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

9 Victoria-area restaurants make top 100 most scenic dining list

Open Table compiled the list by reviews from diners between June 1, 2018 and May 31 of this year

Justin Trudeau’s carbon footprint revealed in ranking of world leaders

Travel company ranks 15 world leaders’ foreign flight CO2 emissions

Average rent for one-bedroom in Victoria nears $1,400: PadMapper

Victoria sixth in Canada for most expensive rent

Trudeau announces $79M investment for 118 more public transit buses across B.C.

Contributions from municipal to federal level to fund more buses in a bid to cut commutes

VIDEO: 1,400 classic cars roll into Victoria for Deuce Days

The four-day festival highlights classic hot rods, with a special emphasis on cars built in 1932

POLL: Do you carry reusable shopping bags?

While a court ruling determined the City of Victoria’s plastic bag ban… Continue reading

Greater Victoria wanted list for the week of July 16

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

B.C. First Nation’s group using ads in Texas targeting company for fuel spill

The Heiltsuk Tribal Council has called out Kirby Corporation for the Nathan E. Stewart oil spill

B.C. woman wins record $2.1 million on casino slot machine

‘That night was so surreal … I wasn’t able to sleep or eat for the first two days,’ she said

$900M settlement reached in class action on sexual misconduct in Canadian military

After facing criticism, the government moved to begin settlement proceedings in early 2018

Tax take stays ahead of increased B.C. government spending

Tax revenue $2.1 billion higher than budget in 2018-19

Most Read