Don't Boil the Ocean

Here is a guest blog post I did last year for mindyourmind.ca 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.

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.

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.

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?

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.  

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.

Be a Donor

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

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

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

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

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

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

In the News: Sister's secret vow saves life of Victoria man

What I love about this story from the Vancouver Sun (aside from the happy ending) is the fact that so many positives were born from the original tragedy of this family losing a loved one. There are so many lessons in this story, from the importance of organ donation to the ripple effect it can have. It's not often you read an organ donation story involving both deceased donation and living donation so this one is pretty special. Who knows-maybe indirectly this family will go on to save a 7th life (or more) by influencing people to let their families know their wishes in the even of a tragic accident. Or even perhaps someone who reads this story will be inspired to look at living donation.


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The last time I saw my 26-year-old nephew Regan Slater, he was lying brain-dead on a hospital bed in Manchester, England, as a transplant team cheerfully bustled around him.
I wasn't supposed to have seen that. Relatives are spared watching how quickly a medical team swoops in to begin harvesting organs. I had only returned to Regan's hospital room because of a forgotten key.
While initially taken aback by the light banter among nurses at my nephew's bedside, I left feeling hopeful. Something good was going to come out of our family's biggest tragedy. Without hesitation, Regan's parents had consented to him being an organ donor. My nephew's death after a biking accident on Aug. 19, 2006, meant five gravely ill people would live.
Three months after Regan died, my sister received a thank-you card from one of the anonymous organ recipients.
"This is one of the most difficult things I have ever had to write," it said. "I will never be able to understand the pain and loss that you must be feeling at this time. I am a father of two young children, a loving husband and son. My kidneys failed suddenly six years ago and I have been on dialysis ever since."
A second letter from a 57-year-old woman who received Regan's liver followed: "I have hesitated writing to you because I did not want to intrude on your grief. I am hoping that what I have to say may be of some comfort. ... Your precious gift has changed my life and given hope and joy to me and my family."
Their stories solidified what everyone in our family believed: that my sister, Denise, and her ex-husband Bert, had been right to give consent for their eldest child, of three, to be an organ donor. All of Regan's donated organs saved lives. But the story didn't end there. Five years after his death, Regan is being credited with helping save a sixth life, this time in his hometown of Victoria.
My other sister, Debbie Pemberton, had read the thank-you letters forwarded by the UK transplant team. Unbeknownst to the rest of the family, she promised herself that if she ever heard of someone who needed a kidney, she would donate one of hers in Regan's memory.
On Sept. 26, Debbie fulfilled that promise. My 53-year-old sister was wheeled into an operating room St.
Paul's Hospital in Vancouver to become a live transplant donor. Her left kidney is now inside a man she initially barely knew but today considers a good friend.
Mark White, a 50-year-old mechanic in Victoria, had been on dialysis for four years. He would sit hooked up to a dialysis machine for four hours at a time to remove the waste and excess water from his blood.
"It was brutal," said Mark. "It keeps you alive but it doesn't give you quality of life."
Mark suffered from polycystic kidney disease, an inherited disorder in which cysts form on the kidneys, causing them to become enlarged. His late father had it.
Last year, Mark's 52-year-old sister, Diane, died from complications while on the kidney-transplant waiting list. Mark's twin brother also has the disease, and Mark's 19year-old son is showing signs that he too has it. Since there is no treatment to stop cysts from growing, the disease gets slowly worse and results in kidney failure.

There are 325 British Columbians on the kidney-transplant waiting list. To get on the list they would have to have lost 90 per cent of their kidney function. If those not yet on dialysis were added, the number of people needing a kidney would swell to approximately 800 , said Dr. David Landsberg, medical director of the renal transplant program for B.C. Transplant.
Last year, about 120 kidney transplants were performed in B.C. - half from deceased donors and half from living donors. In two cases in 2010, individuals anonymously volunteered to donate a kidney to complete strangers.
Since everyone in Mark's immediate family suffers from kidney disease, no one could donate a healthy kidney. His wife, Anita, was willing but she wasn't the right blood type, and health issues also prevented her from being a donor. Mark had been told his wait could be up to eight years, and his time was running out.
As a temporary solution, both of Mark's kidneys were removed last January, tying him closer to the dialysis machine. His treatments went from three times a week to every other day. "I was fearful how much longer he would have," said Anita.
"That's when Mark and I had serious discussions about the future."
Mark and my sister were passing acquaintances when she decided to give him one of her kidneys. They had been briefly introduced years earlier by Anita, a volunteer at Greater Victoria Police Victim Services, where Debbie used to work.
D ebbie researched how to become a live donor and called Anita to find out Mark's blood type. Debbie didn't ask me, our sister, Denise, and our two brothers, so much as tell us of her decision. Everyone was on board. "My family was surprised.
Almost speechless but also supportive," Debbie recalls.
Although they were the same blood type, both Mark and Debbie had further testing to ensure they were a good match. "When Anita first told me, 'Debbie wants to give you a kidney,' I was just dumbfounded," said Mark. "All I could say was, 'Wow.' "
Mark and Debbie got to know each other as the operation date drew near, and she shared the story of Regan, Anita said.
Debbie's operation took place one Monday morning, while Mark and Anita waited nervously, hoping she would be OK.
Both Debbie and Mark were assigned their own medical teams, which were kept separate to avoid any conflicts of interest. The donor team's priority is ensuring the donor is safe, Debbie's donor transplant co-ordinator Cynthia Davies explained.
The rule applies until the moment a kidney is removed. If something came up that would be a detriment to Debbie's health, the operation would stop. Mark's operation would only begin after the donor team gave the OK for the recipient team to start. Luckily, both operations were a success.
Within hours, tests showed Mark wasn't rejecting the kidney.
Interviewed while the two were in hospital late last month, Anita cried when she talked about seeing an ultrasound showing Debbie's kidney functioning well in Mark's body. Mark, who was up and walking around the day after the surgery, said he still finds it surreal knowing he won't have to do dialysis again and is free to resume his old lifestyle.

When I consider this altruistic gift from my sister to someone she barely knew, I can't help but think back to our shared childhood. Debbie and I are just two years apart. We grew up in a family of five children in a southern Ontario community, with parents who immigrated from England. Our parents valued kindness and often talked about how we needed to support one another.
My sister didn't ask me to write this story. Both Debbie and Mark agreed for one reason - to encourage others to sign an organ-donation consent form. B.C. is one of the first provinces to provide an online registry, which takes only two minutes to complete and requires just knowing your CareCard number.
The day of their surgeries I went to the website (transplant.bc.ca) and did something I've been meaning to do for five years - I signed my organ-donor card.
kpemberton@vancouversun.com

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.

A Transplant Makes History

How crazy and scary it must have seemed to be a part of this almost 60 years ago. Innovation is a very, very cool thing. Would you have had the guts (pardon the pun) to be a part of the early days of transplantation?

A transplant makes history | Harvard Gazette

As Harvard celebrates its 375th anniversary, the Gazette is examining key moments and developments over the University’s broad and compelling history.

In late 1954, Richard Herrick was dying. Just 23 years old, he had been discharged from the Coast Guard months earlier and had come home to Massachusetts to reconnect with his family, which included his twin brother, Ronald.

But the joy of his reunion was tempered by Herrick’s diagnosis of kidney disease, which at the time was often a death sentence. By October, he was a patient at the Public Health Service Hospital in Brighton, Mass. His health was worsening.

His family kept a vigil by his bedside, but had been told that his kidneys were failing and that there was little hope of a cure. Yet Herrick’s doctor recalled that not far away, at the Peter Bent Brigham Hospital and Harvard Medical School (HMS), some doctors and scientists were working on the problem. They were devising ways to transplant healthy kidneys into those whose organs had failed, and they were looking for twins to attempt the first operation.

The small group was viewed with skepticism by the medical establishment, with one physician dubbing them “a bunch of fools” for their efforts. There were valid grounds for skepticism. After all, even if they could surmount the technical hurdles of the transplant — severing and reattaching blood vessels and other critical connections — the body’s rejection of foreign tissue was poorly understood and could not be overcome.

But the group of “fools,” led by a young surgeon and Harvard Medical School professor named Joseph Murray, felt strongly that they — and their dying patients — had nothing to lose and much to gain.

“If you’re going to worry about what people say, you’re never going to make any progress,” Murray said during a recent interview at his home in Wellesley Hills, Mass.

The group’s perseverance and skill would bear fruit just before Christmas that year when they performed the world’s first successful organ transplant, between Richard and Ronald. At 11:15 a.m. on Dec. 23, their work not only gave Richard a new lease on life, it ushered in the era of organ transplantation, giving hope to thousands of patients each year whose own organs are failing. Richard Herrick lived eight more years.

Today, roughly 17,000 Americans undergo kidney transplantation annually, according to statistics from the National Institutes of Health. Nearly all of them — better than 95 percent —survive the first year after surgery, and more than 80 percent are still alive five years later.

Not only have the number of kidney transplants skyrocketed, but physicians building on Murray’s and his colleagues’ work have pioneered the transplantation of many kinds of organs. Between 1988 and 2011, more than half a million organs were transplanted in this country alone, according to the U.S. Department of Health and Human Services (HHS). (At the same time, more than 121,000 people — including more than 600 children under age 5 — are waiting for organs in this country, according to HHS statistics.)

“It opened up a whole new concept of treatment, by substituting a failed organ with a healthy organ from someone else,” said Nicholas Tilney, the Francis D. Moore Distinguished Professor of Surgery at HMS and the Brigham, and author of the book “Transplant: From Myth to Reality (2003).” “When I got here in 1964, the early mortality rate following transplantation was as high as 50 percent. By the end of the year, there were virtually no survivors. Now, if someone dies, it’s a cause of great angst.”

As Harvard looks back at the 375 years since its founding, Murray’s work on organ transplantation stands out as a scientific and medical milestone, one that netted him the 1990 Nobel Prize in physiology or medicine. It also illustrates the potential impact of teaching and research at Harvard, and the potent partnership with the research, teaching, and patient care going on at its affiliated hospitals.

Murray’s milestone is just one in a long line of critical advances pioneered at Harvard and its affiliated institutions, from the first use of anesthesia atMassachusetts General Hospital in 1846, to the development of the computer by Howard Aiken in 1944, to the breakthrough by John Enders in 1948 that allowed the world to rid itself of polio, to more recent milestones, such as physicist Lene Hau stopping light in its tracks in 2005, and Harvard astrophysicists discovering planets orbiting other suns and divining that the universe is not only expanding, it is accelerating.

During this key period in kidney transplantation, Murray divided his time between the Surgical Research Laboratory at Harvard Medical School, where he worked out techniques used in that and subsequent operations, and the Peter Bent Brigham Hospital — today Brigham and Women’s Hospital. At the Brigham, Murray treated patients whose deaths he would work to stop and whose courage at undertaking risky transplant surgery paved the way for the lives routinely saved by such procedures today.

“I had no idea of the worldwide influence of it. It expanded to other organs, multiple organs,” Murray said.

Murray, today professor of surgery emeritus at HMS, gained his first experience in tissue transplantation during World War II. Fresh out of Harvard Medical School, he was drafted and spent the war at Valley Forge General Hospital in Pennsylvania. Among his duties was grafting skin on the many burn victims who passed through his ward, an experience that got him thinking about tissue rejection.

After the war, Murray returned to Harvard and the Brigham. He worked with physicians who had already begun kidney transplantation experiments and who relied on the critical support of Physician-in-Chief George Thorn, who had established a kidney transplantation program.

“There was a very enthusiastic chief of surgery — nobody else was doing it — and they pushed and pushed and pushed,” said Tilney, who took over Murray’s lab after his retirement. “It was the right people in the right place at the right time.”

By 1954, the work in the Surgical Research Lab had paid off. Murray felt sure they could technically perform the surgery. The rejection issue still stood in the way, but drawing on experience from skin graft surgery, where it had been shown that tissue from identical twins was not rejected, he thought that transplanting kidneys between twins should work.

Though Murray and the other doctors involved had prepared extensively for the procedure, Murray said that he approached the operation as he would any other. He once told a grandchild who asked how he got the Nobel that he didn’t work to get the prize, he just did what he thought best for his patients.

After the operation, Murray’s work on transplantation continued. Despite his success with the Herricks, the problem of rejection generally still presented a high hurdle.

In the years that followed, Murray used first X-rays and then drugs to suppress the immune system and keep the body from rejecting the grafted tissue, but there were few successes. Through those dark years, he and his colleagues pressed on, inspired by the dying patients who volunteered for surgery in hopes that, even if they didn’t make it, enough could be learned that success would come one day.

“We were trying. In spite of several failures, we felt we were getting close,” Murray said. “It’s difficult to translate the optimism of the Brigham staff and hospital. The administration really backed us.”

Finally, in 1962, in collaboration with scientists from the drug company Burroughs-Wellcome, Murray tried a drug, Imuran, on 23-year-old Mel Doucette, who had received a kidney from an unrelated cadaver donor. The success of that operation and the anti-rejection drug cleared the final hurdle to widespread organ transplantation between unrelated donors, and set the stage for the many refinements and breakthroughs by others in the years to come.

Murray’s legacy didn’t end with his retirement in 1986. The Brigham continues to be a center for transplant surgery, with pioneering work in face transplantation being done today by a team led by Assistant Professor of Surgery Bohdan Pomahac, director of plastic surgery transplantation at the Brigham, giving a new lease on life to people horribly disfigured by accident.

“He’s taken it far beyond anything anybody had dreamed of,” Murray said.

The Need For a National Living Donation Plan

Why aren't there more living donors?

This has been a question my brain has been kicking around for awhile now. Granted, donating a kidney is not medically possible for everyone but why don't more people try? People give blood everyday, they donate money to charity. They take part in 3 day walk-a-thons and bike rides. People are willing to commit hours everywhere to support organizations in their communities.Yet living donation is rarely considered, especially the notion of donating to a stranger. Which is too bad because currently over 3,000 people in Canada are on waiting lists for a kidney transplant, according to the Canadian Organ Replacement Register (CORR). With about 35,000 Canadians suffering from kidney disease that number never goes down and has the potential to go even higher. Kidney disease can't be "fixed"; it can just be managed  with diet, medication, exercise (all depending on what the cause /illness is) until the kidneys get to the point of failure-then its dialysis till transplant or, sadly, death.

Is it just that the concept of living donation, especially in Canada, is relatively unknown? I think that is a big part of it. Living donation  has been happening in Canada for at least 40 years, although the option of donating to a stranger has only really become available in the last 5-7 years. Add to that that there isn't a really strong national program or body to promote living donation and, well, little-to-no awareness ensues. Did you see where I said "lists" above, in reference to the number of people waiting? If you need a kidney, you go on the list for your local transplant program. There also isn't a national list (like UNOS in the States) although Canadian Blood Services has been operating a paired donation registry since 2009. That's a bit different though as it does not incorporate all the people waiting for transplant, just incompatible donor-recipient pairs (where you want to donate to a love one but aren't a match but are still wiling to donate to another person so long as your family member/friend get a kidney) from across Canada. The registry compares the medical information on all the pairs in the database and identifies pairs that might be able to exchange donors. When a non-directed donor like me comes forward, they are sometimes added into the registry in order to create a domino chain.

My point is that I think there needs to be some kind of a national play developed out-a national living donation plan. First off, they need to get the logistics and process of these donation programs nailed down and make them the same across the country. Right now its about a dozen or so programs doing their own thing, with different policies, programs and testing processes in place. Some areas have more developed, robust programs in place while other (for example Saskatchewan) are struggling to keep their program open and running. If operationally things aren't consistent, then they will never get to a place where they can promote Living Donation. Secondly they need to promote awareness on a unified, national level. I kind of see where that is becoming an issue with deceased or cadaver donor campaigns and I'd hate to see that happen with living donation promotion as well. This year, Ontario launched the beadonor.ca campaign  to encourage all Ontarians to become registered organ and tissue donors and educate them on the impact of their generous decision to give. While this is a fantastic initiative, how hard would it have been to make this a national program? Even if registrant's information (behind the scenes) were funnelled into different "lists" managed by provincial health agencies based on their address information? It just seems silly not to mention redundant to have each province needing to develop out their own, likely very similar, ways of recruiting donors.

Picture a chain of restaurants, all of course using the same branded name, but each is developing out their own menus, way of operating and marketing strategy. It doesn't take a business degree to know that it isn't cost effective or the most logical way of getting things done and that they'd be far more effective joining together. There can still be slight regional variances but by sharing best practices and creating some standardization, everyone benefits.

I understand that there was a National Task Force on living donation set up a couple of years ago involving, doctors, nurses, program coordinators etc. I am curious to see if a national solution is something they are working towards. If they are, it would also be great to develop a program that allowed for non-medical staff involvement too-donor and recipient support/advocacy roles. Either way, a national strategy is certainly needed. I hope it happens because I think it's the best strategy, that in the end will lead to more people being helped.

And P.S. it's probably cheaper for you, governments!

Where's Leftie?

A lot of people ask me if I know where he ended up, if I will ever know--if I even want to know.

I was told the night of my surgery that he was doing well. He was so happy in his new home he started working right away. Good job buddy. A few days later they shared that everyone involved was doing very well and recovering as expected. At my post surgical follow up, Tina, the Living Donor coordinator passed on a message from the recipients family: They are thrilled, so appreciative and they wanted me to know how much I have impacted not just Lefties new home, but the entire family. If I never get any other information, this is really all I needed to know/hear.

That  being said, if given the opportunity, would I like to meet the recipient? Absolutely. I don't need a relationship, to exchange Christmas cards or anything like that but I'd like to see them. Get a snapshot of what their lives are like. See the people Leftie is with now. I don't know why exactly but I am curious.

I really do liken it to the whole "adoption" experience. I have to be okay with never meeting them, or not necessarily liking what I find if I do. The added twist in the case of kidney donation is that Leftie isn't mine anymore so they can do whatever they want to him and I have to not care. Which I think is fine. I'd hope they'd treat him right and I'm sure they would-I think 99% of people in their shoes would take advantage of the renewed health and do their best to keep themselves healthy.

I've watched a few You Tube videos of meetings (my favourite part of the linked video is around the 18min mark) at other hospitals (in the States). Some are just meetings, others are press conferences or more formal presentations at medical events. I don't have a picture in my head of where I'd like to meet or how it could go. That's probably a good thing as it may not ever happen. But if it did it would be pretty cool. I have no idea what I'd say to that person or their family and  imagine they feel the same.

I'll probably always stop and think from time to time "Where is Leftie" and wonder how he is, and more importantly his new keeper are doing. I'm sure they may even think of me from time to time and how we came to be connected for life. It's a pretty unusual feeling to have this kind of connection with a complete stranger.

But you never know what will happen...maybe we'll meet., maybe we won't. It's not something I can force or make happen but here's hoping.

Top 5 Things They Did Right

Now that I've summed up my hospital experiences donating my kidney,  I thought I'd do a bit of a debrief on what was great (and what could be improved-next post...).  Everybody likes a Top 5 right? ("They" being Alberta Health, Foothills Medical Centre and the Living Donor program).

1. Doctorpalooza:
 The surgical transplant team overall were fantastic. While I didn't get to see/know them all to the same degree I did with Dr. S, Dr. W, Dr Y they were all warm, friendly and clearly dedicated to what they do. They had a collective sense of humour that was refreshing. Above all though, they are a true team of individuals who have a passion for what they do and their patients. I realize kidney donation and transplant isn't rocket science and the surgeries themselves are generally "unremarkable" (as Dr. Y described mine). So many people have complimented me on my donation but really to me-these doctors are the ones really making differences in peoples lives-they are the heroes. I do have to give a special mention to Dr. S as I dealt with him the most.  He clearly cares a lot and always made sure I was engaged in what was going on. He took a genuine interest in me as a person and what I had to say which really made me feel comfortable.
2. The Process:  While we had a few hiccups when it came to communication and timing (which we can work on), I think the donor screening process itself was very thorough. I went into the surgery knowing I was more than medically (and mentally) fit to do this.I don't feel like I should have had more tests and I think 99% of the tests I had made sense even if we were a little backwards sometimes. Most tests could be scheduled easily around work and other appointments were always at more convenient times of the day as to not be too disruptive.
3. Shining Stars:  There were a few people along the way that don't fall under the Doctorpalooza umbrella that really made a difference.  My "floater nurse". Tina, the Living Donor program co-ordinator. The three renal scan ladies who waved their arms along with me in an effort for the contrast dye to move out of my elbow. The nurse in the ER (I'll get to why I was there eventually in a later post) a week after surgery who told me I should have gotten an iPad2 instead of a medal for my kidney. Thank you. You love what you do and it shines through. You always treated me like a person and not a patient (there should never be a distinction but one seems to exist). You were always candid, funny and really professional.  Keep doing what you do because you really are great at what you do.
4. Openness to Change: Everybody I encountered who is involved with the Living Donor program were very clear about how new this is, especially when dealing with non-directed donors like myself. Nobody once pretended to have it all figured out. No "faking it till you make it". What a relief. That made most of the bumps I hit along the way easier to understand, accept and move on from. What was even better is that you continually invited me to help you make the process better for people down the road. That has meant a lot to me and I look forward to being able to help with that further.
5. Answers: Regardless of whether I was asking what "code 66" meant or what c-reactive protein is, someone always was ready, willing and able to explain it to me. While I was going through the testing phase any medical questions I had (usually via email) were answered in a timely fashion (usually by phone!) and detailed enough that I wasn't left with more questions. It sounds simple but it doesn't always happen that way in life.

So there you have it. There is a whole lot of good in Living Donation and the program in southern Alberta..

Torn-The Good and Bad of our Healthcare System

This is kind of an unscheduled post. I was having a great conversation with a good "interweebs" friend of mine last night and again this morning about my blog. She said my posts are starting to remind her of her experiences with healthcare. Her bad experiences. And she lives in the United States.

While she wasn't in anyway criticizing what I was saying but it struck a giant chord with me. It's been bothering me the last week or so as I've written many of these posts and in doing so have re-read my journal and iPhone notes about my hospital experiences. It does sound more negative than positive. And I hate being that person, although I do believe I've been objective in communicating what my experiences were. I have not gone out of my way to be negative (I've just been honest) and have tried to highlight the great people and treatment I've had along the way.

It's tough and I've grappled with these feelings from the day I was admitted to the hospital as a kidney donor. I love our Healthcare system. I am thankful for it, grateful and appreciate we are very lucky as a country to be able to sustain such a system. Sure, in places like the US where healthcare isn't "free" there might be pockets of extraordinary healthcare but that is often at the expense of other pockets of their communities that are almost criminally under served. I want to be clear-I believe in our system and how it works. There are always ways to grow and improve any organization and I don't think we should shy away from that.

I did however receive some pretty craptastic care and attitude at the hands of medical professionals who are a part of that system. I don't want to point fingers but it was more often than not the nurses and the administration. I don't know if that was a result of something in our healthcare system that does not allow them to excel in their professions or if its just a case of me having bad luck and getting a few bad apples. I'm also not sure if my somewhat "foreign" presence on the trauma ward was part of the cause of the sometimes bad care I received. If that is the case, that is an easier fix with the development of a stronger, more efficient living donor process which I know the Living Donor program is deeply committed to.

I guess I just didn't want this blog to become a bitchfest about our healthcare system as a whole or make it become about the crappy treatment I received from time to time after donating Leftie. I especially don't want to deter other donors from donating thinking they will have the same treatment. I know in my case, the Living Donor program is very interested in all the ups AND downs I experienced (and asked me to be sure to blog about them) so that they can take steps to fix them for the next guy or gal who wants to donate. And I really do believe that they will do everything in their power to make those changes. They are really great people and their hearts are in this 100%. And to me that counts for a lot.

So please don't use this as a tool to blast our healthcare system and say that its broken o it doesn't work and we need something else. And certainly don't be deterred by some of my bumps in the road if you want to donate in Canada. It still is worth it and you will get the care you need.

That being said if you are from Alberta Health Services and/or Foothills Hospital-you aren't fully off the hook. I want you to do well-I am rooting for you. Take my experiences and see what you can do to make it better for the next person in my place or for the next patient in general. Remind your people why they do what they do. Remember we all end up as patients one day.

Thanks.

Day Two-Let's do lunch...or dinner?

There are five basic things that you need to accomplish post kidney donation in order to be discharged from hospital. You will see they are all very much inter related-some will not work without the others happening.
Here they are in no particular order:

You need to be passing gas: this is probably the first thing you can easily cross off your list as you don't have a lot of control over it. All that co2 that goes in during surgery eventually will make its way out...

You need to be up,walking around. This is definitely required because it helps get everything going-the tooting , the "outputs" and helps with the breathing as well. Day two I started off feeling a little sad and just kind of "bleck" in general but as soon as I was up walking around I felt 1000 times better in all ways. I was shaky at first and appreciated having Charlie there for support.

You need to be peeing "enough". I don't know what "enough" actually is. As of midday, day two, I was doing okay but not great in this category-not enough for them to remove the catheter yet. (PS...walking laps with a catheter dangling between your legs is both the most bizarre feeling and somewhat embarrassing even a hospital setting. I was thankful for the giant mu-mu gown they had found for me to use as a housecoat as it meant you could hardly tell what was going on under my gown). It's too bad there aren't pictures really.

You need to poop. Basically quantity, quality or proof arent important here. If you can say that you did, you get the check mark, no questions asked (unless Dr. S is the one doing the asking then he seemed more interested in getting output info). However ice chips and IV fluid with a dash of apple juice and a twist of powerful meds for 2+ days doesn't really motivate one's digestive system. I'm just saying.

You need to eat and tolerate it. To me, the second goal depends so much on this. I was ready to eat something the morning of the second day. I had thought as a result of what Dr W had said in the morning I'd get something to eat at lunch but nothing ever came. When the evening nurse started at 4 I asked her when I might be able to eat and she said according to my chart I should have started at lunch.  But when Dr W showed up after 4 (with Dr. S, Dr. ?, another doctor from the original Doctorpalooza group and some other medical lady in tow), he said dinner was always supposed to be the first one. And to not eat too much.

I have no doubts Dr. W was being totally serious when he told me not to eat too much for dinner. But when dinner is a bowl of chicken bouillon, and apple juice and a cup of really rubbery lime Jello, it's easy to see there is a joke in there somewhere. Beggars can't be choosers I suppose but it was so unappealing I really had issues even attempting it. I ate the consume until I couldn't take the blandness any more. I tried valiantly to nibble the jello but I just couldn't do it-the texture was just not working for me and the flavour was very strange. It doesn't even strike me as being something with any nutritional value? There might "always be room for Jello" but not in this case.

The best  news of day two was that Dr. S thought it would be good to take the surgical bandages off and just leave me with the steri-strips.To me this is a good thing because it means you are healing right? He pulled at them gently at first but then ripped them off in true bandaid removal style. I think I must have glared at him a little because he kind of smirked back and said "that's the part that hurts the most".

Clearly he doesn't have to eat the food :)