David

David receiving a bronze medal at the
2012 Canadian Transplant Games

Back at the start of the summer, I attended a fundraiser for the Canadian Transplant Games. I’m pretty shy at social events and I hardly know anyone there (and those I did know were really busy organizing the event). I did my usual Lauren trick of finding a good people watching spot and leaned against a wall, nursing a beer. I noticed one guy almost right away. It was his hat. It was a simple ball cap, but the front had October 20, 2008 on it, and something about lungs. October 20 is my birthday, hence why the date stood out for me (although the year was slightly off  -  ha!).

Perhaps he saw me reading his hat or thought I looked like I needed someone to talk to so he came over. His name was David and he had indeed received a double lung transplant, on my birthday, in 2008. He was around my age, maybe a bit older (I've lost the ability to guess these things). He told me about his life before he got sick, what caused him to need a transplant (pulmonary fibrosis -I had to Google it as I had never heard of it) and what life was like since his transplant. He was a little gruff and seemed a little grumpy (and others later told warned me he could be negative at times or at least that had been their experience. But I never saw that – when I spoke to him, he was always an optimist. He had been through a lot over the past number of years and he was grateful for his lungs and that fact that he had more time with his wife and his young son. A lot had changed for him (he had once had his own business for example) and although he was living a very different life, he was quietly and profoundly thrilled to have the second chance.

Over the course of the Canadian Transplant Games I got to know him better. I learned that yes, he could be a bit gruff, but he was also good natured, funny and sympathetic. He loved his family so deeply and talked about his son whenever he had the chance. We connected on social media -  first Facebook and then I saw him learn and embrace Twitter, using it to promote organ donation. It’s funny how you really can get to know someone over social media, even if you have only met them in person once or twice. Many of us involved in the Transplant Games have formed great friendships after the games using these channels, I count David as one of mine. David even went as far as sponsoring me in the Kidney March last year to show his support which meant a lot to me.

David had hip replacement surgery about six weeks ago. A negative side effects of anti-rejection medication is a condition called avascular necrosis, which seriously diminishes blood supply to the hips. While otherwise healthy, some transplant patients end up needing surgery to fix this and similar issues (I am not sure if this is why he needed a hip but I do know it is common). David's surgery, by all accounts, went really well, but somewhere in the recovery process days later, something went wrong with one of the after treatments. He fought hard for weeks to stay with his family but in the end he lost the fight. David died Thursday.

I’m sad. I’m sad for David because he already had struggled so much and had come out the other end okay, only to be broadsided by something else. This wasn't an infection or the lungs rejecting…from what I was told it was a pretty rare complication unrelated to being a transplant recipient. I am sad for his wife and his mother and everyone else in his life. I’m especially sad for his son. Every kid needs their dad and he’s not going to have his for the better part of his childhood.

I’m sad for all the transplant friends he made too. I know for a lot of recipients, they are all too aware of how fragile life is and how quickly things can change. David’s death  probably hit closer to home for them than most. I hate seeing some of our mutual transplant friends go through that fear and worry that something might happen to them. Even though David’s situation wasn't necessarily directly linked to having a transplant, I can see where it would be making other recipients look over their shoulders a bit more.

It doesn't seem right that this happened. I’m going through pictures taken at the games and it just doesn't make sense to me. I fully expected to see him at other events (link the upcoming Transplant Trot) and that he’d be back posting on Facebook soon. I didn't know him well, but I knew him well enough to know that he and his family deserved more time together.

http://www.bowriverfuneral.com/index.php?f=obit%2C271

Getting the Word Out

Through my donation and the social media world, I've met a lot of great people involved in the transplant world. One of those people, whom I've mentioned before, is Amy. She donated her kidney to a family member of someone she didn't know too well after she saw a tweet about "Tiny Mom" needing help.

There seems to be a commonality among many donors (including Amy and myself) that donating was the first step on a much larger path for them.In choosing to donate an organ to someone in need, they found their calling in promoting organ donation. I am not sure that promoting is really the right word because it's more than that. Sure, we'd love to see more donors (where it makes medical sense) but it's also about supporting other donors as well, past, present and future. It's about making the systems donors navigate better. It's about transparency in the process. It's about making the journey the same for donors (same information, same treatment, same level of safety) whether you donate in Arizona or Alberta. It's about finding a way so that all the great things some programs are doing are shared and implemented in all the other programs at least across North America (I'd love to take on the world but let's be realistic).

Amy is taking a big, giant leap towards this by making a documentary about all of the things above and more. Here are her goals:

1) To educate the public on the huge but addressable problem of chronic kidney disease and kidney failure and the option of transplantation and living kidney donation

2) To create a film documenting real stories of living kidney donors across the nation

3) To highlight the safety of kidney donation

4) To highlight the additive potential of public awareness and public action

5) To continue to use Social Media to reach across distance to achieve success

6) To share personal and revolutionary stories of changing attitudes

7) To reveal the unlikely players in a very apropo movement

I am very excited and honoured to be a part of her project (the lone Canadian!). She'll be filming later this spring in a whirlwind tour of North America. Never in a million years did I ever think my choice to donate would have brought me here. It's exciting because I feel like I really can make a difference, even though I may never see what that difference actually is. I'm also excited because the more I hear other people's stories, the more I appreciate that despite the process issues beyond their control, my doctors and donor coordinator at Foothills are running a pretty fantastic program. They are doing a lot of things right and actually as a country, Canada is leading the way in best practices in a lot of ways. For me, this will hopefully be an opportunity to talk about how we do things here, from my perspective.

To learn more about the documentary, check out the link here. A little fundraising help is needed too, for expenses, if you are so inclined. Either way though, follow along in the journey on the website or on Facebook and be sure check out the documentary when its done.

Another Choice

I've been a little slow in posting here for a few reasons. The first is that this summer has been very busy! I was involved with the CanadianTransplant Games (more to come on that in possible future posts). I also took a trip to Ontario to see the family and some friends. For many of them, it was their first time seeing me since my donation in June of 2011. While they all knew I was fine, I think it helps some people to physically see you to believe it. (Yes, a few did want to see the scars!).

The other reason I’ve stayed away from the blog I guess is what you could call a crisis of faith (of sorts) about what role promoting organ donation should have in my life. I’ve done a fair bit of thinking about it but still haven’t come to a place where I am totally comfortable.

This is the situation. There are a few people in my universe who would like me to stop talking about organ donation (and for that matter, marching for kidneys, encouraging blood donation etc). They don’t understand why I care so deeply about it, or why I want to spend my time talking about it, sharing success stories and educating people about its many facets. Sure I’ve explained it but the message isn’t being received. Now some people would say to just ignore them, who cares what they think and so forth. But it is hard when they are close to you and you value their opinion on things in general. It’s not that they don’t support organ donation – they’d donate on death if that was an option - they just don’t think I should be actively promoting it. And they are vocal about it, frequently telling me to stop and on occasion mocking it by calling me things like “organ girl” or implying  that’s the only thing I ever talk about.

I‘ve tried to get to the root of “why” they feel this way. There are several  different reasons I was given although two common ones seemed to stand out. The first is that they think it is weird to talk about things associated with body parts/death/illness. The second is reason is being as I/my family/friends have never needed an organ, I’m creeping on a cause that I have no business being involved in.

It’s tough. I’m not sure what to do to be honest. Yes, when you talk about organ donation, you do talk about body parts/death/illness. But you also get to meet and learn from some pretty interesting, inspiring people. That’s what I like about it. I’ve learned so much about science and the medical world – which is very cool to me. I love reading medical journals and websites and then taking that info and being able to make it relevant to the everyday conversation. On the flipside, I’ve also had a chance to learn so much about the human spirit and the strength people can find in themselves to carry on. That intrigues me as well and really puts life in perspective.

Yes, no one in my family has ever needed an organ – it’s true. Does that make me some kind of fraud, speaking about things I shouldn’t have an interest in? Some would argue my being a kidney donor makes me part of the transplant community. I think for others though, the fact I donated to a complete stranger should have been enough (and was weird enough all on its own). My involvement in the transplant world should have ended when I left the hospital. All the stuff that has come after it (the blogging, social media promotion, media stories, volunteering) is overdoing it, taking things too far. Is it?

Here is what I do know. In September of 2010, I suddenly had a strong feeling of something big being around the corner for me, something that would deeply impact my life and “make everything make sense” if you will. As flakey (and not me) as that sounds, the “kidney thing” was the start of that. The idea came to me (to look into living donation) and it totally made sense. I started writing about it, which again, totally made sense to me. I felt like I had found a purpose, something I could do to help other people. And it has continued. The funny part is, I’ve never been that person who really wanted to help other people. Not that I was a Scroogey Grinch;  I’d just never really volunteered for anything, I hadn’t really been involved with any kind of fundraising and I didn’t really have any “causes” I actively cared about. Donating a kidney changed everything for me. Two of my best  friends have both independently said that I seem to have found my calling. I’d never use those words but there is some truth to that. I love being involved in the transplant  and kidney communities, talking about it and sharing stories with people to raise awareness. Learning about the medical processes intrigues me. I get excited whenever I sit down to write a blog post or attend an event. Despite being shy in new social settings, I have loved meeting people involved in the transplant world and hearing their stories, asking them things I’ve wondered about transplant patients. I’ve met patient and donor families as well as some pretty amazing medical staff and I’ve learned a lot from all of them.

One of the people I met during the Canadian Transplant Games had an interesting comment about my involvement that has stuck with me. She said that in my situation, I probably have some advantages over people in the transplant community when it comes to raising awareness. She said that because I am not sick myself, didn’t receive an organ, nor am I worried about saving  a sick family member, people outside the transplant community might listen to me first.  She said “They might perceive you to be more unbiased - someone they can better relate to. Just like the kidney donation, you don’t have a specific person or reason you are doing it for. You aren’t getting anything out of it.”

Other than of course, the fact that I like to help and I have a passion for it. Despite that though, I've found myself lately quite hesitant to share organ donation news articles via Twitter or Facebook or even talk much in person about people or things I experienced at the transplant games. I know I’ve definitely had a case of writer’s block too despite having a lot of topics and stories to write about. I don’t want to stop what I’ve been doing the last year and a half (because I love it and think its important) but at the same time I don’t want to alienate people who are close to me either (because I love them and think they are important). I am hoping to find some kind of middle ground but so far, it hasn't happened.

My Sticky Story

"Write what you know" was something I was taught a lot growing up. There is good reason for it too. Writing about things that mean something to you, whether it be football, cats, food or cars, helps create "sticky stories" or ideas. The idea of a "sticky idea" or story comes from the book Made to Stick: Why Some Ideas Survive and Others Die. It's a great way of explaining why some things stay with us, while others don't. Basically, a sticky story has a number of the following features (naturally, not in a fabricated kind of way-you can't fake it or it won't work):

• Simple — find the core of any idea
• Unexpected — grab people's attention by surprising them
• Concrete — make sure an idea can be grasped and remembered later
• Credible — give an idea believability
• Emotional — help people see the importance of an idea
• Stories — empower people to use an idea through narrative

Anybody can write about anything, but when you are passionate about a topic, people can feel it as they read, making your ideas more meaningful and engaging (sticky). It also means that readers will be more likely to share your ideas with others. As it turns out, I wrote a sticky story, by sharing an experience that was near and dear to me.

In February, I wrote a post about one of the main reasons I opted to become a living donor last year: the loss of my dad to cancer. It was a very emotional blog for me to write and I hoped it would explain my decision to donate in a way that might get other people thinking about the idea. I shared the post on social media (Facebook and Twitter), received a few comments from friends and life moved on.

Three weeks ago I received an email from someone who follows me on Twitter. She explained to me that she read my post back in February and it had stuck with her over the last few months. Being in communications, she was wondering if I'd be okay if she pitched my story to her media contacts and maybe they could include it as a Father's Day piece. She thought it would be a great way to increase awareness and possibly encourage others to become donors. I agreed and she put things in motion. It was really wonderful of her to take this on - I can't begin to express how much I appreciate her efforts. 

The Calgary Herald was interested and an interview was quickly scheduled.They ran the story over the weekend, for Father's Day. I think the reporter did a great job in making it even more "sticky". So far it has been shared at over 140 times (minimum) via social sites and hopefully has encouraged people to think about organ donation in general. At the very least, I hope it made people appreciate their dads a little more on Fathers Day. 

When I first started this blog it was for me -  a journal of sorts. It quickly became a tool for my friends and family to better understand my decision to become a non-directed donor. Along the way, I've had a doctor, a publisher and a couple of other people suggest (or in some cases insist) I write a book about my experiences to raise awareness about organ donation in general. I am not quite in a place where I am ready to write that book, but I'm getting closer.

My best friend made the comment the other day: "You do realize this is your calling right?". I guess it is. I love it and I am passionate about it. I feel like I can make a difference.In the last year, I feel like I've been presented with a huge opportunity and responsibility to speak to the need for more organ donors in Canada.

Earlier in the week, there was also another article in Metro Calgary by another reporter who had read my anniversary blog post. I am really grateful for both the Calgary Herald and Metro stories this week. Being a communications type professionally, I appreciate how lucky I was to get not one but two major publications to share my story and help put a face or a "sticky" story to organ donation.  

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.

Playing God

When I first started to consider donating a kidney,  I read a lot of online stories and blogs by people in a similar spot. They didn't have a family member or close friend in need but they still wanted to help someone. In some cases, a story in the media or at their local church/gym/workplace had caught their attention. In those cases it was perhaps someone in their community, unknown to them, that was struggling with kidney failure an they stepped up to help. I read stories of people stumbling across pleas for donors online-on Twitter or Facebook-even Craigslist that lead to them coming forward to be tested.

Then there was the other camp-those people like myself who wanted to donate but instead approached their local living donor programs. These programs and their doctors in the end were the ones who determined who on their transplant list or paired exchange was the best match and most in need.

I remember somewhere in the middle of my testing journey, probably right around the height of the "no blogging" fiasco, someone asked me what I would do if someone found me online and asked me for my kidney, knowing I was already a willing donor partway through the testing. Actually a couple of people asked me-a good friend as well as Dr S. I remember at the time the answer seemed so clear to me-its not for me to choose. If I was eligible to donate, then the surgeons and nephrologists along with a computer would do the matching.The idea of having to choose someone was kind of terrifying to be honest and didn't feel right-for me. There was a part of me that wasn't sure if it was fair-after all the transplant wait list is supposed to be an equalizer that those in the most need were helped first.Who was I to mess with that? To do otherwise (at that time in my life anyway) to me seemed a bit like playing God (or messing with destiny-however you want to look at it).

Fast forward to now: there is a big part of me that now understands how impossibly painful it is to watch a family member sit helplessly on an indefinite waitlist for a kidney they may not get in time. I also now understand that there are many kidney patients who can only receive a transplant from a living donor-usually because of previous transplantation failure(s) that have created kidney-hostile immune systems. Basically in order for a new kidney to take, the doctors need advanced notice of the surgery (therefore cadaver donors wouldn't work) so they can suppress the immune system to give the kidney a better hope of integrating into its new home-similar to what is done prior to a bone marrow transplant. If those people do not have anyone in their immediate lives who can help and they don't have someone to go into a paired exchange with them, they are essentially sentenced to a lifetime of dialysis. Dialysis is not a cure. It is an unpleasant, limiting option to dying. There is always that chance a completely non-directed donor may enter the system and be a match...but with only around 50 of us "non directed" donor types in Canada so far and over 3000+ people waiting for a kidney each year (121,000 in the US)-those odds aren't much better. I'm not trying to be dark in gloomy-that's just the reality. So, if I or someone I loved was in that position, I'd want to feel like I was trying everything I could to help. I'd want to feel like I was doing something other than waiting. I probably would be all over Twitter, blogging and Facebooking, trying to raise awareness and coax SOMEONE out of the woodwork to be tested. Several someones. Until we found a kidney.

I've seen some of those tweets now. I've read some of those blogs. There is a part of me now that feels bad I didn't see them before I started on this journey-maybe I could have helped them instead? I do not for a second regret donating and I am sure Leftie is where he was most needed, hopefully thriving. But it's hard reading people's stories (like Jacqueline, a mother from BC who is searching for a kidney who I am very much rooting for) and seeing pictures of their kids, thinking-I could have helped her/him. Especially my blood type being O+, the universal kidney donor-type needed my so many. It's made me wish that Dr. Y had found a third, healthy spare kidney in my abdomen and that I'd just need a little more recovery time and then I could loan that one out too. But obviously that isn't the case and helping isn't an option.

The whole concept of "advertising" or lobbying for a kidney is quite the ethical debate these days, in medical circles as well as the kidney community. I remember reading a Kidney disease forum a few months ago where a kidney patient came on and point blank asked if anyone knew of someone willing to donate a kidney. Within moments there were several scathing replies from other people with renal failure, basically telling her waitlists exist for a reason and how dare she try to jump the queue. Some thought her request was tacky and offensive while others clearly thought it was more than that: she was being underhanded and unfair. While the "rule following" part of me saw where they were coming from-I also couldn't fault her for asking. And I was kind of shocked at how angry people were getting. I mean, nothing was stopping those other people (except themselves) from increasing their odds by going public with a search for a kidney - for example it wouldn't impact their place in the waitlist. They were just as able to do what she was doing but they weren't for whatever reason. And in some cases it works - so I see why people want to try.

A "kidney friend" of mine, Amy, answered such a request. She knew a woman (Kirti) through Twitter who started tweeting and Facebooking about her mom's need for a new and improved kidney. Amy (like myself) lost her dad years ago and knew she could help this family. So she stepped up, got tested and was a match. In April of this year she was able to give Kirti's mom a tinyfabkidney and a new lease on life. They are paying it forward and hoping to raise awareness by posting stories of other people seeking donors on their website.  It worked for them-perhaps it may help some others. More and more of these types of stories are showing up in the media today-more in the US than here in Canada but we are likely not far behind.

I'm still on the fence as to how I feel about people actively advertising for a new kidney. I do know that the people who step forward when they read tweets, blogs or see stories on the news and offer to be tested are very admirable people the world needs more of. I know that for me, I made the right choice in donating mine the way I did because I can be terrible at making a decision. Having my recipient selected for me was probably more appropriate because of this-I'd still probably be trying to make a decision. I also don't still  wonder if choosing your recipient as a non-directed donor is playing God or messing with the "order of things". So is reaching out on the interweebs to find a donor breaking the rules? I think at the end of the day, when our choices are about survival or protecting our loved ones, a lot of etiquette, guidelines and what is "fair" can become pretty subjective. I don't think I could ever judge someones behaviours that were rooted in trying to save themselves. You just can't judge situations you've never been in. You just can't.

Good Deed Challenge

About a month ago, I decided to be a part of a 28 Day Good Deed Challenge. The idea was that everyday, I would do one random act of kindness for another person. The recipient could be known to me or a complete stranger and the act could be as simple as holding a door open for someone. Each participant in the challenge was expected to enter their daily deeds into a communal Google Docs spreadsheet. We were encourages by the project organizer, DJ Waldow, to review each others acts of kindess for inspiration and feedback-comments were encouraged. Participants were spread throughout North America and we had every demographic covered from students to parents to Dilberts like myself.

It was tougher than it sounds. In some ways it was tougher than the whole kidney donation-that was very much planned and not so random. Hear me out on this...

A challenge like this doesn't really allow for those "keep to yourself, head down-bad days". You have to have your eyes, ears and heart open to not just spot the opportunities for random acts of kindness, but to actually get them done. A lot of the time this can involve taking the high road and putting someone else before you-even someone you don't really like. Now, I like to think of myself as a good person and I do like to try to help other people when I can. But what I realized in doing this challenge is that I am not as prepared to walk the talk as I thought I'd be EVERY SINGLE DAY.

There were days when I was so busy I didn't know which way was up and I would realize by dinner time that I hadn't done a single thing that would qualify as a good deed. Crap. Those days usually meant my family would be on the receiving end of the act of kindness sometime after my arrival home which didn't seem as random as it should/could have been.

I'm also a fan of being original so I wanted to try to come up with something new everyday rather than repeat a previous good deed or borrow a good deed idea from another participant. This also added to the challenge because some days we don't have a creative bone in our bodies. I'd find myself frantically looking around my home, workplace or environment searching for something I could do that was "good enough". I felt more than a little crazed at times (in a good way of course...).

Another challenge I was presented with a few times in the last 28 days occured when the good deed opportunity was as clear as day-it might as well have had a neon sign flashing and pointing over top of it...but the potential recipient was in my bad books for whatever reason. My friend Joe used to tell me that the high road might be a bit bumpier but it always has the better view. That's view doesn't necessarily make it easy to choose being the bigger person. I am proud that in each of the opportunities presented I did take the high road to help those people out-even if they weren't my favourite people at that moment in time. Even if it hurt a little.

I think that is the lesson in this social experiment. Everyday we all are presented with opportunities to help other people in many different ways. Some are so small they might seem insignificant  at first glance (telling someone they look nice or holding a door for them). Others are bigger, more obvious  (like a kidney donation or the more common/less crazy option of a charitable donation). I don't think the act itself is the hard part...it's making ourselves do it that is the challenge. It is almost always easier to be lazy, to rationalize that we are too busy, too tired, too old, too young-that there are other priorities. Most of the time whatever the good deed is in reality takes less time to do that it does to think about doing it and wrestle that inner you that is trying to reason why not to do it. Some of us are better than others at doing the right thing but it does take effort to be that way, and more importantly to do it everyday.

Even though yes, I am a kidney donor and yes, I do regular volunteer work and I try to be good to people as a rule, I learned that I have a lot of room to grow in terms of consistency and frequency of my good deeds. Practice makes perfect I guess.

That best portion of a good man's life; His little, nameless, unremembered acts of kindness and of love. ~William Wordsworth

Mighty Community

 The community stagnates without the impulse of the individual. The impulse dies away without the sympathy of the community.
William James 

Almost 3 weeks ago I announced I'd be volunteering as a crew member for the 2011 Kidney March. If however I raised enough money, I would instead opt to march. I gave myself about a week to raise at least half in order to make the choice. I was fairly certain I could raise more than $300 (required to be crew) but $2200 seemed daunting, especially when I did the math on how many people would have to donate how much money (ie 44 people @ $50, 110 people @ $20). But you don't get anywhere if you don't try right?

Being the online communicator that I am, I sent out two emails-one to family members I hoped would sponsor me and another to friends and select co-workers who had shown an active interest in my kidney donation and recovery. I shared a blog post about the Kidney March and my intentions on Facebook and Twitter.

In under a week I was over the $1000 mark. By the end of the second week (with a few more tweets and Facebook posts under my belt) I was rapidly approaching the $2000 mark. I hung out there for a bit and then it happened. I did it-I had raised $2200 in under 3 weeks. Wowsers. But it really wasn't me. It was my community. My mighty, wonderful, online village. Sure, many of the people that donated I know and see in person. But  the conversation, connection and commitment happened all online. Which I think is pretty amazing.

What is more amazing though is simply how generous and supportive so many people were. I cannot begin to express my thanks and gratitude-not just for the money that was shared so easily-but for the kind wishes and the words of encouragement. For the sharing and promoting to their friends about what I was trying to do. You really do feel like you can do anything when your "village" so to speak is standing behind you, cheering you on. I knew I would have some support from certain people-but there was so much unexpected support too. Here is what my mighty community looks like:

My very first donor was a total stranger to me. She does however have a strong connection to the kidney community and is a Kidney March participant as well. I had other "strangers" step forward and sponsor me as well. With a little digging to find out who they were, I found that most had a strong , vested interest in the Kidney Foundation because of a family member touched by kidney disease. They had learned about me through my blog and were happy to support. One stranger though had no connection-he told me he just believes in supporting people who support the communities they live in. Awesome.

I had a fabulous group of coworkers sponsor me. As I've mentioned in earlier posts, my co-workers and employer in general were extremely supportive of my decision to donate "Leftie". Many of those same people stepped forward to sponsor me in the Kidney March. But there were also surprises.  Two donations came from people I hadn't even asked and to be honest-we don't see eye to eye on much at work (that is me being polite). But I guess our hearts are in the same place. For me that was a reminder that just like a "village" our communities aren't always made up with people who support everything about us-but they come forward when they do. Also cool were the number of former co-workers who not only cheered me on when I had my surgery, but did so again with this march.

I have many friends, old, new, American, Canadian who also came forward. I had high school friends I haven't seen in 17 years donate-on the flip side I had people I just met at a #SMBYYC breakfast 10 days ago give as well. And all the wonderful people in the middle.

And finally there was my family. In laws, birth family and family-family. Aunts, an uncle, a cousin and  two moms. Oh and yes, of course my brother (he'd be perturbed by a lack of mention).

Forty people. Forty mighty people. You helped me accomplish something I wasn't entirely sure was in my reach. Your faith in me and your generosity will power me through three days of marching, and help me step every step I need to walk that 100km.

Thank you. So much.



PS...sorry to  "Sally" for wearing my emotive hat today

In the News

One of the curious onlookers
while my segment was filmed

Yesterday morning I received a call from GlobalTV here in Calgary asking if I wanted to do an interview about my Kidney Donation. The reporter, David Boushy, had initially contacted me back in January about doing a story or perhaps a series of stories, following me through the testing period. As he researched the story and contacted all the parties involved, including Alberta Health, the whole blog ban ensued. I stopped blogging, Global had to opt out of doing a story and the rest, as they say is history-water under the bridge.

Despite being very nervous and it being kind of short notice, I met David and his cameraman (whose name I have totally forgotten-sorry!) near the river, not far from where I work. It was right at the start of the lunch hour so we had several gawkers-runners, walkers, squirrels-all wondering what I was being filmed for. Doing the interview itself wasn't too bad-I found most of the questions pretty easy to answer (Why did you decide to donate a kidney, would you do it again, how are you feeling, what did your family think, were they supportive)). They asked about the whole blogging ban a few different ways. Because it didn't come out clearly on the final segment which aired I want to be clear for the record:

The ultimatum I was given to stop blogging or it would affect my donor eligibility was unfortunate. While its origins are still a little unclear, I think the situation highlighted the needs for improved communication between Canadian Blood Services, Alberta Health and the program itself. I do not however believe it is a reflection of the integrity, compassion or professionalism of the living donor program at Foothills or any staff involved in supporting that program. It did not have a enormous negative impact on my experience although it certainly was a sizeable bump in the road. In the end it did work out for everyone involved. It was a learning experience and I hope that we'll get to a point where we can balance  medical privacy and risk aversion with the need for living donation awareness. It is also important that organizations like Alberta Health start to recognize that people can get a great deal of support, care and information from participating in online communities and work with, rather than against them.

Blogging aside (are we still talking about that????) I think the segment does a good job of highlighting the need and the benefits of living donation. I do believe that everyone does have the ability within them to help another human being the way Jody (featured in this video) and I did. There is nothing superhuman about me-I'm an everyday person. I'm not in perfect shape. I sometimes eat bad food and drink the odd "adult" beverage. I don't spend all my time looking for ways to help other people and just like everyone else I have my off days (you know, those days you press the door close button on the elevator even though you are pretty sure someone is headed towards the elevator). My point is that more people could do this (assuming they are medically fit), with relative ease. It's within most people's reach.

I hope this news story goes a little ways toward making at least one person consider living donation. My decision was based on a host of factors and influences-maybe this will be one for someone else.

The Week After

The first week after getting home from kidney donation surgery was surprisingly easy and mostly uneventful.
It was during that week where I really became amazed at how well the body adapts and repairs itself (so long as you are giving it what it needs to get the job done). We are resilient creature, we humans.

Everyday I seemed to feel a bit better and although tired, I didn't feel the need to take naps. I was feeling well enough to work part time (from home obviously). While my employer was totally supportive of me taking the time I needed to recover, I found I did better if I had something to do at least part of the day. It took my mind off any discomfort I had (it was moderate) and staved off cabin fever to an extent. I found I was fine to work in the morning sand the afternoons were for lounging. I think what is important for anyone considering kidney donation is that we are all different. I know people who were physically back at work sooner than me and others who took a few months off because of the type of work they did and the benefits they had. I think having the flexibility with work to decide as you go (or week by week) is wonderful rather than trying to guess prior to surgery how you are going to feel. I was lucky that I had that arrangement with my employer and the technology to do my job at home (yay AMA and Bridgewater Bank!)

Incision wise things appear to heal quickly although I needed to be mindful that just because things were looking better on the surface, there was still a lot of healing going on on the inside. Although not necessary, I did remove some of the steri-strips from the incisions, mostly so I could look at them better (nothing too gross) but also because a few were starting to peel off on their own. I was kind of afraid they'd be "stuck" to the incisions (gross I know) because I had a bad experience with that post knee surgery but they were fine. I still had a bloated belly but it was slowly going down (much like a balloon with a leak!)

Pain wise I was on Tylenol Arthritis. I was taking it pretty much as per the directions although towards the end of the week I'd forget and realize a few hours later that was likely why I was uncomfortable. I was surprised I wasn't more desperate for them but I'm glad I wasn't. Mentally I was feeling pretty positive too. I know its normal for some people to get the post surgery blues but I was doing alright. I had a lot of calls and emails from family and friends as well as the call with Canadian Blood Services about their social media guidelines so I was feeling pretty positive.

Just like the doctor ordered I walked and walked and walked. And walked. It was the only exercise you are allowed to do and frankly the only exercise I was capable of doing. I paced the bike path on a ridge over the Bow river, pushing myself slightly each day to go to the next park bench or sign to build up my strength. I had to giggle because everyday, despite my 2000 song playlist on my iPhone, "Walk this Way" by Run DMC  and Aerosmith came on every time. I did a lot of thinking while I was walking about my choice, how I felt about it and wondered how Leftie's new owner was doing. A few times I did get teary about the whole journey but they were happy tears. I also wondered if the recipient was walking and walking and walking like I was. When I'd come home I'd be stiff and tired but refreshed. Sometimes I didn't want to go but I always felt better once I did. It seemed like the more I walked, the next day the better I felt overall.

I think the best walk by far though was around 4PM one day later in the week. You know how in Calgary we tend to have sunny skies then suddenly a late afternoon storm rolls  for 30 minutes? Well I was about 10 minutes from home (3 minutes if you aren't a post surgery gimp) and the skies opened up. And I had one and one speed only. Your mind is screaming "run" but there is no way your body can do more than a shuffle. I am sure I looked ridiculous-like an 90 year old speedwalker, clutching her left side like Napoleon. All and all, not a terrible price to pay though :)

Planting the seed

I wish more people understood and embraced how easy it is to donate a kidney and save someone's life. Just saying. Yes it can be risky, but the screening eliminates most of that. There are still surgical risks but they are minimal-I think a lot of people take greater risks in their weekend activities to be honest.


Still I understand this isn't something everyone is going to run out and do. We are busy, we have families, jobs, responsibilities that we think may not allow time for this kind of thing. We don't like being sick, we don't like hospitals and we certainly don't like pain. I am not delusional (about this anyway)- I don't think that just by writing this blog and tweeting a few tweets I'm going to convince anyone to pick up the phone and be a donor. But I would like to plant the seed and make people for aware of kidney donation, blood donation-heck-even just being nicer to other people when its easier to be grumpy. It all adds up-you never know when something you've done, combined with other influences on a person, can lead to something extraordinary. We all have that in us I think.


I think back to that article I read in the newspaper when I was a kid about the family of the little boy who died in an accident and how they opted to donate his organs to save other kids and adults. Their choice to donate and their decision to share their story had an impact, years later on my choice to donate Leftie. They weren't the only reason but they were a catalyst. I would be humbled if I could have the same impact on someone out there.


About a week after surgery I was approached by my cousin who asked if I would be willing to write a guest blog or contribution on my experience to the MindYourMind website. The organization is committed to providing mental health resources to help teens and emerging adults in times of crisis. They also provide a platform for their audience to share ideas, inspire and lend support to one another. Mindyourmind encourages community participation.They believe that interaction leads to involvement. Involvement leads to learning. Learning effects change. I think they might be on to something. I was honoured to asked to participate in their site and I contributed the following post about kidney donation, framed from a volunteer perspective. 


Who knows  if anything will ever come of it but at the very least I'd like to hope I planted some kind of idea that someday might grow into something special. You never know when you might be a catalyst for someone else to make a difference.

Impressions

As some of you know, I've always been a big participator in the online universe. That's part of why blogging was such a natural solution for me to document my journey to become a living kidney donor. I've been able to be open and candid about things involved with the process in ways I don't think I would have been in "real life".

I've always written this blog for me, and also for my friends and family. If others stumbled across it-great-but it wasn't the driving force behind my writing at the start. It was only really once Global TV contacted me and my blogging (and anything else "social media" or traditional media) was put on hold back in January that I realized fully the impact I could have (had) on raising awareness about living donation. It's something I am still committed to and passionate about.

I was reflecting the other day about how to measure my success at this-how will I feel like I've done "my part" in this. I was looking at my analytics looking for something that would tell me I was making some kind of a difference but I just wasn't finding it.  I went back and re-read some of my old posts, from back around the time where I was starting to really become an advocate of the living donor process. At the time, I said I would be happy even if a handful of people became aware that it was a possibility whether or not they donated. And then it hit me-I've already done that.

I have a bit of a confession. I didn't entirely stop using social media to talk about my plans to donate prior to my kidney donation surgery. I didn't blog (that was far too public and definitely against what we thought the rules were). But sometime in the spring I cracked and started to hint at things via Facebook. I was often cryptic and was mindful not to give too many details (although my account is locked down with strong privacy settings). It was enough sharing that I felt like my family and friends knew what was going on, I had some support and I wasn't totally offside on the rules. What it also did was set the stage for something pretty cool to happen.

In the marketing world we often talk about "impressions"-the number of people who may have seen or heard the message you are trying to convey, consciously or subconsciously. It's kind of a hard thing to measure but there is a value to it. The night before my surgery  three of my friends (with no overlapping friends other than me and no connection to one another) on Facebook made a point of posting what I was about to do as their status. I did the math-this meant that upwards of 1500 impressions (their friends) may have been made about the possibility of living organ donation. I know at least 50 actively became aware because of the comments and "likes" they shared.  1500 people across Canada and even parts of Europe and Asia (as one of those friends is travelling abroad for a year). That's a lot of people.


I still don't feel like I'm done with this yet. I want to do more for donor advocacy and awareness. I hope I can be of help in some way to the program at Foothills (or even Alberta as a whole...or Canada?!?). Yet again I am amazed at the power of social media for spreading information in a way I never would have been able to do even ten years ago as a regular, everyday average person. Pretty cool.

Canadian Blood Services-The Sequel

The last 20 or so entries in here were drafts I had written From January until late May and published in June about the journey I went through in order to become a living donor. When I started this back in the fall of 2010, I had hoped to chronicle as many relevant steps of my journey as possible to raise awareness about living donation, and also give my friends and family some peace of mind about my decision. As the blog progressed, I also found it to be a great outlet to share my thoughts, fears and feelings about donating a kidney. Because I knew the living donor program is new in Canada and even newer in Alberta, I also thought it would be an easy way to  discuss some of the challenges and opportunities within the program, to maybe help build a better system and process. The blog also became a huge support mechanism for me as it allowed me to make connections with other donors as well as people in the global "Kidney Community".

In January of 2011, a former coworker sent my blog to the local Global TV station. A longtime reporter there, David Boushy, contacted me and they wanted to do a story in conjunction with the Kidney Foundation, Foothills Hospital /Alberta Health and myself about living donation. I brought this to the attention of the program (and shared a link to my blog) and they told me that Global would have to navigate through Alberta Health communications and that it was unlikely they would participate-which I understand. The Kidney Foundation of course was all for doing something to promote awareness. I let Global know where were stood and left it at that.  A couple of days later I got a call from the social worker assigned to my file at the living donor program.  She let me know that if I talked to the media further or continued to blog my file would be put on hold and I would be unable to donate. She attributed the ban to a social media policy handed down from Canadian Blood Services and mailed me a copy of it. I was told I could resume blogging once I had compelted the surgery or was deemed medically ineligible to donate.

What I read in the policy did not seem to match what they were telling me.  When I questioned a few points, it was reiterated that this was their policy and I needed to abide by it.  Not wanting to risk my place in the program, I let it go and kept blogging without publishing and for the most part steered clear of other social media outlets.

Fast forward to June. Surgery is done. I am released from hospital and start to publish the drafts I had saved over the last five months. The first one to be published was the Open Letter to Canadian Blood Services. Because I wanted to make sure that I was upfront with them about the policy, I emailed them a link. However they were already on it as their social media scans had picked it up. Within a day I had a message from Ron Vezina, Director, Media Relations and External Communications for CBS. We arrange a call to discuss the policy and what had happened.


During the call, Mr. Vezina made it clear that from their perspective, I should have been able to continue blogging throughout the journey. Their policy was a guideline (just as I had thought). I did need to make sure I did not identify anyone else involved in the donation or the chain for privacy reasons (understood). He mentioned that I should be mindful of the risks associated with being more public with my story, but that with my communications background, he felt I understood those risks and how to mitigate them.

So where did things go wrong?  I did ask Mr Vezina if there was a chance that CBS people involved with the donor programs on the national task force may have miscommunicated the guidelines and their objectives.  He said it was possible a and that he'd follow up to ensure that it was being communicated effectively. I think it's also quite possible the guidelines were under communicated, leaving them up to too much interpretation at the hospital level. The other explanation would be that Foothills Administration/Alberta Health were uncomfortable with the blogging and used the CBS policy as something to hide behind. It wouldnt surprise me given some other things that occurred while I was in hospital but we'll get to that in a future post. In the last couple of weeks I have let those involved with the living donor program at Foothills know that the ban was in error and that I hope they aren't continuing to tell patients to avoid it. They did not specifically comment on that back to me. They did thank me for the information but I welcome further discussion if I can help them strike a balance between privacy and having an online outlet for donors and recipients going through kidney transplantation.

For the record I am very pleased how CBS handled this-they were professional, quick to respond and are willing to take steps on their end to ensure they are not hindering anyone from promoting awareness of living donation or being a part of an online community. My respect for them has been renewed. I sincerely hope that Foothills Hospital and any other donor program in Canada takes  the time to review what their policies really are and the impact their actions can have on people like me.

I've been asked by people if I am angry about this. Not really.  Disappointed? Yes.  Frustrated? Yes. But its done and there is nothing I can do about it now. I've been able to talk about it. At least one group involved (CBS) has listened and I truly believe are doing their part to make things better. All I can hope for is that this doesn't happen again to someone else.

Over the coming days I will get into details about what the donation surgery was like, my recovery and what I learned along the way. Thanks for reading :)

Five Months

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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March 29, 2011

It has been five months since I started this blog and more importantly started down the road to kidney donation.What a long, amazing, complex road it has been so far. I've learned so much about myself, my life, my body, my family and friends. I have an awareness of  a range of diseases I never really knew existed.  I have been exposed to stories of hope, strength and community from people living with kidney disease (and their families). I think the process has made me smarter and stronger. It certainly has run me through every feeling and emotion imaginable.

It's been a long time since I've really wanted something that I was dependant on other people to "give me". That has been humbling, frustrating and rewarding all at the same time. It's so strange really that to give a better life to someone, you have to put your life in the hands of someone else.

I wonder if I do get to donate, if that will change anything for me. Other than of course the obvious being down to one kidney ad the challenges that could bring. Will this somehow take me down another path I never could have imagined or will it be  the same path with just one less kidney?

If  I can't donate how is that going to make me feel? In the beginning I know I said if I couldn't donate I'd be disappointed but would accept it as it is "what's best for me medically". But ever since that awful appointment with Dr. N I'm not so sure I'll just be left with a light feeling of disappointment and regret. I don't know why that appointment changed the tone of this journey so much. You'd think that the blog issue would have changed the mood more but it was more like an argument in a solid relationship.  Ever since Dr N came in the picture though I feel like I'm in a relationship teetering on the edge of breaking up-and I'm not sure what to do to bring it back to being okay. Its not that I am disinterested or don't care-but everything feels so much different. I do think if I was told no, there would be a lot more anger than I think I thought there would be in the beginning.  That and a sense of failure for not being good enough or perhaps staying or doing the wrong thing at the wrong time somewhere along the way that took things off course. Woulda coulda shoulda.

Next week I should have results. I'm still excited about learning the fate of my "extra" kidney but now its mixed with a lot more fear than before-fear or failure, or the regret and how that will feel. In the end, even if its not the "answer" or purpose in life I thought it might be, it really has been the experience of a lifetime and I will be stronger because of it..

Another Look at Social Media and Medicine

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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March 18, 2011

I came across this article on cbc.ca and  found it really interesting. Although I do not have cancer and am not a medical patient, it illustrates what I was saying about the support social media can give you that traditional forms of communication or even email, cannot. AS the author states, social media is a great tool for preventing isolation and keeping people focused in medically challenging times which are often very emotional and confusing.  Its a good read and while it doesn't directly apply to my story, it is certainly relevant.~LH

My dad, his cancer and social media

Natasha Fatah on the healing power of online friends

On February 16, my father went into St. Michael's Hospital in Toronto for back pain and leg numbness and the doctors ended up finding a massive tumour on his spine.

They rushed him into emergency surgery. Now, a month later, he is still in hospital. He has been diagnosed with cancer and has lost control of his legs because of the damage caused by the tumour.

The regime for the next few months: getting tested, chemo, radiation and re-learning how to walk. It has been a challenging time for our family, as you might imagine. To my surprise, what is helping us through it has been the healing power of social media. You see, my father is Tarek Fatah, a controversial public figure to some people, the founder of the Muslim Canadian Congress, a secular Muslim organization that advocates for the separation of church and state.

He has been fighting militant Islam since his teen years in Pakistan.

He is also a respected author —his most recent book being The Jew is Not My Enemy: Unveiling the Myths that Fuel Muslim Anti-Semitism — and he co-hosts a news show called Friendly Fire on CFRB radio. What many people don't know about my father, though, is that he's a technical genius and something of a Facebook junkie.

The first thing he asked for when he came out of surgery was his iPhone.

He hooked into the hospital's Wi-Fi and now he is fully loaded in his hospital bed with iPhone, iPad and laptop. His world is, literally, at his fingertips.

From Karachi to Taipei

For both of us, Facebook, Twitter and our blogs have proved invaluable during this difficult time.

Author and activist Tarek Fatah in hospital in Toronto. (Natasha Fatah/CBC)

They've allowed us to tell everyone we know how he is doing everyday with simple status updates, without having to call family in Karachi, Mexico City, London, Amsterdam and so many other corners of the planet.

My cousin in Taipei and my best friend in Colombo are up-to-date with the situation in a way that they never could be without social media.

And without much effort or expense, they are able to reach out and give daily pep talks and affection.

There are literally not enough hours in the day to talk to everyone who wants to know how dad is doing, especially since he has followers, friends and foes all over the globe.

So, in the spirit of Tunis and Cairo's Tahrir Square, my father is carrying his medical battle into the online world. He takes a picture of everyone who visits with his iPhone and then posts these on his Facebook albums dedicated to cancer recovery.

Pain and strength

My father, of course, is far from being the first person to take his personal health online.

Nicole Moore, the Ontario nurse who lost an arm in a shark attack off the coast of Mexico in January, is documenting her recovery process in a blog. So is Jill Anzarut, a young Toronto mother who is fighting for access to the breast cancer drug Herceptin.

There is also the couple in Windsor, Ont., who used Facebook to try to pressure a hospital into providing a different treatment for their terminally ill baby so that he would be able to die at home.

In my father's case, I should note, social media has also been a source of much anguish for our family.

Because he is a controversial figure in the Muslim world, some in the community have issued threats to him on Twitter, even while he was undergoing life-threatening surgery.

There is a page on a Muslim website, celebrating my father's cancer as a punishment from God and calling him a bad Muslim because he supports gay marriage. But overall, social media has been a remarkably positive experience.

It has allowed us to keep people updated and, more importantly, it has boosted my father's spirits by allowing him to be connected to everyone in his life.

He continues to write and to fight both the cancer in his body and religious extremism, even while lying on hospital bed. Several friends have expressed their reservations about us putting our lives, the cancer and the daily updates "out there" online. And while I understand their concerns about our privacy, I have to tell them that the process is part of our healing.

Medical research has shown that a patient's attitude is a huge factor in how well they recover and, as long as my dad is Tweeting and Facebooking, he is connected and happy and recovering.

When my mother underwent a life-threatening health scare years ago, when I was 13, the way we dealt with the situation was much more isolating.

Then, there was no Facebook wall where people could leave messages on a regular basis and there were no tweets of love. Yes, people were around and they cared but I definitely felt isolated in a way I just don't now.

Nothing beats actual visitors to the hospital but our presence online during this difficult time has helped us cope with my father's illness and given us, as a family, much more strength. And, I never thought that a Facebook account could do that for me.
http://www.cbc.ca/news/canada/story/2011/03/16/f-vp-fatah.html