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

Just Posted

B.C. population on pace to fall behind Alberta

Provincial population could reach almost seven million in 2043, but Alberta is growing faster

Cloudy, chance of showers ahead for Wednesday

Plus a look ahead at your weekend

Greater Victoria could see a months worth of rain within a week this fall

Weather Network predicts wet, warm fall season for B.C.

Saanich brings Uptown-Douglas Corridor draft plan to the public

Feedback from residents will help finalize the plan

Central Saanich Police issue recommendations to homeowners after break-in

Incident happened over weekend in Tanner Ridge area

WATCH: United Way #Drive4Five event launches campaign to raise $5 million

More than 80,000 lives changed last year by the United Way

Crime Stoppers most wanted for Greater Victoria for the week of September 17

Greater Victoria Crime Stoppers is seeking the public’s help in locating the… Continue reading

Canadian inflation decelerates to 1.9% as gas prices weaken

August was the sixth straight month that price growth was 1.9 per cent or higher

Man who crushed Nanaimo RCMP cars with stolen truck gets more jail time

Majore Jackson, 34, sentenced to two more years in jail in provincial court in Nanaimo

B.C. dog breeder banned again after 46 dogs seized

The SPCA seized the animals from Terry Baker, 66, in February 2018

Surrey mom allegedly paid $400,000 for son in U.S. college bribery scam

Xiaoning Sui, 48, was arrested in Spain on Monday night

Three dogs found shot dead in Prince George ditch

The three adult dogs appeared to be well cared for before being found with gunshot wounds, BC SPCA says

B.C. party bus company to be monitored after 40 intoxicated teens found onboard

Police received tip teens and young adults were drinking on party buses and limousines in Surrey

Rick Mercer calls out Conservative candidate in B.C. for fake meme

‘Not true. All fake. Please Stop,’ tweeted Rick Mercer in response

Most Read