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.
“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.
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.