Kidney Stories of Hope

I was on the fence about this topic and whether or not I should do a post about it. Mostly because I felt like I was tooting my own horn and like so many Canadians I was raised to beleive that's not something we should do.

A brief story I wrote for the Kidney Foundation of Canada, was selected as a winning entry in their national "Kidney Stories of Hope" campaign. I was the Prairies winner. I remember reading last year's entries a couple of months before I donated, when everything with my testing was so uncertain and up in the air. They were inspiring and really helped me get a glimpse of what living with kidney disease is like.

 I've said it before and I will say it again....people and their families that live with dialysis, renal diets, fatigue etc. that are a part of end stage renal disease are amazing, resilient people. I've come to know a lot of people on dialysis and I am humbled by their strength and positivity every day. So often donors are called heroes but in my mind, those fighting kidney disease are much more deserving of the title.

A few months ago I decided I would submit my story to the campaign, hoping it would encourage people to consider living donation. I really want people to understand that donating isn't scary and it is so much easier than people would think. I thought maybe a friend of family memembr of someone on dialysis who might be looking at the stories, might see mine and it might help them make the decision to step up and be tested as a potential donor. Never in a million years did I think my story would be selected as a winner.

I was away at a conference/mini Ontario vacation when I received an email from my local chapter of the Kidney Foundation, letting me know I had been selected. The stories were judged by a committee of volunteers and kidney foundation staff using the following criteria:


Novelty: Is there something unique or different about your story? Have you found a new way to cope with kidney disease?
Impact: Will your story help or change how other people with kidney problems work or live?
Human interest: Does your story inspire or motivate people in some way? Did someone inspire you—if so, how?

It was really an honour to be selected. It was also a reminder to me that as much as I sometimes still feel uncomfortable talking about what I did (almost a year ago!!), it has the potential to make a difference in peoples' lives by continuing to share my story. I'd be really proud if one day if I influenced someone to consider being a living donor.

Thank you so much to the "Kidney Community" for letting me be a part of your world and for acknowledging me in this way. It really means a lot. 

Be a Donor

This week is National Organ and Tissue Donation Awareness week. It is the the States too - dare we say it is, then, international?

Why is this important? Simple. Thousands of people in North America die every year because they don't get organ transplants in time to save them. Hearts. Lungs. Livers. Pancreas. Kidneys. Unfortunately, unless you know someone personally who is waiting, most people don't give to much thought to organ donation, let alone talk about it.

I know people don't like talking about it sometimes. It is one of those topics, like money, politics and religion that people feel is a bit taboo or off-putting. Nobody wants to talk about death or think about "what ifs" that come with being in a horrible accident. Some people are afraid of it - they think if they are ever seriously injured, they will be allowed to die just so their organs can be harvested (so not true!). Or in the case of living donation, some people think they are at great risk if they donate, a risk not worth taking for another person - even a loved one (not true!).

Despite our fears and apprehensions, I think we love hearing the "good news" stories. Millions (yes millions) of Canadians collectively cheered earlier this month when Helene Campbell, Justin-Bieber/Ellen-loving-social-media-organ-donation-promoter-extraodinaire, received her new lungs. Last Christmas, the Ottawa Citizen ran a beautiful series of stories called "The Gift of Life" which were read and shared by many. Despite the fact that often organ donation comes as a result of a heartbreaking loss for one family, we admire and revel in their choice to make the best of a tragic outcome and give life to others so desperate for a chance. When we hear these stories, we get it -  we understand the need. So why then, do so many people not sign their donor cards? And why do even fewer talk to their families about their wishes (a critical component to organ donation as your family are ultimately the people who will give or refuse consent).

Please talk to your family and then take the steps to "register" to be a donor. For a list of province by province information on how to do that, click here.

Through being an organ and tissue donor, in death you could change the lives of up to 80 people. That has to be worth the five minutes it will take to register and tell your family.

Let's talk

A year ago today, a fabulous lady named Amy, donated her kidney to the mother of someone she knew from the social media community after hearing about her mother's need of a kidney on Twitter and Facebook.

Anu Dwivedi was diagnosed with Chronic Kidney Disease (CKD) 10 years ago. In October 2010, with less than 20% functionality in both kidneys, Anu faced dialysis & a two to six year wait on the transplant list. Her daughter, Kirti, a social media enthusiast, started a Facebook page in October 2010 to help educate people on kidney disease & organ donation, and, hopefully, find a donor match for her mother.

Amy found out about Anu’s struggle from Kirti’s Facebook page in January 2011. Amy herself had suffered the loss of her father years ago (sound familiar?), and she offered to donate her kidney to Anu with no hesitation. "You have one mother; I have 2 kidneys.". 

Amy and I belong to a lot of the same circles in social media land and a couple of groups that relate to living donation. In one of these forums yesterday, she was lamenting how angry she was that more people don't talk about living donation and she doesn't understand why. I don't really have the answer and that kind of bothers me.

Here is what I do know. We need to talk about it. It is going to make some people uncomfortable. There are going to be naysayers, saying that living donation is inherently dangerous, we were born with two kidneys for a reason and so forth. They will cite all the bad news stories they can find where the recipient or donor had a bad experience or worse, died (less than 0.03%!!). There are going to be people who think we, as donors, are just looking for attention from the media, our peers, our communities so that we can be told over an over what a selfless, wonderful thing we did (um, no). Believe me, I am equally uncomfortable with both of those camps of naysayers. But we have to keep talking.

I recently was chatting with a surgeon (in a conversation, not patient kind of way). He told me that until very recently (five to six years ago) while he fully supported directed and deceased donation, he was against non-directed living donation. He said at the time, despite being generally very liberal in thinking, he couldn't understand why someone would do that for a stranger. He said that he assumed there must be ulterior motives or worse, some kind of potential mental health issue that would make people want to donate to a stranger. Then, he had the opportunity to meet some potential non-directed donors. He listened to their whys, they concerns and their beliefs. And he changed his mind on non-directed donors.

What's my point? 

The majority of people don't even know living donation is an option or the fact that as long as you are deemed healthy, it is a fairly low risk procedure. Many people don't understand why someone would step up and give to a stranger or someone they barely know. Sadly, there are people who have close family members who have been on dialysis for years and they won't step forward to be tested for, because they don't know enough about how the process works and are afraid. And as my conversation with the doctor demonstrates, even health care professionals who understand the science/medicine behind transplants, don't fully understand the people side of living donation.

We need to talk about it. Talk about our whys and hows and highs and lows as donors or as people who know donors (I'm good with you sharing my story). Bottom line: living kidney donations save lives. Living kidney donations traditionally last longer than kidneys deceased donors. Oh and for the record? Dialysis is not a cure, making a kidney transplant a "nice to have". People on dialysis have a tough go of it on a daily basis and are some of the bravest, most resilient people as a result. I don't know how they do it.

SO many people need to hear the living donation message over and over at every level until they "get it", from friends, to family to co-workers to health care professionals. We often fear what we don't know or don't understand and it is our job, as donors (or our supporters), to help take some of that fear away by telling our stories. We shouldn't be afraid to talk about it, share our experiences and hopefully encourage others to become donors. Donating is a very personal choice to make. But that doesn't mean we can't talk about it.