attributed a quote to Lisa Ali, rather than her daughter, Tahlia.

Coronavirus

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Photo submitted/ Rita-anne Fuss
Distancing Diamond Project in Millet for mental health

Distancing Diamonds allow for social distancing community gathering.

Alberta’s chief medical officer of health, Dr. Deena Hinshaw, confirmed more than 1,000 cases over the weekend Monday afternoon. File photo
COVID-19: Central zone active cases up Monday

‘We’ve now crossed the tipping point,’ says Hinshaw

The death of 19-year-old Jacob Michael Chitze of Edmonton has now been ruled a homicide following an ongoing RCMP investigation.
UPDATE: RCMP arrest youth for second degree murder of 19-year-old Jacob Chitze

Arrest made for the murder of Jacob Michael Chitze, 19.

Pumpkins for the 46th Annual WDACS Pumpkin Ball on display at Vision Credit Union Wetaskiwin. Shaela Dansereau/ Pipestone Flyer.
46th Annual Pumpkin Ball held virtually this year

This year the pumpkins were sold over a six-day online auction.

Manny’s Motel demolition underway. Shaela Dansereau/ The Pipestone Flyer.
Manny’s Motel demolition underway

The property has been vacant since the fire that destroyed most of the structure Jan.14, 2020.

Wetaskiwin Hospital staff join AUPE walk outs across the province Monday Oct. 26, 2020. Shaela Dansereau/ The Pipestone Flyer.
City of Wetaskiwin health-care workers strike in protest of province-wide cuts

Wetaskiwin Hospital staff join other front line hospital workers across the province in walk-outs.

Front-line hospital workers have walked off the job at the Rimbey Hospital, and across the province. Photo Submitted
Front-line health care workers on strike across the province, including Rimbey Hospital

The strike is due to cut of 11,000 health care jobs in the province, according to AUPE

(Black Press file photo)
Maskwacis RCMP welcomes new detachment commander

The Maskwacis RCMP detachment has a new detachment commander, Inspector Leanne MacMillan.… Continue reading

Comedic actor Seth Rogen, right, and business partner Evan Goldberg pose in this undated handout photo. When actor Seth Rogen was growing up and smoking cannabis in Vancouver, he recalls there was a constant cloud of shame around the substance that still lingers. Rogen is determined to change that. (Maarten de Boer ohoto)
Seth Rogen talks about fighting cannabis stigma, why pot should be as accepted as beer

‘I smoke weed all day and every day and have for 20 years’

Leader of the Opposition Erin O’Toole rises during Question Period in the House of Commons Thursday October 22, 2020 in Ottawa. THE CANADIAN PRESS/Adrian Wyld
O’Toole tells Alberta UCP AGM Liberals were ‘late and confused’ on COVID response

He says Alberta Premier Jason Kenney has taken charge and not waited to make things happen

Alberta Premier Jason Kenney arrives for an announcement at a news conference in Calgary, Alta., Tuesday, Sept. 15, 2020. THE CANADIAN PRESS/Todd Korol
Inquiry into oil and gas foes to deliver report next year: Kenney

A lawsuit filed by environmental law firm Ecojustice argues the inquiry is politically motivated

The Canadian border is pictured at the Peace Arch Canada/USA border crossing in Surrey, B.C. Friday, March 20, 2020. More than 4.6 million people have arrived in Canada since the border closed last March and fewer than one-quarter of them were ordered to quarantine while the rest were deemed “essential” and exempted from quarantining. THE CANADIAN PRESS/Jonathan Hayward
Majority of international travellers since March deemed ‘essential’, avoid quarantine

As of Oct. 20, 3.5 million travellers had been deemed essential, and another 1.1 million were considered non-essential

This photo provided by Air Force Reserve shows a sky view of Hurricane Epsilon taken by Air Force Reserve hurricane hunter team over the Atlantic Ocean taken Wednesday, Oct. 21, 2020.   Epsilon’s maximum sustained winds have dropped slightly as it prepares to sideswipe Bermuda on a path over the Atlantic Ocean.  The National Hurricane Center says it should come close enough Thursday, Oct. 22, evening to merit a tropical storm warning for the island.  (Air Force Reserve via AP)
Hurricane Epsilon expected to remain offshore but will push waves at Atlantic Canada

Epsilon is not expected to have any real impact on land

A voter places her absentee ballot in the ballot box, Wednesday, Oct. 7, 2020, at Merrill Auditorium in Portland, Maine. THE CANADIAN PRESS/AP/Robert F. Bukaty
American voters living in Canada increasingly being counted in presidential race

The largest number of Canadian-based American voters cast their ballots in New York and California

Most Read