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

Ninja groups could be setting children up for identity theft, online safety expert says

‘When I started seeing entry codes into secure buildings, I’m thinking oh my God, what are we doing?’

Saanich Peninsula steps into post-pandemic phase

Pending partial re-opening of local schools signals new start

Craft vendors allowed to re-join Goldstream Farmers Market

Dr. Bonnie Henry lightens restrictions, approves non-food items to be sold

Three people sent to hospital following serious crash in View Royal

Incident involved a motorcycle and one vehicle on Sunday afternoon

Tour de Rock alum is newest Oak Bay Police officer

Const. Derek Brand did nine years as volunteer reserve officer

VIDEO: Injured bald eagle rescued in B.C. First Nations community

Bird suspected injured in fight, whisked off to Coquitlam rehab

Toronto Raptors’ Ujiri says conversations about racism can no longer be avoided

Thousands have protested Floyd’s death and repeated police killings of black men across the United States

‘I’m afraid’: Witnesses of wolf attack on senior near Prince Rupert worried about safety

Frank Russ shows where the unprovoked wolf attacked his father

Protesters prepare to rally against racism in front of Vancouver Art Gallery

Rally is in response to the deaths of black Americans and a Toronto woman

Man dies in ATV accident south of Nanaimo

Incident happened on backroad Friday night in Nanaimo Lakes area

Protesters rally against anti-black, Indigenous racism in Toronto

Police estimated the crowd to be between 3,500 and 4,000 and said there was no violence

Feds earmark $1.5M to support recovery of B.C., Indigenous tourism

B.C. money will be split between Vancouver Island and Indigenous tourism

‘We’re sick of it’: Anger over police killings shatters U.S.

Tens of thousands marched to protest the death of George Floyd

Most Read