Should individuals campaign for their own organ donors?


The following is my response to this week’s Toronto Star article:

toronto-star-article-re-advocating-for-organ

………….

I can’t believe that is even a question.

This is not a matter of rich and cute; the media chooses who to feature. Desperate people do desperate things to continue living, including posting signs on placards, cars, and billboards, and flying to other countries for purchased kidneys.

Why would anyone who can make a public campaign just wait in a long line for their organ to fail? Creating a public plea for living donors is beneficial to the thousands waiting for a kidney, liver, lung-or more-who do not have the voice, support or resources to do so. As you rightfully mention, the plea creates both deceased and living donor awareness, in addition to offering a potential spillover effect…

living-donor-registry-photo

Here’s a brief outline of my family’s story.

In 2010, my husband’s kidneys suddenly failed. Not one to ask others to do what I can myself, I went through 11 months of tests and was approved to donate my kidney to my husband. Two and a half years later, a rare reaction to the polyomavirus slowly attacked the kidney, and in January of this year my husband once again began undergoing four to five hour long hospital dialysis treatments three times a week.

Our lives changed drastically.

Since there is no living organ donor candidate list in Canada, we determined not to sit back and wait the current 6-10 years for his name to be reached on Ontario’s list for a cadaver kidney. My family leapt into action:

  • I created an online petition to create a living organ donor candidate list:
  • We composed a letter outlining our situation, what it means to be a living donor, who to reach for more information, and a request to sign our petition. We circulated the letter among our personal and social media networks, and to media outlets.
  • We created a Facebook page and Twitter hashtags.
  • Partnering with the Kidney Foundation of Canada, after seven months of intensive planning, we initiated a 30 kilometre six person – including a female Olympic hopeful – relay swim across Lake Muskoka on July 30th this year.

organdonorswim-logo

It was a remarkable day with remarkable volunteers, many of whom arrived as strangers to us. Not only did the swim raise awareness about organ donation through media coverage, it raised enough monies through donations to send 10 (!!!) children with kidney issues to a week at summer camp:.

BTW: This past Thursday, my husband was completely unexpectedly notified of a matching kidney from a deceased donor available for him. We prayed for the grieving family, and then hurried down to the hospital; he underwent a series of tests to evaluate his suitability; he stayed overnight, enduring more tests; our kids gathered in the morning. On Friday, just an hour before the scheduled surgery, we were told the potential donated kidney was unfortunately compromised.

Two liver and two kidney surgeries were cancelled. We returned home to continue our campaign—for ourselves, and for others.

…..

The Star article was based on results of a current paper released by The Canadian Society of Transplantation.

If you haven’t already signed your organ card, please consider doing so. Your donation can save or enhance eight lives. Click here for more information about making donation part of your legacy plan.

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3 thoughts on “Should individuals campaign for their own organ donors?

  1. You have done such a remarkable amount of good work publicizing the need for organ donation. We hope and pray that your husband gets his kidney.

  2. So sad to read that the transplant did not go through. Keeping the faith that Paul will get a suitable match soon. Keep up the wonderful work you are doing; you have done so much to publicize the need and inspired me , and I hope many others, to fill out my donation card when renewed my drivers licence , which I never had before. Keep speaking out.

  3. Nellie your dedication determination and initiative is a testimony to your capacity for love.
    You have brought so much awareness to so many !!

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