The Emergency Room staff at the Victoria General Hospital receive a gift from Operation Popcorn from transplant recipients, including Tony Duke and his wife and caretaker Beth Campbell-Duke (far right). (Keili Bartlett/News staff)

Transplant caregiver starts website for financial, mental health support

Beth Campbell-Duke started Transplant Rouges after her husband’s double lung transplant

About a year before her husband would undergo a double lung transplant, Beth Campbell-Duke made a website to keep friends and family up-to-date about Tony’s condition. Now, she’s transforming that website to help other families and transplant recipients navigate their care.

“Medically, everything was excellent. It’s this non-medical social support where things get pretty fuzzy,” she said, adding that there are financial and mental health aspects families have to grapple with.

Besides the physical toll of the transplant itself, there are the many hospital visits, long-term stays and tests. A family caregiver is required for a transplant recipient to even make it on the transplant list.

READ MORE: Transplant recipients thank VGH staff with Operation Popcorn

“You don’t walk in there alone. People need to think about if they needed a transplant, who would drop everything and be with them in Vancouver — one of the world’s most expensive cities — when you’re not working, for four to six months. Should everything go right,” she said.

The toll on mental health starts before a transplant, Campbell-Duke said, as patients have been chronically ill for a significant period of time before an operation. The process of getting a transplant and then healing from one can take years, during which the caretaker takes chunks of time off of work, if they’re able to continue working at all.

Less work means less of an income to cover medical costs and travel associated with hospital stays, especially for those who don’t live in Vancouver and may have to pay for accommodation.

READ MORE: 25 per cent of organs donated in B.C. came from fentanyl overdose deaths

Although families are given a lot of training for pre- and post-op care, she said the huge learning curve and lack of support can be overwhelming.

“What I noticed when we were going through transplant was how much other family caregivers in particular — more so than the patient — were struggling to cope with the expectations and the materials they were provided,” Campbell-Duke said.

Campbell-Duke has a background in science and education, and decided to use her caregiving experience for her husband to help others. In Victoria, where she and Tony relocated from the Comox Valley, they tried to set up a support group. But given how many transplant recipients can’t plan schedules too far in advance — their energy and health fluctuating rapidly — no one showed up. So they turned to become an online resource.

The website, TransplantRogues.com, will help by providing financial aid information, peer support, a monthly conference call and how to use the medical materials given to caregivers. Campbell-Duke said there will be a focus on mental health for both patients and their families as they navigate survivor’s guilt, post-traumatic stress and relationship strains. A membership section of the website will provide additional resources, and she hopes proceeds will help employ transplant recipients who may otherwise not be able to return to work. Campbell-Duke hopes to have the website up and running for 2019.

READ MORE: Victoria mother seeks recipients of son’s donated organs


@KeiliBartlett
keili.bartlett@blackpress.ca

Like us on Facebook and follow us on Twitter

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

Just Posted

Wildfire smoke expected to blanket Greater Victoria again

Conditions expected to worsen Wednesday afternoon but not approach levels reached a few weeks ago

Former Victoria Royals manager celebrates Stanley Cup win

Grant Armstrong is now an amateur scout with Tampa Bay Lightning

Canadian warship HCMS Regina sails past Sidney

The vessel recently returned from the world’s largest naval exercise

Hundreds walk, bike, drive through Saanich’s full moon lantern festival

Harvest Moon celebration draws crowds for pandemic-friendly fun

‘Bonnie’ and ‘Henry’ among latest litter of service dog puppies

B.C. Alberta Guide Dogs names two pups after provincial health officer

105 new COVID-19 cases, 1 death as health officials urge B.C. to remember safety protocols

There are currently 1268 active cases, with 3,337 people under public health monitoring

U.S. Presidential Debate Takeaways: An acrid tone from the opening minute

Here are key takeaways from the first of three scheduled presidential debates before Election Day on Nov. 3

B.C. nurses report rise in depression, anxiety, exhaustion due to pandemic

A new UBC study looks into how the COVID-19 response has impacted frontline nurses

National child-care plan could help Canada rebound from COVID-induced economic crisis: prof

A $2 billion investment this year could help parents during second wave of pandemic

Search suspended for Indigenous elder last seen mushroom picking in northwest B.C.

Mushroom picker Thomas (Tommy) Dennis has been missing since Sept. 16

Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

16 MLAs retiring from B.C. politics add up to $20M in pensions: Taxpayers Federation

Taxpayers pay $4 for every dollar MLAs contribute to their pensions

B.C. VOTES 2020: Few solutions offered for ‘out of control’ camping

B.C. Liberals, NDP spend millions as problem keeps growing

EDITORIAL: B.C. election bid a high-stakes game

Horgan is betting it all on a single roll of the dice

Most Read