Ca. One year before her husband wanted to undergo a double lung transplant, Beth Campbell Duke made a website to keep friends and family updated about Toni's condition. Now she transforms the website to help other families and transplant recipients navigate their care.
"Medical was all excellent. It's this non-medical social support, where things get pretty clear," she said, adding that there are economic and mental health issues that the families need to cope with.
In addition to the physical toll of the graft itself, there are many hospital visits, long-term stays and tests. A family care recipient is required for a transplant recipient to even do it on the transplant list.
"You do not go there alone. People need to think if they needed a transplant that would lose everything and be with them in Vancouver – one of the world's most expensive cities – when you're not working for four for six months. Will everything go right, "she said.
The mental health bill begins before a transplant, Campbell-Duke said, as patients have been chronically ill for a significant period before surgery. The process of getting a transplant and then healing from one can take years when the caretaker takes clumps of free time if they can continue to work at all.
Less work means less income to cover medical expenses and travel related to hospital stays, especially for those who do not live in Vancouver and have to pay for accommodation.
Although families get a lot of training before and after care, she said the huge learning curve, and lack of support can be overwhelming.
"What I noticed when we went through the transplant was how many other family caregivers – more than the patient – struggled to cope with the expectations and materials they were delivered," said Campbell Duke.
Campbell-Duke has a background in science and education and decided to use her nurture experience for her husband to help others. In Victoria, where she and Tony moved from Comox Valley, they tried to set up a support group. However, given the number of transplant recipients who can not plan schedules too far in advance – their energy and health vary rapidly – no one showed up. So they became an online resource.
The website, TransplantRogues.com, helps provide financial help information, peer support, a monthly conference call and how to use medical materials for carers. Campbell-Duke said that there will be focus on mental health for both patients and their families as they navigate survivors', post-traumatic stress and relationships. A membership of the website will provide additional resources, and she hopes that the proceeds will help to use transplant recipients who may not return to work. Campbell-Duke hopes to make the website work in 2019.
Like us on Facebook and follow us on Twitter