The resources are aimed at people facing kidney failure who would like to learn more about kidney transplants and how to try to find a living donor. Information is also available for people considering donating one of their kidneys.
The materials are part of a BC Renal and BC Transplant initiative called Transplant First, which aims to support recipients and donors through the pre-transplant process. The goal is to have a living kidney donor match before the patient needs to have dialysis treatment. Because of this, these transplants are described as “pre-emptive.” However, the resources can also be helpful for patients who need dialysis treatment before they’re able to find a donor.
The new web pages provide a summary of steps, plus link to PDF handouts that include helpful tools, such as a "Questions to ask my kidney care team" section and a "Where am I in the transplant process?" checklist.
BC Renal patient partners helped develop the step-by-step materials. Patient partner Bill Dear, who donated a kidney to his sister in 1978 - which extended her life by almost 40 years - also became a kidney transplant recipient in 2020, in his case from a deceased donor.
“I have seen how overwhelming the news of kidney failure can be,” says Bill. “When that happens to you, having a step-by-step program to educate and guide you helps you to focus on where you want your life to go.”
Bill continues, “From my experience, the end result of a transplant is much better than any other choice, and the best choice in transplant is pre-emptive transplant. This is normally only available by having a living donor. The step-by-step program helps patients to learn how to find a living donor and to take one step at a time through the process.”
Fellow patient partner Stephen Gillis, who received a kidney transplant from a living donor in 2020 also speaks about how difficult it can be to learn that a kidney transplant can be the best option for saving your life.
“Finding out that you need a transplant is one of the most challenging conversations you will ever have,” says Stephen. “It is preceded by a whirlwind of emotions and the giant questions of, how do I find a donor?”
Stephen adds, “A step-by-step approach to learning about living donor kidney transplantation provides patients with guidance, a pathway forward, and ultimately hope.”
Excerpt from Step 1 patient handout
BC Renal continually seeks feedback from patients and health professionals on new and updated resources. A summer 2022 survey of regional health authority staff about these step-by-step resources confirmed they are useful and also provided some ideas for further improvements.
“We are grateful for feedback from staff from around the province and look forward to making additional improvements over time,” says project manager Sharon Gradin. “In the meantime, it was an amazing process to collaborate with patient partners and with BC Transplant, and we are excited to introduce this step-by-step approach.