Organ Donation in YMM

Organ donation is something we talk about on occasion, but it is generally only when it is newsworthy – like the first heart transplant – that we hear about it at anything more than a low level hum. That changed in 2018, when one of the players tragically killed in the devastating Humboldt Broncos bus crash inspired thousands of Canadians across the country to sign their donor cards. Logan Boulet, just 21 years old, suffered severe head and spinal cord injuries in the accident; when his parents learned he would not recover from his injuries they made an incredible choice.

They donated his organs upon his death. And the result was something now known as the Logan Boulet Effect, in which thousands of individuals registered as organ donors inspired by this selfless act of generosity and courage.

In our own region, it is difficult to say how many have been impacted by organ donation, whether on the giving or receiving end. On April 7, 2019, Canadians honoured Logan by marking the first Green Shirt Day, a day dedicated to organ donation and transplantation. A few residents who have been recipients of organ and tissue transplantation also marked this day by requesting RMWB Council proclaim the day in the region, and by sharing the message of the impact of organ donation on their lives. In 2020, these individuals will once again mark this day as we honour Logan – and all those who choose to donate, and to the lives changed by this selfless act.

For James Whaley, the heart transplant he received in 1997 at the age of 15 was almost certainly his only chance of survival. Diagnosed with viral cardiomyopathy, he was in critical condition when he was wait-listed for a heart; and his 10% survival rate without donation ensured he shot directly to the top of the list. The transplant he received after 6 days on the list ensured his survival – and the chance at a relatively normal life.

“I was on life support when they placed me on the wait list,” says James. “Because I was so sick, I was placed at the top the list for the country. It was a second chance at life.”

In Derek William’s case, the discovery of polycystic kidney disease occurred in 2000 during an ultrasound for an unrelated issue. This progressive disease diminishes kidney function until renal failure occurs; and in 2014 Derek was waitlisted for a kidney transplant. He received a kidney through a live donor transplant in 2018, which changed his life immensely as he had been receiving dialysis treatment since May of 2014. Derek was fortunate as while he began his dialysis at the University of Alberta Hospital in Edmonton, through a training program he and his wife Kelly were able to learn how to deliver dialysis at home. It was only through this home dialysis program that Derek was able to resume most of his normal life, including participating in his daughter’s activities and working full time with Syncrude Canada. But the dialysis, completed 3-4 times weekly, consisted of being hooked up to the dialysis machine at night for several hours as the machine “cleaned” his blood, limiting his ability to travel and enjoy many of the things others take for granted.

As Derek says: “It has given me my life back. I am not restricted by needing dialysis every second day and I have freedom to travel and I am no longer waiting and anticipating a call to receive an organ. My overall well-being and health have been better since the transplant - better blood work results, less medications, fewer medical appointments and increased energy and less worry about prolonged dialysis impacting my health and decreasing my eligibility to receive an organ.”

For Angela Dingwell, the journey began when she was thirteen years old when a common virus – the one that causes the ubiquitous “strep throat” – attacked her kidneys and destroyed their function. She was immediately placed on dialysis, which continued for three years until her first transplant in 1995. Her dialysis was intensive – 12 hours a day, 7 days a week and 365 days a year, a tremendous challenge for a young woman who until then had been completely healthy.

Says Angela: “The transplant changed how I lived my life. I felt like I was free again. After having spent so much time hooked up to a machine, it was almost as if I was given a new life. The dialysis hindered my ability to do many physical activities.  Having a transplant opened up the opportunity for me to be able to do all the things I had done before dialysis and all the things I dreamt of doing. After my transplant I was able to consider attending university to fulfil my dreams of becoming an educator, something that was put on hold while I was awaiting a transplant. Which, I did do and continued to progress through a few degrees.”

And organ and tissue donation has touched my own life. In 2018, after almost two decades of struggling with a disease that first damaged and then destroyed my cornea, I received a corneal transplant that ended years of pain and restored some of the vision lost to my disease. Another common virus, responsible for cold sores, travelled the wrong nerve path in 1999 and landed directly in my cornea. Until 2016 a corneal transplant was something I had never even contemplated; but in 2018 as we pondered the decision between enucleation (a fancy word for removal) and transplantation, the choice seemed obvious. It has been entirely life changing; and while transplantation didn’t save my life it forever altered it for the better, not just because of the lessening of my pain but because it confirmed my belief in our altruistic nature as someone, somewhere, with the support of their family, made the choice that upon their death they would donate their cornea – and it now lives on in me.

In late 2019, Mark Jones of the United Conservative Party tabled a private member’s bill that would introduce an opt-out system for organ donation in Alberta. This system would presume consent; and those who do not wish to donate organs would need to register to not donate. It is believed this bill would save hundreds of lives. But in the end, it is not only the life of the transplant recipient that is changed but the lives of those around them.

As Angela Dingwell says: “Having a transplant has been the greatest gift that I have ever received. I have been given the gift of life. Because of the selfless act of an organ donor, I was able to fulfill all my dreams - becoming an educator and more importantly a mom. None of these dreams would have been attainable for me in a restricted life of dialysis. It’s sometimes hard to put in words the emotions that I feel when I think about the fact that someone was so selfless and gave life. Feeling grateful, giving thanks, feeling Immense   towards my donor are just some emotions that overwhelm me on the daily.  It’s never far from my mind that I know I have been given the greatest gift of all.”

When one sees Angela’s beautiful children, who would not exist without the transplants she has received, you cannot help but see how organ donation changes lives – and allows recipients to truly live. As we prepare to honour Logan Boulet and his legacy in April of this year, we hope our stories – and his memory – inspire others in our community to register as organ donors and consider giving the most precious of all gifts - life.