BY: REGAN MCNEILL
I had never really thought about organ donation until my 16th birthday when I got my driver’s license and was given the option to “opt-in” as a potential donor in the event of my sudden death. Unbeknownst to me, organ donation would become a very relevant topic in my life.
I remember my special needs brother Scott being freakishly sick for quite a long time. My mom, sister and I thought his lack of energy and queasy stomach was symptomatic of mono or something else that would eventually go away. We did not know that his metallic smelling breath and jaundice skin were actually the result of kidney failure.
It felt as if our lives would be shaken forever one fateful day. So much so that the repercussions would make waves for years to come. My mom received a call from the doctor; Scott’s blood was extremely toxic and he would need to start hemodialysis immediately. When he got to the hospital, the doctors informed us that his kidneys had less than 5 per cent function and that he was in end stage renal failure. This effectively meant that Scott would need a transplant.
Luckily for my brother, my mom, who also happens to be a nurse, stepped up to the plate. Two years went by and after countless visits to dialysis, what felt like way too many organ compatibility tests, and one cancer scare later, my mom’s kidney seems to be getting along with Scott’s body quite fine.
But this got me thinking. As lucky as Scott was to have a mother so willing to help him, what about all of the other people waiting for kidneys? What about all of the people waiting for organs in general?
As heart wrenching as Scott’s story may seem, he was lucky. He had someone in his family who was willing to donate their kidney to him, and that fortunately matched. I cannot say that many people are afforded the same positive outcome.
One of the most outlandish organ donation stories to catch my eye throughout Scott’s journey was that of PhillyD’s, also known as Philip DeFranco. DeFranco is a YouTube personality with a considerably large online following. PhillyD has always been pretty open about his PKD (polycystic kidney disease) diagnosis, which his father Phil, “Papa DeFranco”, also has. Because of the disease his father had renal failure and needed a kidney. Up until 2013 DeFranco told his viewers about his dad, and it turns out a few were willing donors that pushed him to officiate the transplant. Through several years and donors, a man named James ended up being a good, but also compassionate, match for DeFranco’s father. In 2013 the transplant took place and both James and Papa DeFranco are living healthily today.
PhillyD was likely able to acquire an organ for his father simply because of his large following and the fact that people liked him, or maybe they wanted to be friends with him. Let’s just hope they wanted to help him out of the goodness of their own hearts.
But not everyone looking for an organ is a well-liked YouTube personality, nevermind using social media as a means of gaining recognition or support for a cause. Though it seems to be a lasting and effective trend on Facebook.
On May 1. 2012, Facebook altered its settings to allow people to specify as an “Organ Donor” in their profile. Just 13 days after this, over 100,000 Facebook members selected the option and 33,000 members who were not “previously designated organ donors completed this designation online.” This increase in donors is coined as the “Facebook effect” according to the American Society of Transplantation and the American Society of Transplant Surgeons.
Obviously I had to check this out for myself. So I typed into Google, “Facebook organ donor” and was redirected to a Facebook page inviting me to “Share Your [my] Organ Donor Status”. Here you are guided to links that allow you to register as a donor in only 20 different countries. Even if you are already registered as a donor, you can share your status with friends or other people in your social network. What this means is that you are spreading awareness and defining yourself while doing it. Again it poses the question as to why people are doing this, are they connected to the cause or seeking social acceptance?
The image that Facebook tries to maintain may seem bright and shiny, but there is a dark side. There are several Facebook pages, claiming to be legitimate, that encourage the selling and purchasing of organs over the World Wide Web. Even though this is illegal in many countries, it still happens and can result in dire circumstances for uninformed buyers or sellers. For example, the story of a teenage boy in China who sold a kidney for an iPad should be used as a cautionary tale. He received a little more than enough money to buy an iPad, but is now suffering major health consequences including renal deficiency.
Whether or not he did this using social media as a platform to connect him to the buyer, it goes to show that once people gain access to the black market, in certain situations such as financial instability, selling an organ seems like the most suitable (or perhaps singular) option. The Internet aids and encourages some people to do so in a community of similar interests but also of uninformed values. The thing about live organ donation in particular is that it is supposed to be considered an invaluable gift from the donor, not a product to be sold.
Though the black market is expanded through social media outlets, what happens to those who are simply asking for live donors to come forward of their own volition? I can tell you now that you will not be hard pressed to find an abundance of these people taking to social media as a way to outsource kind donors. Seriously, search “organ donor” or “kidney” (or any organ really) on Facebook and you will come across an overwhelming amount of sad stories about people looking for organs for themselves or their kids. While I find this to be a positive use of social media the “heartbreak narrative” is often over utilized and this can have harmful consequences- it places an urgency on some cases over others, the sadder the story is the more likely they are to find a donor. As Dr. Steven Paraksevas, president of the Canadian Society of Transplantation said, “what happens on social media is that the best story wins.”
Despite some of the implications of what it means for people to sign up as living or dead organ donors, I am connected to the cause and I encourage people to “opt-in”. Think about it: even if you die you can save up to seven lives or be a part of some kick-ass science research and if you ask me, that’s pretty freaking awesome.