The Ward

The staff at Sabor Divino, a Portuguese eatery in downtown Edmonton, shake their heads in shared relief when filmmaker Rosie Dransfeld reports that Kenny, one of the subjects of her new film, The Ward, is doing much better.

 “Kenny, man,” says Christian Mena, owner of the bistro, recalling his former cook. “He was such a cool guy. He had a band, he had school, he had the girls. And now…”

 Now Kenny, like the other subjects of Dransfeld’s latest documentary on the subject of Alberta’s distinction of being the worst amongst all the provinces in organ donations, goes to dialysis four hours a day for three days out of the week. So compromised, is Kenny, that a fall before treatment means a whole round of x-rays to check for broken ribs. A diabetic since he was 12, the 31 year old has been on dialysis for two years, but his health is deteriorating quickly. He needs a transplant soon, or he will be too ill to receive one at all.

 Dransfeld, a Gemini award-winning documentary filmmaker most recently known for Who Cares, her story of workers in Edmonton’s sex trade, made The Ward after meeting with the Alberta Transplant Institute. Frustrated by the terrible state of Alberta’s donation rate, the Institute approached the filmmaker with the idea of putting a human face to this debacle. On average, 75 Albertans will die waiting for an organ. This means 40% of people on the transplant waiting list do not survive before this life saving solution can be provided.

 The Ward tells the story of seven people who endure the inconvenience, anxiety and discomfort of dialysis as they wait for news that they’re getting an organ. Some have been on the list for a long time.   Sonya, a vibrant woman in her 30s, has spent 20 years of dialysis, only putting herself on the transplant list 6 years ago. Her wait has been interrupted a few times, when she became too ill to transplant. She’s back on the list, and again, waiting. Bill, an active farmer in his 70s, has been driving 110 km each way to Edmonton for treatment over the last five years. Tracy, a tough-talking woman with a great sense of humour, has been on dialysis for 37 years. After several rejected transplants, her deteriorating health has affected her mobility, but not her fighting spirit.

 All these people need “the gift of life” – an organ, most often granted by a family after someone they love has died – often suddenly.

 Within hours of receiving the devastating news, the family must decide whether or not the deceased becomes an organ donor. “If this is the first time the family has ever even considered this, imagine how hard the decision would be,” Dransfeld asks.

 In her film, she wants to start this dialogue, first with her viewers, but then, it is her hope that the conversation will happen amongst friends and family. “If people talked about donation before something catastrophic happened, then perhaps the decision would not be so overwhelming.”

 Alberta is now taking steps to improve its low organ donation rate. It has just recently launched an online donor registry website where people can register their intent to donate their organs. Healthcare professionals can access this database, and let the family of a deceased person know their loved one’s intentions.

 “The time is right to tell this story,” Dransfeld says. “It’s a story about generosity and kindness. It’s about turning tragedy into something meaningful. If your loved one dies, knowing you could do something that gives someone else a new life – that’s very hopeful.”

 The film also tells these stories – the ones that show this indescribable generosity at work. Brayden, a handsome, quiet teen from Gift Lake, receives a kidney from his mother. At end-stage renal failure, Braydon needed a transplant immediately. His mother was a good match, and in the film we see the transplant process, from the mother’s kidney removal to its insertion into Braydon’s body. “His brain function and growth will improve dramatically,” says the smiling transplant surgeon, Gerry Todd. Another patient received a new liver two weeks previously from a stranger who died suddenly. “Now he can walk his daughter down the aisle,” his wife says. “Thanks to someone’s kindness, these incredible people… I thank them from the bottom of my heart.”

 Currently, there are 324 Albertans waiting for a new kidney, 17 need a heart transplant, 94 need a liver, and 57 require a lung transplant. The list is very long, and the wait is very difficult, physically and emotionally. “This film is meant to raise awareness,” says Dransfeld. “If more people were aware of the need, and what they could do, I believe our rate would go up, and these people we meet in the film might have a better chance of getting a new life.”

 At the end of the film, we see Brayden again – he tells us how well he’s feeling, and how happy he is to be going back to his community so he can go hunting and fishing, Then Braydon gives us all three things to do:

 Let your family know you want to be a donor.

 Sign your donor consent on the back of your healthcare card.

 Register online: https://myhealth.alberta.ca/Pages/OTDRRegister.aspx

The Ward will be broadcast August 30 at 7 pm on CBC Alberta and online at http://www.cbc.ca/absolutelycanadian/alberta

Registry agents to help Albertans become organ and tissue donors | Alberta.ca.

Finally, we’re on the right path.

The Alberta government initially disappointed when it launched it’s new “organ and tissue” intent-to-donate registry. Fears instilled by process, lawyers, etc. prevented the launch of an purely online process for registering intent, as currently happens in other provinces in Canada, including Ontario and B.C. Instead, after registering online, you a required to then print off, sign (with a witness present) and mail or fax your form.

I’ve been on the front line of this movement in Alberta since the beginning (at least of this iteration — transplant surgeons have been fighting for changes to the way we manage our organ donation system, from the perspective of public buy-in, for over a decade).  I signed up online, but haven’t mailed in my registration yet. Two other close friends, also critical players supporting the movement to change Alberta’s current system, have registered, but not mailed in their forms.

It’s human nature (aka laziness? apathy?) — unless you make something as important as this as seamless and simple as possible, you will miss opportunities by the thousands.

So now, kudos to the GOA for moving forward to the next critical step in the process.  While its still not something you can do from home, in your pyjamas, on the couch, after binge-watching Orange is the New Black, it’s the next best thing.  The next time you go to a registry office, for whatever reason, you can ask the agent to add to your profile your wish that, should the worst possible thing imaginable happen to you, that you then want the best possible thing to happen for the family of someone who has been waiting a very long time for the gift of life – a new organ, or new eyes to see the world, or a myriad of other benefits that you could provide.

Register your intent to be an organ and tissue donor next time you’re in. It’s easy.