I'm here to help personalize the need for a national system. As Elizabeth mentioned, my father lives on dialysis, and last year my husband became a deceased organ donor.
To help support my father, my brother has quit his job as a teacher and moved home to the family farm to be there for him. He's not allowed to live alone. He travels about 30 minutes one way to a hospital, spends four hours at the hospital each time, and then travels back home. As a result, his energy is depleted. He mostly watches TV now and reads books instead of being out on the tractor and mowing the lawn.
My husband's story is harder to tell. Last year I came home from a winter camping workshop and the house was dark. I came in and I could hear banging on the second floor. I went up the stairs and I found my husband in non-stop seizures, unconscious. He was rushed to the local hospital, where he had a heart attack in addition to the seizures. The main thing was that they brought him back to life. He was living. They got him to the Ottawa Hospital, where he was sent to the ICU and put on life support. If he hadn't lived long enough to reach the ICU, he would not have been able to be an organ donor. Of course, I wasn't thinking about that at the time; I wanted him to live.
After about two days, it was clear that although the ICU doctor and nurses did their best to stop the seizures, my 57-year-old seemingly healthy husband probably would not survive. That's when they began to speak to me about organ donation.
The timing was right. He told me that he had checked the donor registry. He knew that Stephen had consented to organ and tissue donation. At that moment, surprisingly Stephen's mom and I were lifted up by this news. We could tell we were going to lose Stephen. There was very little chance that even if he survived he would function, so this opportunity was a gift, and it immediately felt like a gift. It gave us something to cling to.
The doctor explained that there was a Trillium Gift of Life coordinator in the other room ready to speak to us if we had already made our decision or if we had any questions. He said explicitly that he and the coordinator would never be in the same room at this stage so that we didn't feel outnumbered or pressured to come to a positive decision about donation. For me, that was important.
He stepped out, Stephen's mom and I conferred, and then the Trillium Gift of Life coordinator entered at our request when we were ready. She explained that if we agreed to Stephen's wishes, it would mean he would be on life support for an extra day. They'd try to get him off as quickly as possible, but it would take at least a day to bring together the transplant team and the potential recipients to begin the matching.
At that moment, knowing that my father was on dialysis, I wondered if one of Stephen's kidneys could be transplanted to my father, and wouldn't that make a great movie? But life isn't a movie, and my father was not eligible for a transplant. Of course, we were still thrilled to know that in another day probably several families—up to eight—would be utterly joyous, while we continued to grieve. Although we were in despair at our loss, we didn't want to deny other families the possibility that their loved one could be saved and live a much healthier life.
A week after deciding that I'd be an advocate and an educator, I received the best thank you card ever. This is from the young man who received a double lung transplant and is now breathing through my husband's lungs. He said he was able to spend Christmas at home with his family for the first time in three years. He's building skills that he couldn't have otherwise, after many more years in the hospital. What touched me most was that he said he thinks of his donor family every time he breathes. His last line was that the word grateful couldn't begin to describe how he felt. He thanked us and said that we had saved his life.
I'm here to emphasize that organ and tissue donation doesn't just help the recipients and their families. It doesn't just reduce the tremendous cost of long-term kidney treatment. It can also be an incredible gift to bereaved families like mine, because when presented gently and ethically, at the right time, when there's little or no hope of a loved one's survival, it is a gift. Knowing that five people's lives probably improved dramatically with Stephen's lungs, kidneys, and corneas doesn't change his death and the intensity of our grief, but it gives us moments of relief.
Stephen lives on through those five people.