A group of local transplant recipients, caregivers and health professionals has started a support group in Victoria. It’s now running from 2:30 – 3:30 pm on the second Friday of each month at the Victoria Disability Resource Centre at 817A Fort Street. The facilities also support a video conferencing option for those who are unable to attend in person for health or distance reasons.
Transplant patients and families often experience isolation as the patient’s health declines. ‘“As transplant patients and families, we share a lot of the same issues and struggles, yet we’re often separated by geography or the nature of the disease the patient has”, explains Beth Campbell Duke, a designated caregiver for her lung transplant recipient husband, Tony. I met Erin Toplak, a local Respiratory Technician on a Facebook support group for BC lung transplant recipients, and we started talking about creating a local support group that would also include video conferencing for those who were unable to physically get to the meeting”.
The video conferencing option isn’t just a feature for those who live outside Victoria, but addresses a need of those in the Cystic Fibrosis community. The reality for the CF patients Erin works with is that they know they will require a transplant and are looking for information from other transplant recipients, especially those who have had lung transplants. To make support group planning more challenging, CF patients are unable to attend meetings where there will be another CF patient present because of the risk of transmitting bacteria that cause potentially fatal lung infections. So video conferencing via Zoom was included as part of the plan.
As planning proceeded, the group grew to include Peggy Mahoney, herself a liver transplant recipient and clinical counsellor. Like many transplant recipients, Peggy has noticed gaps in available supports for patients and families especially those living outside of the Greater Vancouver area. “Those of us who have been through the process have valuable information for patients thinking about a transplant. I wish I had this kind of support when I was trying to navigate the system.”
“The stress during the pre-transplant period was overwhelming,” adds Tony Duke. “I was desperate for a transplant and had already been told to get my affairs in order. As I was in a rural community, I was isolated from the world, except for Beth. I felt that I was the only person on Vancouver Island in this situation. It was the isolation from any kind of community that created the enormous stress on both of us. I’m really hoping that we can get the word out and create a helpful resource for transplant patients and caregivers in Victoria and BC.”
The Victoria Transplant Support Group meets the 2nd Friday of every month from 2:30 – 3:30 at the Victoria Disability Resource Centre, 817A Fort Street. For more information: See our webpage at TransplantRogues.com/victoria-