As a young couple, Niilo Edwards and Rachael Durie have endured more adversity than most people their age. After nearly a decade of marriage, they were faced with a shocking diagnosis that forced them to pause and re-examine the future.
It was July 2018 when Niilo began experiencing persistent fatigue and a cough. As a busy professional it was easy to attribute these new symptoms to his demanding schedule. It quickly became apparent that rest and relaxation were not the solution. A blood test revealed something was seriously wrong and Niilo was advised to go straight to the emergency department. Little did the two know this would be the start of many visits to Vancouver General Hospital (VGH).
Niilo was diagnosed with Anti-Glomerular Basement Membrane Disease (Anti-GBM), a rare autoimmune disease in which the body attacks and destroys the filtering units of the kidney. In an effort to stabilize Niilo, he underwent 15 rounds of plasma-exchange and treatment with powerful immunosuppressive and chemotherapy drugs. While this halted the progression of the disease, the damage was already done. Niilo needed a kidney transplant.
Fortunately for Niilo, his remaining kidney function allowed him the time to explore a pre-emptive living kidney transplant with Rachael as his donor. Rachael recalls, “I had a quiet confidence I would be his match. We do everything together so this just made sense that of course it would be me!”
Extensive testing confirmed what she already knew – Rachael was a match. The decision to become a living donor was a no-brainer for Rachael, only further reinforced by witnessing the transformative powers of transplant “Niilo has been given his life back. He is no longer a muted version of himself,” says Rachael.
The experience of being a living donor and watching her husband endure so much has been a powerful reminder for Rachael that the ability to make a difference resides in each of us. “Transplantation matters. It saves the lives of recipients. Transplantation uplifts the families, friends, and communities of those recipients,” she explains. “It brings together strangers and turns tragedy into hope, love, and opportunity.”
With renewed health and a zest for life, Niilo and Rachael have hope for the future and intend to live life to the fullest. They also envision a brighter future for transplant medicine where access is more equitable. “We would love to see barriers to treatment removed, including better funding for patient care closer to home; transplant surgeries taking place in the North, Interior, on the Island; and increased access to mental health supports for recipients, living donors, and their caregivers.”
Looking back on the last few years has given the couple a greater appreciation for the complexities of organ donation and transplantation. They are acutely aware that transplant is not a cure but rather a treatment requiring ongoing monitoring and maintenance. Nevertheless, they are confident that research will continue to generate knowledge and discoveries that will build on current medical advances. “Without research, we would not be where we are today. We are thankful for all of the patients, donors, doctors, and researchers who came before, paving the way to make transplant what it is today. With each new patient and research study, medical professionals are able to learn, grow, and adapt new technologies to improve outcomes for future transplant patients. Research is the ultimate beacon of hope and possibility.”
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