About a year before her husband endured a double lung transplant, Beth Campbell-Duke made a website to keep his friends and family up to date on Tony's condition. She is now transforming this website to help other families and transplant recipients orient themselves in their care.
"Medical was all right, it's this non-medical social support where things get pretty blurry," she said, adding that families need to fight financial and psychological problems.
Besides the physical load of the transplant itself, there are many hospital visits, long-term stays and tests. For the transplant recipient, family care is required to make it even on the transplant list.
– You do not just go in there. People need to think if they need a transplant that will reject everything and be with them in Vancouver – one of the most expensive cities in the world – when you do not work for four to six months. If everything goes well, "she said.
The mental health trend begins before the transplant, Campbell-Duke said, as patients were chronically ill for a significant period of time before surgery. The process of getting a transplant and then healing from one can take years of time when the trustee takes a break from work if he is able to continue working 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 may pay for accommodation.
Although families receive a lot of care before and after the surgery, she said that the vast learning curve and lack of support may be prevalent.
"What I noticed when we were experiencing a transplant was how many other family carers, particularly the patients, in particular, were trying to cope with the expectations and the materials they were given," Campbell-Duke said.
Campbell-Duke has experience in science and education and decides to use her husband care experience to help others. In Victoria, where she and Tony move from the Comox Valley, they are trying to create a support group. But considering how many transplant recipients can not plan schedules too soon – their energy and health change rapidly – no one appears. So they have become an online resource.
The TransplantRogues.com website will help you by providing information on financial assistance, peer support, a monthly conference call, and how to use the medical supplies given to carers. Campbell-Duke said he would focus on mental health for both patients and their families while moving with the guilt of survivors, post-traumatic stress, and ties. The membership section of the website will provide additional resources and hopes that the proceeds will help recruit recipients who will otherwise not be able to return to work. Campbell-Duke hopes the site will be commissioned for 2019
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