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)

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

Carolyn Howe, a kindergarten teacher and vice president of the Greater Victoria Teachers’ Association, says educators are feeling the strain of the COVID-19 pandemic and the influx of pressure that comes with it. (Nina Grossman/News Staff)
Stress leave, tears and insomnia: Greater Victoria teachers feel the strain of COVID-19

One year in, teachers still adjusting to mask and cleaning rules, pressure from families

The value of new construction in North Saanich topped $52.1 million in 2020 (Peninsula News Review)
Value of new construction in North Saanich topped $52.1 million in 2020

New figures also show 25 per cent increase in number of new secondary suites

Greg Chow is the 2021 Local Hero of the Year. (Don Denton/Black Press Media)
Fighting fire a family affair for Colwood Assistant Chief Greg Chow

With 38 years of service, Greg Chow is the 2021 Hero of the Year

(Black Press Media file photo)
B.C. residents can reserve provincial camp sites starting March 8

B.C. residents get priority access to camping reservations in province

Dr. Bonnie Henry talk about the next steps in B.C.'s COVID-19 Immunization Plan during a press conference at Legislature in Victoria, B.C., on Friday, January 22, 2021. THE CANADIAN PRESS/Chad Hipolito
456 new COVID-19 cases in B.C., 2 deaths

Since January 2020, 78,278 have tested positive for the novel coronavirus in B.C.

Anyone with information on any of these individuals is asked to call 1-800-222-TIPS (8477) or visit the website victoriacrimestoppers.ca for more information.
Greater Victoria Crime Stoppers wanted list for the week of Feb. 23

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

(Black Press Media File Photo)
POLL: Are you struggling with Greater Victoria’s cost of housing?

While Victoria remains one of the most expensive cities in the country… Continue reading

A health-care worker prepares a dose of the Pfizer-BioNTech COVID-19 vaccine at a UHN COVID-19 vaccine clinic in Toronto on Thursday, January 7, 2021. (THE CANADIAN PRESS/Nathan Denette)
Vaccinating essential workers before seniors in B.C. could save lives: experts

A new study says the switch could also save up to $230 million in provincial health-care costs

The late Michael Gregory, 57, is accused of sexually exploiting six junior high students between 1999 and 2005. (Pixabay)
Former Alberta teacher accused of sexually assaulting students found dead in B.C.

Mounties say Michael Gregory’s death has been deemed ‘non-suspicious’

According to a new poll, a majority of Canadians want to see illicit drugs decriminalized. (THE ASSOCIATED PRESS)
Majority of Canadians think it’s high time to decriminalize illicit drugs: poll

More than two-times the B.C. residents know someone who died from an overdose compared to rest of Canada

Photograph By @KAYLAXANDERSON
VIDEO: Lynx grabs lunch in Kamloops

A lynx surprises a group of ducks and picks one off for lunch

Two women were arrested in Nanaimo for refusing to wear masks and causing disturbance on a BC Ferries vessel. (File photo)
B.C. ferry passengers arrested and fined for disturbance, refusing to wear masks

Police said woman threatened their pensions in Feb. 21 incident aboard Nanaimo-bound boat

When his owner had knee surgery, Kevin, 2, was able to continue to go for walks thanks to volunteers from Elder Dog Canada. (Contributed photo)
B.C. woman has nothing but praise for Elder Dog Canada

National organization has a fleet of volunteer walkers ready, but needs more clients to serve

Most Read