National organ donation registry

Yesterday it was announced that Canada will finally develop a national organ donation registry. This registry will replace the many provincial and regional networks which currently manage life-saving surgeries for thousands of Canadians surviving with kidney, liver, lung, heart, and other organ failure.

Three years ago, Chris was near or at the top of the organ donation waiting list in Ottawa. Since Ontario alone has five completely separate and locally managed transplant regions - each with its own waiting lists - he was removed from that list shortly before we moved because he would no longer be living in the Ottawa region. It was our understanding that he would be assessed soon after his arrival in London and placed on their regional organ donation waiting list.

He lingered a jaw-dropping 14 months on the assessment waiting list before being scheduled for the full-day series of appointments to meet with the various members of the transplant assessment team: co-ordinator, social worker, nephrologists, transplant surgeons, etc. With a single registry, his file could simply have been transferred without being removed from the waiting list.

There were many times when he would give me an update of the latest anticipated wait time before the assessment that I lost all patience with the snail's pace bureaucracy of our healthcare system. I fumed and swore and railed on, demanding answers from Chris that he did not have. He was too patient for my fervent caregiver-driven frustration but it was his body and his condition and I knew I had to accept that.

Over my years living with and loving Chris, I came to understand how he – like anyone who faces a health crisis - had to steer his own course, comfortable with his own fully informed decisions and full participation as the key member of his healthcare team. This was the philosophy at the core of his PhD research interest.

In the end he never made it back onto an active organ donation waiting list because of the complications he developed from Encapsulating Peritoneal Sclerosis. The assessment team was waiting to see if he would respond to treatment before possibly undergoing the strain of transplant surgery and whether it might also jeopardize the precious donor kidney.

The new national organ donation registry will hopefully ease painful and frustrating wait times such as Chris and I endured. It will also open up the pool of available deceased donor organs to the best-suited candidates – no matter where they live – thus ensuring the best possible matches as well as creating opportunities for paired exchange donations. The new registry will also hopefully increase awareness of growing organ donation needs.

One issue that I am emphatic about is the validity of a deceased donor’s wishes over the possible dissension of their surviving family members. If someone has made the decision to donate their organs after death, that decision should be as binding as their will or any other legal document they made in anticipation of their death. Obviously healthcare staff must handle these situations with delicacy and empathy but in the end the deceased person’s wishes should be fulfilled.

Be a lifesaver. Sign your organ donation card or mark that choice on your health insurance card or driver’s license and – most importantly - talk with your family about this issue.
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