What a Week

Wow what a week. Last weekend I was having doubts, wondering what direction I can take next with this "kidney thing" and if I even had any business continuing on with trying to raise awareness. I was pondering whether or not I should do the 100km Kidney March (where I would need to raise $2200) versus just being ground crew for it ($300 in fundraising). While it wasn't quite a pity party, I certainly was feeling a bit unfocused and unsure of myself.

On Sunday I received a very awesome email which I shared in this post. It really reminded me that I need to keep doing what I can to raise awareness and help people understand the process of kidney donation. It made me realize how much of an impact I've already had while at the same time acknowledging the hows and whys of the doubts I was feeling. My birth mom Judy commented that the letter was a "gift". It really was. It gave me some focus back and helped me move past some of my doubts. But even more importantly it prepared me without my even knowing it, for what was to come on Monday.

Monday started off in a pretty regular way all be it with a bit of a sad twist. Charlie's mom's dog Roxanne died suddenly in the night and his mom was devastated. I was seating at my desk, feeling so badly for her and her husband and wishing I could go home and give my own to dogs an extra hug when my phone buzzed. A Twitter message. David Boushy from Global wanted me to call him. Holy crap-I still get butterflies just thinking about it. In under two hours I was strolling awkwardly down the river pathways for filler footage and talking about non directed organ donation. I (think) I spoke with confidence and conviction. I WAS focused. I found myself several times during my interview thinking about Sunday's email and drawing from it.

The video aired on the early news (5pm) the regular news (6pm), the late news (11pm) and in the morning as well. It was also posted to the Global website. While I knew my mother would be watching all the way from Ontario, I was amaze how many people tuned in, either accidentally or on purpose or watched the video online. And then they talked about it. People came up to me at work to tell me they saw it. Strangers emailed me or contacted me on Twitter. People re-tweeted and shared the video link to over 20,000 people in Canada and the US. Some viewers were thrilled at the exposure because someone in their life was waiting for an organ. One person asked if myself and the other donor in the video were single. Other were enlightened-they hadn't known that you could donate a kidney to a stranger. I even had one or two people tell me that they were considering donating as a result. Wow.

I also made the official decision to be a marcher in the Kidney March. I had told myself if I made it to the halfway mark of fundraising that I would dust off the running shoes (okay they aren't dusty-I've been running a lot) and walk the 100km. And today, after just two weeks of fundraising, I am thrilled to announce I am at $1590. The support I have had from friends, family, coworkers, and complete strangers is awe inspiring. I am hopeful I will be able to raise the remaining $610 in the next two weeks.

On another exciting note, this week one of my Canadian "kidney" friends has finally completed a successful cross match! She too is a non directed donor (on her way to donating) and we've been swapping stories and experiences. I am excited for her as she's been going through the process from around the same time I started. Knowing that she is now getting ready to donate has also reminded me of some of the other ideas I have up my sleeve that I can't wait to get started on...stay tuned.

This week really has impacted me like no other in my life-what a difference a few events and a little time has made.

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.

Now What?-Part Deux

Last week I shared some of my feeling of "Now What" in a blog post. I was lamenting how I still felt like I needed to do more in support of kidney donation. While I am very proud of what I did the circle didn't feel complete just yet-and still doesn't. That isn't a good thing or a bad thing-it just is what it is. There are a lot of emotions to process after donating a kidney and I know my feelings are very normal.

As much as I have been writing this blog to create awareness for the need for more living donors and to educate people on how (relatively) easy it is to donate, this blog has also been something I've more than anything written for me. It's been an outlet, a place where I could celebrate the good times and talk through the less than good times to find resolution. Along the way I've been pleasantly surprised when I've had feedback from people outside my circle of family and friends. I guess I'm just surprised people are not just finding the blog but are reading it too.

I referenced Olympian Kyle Shewfelt in the "Now What " post and  some of the learnings I had from hearing him speak at #SMBYYC. Over the weekend he did a follow up blog post of his own about the event we had both attended which I happened to read. One part of his post really stood out for me:

Mark Tewksbury once told me that the best way to know you are a good speaker is when people come up to you after your presentation and tell you about how you made them feel.

I think the same thing can be said for the people who have left comments on some of my blog posts over the past few months. I might not be a speaker but I am still communicating right? Well yesterday was a record day for comments from readers and they all meant a lot to me. It is good to know I am having an impact and that fact encourages me to do more. In addition I received this email which I have permission to publish (the author wanted to post it as a comment but Blogger was acting up). It really reminded me that even though I have  more I want to do to support living donation, I've accomplished a lot. And I think this letter applies to anyone and everyone who is considering becoming a donor or who already has, non-directed or otherwise.

Hi Lauren,

You are truly a hero! I am in awe of you and what you have done. Donating your kidney altruistically is an incredibly selfless act that takes an amazing amount of courage and commitment. There are very few people in the world who have done or will ever do what you have done and you should feel incredibly proud of the contribution and impact you have made on the world and the life of the very fortunate recipient who received "leftie".

I found your blog about a month ago (from a tweet with #kidney in it) and have been reading every new post with great interest. I am also looking forward to reading all your older posts (for reasons I’ll explain another time). Your commitment to writing this blog is also a great gift to others. You are such a great writer and communicator - I so enjoy reading all your posts.

Since I first found your blog, I have wanted to reach out to you and let you know how amazing I think you are for what you have done. I'm sure many people tell you that but what I think is most important is that YOU believe that and never underestimate – or take for granted - the impact of your action.

What compelled me to comment on this post is one particular line in the second last paragraph "Despite the fact that I helped one person.....". I want you to know that you have helped way more than just one person. Sure, you directly helped one recipient but you also helped countless others ; foremost the recipient’s family and friends. You have positively impacted all of their lives in immeasurable ways. And with every post you write and every person you share you story with you continue to help everyone who is affected by kidney failure and everyone who is in need of any organ transplant.

I understand the fundamental life-saving and life-changing impact of your kidney donation because our family has first-hand experience with a kidney transplant. My sister, Jacqueline, received a deceased donor kidney transplant 24 years ago at the Foothills Hospital in Calgary when she was just 20 years old (yes I experienced a few “whoa what a small world it is” moments as I read about your story and continue to learn about your life). To say the transplant dramatically changed her life is an understatement. Jacquie had been on dialysis for 3 years prior to the transplant and within a day of receiving the new kidney she felt more energy than she had in years; despite the pain associated with recovering from surgery. Fast forward 24 years and Jacquie has full life with a loving husband and 3 beautiful daughters. Thanks to the kidney transplant I now have I 3 nieces, my parents have 3 granddaughters, my kids have 3 cousins, etc. If it weren’t for the kidney transplant the chances of her having children would have been slim to none (some studies show that only 1% to 7% of dialysis patients will become pregnant).

So you see, the transplant my sister received didn’t just positively affect her life – it affected all our lives, it allowed her to have children, it affected all the lives of our extended family and friends. It has given her a gift every day of her life since she is able to live a more “normal” life than could ever be hoped for as a dialysis patient. In the same way, your donation has fundamentally affected – in an incredibly positive way - the life of the recipient and all of the recipient’s family and friends. Perhaps that recipient will now be able to have children; to create life with the life saving gift you have given.

I wanted to share my sister’s story with you to give you just one example of the overwhelming positive affect your donation can have on someone’s life. I can completely understand why you would have a “let down” following the surgery especially since you have no connection to the recipient and have no information about how your donation has affected that person – today, tomorrow and into the future. You can read more about my sister’s story on the blog I created www.jacquelinenemeth.com.

I’m sure you would agree that part of the excitement about giving a gift of any kind is watching the excitement in the face of the person who receives it; feeling their gratitude, receiving a warm hug, hearing them say thank you and seeing them enjoy or thrive with the gift you have given. Due to the anonymous nature of your donation, you haven’t received that and I’m sure this has contributed to that feeling of let down or of “what next” – it’s hard to have closure when you don’t know the recipient. When I read your post about the fact that someone in your donor chain did not want to meet and go public at a press conference I felt disappointed for you but also for the organ donation cause; it’s such a missed opportunity in so many way. I think would be great for you to have the opportunity to meet the person you donated to and to see first-hand how you affected their lives. And yes, it would have been so nice for you to hear “thank you” directly from the recipient.

I hope that one day you do get the opportunity to meet your recipient or learn about his or her life but if you don’t you could think about my sister’s life and how the kidney transplant she received changed the entire trajectory of her life and created opportunities and experiences that simply would not have been possible otherwise.

I think it will be great for you to meet and talk to transplant recipients and their families during the Kidney March in September. Perhaps you can take a little piece of all of their stories and imagine your own story about how leftie positively impacts – every single day – the life of the fortunate recipient (and his/her family and friends) who received your kidney.I hope you fully celebrate and realize what you have done. In the span of one year - 2011 – you have done more for the world than most people do in a life time. And I am not exaggerating. First and foremost, you are an altruistic living kidney donor – there are only 25 people in all of Canada who have done this since the LDPE program started. You are an engaged, vocal and committed advocate of living donation and organ donation in general. You are participating in the Kidney March a few short months post-donation. You are a committed blood donor and have gone back to it just a few short months post surgery. And all this while living a full life and holding down a career. That’s pretty amazing.

I applaud your generosity and your continued commitment to the kidney and organ donation cause. You are definitely a hero.

Kerry Mortimer

Ups and Downs

When your life becomes about
kidneys, you become
"Organ Girl"

This has been a weekend of ups and downs for me all of course pertaining to kidneys. I think Charlie is right and I have become "Organ Girl". By this he is referring my involvement in living donation and the amount of time I am now focusing on it. I think he thought it would all be done with back in June and I'm sure he's not the only one in my life with those thoughts. There are probably a few people wondering why I'm still going on about living donation, kidneys and everything else. Which has me a bit torn about the direction I should take-but that's is another story.

Anyhow...

The Ups

I went to boot camp as I normally do Saturday mornings. And it was awesome. For the first time since the surgery, I didn't get  a single bit of discomfort in my belly between the incision points (in the past couple of months sometimes it hurt a little, sometimes it was just a pulling sensation-more annoying than anything). The best part though was my energy level. It was really 100%. I felt as strong at the beginning as I did at the end. At no point did I feel exhausted-although I was working hard. And my abdominal muscles showed up. They allowed me to do exercises that a few weeks ago they just didn't want to do-I just couldn't do. I felt strong, healthy-like yet another little corner was being turned. At the end of every class our trainer always asks us how class was. I wanted to jump up and down and say "Did you see how awesome (for me) I did?" and hug her because I was so happy with how class went. Of course I didn't-after all nobody needs to hear or care about my personal victories or listen about my post surgery recovery. But I was thrilled. Even more thrilling was the fact that my energy levels remained solid for the rest of the day. I made an delicious dinner (which didn't make me sick!), walked the dogs, cleaned the house and ran errands. I was ready for bed by about 9PM but who cares? You don't realize how affected your energy has been over time until you finally have a day where you are back on track. It also bodes well for the Kidney March and walking 100km. In about 3 weeks from now. Gah!

The Downs

And that is where the downs come in. While I have no doubt I can walk 100km, I am starting to wonder if I'll be able to raise another $1000. It probably was a bit stupid to start so late in the game although clearly I had other things on my mind in June/early July when everyone else was really focusing on their fundraising. I've had wonderful support from really great people so far but I'm short on a few people. I am racking my brains for ideas on how to raise money -hopefully something will come to me quick. I do have until October to fully raise the funds but I do think that if I'm not close by march date (the 9th of September) its not going to get any easier after the march to get financial support. I am remaining optimistic though because I've come this far-a solution will hopefully present itself. If I have to come up with the money myself, there is always that option.

I'm also nervous about the walk weekend itself. I was flipping through some of the other marchers pages yesterday. Everyone seems to be part of a team or they are marching with a friend, a spouse, a family member, a coworker. And then there is me. I will be doing my typical Lauren "lone wolf" thing (or actually turtle-that's more my speed too-ha), marching along by myself. Sure, I will probably join up with others from time to time and I am looking forward to getting to meet some people who's stories have touched me over the past few months. But there is a part of me who feels like a kid going away to summer camp for the first time-I'm excited but nervous about the social aspect of it-the shy kid in me is coming out big time right now. I am starting to think maybe I am pretty strange-first I donate a kidney to a stranger and now I've decided to walk 100km and raise a bunch of money on my own. Back in the Dominos and Do-Gooders post, I talked about a then-recent series of studies that found those who volunteer to take on unwanted tasks or give gifts/aid without being prompted, quickly alienate themselves. I think I have firmly thrown myself into this category with the donation and then this march. Good game Lauren, good game.

I'm not wanting this to sounds "poor me" or anything. That's not my intent. The reality is though I am nervous about the march. But at least I'm now more confident I will physically be able to do it because I "have my health". Which is a pretty great feeling and thing to have.