Monday, December 31, 2012

Dear Leftie

Dear Leftie;

I know I've been a bit behind in blogging. Life does that sometimes. I promise, in 2013, I will get better at being more consistent.

How are you doing? I hope you are settled in your new home and thriving. Have you made friends with your neighbours? Perhaps they weren't too sure about you at first, but overtime I bet they have started to like the fact that you help everyone feel better. Keep up the good work for a long time, okay?

Righty and I are doing fine. My blood pressure is great and despite the little issue with iron earlier in the year, we both are healthy and happy. It's really been a heck of a year - a lot has happened and for most of it, you really should get some if not all, of the credit.

I guess the biggest news of the year was that in November, I was selected as one of Avenue Magazines Top 40 under 40. Crazy, wonderful and humbling. What has been so great about this honour is that it has opened up more people's hearts and minds to organ donation, living or otherwise, and it has people asking questions. Talking about it. Never in a million years did I think our choice would be so interesting or inspiring to other people - it was a private decision we made and while I understand it was a gift for the person who got you, I didn't know how much of a gift it would be to myself and others.

I never realized how many amazing people I've meet after choosing to be a living donor - not just other donors, organ recipients and their families, who are quite possibly the strongest people I've ever met. I volunteered this year at the Canadian Transplant Games. I met kids and adults of all ages who had received the gift of life, many of them from deceased donors but several of them from living donors as well. I met donor families who in what probably was the darkest time in their life, made a choice to save someone else (or several someone-elses). I can't articulate how powerful it was to see life being appreciated and celebrated so intensely. Amazing.

I think the highlight of the games for me was near the very end. After a day in the sun taking pictures of the track and field event, I was scurrying to my car to get home and ready for the closing gala. I was intercepted on the way by one of the athletes, Scott. He had a heart transplant at age 28. He handed me one of the gold medals he had earned that day. "This is for all you did and all that you do". Oh. My. God. It still chokes me up.

Not sure if you heard, Leftie, but you were in the news a bit this year. Metro, Calgary Herald, Open File, Avenue Magazine (above and beyond the Top 40 stuff). I remember talking to a reporter last year who had been around for most of my journey. He had told me after the fact that when there had been the initial controversy about my blogging,  a communications representative from Alberta Health had told him that they thought I might only be wanting to donate you for media attention. Hearing that made me so mad - and hurt. Anyone who knows me well knows that couldn't be further from the truth and even now, despite there being more media attention (all unsolicited, thank you very much, critics) I still am largely uncomfortable being interviewed. I am still shy and all of these opportunities have been slightly outside my comfort zone. But it has helped people understand the need for more organ donors so the discomfort has been worth it. You and I were also The Kidney Foundation of Canada's Stories of Hope winner for the Prairies.

Rightie and I are excited for 2013, to see what it brings. One of my online friends Amy, who is also a donor, is doing a documentary (Social Media Stole My Kidney) about living donors. She is driving across the US to interview a hand full of people about their experiences in the hopes of raising the profile on living donation. She's even detouring into Canada to talk with us! I am excited to be a part of this project, because I really think it can make a difference, especially with Amy's determination and dedication behind it. Yay donors! (And of course, Yay Lefties!).

On that note, Leftie, I will leave you with a final thought. I haven't told anyone this until now. This year brought me something else. Something really special. Closure. I am more okay with losing Dad than I ever have been in 16 years. While I wasn't wallowing in grief still or anything, I still really missed him. I knew I didn't really have that elusive thing called closure. I was close but not quite there. But I feel like somehow giving you up and everything that has come with that has helped. I am at peace with it. It is funny how you don't really know you aren't totally there until you find that place where you are. I will always lament all the things he didn't get to see me do as an adult but I know he is somewhere, if only in my heart, and he is proud of me.

Wishing you a happy and healthy 2013 and beyond.

Lauren and Righty.

Thursday, October 4, 2012

Don't Boil the Ocean

Here is a guest blog post I did last year for about my donation and volunteering. Mindyourmind is a non-profit mental health program that engages youth, emerging adults and the professionals who serve them to co-develop reliable and relevant resources. These resources are designed to reduce the stigma associated with mental illness and increase access and use of community support, both professional and peer-based. Through the use of active engagement, best practice and technology, mindyourmind inspires youth to reach out, get help and give help. It was an awesome opportunity to partner with this organization and speak to you not just about organ donation, but about the power of each of us as individuals to make changes in our communities.

Don't Boil the Ocean

I've always wanted to volunteer-I mean its good to help others right? Support a cause you believe in? The trouble was, whenever I’d decide I was going to finally do it, I didn't know where to start. There are so many people, places and organizations that need help. So many diseases need cures, there are so many environmental causes and people support volunteer roles always seemed to need more time than I thought I could offer. I kind of felt defeated before I started-how could anything I do as one person make a difference? It seemed like I was trying to boil the ocean.

So I put it off. Every couple of years I'd think about it again, start to look into organizations and where they needed help and I’d become overwhelmed all over again. I just found it hard to believe in the “power of one”.

Last summer I kept getting the feeling like something big was around the corner for me…that there was something I was supposed to be doing but just hadn't got to yet. But I couldn't figure out what that thing was. A couple of months later I was watching back seasons of Grey’s Anatomy and I saw an episode about a chain of kidney donations. One of the donors in the story was volunteering to donate to a complete stranger.

As crazy as it sounds, as soon as I saw that I realized that I wanted to do that-I wanted to donate one of my kidneys to a stranger. It somehow made sense to me and I realized that this was what I was supposed to be doing-this is what the big thing around the corner was. The more I researched, the more it made sense.

After a few months of tests and evaluations (and a few more of just waiting), I donated my left kidney to a stranger in early June. I thought I was helping one person. But I was wrong.

My donation started a chain of four transplants that wouldn't have been possible without a “non-directed” donor like me coming along. I've been told the last recipient in the chain likely had been on the waitlist for a donor for a very long time. I was a part of something that not only helped four people, but had a huge impact on their families and friends as well.

At the beginning of this journey, I started a blog about my experience mostly to help my friends and family understand my decisions. What I quickly realized was that other people across the world, interested in Living Donation were finding it and using it as a resource. On top of that, my friends and family were sharing it with people they know, raising awareness of living donation as well as kidney disease. As my coworkers found out what I was doing, we saw a direct increase in blood donations at our company blood drives (I had a few say to me “I can't donate a kidney but I thought I could at least start donating blood”). In addition, a lady in the US who I have never met has used my story to teach preteen kids at her Sunday school about paying it forward. She told them they don't have to feel helpless-there are so many things they can do to help others and that sometimes even just sharing your life experiences can inspire and help people learn something new.

I think that’s the biggest thing I've learned in all of this. Like I said, I thought I was doing something for one other person. But it’s brought me the opportunity to share my experience and what I’ve learned. Without realizing it, I've been getting people thinking about what they can do to make a difference in a way that makes sense to them (I get that not everyone wants to donate a kidney). It has helped me understand that I don’t need to boil the ocean or try to save the world-that one thing can have a ripple effect that goes further than you can ever see or know. I definitely understand now that there is power in one.

Friday, September 28, 2012

Hope and the Fear of Loss

In the last couple of years I have had the pleasure of getting to know many wonderful people in the transplant and kidney community, both online and in real life. I have heard their stories of their valiant battles against critical illness and  they have also shared other stories with me about others facing similar challenge. More often than not these stories are full of hope. They may have moments of darkness or hurdles along the way but they describe their success in such a positive way that they almost don't do the battles' difficulty levels justice. Their courage is inspiring and of course it makes me appreciate everything in my life that much more.

I have realized however, that as much as I love being a part of this community there is an inevitable downside to it that I maybe hadn't considered before. Some of the people I have gotten to know and care about are going to get sick, have complications and  may face a life threatening medical crisis. I am going to be brutally honest and self-centred for a second. It scares me. It makes me feel sad that there is nothing I can do to help them. It makes me frustrated that there isn't more the medical community can do to help them (although I know they try very hard). It makes me worry. I'm not good with loss. Then again, I am not sure who is.

Sure, bad stuff and health problems can affect anyone at anytime. However people with transplants face the added challenge of having suppressed immune systems and in some cases underlying medical conditions that linger, waiting to cause problems. Also, the stress of their illnesses on one body part can often begin to impact other areas. I forget that sometimes because most everyone I have met who has gone through a transplant seems so vibrant and healthy. Like nothing can touch them.

In the last couple of weeks I've heard of two people I met at the Transplant Games being hospitalized for lung issues. "Nothing too serious" their family and friends said, despite the fact they'd be in the hospital at least a couple of weeks. For most people, a couple of weeks in hospital is a big deal. I don't know?

This week I found out that one lady who I've only met a few times but who has influenced me so much, is in hospital as well. She had a heart attack over the weekend and while she has been stable, doctors are struggling to do something, ANYTHING to fix her. A bypass won't work and will likely do more harm than good. Angioplasty seems like the only option but it too is risky and they aren't confident they can get through all the blockages. They are trying that today. She's been through so much already - it doesn't seem fair. She is such a kind, sweet, encouraging person who lights up a room. She believes in people and is the best cheerleader you could possibly want in your corner. Having had her in my corner a few times, I can certainly attest to this.

It's tough to watch people go through critical illness. I've been there with my Dad and to a lesser extent with one of my grand parents. I've watched other people close to me go through it with their loved ones (also very hard). There is a little part of me that worries that the more involved I get in raising awareness about organ donation, the more I might be more exposed to the loss (or the fear of loss) of people I care about than had I not become involved. It is probably selfish of me to think that way, but I worry about the effect it will have. I wish I could help.

I've never really been the praying kind of person - not as an adult anyway. I think what little of that I had in me was used up with my Dad. But in my own way, I'm sending all the positive thoughts I can to these people, crossing my fingers, hoping for the best and wishing all the wishes I can think of. It's all I can do.

Monday, September 24, 2012

Snapshot-Life on Dialysis

I think a lot of people unfamiliar with dialysis or kidney disease assume that while inconvenient perhaps, dialysis is a treatment that solves the problem of kidney disease.I know I thought it could be done indefinitely, with little to no risk to the patient. I assumed it was a fairly decent substitution for a person's kidneys that no longer worked.

I recently participate in my second Kidney March. On the journey, I met a lot of dialysis patients and their families. I also met several nurses who work with dialysis patients everyday. Some of those nurses wore a picture on their backs of a patient. He was supposed to be marching along side them but unfortunately, he passed away three weeks before the march, of complications from dialysis and kidney disease. He was 39. Hearing his story, and those of the patients on the march who dialysized in camp every night over the three days of the march, reminded me that dialysis is not as simple a solution as it sounds and it isn't a solution that anyone would be thrilled to accept, save for the fact that it keeps them alive.

Months ago, I asked several patients via the Internet across North America, what life on dialysis is like. Here are some of their responses (in their own words):

  • The thing I hate most about dialysis, is prolly the whole looking for a kidney donor process. I mean, I feel uncomfortable borrowing 100 dollars from a friend, let alone asking them or anyone else for that matter to donate a kidney to me. It's just a very helpless and a lot of times hopeless feeling I think a lot of people o. Dialysis have. Also being stuck in the dialysis chair, when the alarm keeps going off, even tho u aren't moving, and the tech keeps accusing u of moving
  • Sticking whacking great big frickin' needles in my arm. Interrupted sleep as the alarm goes off at irregular intervals. Dx hangover day*. Whacking great big needles. Not being able to spontaneously get away for a break with my wife. Being tied to a machine process and sticking whacking great big frickin' needles in my arm. 
  • As far as dialysis was concerned I hated it all. 
  • The time commitment. Whether in center or at home, it's an unwelcome intrusion on my lifestyle.
  • The one thing i hate about dialysis is not being normal like the others that party, have fun in the world live a normal life with companions, partners, friends and such, the one thing I love is that you die faster because no matter what you'll never be like them (the ones mentioned before) and wheres the fun in that? Yeah you are spiritually advanced more than the normal ones but whats the point? :(
  • The worst thing about dialysis is how others unfamiliar with it look at and treat me....*and* how staff treat me as a child or as an adult who is incompetent, ignorant and almost as if I do not have the capacity to read, research, understand, comprehend, speak or do for myself or anything regarding my life. Being treated as a lower class of person!
  • Boring, dialysis washout. Can't travel out of Country, people look at you as the "reality of mortality."
  • I hate everything about 5th year anniversary tomorrow, it's like a prison sentence but worse. 
  • I know it's "I hate Dialysis" but truthfully it's the PKD. that I hate! I took very good care of my body but ended up on dialysis anyway. 
  • I just don't like it, I don't like how I feel. I don't like the complications I have from it, and just plain not feeling good. And also being looked at as "poor Melanie", being asked if I'm ok a hundred times when I'm having fun.... Its been a combined 20 years almost for me including transplant, I have other medical issues now too, but they all stem from CKD/ESRD. Its just a hard life. I look on the positive side and I'm so glad to have a way to survive and I'm not taking a single second I have for granted. But this life is not easy in any sense of the word. You are constantly reminded how fragile life is and how easy it is to just lose this fight. But to carry on and complain would be useless for me. 
  • Can't even begin to express what i feel about been on dialysis aargh ###### hell 
  • Starving yourself from foods you can't eat and not being able to hardly drink anything liquid. All the medications to take dealing with the aide effects of dialysis. And waiting for a live saving kidney to come along. 
  • Definitely the severe cramping all the time 
  • Only things I hated about dialysis were not being able to eat cheese, nuts, chocolate and drink diet coke. 
  • Being tied to a machine 10 hours a night and always having to count hours if someone wants you to do something at night like if I get on at 9:00 I won't be done till 7:00 plus 2 hours to carry 
  • Tape. it tears my skin off! plus everything else in the symptom list. I hate being tired consantly. never really feeling GOOD. its like dragging weights around all day. nausea. getting a nice meal and it wont go down or stay down. people cutting me a break cause I'm  sick. nurses who say "I understand how you feel" Aggh! 
  • The time spent sitting in a chair. Feeling left out, when friends and others are doing fun activities and I have dialysis
Transplantation may not be a cure for kidney disease but for most patients it is a far more managable treatment, with fewer side effects and issues and a much better quality of life. The problem is, there just aren't enough kidneys being donated, either through deceased donation or living donors. There also isn't enough being done to prevent kidney disease in the first place. People shouldn't be dying at 39 of kidney problems, just as they shouldn't be dying of cancer or heart disease. It is frustrating that we don't hear more about kidney disease but hopefully that will start changing soon. In the mean time, educate yourself about kidney disease, register to be an organ donor and even consider becoming a living kidney donor.

*For many patients, the day after dialysis can sometimes bring hangover like symptoms, causing cramps, nausea, headaches and extreme fatigue.

Thursday, September 6, 2012

Kidney March-Take Two

Tomorrow morning, while many of you are still sleeping, or at the very least are in your cars, on your way to work, shaking your fist at the September traffic, I will be boarding a bus to Millarville. It is there that the 2012 Kidney March will kick off, starting hundreds of marchers on a 100KM journey over three days through the foothills of southern Alberta.

Tonight at the sign in/orientation meeting the executive director of the Southern Alberta & Saskatchewan.Branch of  The Kidney Foundation of Canada  told us a story. It was about a marcher from year one of the march, two years ago. This marcher named Didja, a dialysis patient who was actually dialysizing every night of the march at camp, was determined to make it every step. She was often at the rear of the pack but she didn't care. She was going to do it.

At one point during the last day, Didja climbed one of the larger hills, exhausted. When she reached the top she looked back and realized that for once, she wasn't the last marcher. There was another lady who had fallen behind her and was struggling up the hill. Didja proceeded to turn around, go back down the hill she had just climbed. She grabbed the arm of the lady who was struggling and helped her up the rest of the way. Together they made it to the top and kept on marching.

This story meant a lot to me for a few reasons. One, I am slow like a turtle so if you are looking  for me on the march route, I'll be somewhere near the back. Slow and steady wins the race - not that this is a race. But the thing that really resonated with me was what Didja did. Because over the last year, and certainly over the last few weeks, there have been so many people like Didja that have gone back and helped me up the hill (so to speak).

When I started to wonder if I was out of place in promoting organ donation, so many people stepped up to tell me I needed to continue. They shared personal stories that helped me remember the value in talking about my donation experience. They cheered me on and encouraged me to keep on keeping on. Sometimes when the self doubts get loud, you need other people around you to step up and be louder. And that happened for me which is great. I will always have cynics and naysayers in my universe, but a whole lot of people made them easier to ignore.

In recent weeks I was also starting to panic about raising the minimum amount ($2200) needed for the Kidney March. If you don't raise it by October, you pay the difference. Some of the donors I had last year weren't donating this year which meant I needed to find new donors. I'm pretty shy and don't have the largest networking base so this was extremely daunting to me. I made flyers and handed them out in my neighbourhood. Nothing. I talked about the march on Facebook and Twitter. Nothing at first. but then slowly but surely, donations started coming in. And within hours of my orientation meeting tonight, I hit, then exceeded that minimum donation. Huge.Weight Lifted.

I don't even know where to start in thanking my donors. They are all so wonderful to me for so many reasons. Over my next few posts about the march I'll probably get into the "why" but in the meantime, here are a few fun, random facts about my fantastic Kidney March backers.

  • My "furthest away" donor is from Louisiana. Despite a hurricane looming, she still took the time to not only donate, but promote the march to her friends and family
  • Four of my donors have had transplants. One liver, two double lungs and a kidney. People who would not be alive today if it wasn't for both living and deceased donors.
  • I had 36 donors. Seven of them have names starting with J.
  • Three of my donors I have never met in person
  • Six people I have only met once in person
  • I had donors from Edmonton, Calgary, BC, Ontario (many parts), Texas and Louisiana
Thank you to everyone who has supported me along the way. Tomorrow (and the next three days), I will walk for you. 

Wednesday, August 22, 2012

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.

Thursday, July 12, 2012

Parade of Hope

Everyone loves a parade. There is excitement in the air, cheers, laughter and easy-going anticipation. For Calgarians, the Calgary Stampede Parade is the mother of all parades. People camp out overnight to secure a seat along the parade route. I've never seen anything like it - it just takes over the whole downtown core.

This year as part of my involvement with the Canadian Transplant Games, I decided to head down to the parade staging area to take some pictures of the float the Canadian Transplant Association was putting in the parade. I'm organizing their Facebook page and Twitter account and thought pictures would be a great way to help create awareness about the games and of course, organ donation.

Walking through the staging area itself was very cool. I've never seen so many different horses...or so many horses in one spot (there are something like 750 horses in the parade...I only saw a fraction of that and was impressed).  Eventually I found my way through horses (and one very giant bull tied to a small trailer) to where all the floats were waiting. I could spot the Canadian Transplant Association float no problem...lots of green! As I got closer, I couldn't help but be taken with it. It really did a fantastic job of telling the story of organ donation. The back part would be where several recipients would ride, waving, cheering and showing people what a second chance at life looked like. 

They had great shirts made for recipients which showed what they had received and when. It was a great visual. While I was watching one of the youngest recipients put on his shirt, I was reminded of one of the magical side effects of the games - connecting people with similar health experiences together. Being a place where transplant patients can feel more normal. When the boy had put on his shirt that said "Heart 2004" one of the moms of another little girl there said to her daughter  "Look - he has the Same shirt AND year as you". I remember what it was like being a kid that age and I can only imagine how neat it was for both the kids to find another kid who had a heart transplant the same year.

The car pulling the float was decorated in a beautifully simple tribute to the donors. I have to admit I was a little overwhelmed when I first saw it. While the donors were of mixed ages, the majority of them were so young, with so much life ahead of them. I confirmed later  what I suspected - that most if not all the photos were indeed deceased donors. It was sad to know that there was tragic situations that had impacted the lives of all these people. At the same time though, knowing that each donor may have donated to up to eight people (not including soft tissue, bone donation which can help dozens more), these pictures represented easily over 100 lives saved. Pretty inspiring. The donors are most definitely heroes, as are their families that made the choice to give that gift of life. I found myself wanting to know more about the people in the pictures  - who they had been and what made their families make the choice they did. It is an amazing legacy to leave.

Someone (not me) did comment a little later in the morning that perhaps some photos of living donors should have been added. I can't speak for all living donors but I kind of liked it the way it was. Sure, we are all donors but a part of me thinks deceased donors and their families are in a league of their own - this was an opportunity to let what they did be the focus.

A few family members of donors were there to be part of the parade and honour the gift their family member made. I briefly got to know one mother and neice who were there to honour their "Tiffy". Tiffany Lynn Cox was a 19 year old who had her whole life ahead of her when she died as a result of fire in 2009. Three years later, it was evident that their pain was still raw and still very much there.Their participation in the parade was part of the healing process for the family. As I listened to Tiffany's Mom talk throughout the morning about her daughter, the fire and her decision to donate Tiffany's organs, I was struck by how much she reminded me of my Mom. In reality they are nothing alike but the pride, the fierce love and they wanting to protect her daughter very much mirror qualities I have seen in my Mom over the years. What was also interesting was that Tiffany's Mom was not originally a supporter of organ donation. But when tragedy struck their family, she knew what Tiffany would have wanted, even if it went against her own beliefs. And in doing so, she said it has helped her immensely to know that Tiffany lives on in five other people. 

I met another Mom who was on the other side of the spectrum. Her son, Jason Letourneau, was born with a major heart defect and spent much of his childhood travelling from Saskatchewan to Sick Kids in Toronto as well as Edmonton to get treatment. When he was 22 he received a heart transplant, a gift his family will be forever grateful for. He worked hard to honour that gift, working and volunteering for many community organizations including the Canadian Transplant Association. Sadly, Jason passed away early 2012 of Pneumonia. "His heart was still doing fine" his mother boasted to me.  "He just was unlucky and seemed to get everything else...H1N1, you name it". She said even though they lost him at 40, he had lived so much longer than they thought he would as a child and they were thankful for that transplant every single day. Being so close in age to Jason, I couldn't help but reflect on how much living I had done in the last 18 years. While forty is too young to die, those 18 years of quality life post transplant he had were an amazing gift he wouldn't have had otherwise. We can do a lot in 18 years, especially we we make the most of everyday. When his Mom learned of my social media love/involvement she lit up and asked if I had known Jason. He had loved Twitter and all that "other social media stuff". I knew of him but hadn't known him. I wish I had gotten the chance.

At the last minute, I ended up having an invitation to walk along the float in the parade. It was truly an honour and a once in a lifetime experience - how could I say no? What was most wonderful was how awesome Calgarians were all along the parade route. When spectators realized what our float was all about, the cheers and clapping grew louder. People yelled out things like "Yay organs!" and "Congratulations transplant people" and "Organ donation rocks!". I found myself a couple of times overcome with what I have become a part of, as a donor. Yep, there I was, tearing up in the middle of 6th Ave, walking in a parade, somewhat behind a dancing horse mascot and ahead of a marching band. It was a pretty surreal, but awesome experience.

Monday, July 2, 2012

Transplant Community

A little more than a year and a half ago, I stumbled into a world I had never known before: The Transplant Community.

It's a world made up of everyday people, families, friends, strangers and of course doctors and nurses. In the beginning, my view of the community was mostly medical staff and a small group of them at that. Over time, closer to my donation, I met a couple of other non-directed donors like myself. Post surgery I finally met one or two kidney recipients as well as kidney patients living on the edge of the community, waiting for their transplants.

A few months ago I threw my name in the hat to be involved in some kind of volunteer capacity with the Canadian Transplant Association, specifically with the Canadian Transplant Games. The games are held in a different city each year and this year happens to be Calgary's turn (July 16-22). I actually remember my living donor coordinator telling me about the games just weeks after my donation of Leftie, and how it would be great for me to attend the donor events as well as perhaps volunteer too.

I've been doing what I can to help out with the media team for the games, including helping with a fundraiser they recently did at Schanks here in Calgary. In doing so I've had the opportunity to meet a handful of "non-kidney" organ recipients. What an amazing experience. It is so refreshing to meet people who don't take life for granted. They've all faced some pretty serious battles in their lives and were given a second chance through someone else's gift. To say they are inspiring  doesn't really do it justice. They are so open about both their gratitude as well as the stories behind why they needed transplants. Medical jargon is tossed around the way most people would chat about sports and weather as is their appreciation for everyone and every thing that played a role in where they are now. It makes for great conversation!

One of the interesting things I've observed along the way in this community is how people define and introduce themselves by their organ related situation. For example, I met a volunteer who was introduced to me as "mother of a double lung transplant". Others introduced themselves as "double lung" or "kidney transplants". At the fundraiser, I found myself frequently being introduced by others to others as "kidney donor-to a STRANGER". (Remember the blinks I used to get on the stranger part? Yeah - they happen in this world too! )

Through these introductions and conversations I've been fortunate to hear a lot of great stories of hope and determination. I've learned a lot about diseases, some genetic and some very random, that have required people-many of them younger than me - to need transplants. Things like Cystic Fibrosis, pulmonary fibrosis, pulmonary hypertension and segmental glomerulosclerosis (Imagine trying to remember that last one for Googling later while at a lively bar function!). I've learned that there is such a thing as "surgeons choice" too for lung transplants (who knew there was more than one way to get that done!). It is inspiring to hear what recipients can do post transplant (almost anything anyone else can do) and what they need to avoid (buffets, large crowds, sun). More than anything, the stories these wonderful people have shared with me have reminded me that nothing in my life has been significantly hard and that we could all learn something about the human spirit from transplant recipients.

I'm not sure where I really fit into this community...I kind of feel like a visitor rather than a new arrival, which is fine. It really is a world focused on recipients (rightfully so) and their families. They've all been through so much.. It's also about celebrating the idea of donor families (most deceased donor recipients in Canada never know who their donors were) and the ultimate choice they made that made these second chances possible. Oddly enough I haven't met any living donors through the Canadian Transplant Association pre-games activities as of yet. I know we are a small group, with non-directed donors being an even smaller sliver of that. It will be interesting to see if I meet any at the upcoming Donor Family Luncheon that is part of the games.

Organ donation and the need for more donors takes on a whole new meaning as you start to surround yourself with people who are alive today because of organ donors. Meeting the friends and families who hoped and wished and prayed for a miracle for months if not years is also powerful. They fiercely support and rally around each other. They believe so deeply in raising awareness so that other can get their second chance too. In a way, the Transplant Community in Canada is a multi-layered family. I feel like if more people could get a glimpse of this world, get to know this giant "family", we'd see a rise in Canadians registering to be donors. I'm hoping that is something I can help with.

Friday, June 29, 2012

Presumed Consent

There is a movement forming in Canada to get the government to mandate a "Presumed Consent" organ donation policy. Presumed consent or "opt out" organ donation essentially assumes that everyone is willing to donate their organs in the event of brain or cardiac death unless they have opted out.

The presumed consent system is essentially the opposite of what we have now in Canada.  Currently, if you suffer brain death, your family is given the option of "opting in" or donating your organs. Also, depending on the province you live in, you may have had the option of registering your intentions via an online registry. In provinces without an online registry, you have the option of indicating your wish to be an organ donor on your drivers license. In the end though, the decision lies with your next of kin.

There are currently 24 countries in Europe who have adopted some form of the "opt out" model. In some of those countries (Spain, Austria for example) the presumed consent model has meant an increase in organ donors. A few countries actually have a lower than average organ donation rates (Sweden for example) but on average, countries who adopt this type of donation system do see higher donation rates. This is especially critical for people waiting for hearts, lungs, pancreas and some liver patients as cadaver donors are their only option. It also greatly benefits those waiting for kidneys (what 75% of Canadians on the transplant list are waiting for) as kidneys needed far exceed the number of living donors each year.

If Canada was to adopt an opt out system, advocates (including the Canadian Liver Foundation) believe the country could boost its donation rates, which is one of lowest in the world. Currently only 13 out of every million Canadians becomes an organ donor, compared with 20 per million in the U.S., and more than 31 per million in Spain.

The big question is this: are we ready for it in Canada? My opinion is a bit mixed. I think from a belief and attitude perspective we are - in some ways. When asked, most Canadians believe organ donation (in general) is a good thing. Most Canadians would have no problem accepting an organ if needed. However many Canadians simply haven't taken the time to register their choice to be an organ donor and have not discussed their wishes with their families. It isn't top of mind. Which obviously is part of the cause of our low donor rates. An opt out system would be an improvement in that regard. Which would definitely save lives.

Where I think we aren't perhaps ready is from a registry perspective. At this point, we don't have a national registry where people can note their intentions. Some provinces have great online registries while other provinces, like Alberta, are lagging substantially behind. In my mind we need a national database capable of housing the preferences of Canadians in regards to organ donation. The registry would need to be accessible to hospitals across the country somewhat similar to the UNOS system in the U.S. (but better of course). We would need a well defined national transplant program  instead of provinces working in health care silos as they do now. There would need to be a greater ability to coordinate the sharing organs across provincial borders as well. (I do know that transplant doctors, coordinators etc. do meet and share best practices across the country but it needs to be formalized and improved).

The other issue I see preventing a presumed consent system right now is the same issue that plagues our current system: awareness/apathy. There are still so many misconceptions about organ donation. For example, some people still think that religion prevents them from being donors or that doctors are less likely to save people who have registered as organ donors (not true on both counts). Under a new system, this could result in many people opting out due to a lack of understanding or fear. At least under the current system, doctors and coordinators can approach donor families  to get consent and can perhaps talk through some of the fears/misconceptions with the families of potential donors.

Most people don't have any idea what opt out or presumed consent means (here is a U.S. site explaining it). While I fully support the idea of a presumed consent system (it is a good idea and critical to saving more lives), I think we need to better educate Canadians on what that means (and doesn't mean) to them. If we expect Canadians to get on board and support the petitioning and lobbying of the government to change the system, we need to give them the "why". Without education in place, we run the risk of generating more apathy towards organ donation amongst Canadians or worse, decreasing the amount of organ donation support we currently have. I think petitioning the government is just one step of many to improve organ donation in Canada and it needs to involve an educational component so that people understand how it could improve things, while not impacting their rights and freedoms  or medical care.

I am confident we can overcome these hurdles in time-sooner rather than later with more national focus and collaboration from our medical systems as well as organ donation advocacy groups. The good news is that organ donation seems to be getting more an more press as time goes on which hopefully will create the momentum and awareness this cause needs to improve donation numbers, get more resources put towards improving the current system and so forth.

If you are ready to support an opt out system of organ donation in Canada, you can sign a petition here. To register to be an organ donor under our current system, here's a great list of links by province. Don't forget to talk to your family about your wishes.

Would love to hear your thoughts: Is Canada ready to start talking about a presumed consent organ donation system? Do you support a presumed consent system?

Friday, June 22, 2012

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.  

Saturday, June 16, 2012

Iron Woman I am Not

As part of the follow-up care my local living donor program offers, I can opt in to yearly tests to make sure everything is a-ok with Righty. It is a win-win situation-my test results help living donor programs on a national level track the health of donors over time and I get to have my results looked at by a local nephrologist who would likely spot small changes my family doctor might not notice. I can opt out of the program any time but to me it is a no-brainer. Get the tests and know I am healthy every June, and continue to see my family doctor for annual check ups in October.

The tests include a half dozen things tested via blood samples, a urine test (to look for protein or infection) and a 24 hour blood pressure test. I completed the tests the last week in May. I knew I had passed the blood pressure test with flying colours and it was my biggest concern. So I was pretty surprised when I got a call from the program. They are only supposed to call if there is an issue so the message to call them back they left had me a bit nervous. Eventually I got a hold of them and they booked me an appointment to see the nephrologist (Dr. Kidney) as my iron (or hemoglobin) was "a bit low".

It turns out a bit low meant a lot low, especially for me. Normal for a woman is 120 g/L to 160 g/L. Before I donated, I was always in the high 130's to min 140's. Right after I donated, that fell to the high 120's (which is normal). That drop was okay because kidneys are responsible for the maturation of red blood cells. Without the kidneys, red blood cells would be without hemoglobin, the iron-rich protein that carries oxygen to various locations throughout the body. So when Leftie departed, it was another job Righty had to start doing on her own and would need time to adjust to.

My iron levels held there own at least until October, which was when my last blood test was prior to these most recent ones at the end of  May. Something since the fall has made my iron drop to 106, which mean I am anemic. As there was no change in my diet, "monthly gifts" and I didn't have any other major bleeding issues, my doctor was a bit perplexed.  Other than fatigue, I wasnt showing any symptoms such as:

  • Pale skin
  • Heart palpitations 
  • Shortness of breath
  • Cramping
  • Hair loss
  • Malaise (general sense of feeling unwell)

I was a little concerned about my results, more because I pride myself in being very healthy and having "good numbers". I was also curious if this was typical of donors or if I was abnormal. I bounced that thought off some friends in an online donor group. It turns out it isn't super common but a couple of other donors did have a similar issue and are otherwise very healthy. Phew. Also, my other test results showed Righty is functioning very well and doing all the things she should be doing (as per Dr. Kidney).

My nephrologist ordered a few more follow up tests and put me on a gentle iron supplement which should do the trick. I'll need follow up blood tests once a month for the next few months to make sure things improve. While my diet has always been good, I am also going to look for ways to ensure I am getting enough iron there as well. This means I will try to focus on eating more of things like:
  • Red meat (woot steak!)
  • Egg yolks
  • Dark, leafy greens (spinach, collards)
  • Dried fruit (prunes, raisins)
  • Iron-enriched cereals and grains 
  • Mollusks (oysters, clams, scallops)
  • Turkey or chicken giblets (um no)
  • Beans, lentils, chick peas and soybeans
  • Liver (um no)
  • Artichokes
I know a fair number of women who haven't donated a kidney and have had problems with anemia over time so this doesn't concern me too much right now. It's also nice to know why I've had bouts of being really tired over the last couple of months too. I am being monitored by the Living Donor program AND my family doctor so I am in good hands. 

Thursday, June 7, 2012

Two and a Half Inches

Love these: a Kidney-versary gift from
Mabelesque Handmades here in Calgary
Can you believe it's been a year? Today is the one year anniversary of Leftie checking out of me and into his new home. In some regards it was the end of at least a leg of the journey for me. All the waiting and testing and waiting and stress was over. I had made it through and reached my goal of being a living kidney donor. While at the time I didn't realize it, a whole new chapter was also beginning.

There is a two and a half inch, faded white scar that sits just to the left of my belly button. That, along with another two little "scar-ettes" is all that seems to physically remain as evidence anything ever happened. I'm healthier than I've been for most of my adult life - my blood pressure is great, I've lost about 30+ pounds through exercise and I'm feeling pretty good. At the same time, I'm a very different person than I was a year and a day ago. I'm braver. I'm smarter about a lot of things. I think I am more focused and I am definitely more confident. It's like I am a new and improved version of myself, minus a kidney.

People often ask me if anything has changed in my life. I think to be honest, the biggest hurdle I have had to overcome is coming to terms with the idea of saving a life. Seriously. It is really difficult to explain but it is much harder than you think. It is so much bigger than me. It is huge- heavy, clunky and awkward. At the same time, it is wonderful, unbelievable, humbling and exciting. For a long time, when people talked about my donation, it seemed like they were talking  about someone else, a different version of me. Doing something like this changes who you are, both to others and to yourself. It can become a bit of a label and like all labels, there are ups and downs. On the one hand I am very proud of what I have done and want to share it in the hopes that maybe others might also become donors in some way (living, deceased...even blood donors). There are other times where I worry that I have championed a cause that is too individual to promote. Organ donation IS personal and people don't always want to talk about it. Am I doing the right thing in trying to engage people in the conversation? And will it make any kind of difference?

In the last year I've had the opportunity to guide/mentor three other living donors (yay!) through their own surgeries. Two were also donating to strangers and I have to hope that this a sign that there is a trend of more non-directed donors stepping up. I was very luck to have a mentor going into my surgery and it has been pretty amazing to "pay it forward". I've also connected with dozens of other living donors online and in person and have been able to swap stories and experiences with them. In the long run, I think these connections will not only increase awareness about living donation, but will also probably make the donation process itself better. As these online and "real life" communities continue to share best practices with one another, it is encouraging to see the medical community taking notes on how to make things better from a patient perspective.

I'd be lying if I said I didn't often wonder about Leftie: how he's doing, and more importantly how his new owner is doing. All I can do is hope that they are both well and will continue to be that way for many years to come. That would make me very happy.

I'd like to take the opportunity to thank a few people. I know I won't cover everybody and I apologize for that but I have to start somewhere. To my awesome friends and family, who went from looking at me like I was crazy when I first started talking about this journey to flooding me with cheerleader calls, emails and Facebook posts the day of surgery, to supporting me as I continue to talk and promote organ donation - thank you. I'd also like to thank the people at Foothills who were so wonderful to me throughout the process and afterwards. (Dr. Y, Dr. M and Teresa to name a few). Thanks for making sure I came out the other end okay and for not getting too upset when I didn't want to eat the green Jello post surgery. I'd also like to tip my hat to the Kidney Foundation of Canada - at the national level and in southern Alberta, for their support all along the way. They have repeatedly given me a platform to tell my story and help increase awareness about organ donation and have welcomed me into their community.

Finally thanks to anyone and everyone who has ever read this blog, whether they kept it to themselves, left a comment or shared a post around the web. Thanks for keeping me going and also for helping me fall in love with writing all over again.

It's funny how it took giving away an organ, to find a part of me that has been missing a long time. And how something as small as two and a half inches can forever change your world.

Friday, June 1, 2012

Dialysis isn't a cure

In my last post I mentioned that dialysis isn't a cure and that for many people, it also isn't something that can go on indefinitely. Like many critical illnesses, some patients respond well to the treatment and do well for upwards of 20-25 years. However this is not a reality for the large majority of dialysis patients. Why should you care? Because kidney disease can happen to any of us. It currently effects over two million Canadians and many of us don't even know we're part of that group.
The National Institute of Diabetes and Digestive and Kidney Diseases (out of the US) reports the dialysis survival rate at close to 80 percent through one year, 64 percent through two years, 33 percent after five years and 10 percent through 10 years. There are many types of cancer (which get much more public and media attention) that have better survival rates than that.

There are a number of factors that influence how a patient does on dialysis including age, how sick they were when they started dialysis and what other illnesses they may have. For example, traditionally those with diabetes and/or high blood pressure do not live as long on dialysis as those with poly-cystic kidney disease (PKD). Younger people (in their teens, 20's and 30's) live longer on dialysis than those who are older.

Dialysis, while designed to help the body by filtering waste and removing fluid when the kidneys can't, also has a "darkside"...a negative impact on the body. The treatments can cause bruising and cramping, nausea and other flu like symptoms. It can impact things like your thyroid and it's functioning. A patients blood pressure can suddenly dive while on the treatment, which stresses the cardiovascular system. Electrolyte imbalances and sudden shifts also greatly stress the body. In fact, Cardiac disease is the largest single cause of death for both hemodialysis and peritoneal dialysis patients, accounting for approximately 43% of all-cause mortality each year.

I was really surprised to learn this. Because of my lack of exposure (thankfully) to kidney disease, I had always assumed dialysis did the exact job that a healthy person's kidneys would do and while a little inconvenient, a person could live a totally normal life with the treatment. As I've continued to learn more about dialysis, the "day to day" things you hear about from patients that don't make it onto the "About Dialysis" information pages are eye opening. So many people have had the experience of seeing a fellow dialysis centre patient go into medical distress or cardiac arrest while receiving the treatment. Many have expressed sadness of learning that a patient they have sat beside every day for months while being dialisized who "seemed fine" has suddenly died. As if living with a critical illness isn't emotionally tough on its own; so many patients have to experience the loss of other patients, just like them. It's has to be hard to hold onto hope in that situation.

Dialysis patients are tough. They rally around each other and look for the silver lining in their situations. I am amazed at how they get through something that doesn't ever have a scheduled end date (other than a transplant and even that isn't a predictable date). You want to learn more about how to be resilient? Talk to a dialysis patient. At the same time, I don't think it is fair that this is the only treatment option for so many people.

What is the solution? Well first off all, prevent more people from needing dialysis in the first place. Kidney disease affect too many people to not be getting more educational and media attention, the way that Cancer, AIDS, MS and Heart and Stroke do in Canada. As adults we need to learn what we need to do to keep our kidneys healthy and do it. We need to teach our kids as well. We need to understand who is more at risk and make sure there is the right supports in place to help them.  Secondly, we need better treatments for those with kidney disease to slow down the progression of their disease so they don't end up with ESRD. This means more research and understanding into the causes of kidney disease and  coming up with alternate treatment if not cures for some forms of kidney failure. In the meantime, an increase in both living and deceased donors would help get many folks off dialysis and effectively save their lives, in a way that dialysis simply can't.

Tuesday, May 29, 2012

The "Did You Knows" of Dialysis

If you have healthy kidneys, chances are you don't know much about what dialysis is. In fact, you probably don't know anything about it. I know I didn't. Here are a few key points I've learned from talking to those on dialysis (and a bit of Googling) about what dialysis is all about and  why we need more organ donors to step up! And yes, I still am not a doctor so this is not meant to be medical advice. You know where to go for that (not here).

Dialysis is the only treatment, other than transplantation, for end stage renal disease (ESRD). ESRD occurs when your kidney function drops below approximately 8-12%%, effectively meaning that your body can no longer rid itself of toxins on its own. Dialysis is a procedure that is a substitute for many of the normal duties of the kidneys.Without dialysis or a new kidney, people who are in this stage of kidney failure will die in a relatively short period of time as toxins and fluids build up in their bodies. And in case you were wondering, toxins are not a result of eating bad things, doing drugs, or drinking alcohol - many of the vitamins and minerals we consume are processed by the kidneys. If the kidneys can't process and regulate these properly, too much or too little of these nutrients can become harmful to our system. The kidneys also do other things like:
  • Balance the body’s fluids
  • Control blood pressure
  • Activate vitamin D to regulate bone health
  • Help stimulate the production of red blood cells
I always thought that if your kidneys fail, you went on dialysis and life went on as normal. Maybe a few appointments a week were a little inconvenient, but that was it. What I never understood was that dialysis is pretty unpleasant and the impact of being on dialysis on your day to day life is huge. I also didn't understand most people can't do dialysis indefinitely (I really thought they could). In fact even a few years can be too much for some people's bodies to handle (more to come on that in a separate blog post).

What makes dialysis unpleasant? Of course that is a subjective term but in a nutshell, here are some of the things that dialysis patients may face (these can depend on the type of dialysis they do):

  • Infection
  • Low blood pressure (causing nausea, fatigue and dizziness)
  • Weight gain
  • Extreme fatigue (to the point where working and daily activities are limited)
  • Hernias
  • Malnutrition
  • Itching/skin rash
Obviously each of these things has its own set of side effects as well. Most dialysis patients are also on special diets which limit fluid intake, many fruits and vegetables and have other strict requirements. The worst part is that patients go through all that and its only doing about 20% of the job healthy kidneys would.

I recently saw this does a great job of explaining the different types of dialysis and what like is like when you are on it:

Obviously this post doesn't speak for every different person's experience with dialysis. Like any other serious disease, treatments and responses to treatments differ from patient to patient. What I wanted to try to do however, is give others like me (who know nothing about this treatment of ESRD) a sense of what dialysis is all about. It's the "why" behind why there needs to be more living and deceased donors.

For more information about kidney disease in Canada, causes, treatments and more, visit

Friday, May 18, 2012

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.