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Saturday, December 24, 2011

What a Year

What a difference a year makes.

This time last year, I had recently completed the first series of tests to see about becoming a kidney donor. In fact, just a week before Christmas I had had my four hour renal scan process, the first "big" test to see how good my kidneys were.

I also still didn't really understand what I was doing. I know that might sound a bit odd but in hindsight, I really can see that I had no idea of the enormity of what I was trying to do. I also had no idea what impact it would have on my donor. On Christmas Eve last year, I wrote this post "Christmas and Family". I talked about my Dad when he was sick and my hopes that I could maybe give someone out there more time with their families. In response to the post I received a wonderful comment from Nancy Smith,-three of her six children have struggled with kidney disease and received transplants:



Hi Lauren! I just came across your blog and wanted to write to encourage you in your desire to donate a kidney. Three of my 6 children have a rare pediatric kidney disease. We have been on what we call our kidney adventure for about 4 years now.

All three of my children have had transplants because other people like you decided to share a kidney. I cannot write this without crying. We are soooo grateful for those precious gifts. These donors have truly given the gift of life to my children.

My 17-year old son, Samuel, who is incompatible with 99.9% of the population, just had a miraculous 2nd transplant on November 12th. It was made possible by an altruistic non-directed donor (like you!) who started a chain of 32 surgeries - 16 donors and 16 recipients. A match for Samuel was found among this group and we traveled from Vermont to Texas to participate in the historic event. Samuel was so sick before the transplant and now, exactly 6 weeks later, is doing fantastic!

This Christmas we will all be together. No hospital, no dialysis! It is wonderful!

So if you ever doubt that what you are hoping to do will actually make a difference in someone's life, think about my children. You may be that kidney miracle for someone else!

God bless you, Lauren!

Nancy Smith


Her comment was a real turning point for me for several reasons.

Firstly, she was my first "stranger" to comment on my blog, all the way from Maine. Not only did she find my blog and read it, she took the time to share her story. It really made me understand the reach I could have in terms of educating people about living donation if I just kept talking about what I wanted to do. Secondly, by sharing her story and sharing her own family's blog, I began to have a hint of understanding of what impact I might have on my recipient, should I be allowed to donate. Her story was also something I could share with my friends and family so that they in turn could understand how kidney disease affects not just the patients but their families. In a way for many of my friends and family, Nancy and her children were the first "real people" we could put a face/name to that had kidney disease. Many more people like Nancy and her family would enter my life over the next year but she was the first and I'm really grateful for the impact she had on me-it certainly kept me going as I stumbled through the donation process.

Here we are a year later. I'm hopeful my recipient is doing well and that he or she is enjoying a different, much healthier Christmas with their family then perhaps last year's. So much of this past year is now a blur for me. While I'm healthy and physically feel the same with just the one kidney, there are so many things that have changed for me emotionally and intellectually. I'm a different person. I think I'm a better person. I am certainly more balanced and my priorities have really changed. I feel very lucky that I was healthy enough to be a donor and have this opportunity. I am glad I've been able to share it with others. I've met (virtually and in real life) some pretty inspiring people along the way from doctors to donors to recipients and their families. I've met people who are STILL waiting for a kidney who are the strongest, most resilient people you could ever imagine.

To all of these people, and to my wonderful friends and family-Merry Christmas-and thank you for everything.

Monday, December 12, 2011

Paying It Forward

A few months ago I had a young man (wow that makes me sound old and grandmotherly) email me about this blog. He was very to the point and asked me to keep writing it. He was in the process of being testing to become a non directed donor in the US (the middle part-we'll keep his location myseterious) and he was finding the blog amusing/helpful. We emailed back and forth several times over the last few months as he went through more testing, and dealt with all the big milestones donors face like telling our families, dealing with the uncertainty of testing and the nerve leading up to the surgery date.

In his case he went through a couple of steps I didn't-he met with a bioethicist. We both has to guess at what that was as it seemed to differ from the psychiatrist and social worker. By definition it is someone who deals with bioethics which is the "study of the ethical and moral implications of new biological discoveries and biomedical advances, as in the fields of genetic engineering and drug research". In the end though the bioethicist just asked a lot of the same questions as a social worker would and didn't bring up ethics at all really.

The donor friend also had one of his cross matches fail...he got "the call" that said that the person they thought he matched was not a good match. Outside of the "you aren't allowed to donate" this is the next worst call I think. I am very glad I never had such a call...I am sure it would be more than a bit frustrating and I know for me last spring it would have seemed devastating. Luckily for him though another match was found quickly and that cross-match passed with flying colours. And as of this morning, there is someone in the mid-US who has a kidney. My kidney friend is doing well. What an awesome Christmas gift he's given some one! I am sure he knows this but he did a really great thing today. I feel really proud of him which seems so odd given that he is otherwise a stranger to me. He was so calm and collected throughout the process it was unbelievable.

I feel so lucky to have been able to keep in touch with this donor along the way. Much like my friendship with Erin, it has been really rewarding for me to be able to help someone else through the ups and downs of the process. I really feel like I am paying it forward. In no way am I responsible for either of them choosing to donate but hopefully I made some part of the journey easier for them just as others made the journey easier for me.

Tuesday, December 6, 2011

Six Months Later

Here we are...six months later (just about-tomorrow is the actual anniversary). To be completely honest it seems like a lifetime ago now-a big blur of tests, tests and more tests, a little drama and finally an operation.

Obviously by my lack of posts, you can make the assumption that no news is good news. I am healthy. My 3-4 month check up revealed that my pep talks to Righty have not gone unnoticed and she is functioning at a level doctors would consider good if I had two kidneys. My cholesterol is low, my BP is on average about 15PT lower than it was before and to top it off I am healthier, having lost (in a healthy way) about 20-25lbs. My nephrologist was impressed (yes he used that word)-he said I was ahead of the game. I feel good most of the time. When I do get extra tired, it does feel like I'm a little more tired than I would have been under the same circumstances before the surgery. But that is rare so I can't complain. Next check up at the one year mark.

I do wonder about Leftie and how he is doing, or more importantly how his new owner is doing. I hope with everything in my that the surgery was a success and Leftie and his new home are getting along okay. I've thought about writing an anonymous letter (which the program could send through on my behalf) but I'm still at a loss how to get past the opening line.  Erin, who also recently donated her kidney in a non-directed donation (aka Jessi in earlier posts) wrote a letter to her recipient that I may just borrow. With permission of course. She managed to get passed the opening line (and she is doing awesome in her recovery!).

I've also been approached to work on a collaborative, volunteer project to promote and provide resources about living donation.  More to come on that one but it is something I am really excited about.

In other news, my e-friend Kerry Mortimer recently wrote about the power of social media, my donation and Erin's donation (which the Globe and Mail covered as it was #100 in the LDPE program!) on her sister's kidney website (check out the article here). It is a good look at how small social media can make our world. I remember way back during the blog talks with my friends at Foothill's someone said "the kidney community is very small". The fact is...its a very large community but I will concede that social media makes that community much more accessible and easier to connect.  There is also another great article on her site about another prospective donor and why he decided to get tested. I shared so many of his emotions as I was going through the process; I could really relate to his story.

I know I've been ignoring the blog a bit as of late. I'll have to give some thought as to what is newt for "To Make  A Choice". Until then, here's to Leftie and Righty, and the last six months!



Wednesday, October 26, 2011

Kidney Day

Perhaps Jessi and I will celebrate one
of these days in person
Today was a pretty Kidneyriffic day.

My kidney friend, who I haven't met but have talked a ton with online, donated her kidney to a stranger. I think I've referred to her as Jessi in this blog so we'll call her that until when/if we opt to use her real name. The important thing though is that she is doing well after surgery and everything went as expected. I can't believe how nervous I was for her.

Yesterday I woke up with a million butterflies in my stomach. At first I couldn't figure out what I was anxious about. Work? No. I mean lately its been  a circus-like environment but that wasnt it. The child? Charlie? No. I ran through the usual list of things to worry about. Everything was fine. Then I realized...I was worried/nervous/excited for Jessi. And I think a part of me was reliving the day before my surgery through her. All the thoughts, feelings, ideas and questions ran through my head...for the second time this year.

Today was no better. I was excited all over again. I was thinking about her and her recipient and how surreal things must be for them as they get suited up at the hospital and get ready for surgery. I wondered if Jessi was calm and collected or if her mind was going a mile a minute like mine had been the morning of my surgery. I wondered about her parents and boyfriend and how they felt leaving her at the hospital. I'd catch myself throughout the morning thinking about what was happening, if the surgery had started and how everyone was doing. Part of me thinks it might be a little weird pondering the fate of a stranger but at the same time I feel like I've been a part of so much of her journey thus far that this was just a natural next step. I am so glad that she made it through a-okay and that Canada has another non directed donor out there.

The next kidney moment happened today when I was poking around on Twitter (looking to see if there was a Jessi update). I noticed Alberta Health had posted a link to a story about a "transplant first" for Alberta. I opened up the link and there was Dr S and another lady from Foothills smiling in a picture talking about a chain of transplants they did back in June, kicked off by yours truly (aka as the "anonymous donor" in the story). The article is great, albeit a bit after the fact and I know Dr S. is probably thrilled it was done. I think the spirit of the article is in the right place. I do take issue with how they kept mentioning the "anonymous" factor. Non-directed living donation CAN be anonymous but I'm not convinced it has to be, especially after the fact. The anonymity label also worries me a bit if it leads to irrational hospital procedures like the lockdown "you do not exist as a patient" policy Foothills put me through. Thankfully despite her non-directed status, Jessi is not going through the same thing where she is donating-they have her in with the other renal patients being cared for my nurse and doctors who are used to treating post donation and transplant patients. And she isn't a secret patient.

I hope the press release gets the living donor program more attention. It seems like the more the word gets out there, the more people step forward to be tested. I do think that the stories featured in and on the news of people waiting for kidneys or people who have opted to donate a kidney help more than hospital written stories. The difference is definitely the people factor. When you see pictures of people involved, you can relate to them. You can put yourself in the position of their families. And you want to help them. Or in the case of donors, you look at what they've done and think "I could do that-they are no different than me".

A couple of other Kidney related things happened as well today but I'll keep those under my hat for now. There are a lot of rules and guidelines and secrets in this world of kidney disease and kidney donation and I don't want to rock the boat for anyone awaiting transplantation or donation.

Wednesday, October 19, 2011

Watching Time Fly

I've had a lot going on lately hence the no posting. It's also meant I delayed getting my three month blood tests done till I was virtually at the fourth fifth month mark Let's split the difference at four and a half months.

I headed up to Foothills for the test although any lab would have done. I like the Foothills lab in the South Tower though. You never have to wait more than  5 minutes-at many of the other labs I've been to even with an appointment delays occur. Foothills I can walk in and poof...I'm in the next three people seen. They are just nicer there too. I don't know if its because they are used to more living donor patients (and recipients) but you are treated much more like a person there than at the other labs.

I haven't been to Foothills since my post surgery check up[ in late June. I really had a feeling of returning to the "scene of the crime" I found it funny how smells, signs and people I saw (like lab techs) brought back all the feelings and thoughts from when I was going through the testing period. Something felt anticlimactic in these test though. I care about the results-good results mean I am healthy and Righty is doing a good job. But before the donation the same tests seemed so much more important, like so much hinged on each drop of blood they drew. It is hard to explain. It was also strange looking at "kidney Donor" on my lab forms, instead of "possible kidney donor". Different doctor ordering the tests too-one I've never met or heard of. No more Dr S. I haven't talked to him in months either-time just moves on right?

Back to the tests: they told me when they sent the forms they were optional and that a copy would go to both my family doctor and a nephrologist (the weird name on the form). I can confirm nothing has gone to my family doctor EVER despite all assurances along the way that results would be shared. I went for my annual check up this year and she knew NOTHING about my donation. She got more than she bargained for when she asked casually "So...what's happened in the last year". I let her know about the kidney donation. What surprised me a little (and honestly was kind of nice) was that there was no fuss, no blinking, no questions. She simply asked if I was okay and was the recipient. I said I'm fine and let her know why I had no idea about the recipient. She didn't even raise an eyebrow-just said good for you and asked me which side so she could put it in the computer. Her only other comment about the subject was to let me know I could put vitamin E on the scar as long as it was still pinkish purple but when it turns white, don't bother. And she gave me her fax number to increase her odds of receiving future test results.

I did receive a call from the Living Donor program. Very strange to see a 403-944-.... number flash on the call display. They let me know I had the option of meeting with the nephrologist this time around to go over results. I hope that this doesn't mean anything bad. I did get the feeling it was optional but the fact that you traditionally don't learn test results unless there is a problem has me a smidge worried. But on the same note, it is within the realm of "normal" right now not to have 100% kidney function. Righty is still growing and catching up in her duties as uni-kidney. We'll see. I booked something for the end of the month-if anything I'd like to see what they have to say overall.

Otherwise for the most part I'm feeling good. My blood pressures been on the low side lately but I'm not sure what is causing that (it isn't the kidney thing-if anything that should make it higher than normal). If I still am feeling symptoms of low blood pressure at the appointment, I'll let them know.

I'm getting close to the first year anniversary of this all starting. On the eve of my 36th birthday all I can say is "Time Flies". It really does. Epically fast. Although I know several times in the last year I'd have begged to differ.

Monday, October 10, 2011

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.


****************************************************************************
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


Wednesday, October 5, 2011

October

October has always been my favourite month. When I was a kid, I had 2 friends (as well as myself) and 5 family members (including my Dad) with birthday. That equalled a lot of cake and parties. Throw in Thanksgiving, the wonderful leaves (especially in Ontario) and October was a pretty great thing.

It's also been a month where big, life changing things have happened in my life. Thanksgiving 2005, I was maid of honour in my friends wedding-it was a beautiful wedding for a wonderful couple but I was miserable. I was also unemployed and starting to give up on whether or not I'd ever find a job again (dramatic I know but if you've been in that position more than a few weeks, you know how it feels). But two weeks later (on my 30th birthday no less) I finally got a job offer-for a job I really wanted. Fast forward a year. On October 6, 2006, I moved to Calgary which was probably the smartest thing I've done in my adult life.It was also the biggest, scariest thing I've done (and another thing that left my family and friends thinking I was crazy).  Ironically the move came 24 hours after probably the single worst event/day of my life-which very few of you know about. It was a tough time but I made it through and Calgary has become my home. I've done really well here-something I think set the stage for another huge event in my life-the "Kidney Thing".

Someone recently said to me that while they think they could go through with donating a kidney to a stranger from a medical perspective, they just couldn't right now with where they are in their lives. They thought that  they sounded selfish in saying that and apologized for it. It really isn't selfish though-its the truth. If you told Lauren of 2005 that in under 6 years she'd be donating her kidney, she would have thought you were nuts. I wasn't capable of even thinking about something like that then. My head was somewhere else (virtually underwater actually). I had a quarter of the confidence I do now. I was a very different person. Even as recently as 3 years ago I don't think I would have considered it-I didn't have the stability and the support I do now.

I think last October when I made the choice to contact the Living Donor program, it wasn't just about seeing something on TV and looking into it. I'm sure I've heard other donation stories over the last few years that didn't even stick with me because I wasn't open to the possibility. It wasn't the right time for me to hear the message and ponder the possibility that I could do something like that. Timing really is everything. Last October something hit me right. Something compelled me. And here we are. Friday is the four month anniversary of the end result of that decision last year - Leftie moving into his new home. I'm feeling great and optimistic about what the next opportunities are around the corner-seeing what this October will bring me.

Wednesday, September 28, 2011

Normal

I knew this would eventually happen-the blogging would slow down. Part of the reason is that I've been busy with other things (work, life, mostly work) and partly because I've had a bit of writers block this week. Not just when it comes to the blog. I really want to get my "kidney" book project started and although I've been given tips on how to get it out to publishers, there is a bit of work to do first and that part has my wheels spinning.

I also have a kidney related website in the works. By in the works I mean completely laid out in my head and somewhat laid out on a piece of paper. I'm still trying to figure out if I want to buy a website in a box kind of a solution or build the site from scratch and use the web hosting service I inadvertently bought a years worth of. Despite the fact that I am an eCommunications strategist by day, I seem to be tripping myself up on this one. Probably because my heart is in it way too much and I want the end result to have some legs to it.  Anyway I've given myself till the end of the Thanksgiving weekend to make a choice and get the content built. I'm hoping to launch it end of October - a fitting way to celebrate the one year anniversary of kicking this whole "kidney thing" off.

I do have some posts coming up but for several reasons they are better suited for October. In one case I'm waiting for another living donor wannabe to have one of their appointments, so they can tell me what a certain process they had to go through but I didn't, was all about. And later in the month Canada will be adding another non-directed donor to its ranks (yay!) so I'm hoping to relay some of her experiences (especially because hers are also going to be a little different than mine leading up to the surgery).

So there you have it. I know-not the most interesting post but in some ways that's a good thing. It means my life is pretty much back to normal. It occurred to me the other day, I've stopped having phantom pains for the most part. Only when my personal trainer at boot camp is feeling a little ab crazy so I get any kind of pain in my stomach and its more of a slight switch. I can eat pretty much everything and I can now drink three drinks (vs the previous two) in an evening without a hangover the next day. And while my energy isn't quite 100%, its pretty close. So I'm normal. Minus Leftie.It still does seem strange to be that life is as normal as it is less than four months later. I don't know what I thought it would be like but normal seems weird. But I'm health, happy and other than the scar, all is the same. All is very normal.




Saturday, September 24, 2011

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.

Friday, September 23, 2011

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.

Tuesday, September 20, 2011

Top 10 Things I Learned From the Kidney March

While I could probably go on foreever about the Kidney March, and all the things I saw, experienced and learned, I realize I am rapidly becoming "the Kidney March Girl" so this will be the last post on the subject (till next year).


Top ten things I learned from the Kidney March
  1. My choice to donate Leftie the kidney was bigger than I knew. I know what you are thinking...how could you not know? Here is what I thought I knew. I was helping someone-one person. I read stories of people on dialysis. I thought I understood what that was like, as best I could without having been there myself.  Family members of people affected by kidney disease emailed me to tell me the impact I might have-I could relate having experienced serious illness in my family. I thought I understood the scope of what I was doing. But until the march I don't think I really did. I understood it on paper but not in practice. In a bizarre, round-about, weird analogy way, it's like my knowledge vs.experience with death when I was younger. Until I was about 16, no one I knew had ever died. But I understood death (or thought I did!) An avid reader, I knew a ton about the biology of death, as well as the emotions, the steps and stages of grief. I knew what rites of passage and rituals came with death. I had even participated in one by going to a  co-workers dad's funeral-a big RCMP funeral with mounted escorts and all.. I thought I knew what death was all about, how it felt and what it meant. Then, when I was 17, my dad got sick and almost died. Then he got better. And when I was 19, he got sick again. And then he died. I realized in his last few months I didn't know or understand a thing about death. It isn't something you can fully grasp, no matter how empathetic you are, until to have seen it's impact. The Kidney March made me feel that way about my donation. Hearing people talk about their kids with weakened kidney function, or their own transplants and even failed transplants was humbling. Knowing people were leaving to do dialysis mid march or were doing it at night at the camp was a dose of reality I hadn't expected. How other marchers and crew viewed me and shared their thoughts on my choice to donate was also overwhelming. Without actually meeting Leftie's new home, I think I came as close as I ever will to understanding the enormity what I did. And I am grateful to have had my eyes opened more than I thought they could be.
  2. On a lighter note, I still can't effectively type kindey kidney. Despite actively blogging, Facebooking, Twittering and emailing about things related to kidneys for 11 months,  I think it is the number one thing my spell check catches. I think this explains why I almost failed grade nine typing.
  3. 100km is far. Really far. But you can fit a lot of great conversations in there. (I think it would be a good dating exercise to get to know someone don't you?)
  4. People don't always think before they speak which can make taking the high road a bit tougher. Sometimes on the march people got cranky. Blisters, heat and distance can do that. On my first day near the end, as I rode in the van feeling dejected for "quitting" we stopped at a rest station. Someone in the march asked me if I was done for the day and I said yes, feeling worse for having my failure outed. This person knew I had recently donated a kidney. They were in a position to know the impact that can have on your energy levels for months afterwards. And they said "Well you really didn't train for this at all" with a shrug and walked away. At that moment, tired, sweaty and upset, I had to take the biggest deep breath of my life to not respond because it wouldn't have been pretty. But I am proud of myself for making that choice. It made me more aware of everything I said and every interaction I had with marchers and crew for the rest of the weekend to make sure I wasn't going to repeat that person's mistake of not thinking before speaking..
  5. It doesn't matter how far you go. I learned this on Day 1. And again on Day 2. I believed it as of Day 3. Kudos to those who went the distance-whether it was 10km or 100km
  6. It doesn't matter how much you raise. (See #5 but convert KM to $$)
  7. The ability for people to overcome obstacles and challenges in their lives is amazing. The grace which some people have in doing it is inspiring.
  8. Kidney disease/damage touches everyone-old, fat, skinny, rich, young, poor, urban, rural, Black White, Asian, ugly and good looking. It's a sneaky devil and wears many faces. It is a lurker. Think you haven't been affected? Just wait.
  9. I need to do more to raise awareness about living donation. I have a responsibility and if I wasn't sure of the value I can bring on the subject before the march, it is crystal clear now. By telling people my story, I can have an impact on making living donation more common and understood.
  10. Kidney disease isn't sexy. Guess what? As much as I heard a few people say we need it to become a "sexy" disease like the others that get more attention (no one named names but let's throw Cancer and AIDS out there as obvious high profile targets)-it doesn't need to become sexy. First of all, I can tell you from experience there is nothing nice, stylish, interesting or sexy about cancer. It sucks. 1000%. Same thing with AIDS. All diseases actually whether they be more or less well known than Kidney Disease. This isn't a popularity contest. Know why there are diseases that have more awareness, more funding, more media attention? Because those causes went out and found champions (if the champions didn't find them). People with clout in their local communities/nationally/internationally (for other reasons beyong the disease) who understood just how brutally sucky those diseases are. They found famous people affected by those diseases who are passionate about finding a cure and bringing the community together as a whole. Kidney Disease doesn't need sexy. It needs a face people know and look up to (for whatever reason). It needs a voice that will raise it awareness above the din of the crowd. And it needs people to work together, towards to the same goal so the message isn't watered down..
So that's what I learned (oh and that double running socks not only are awesome but they are $4 cheaper at Mountain Equipment Co-op than at the Running Room). See you next year Kidney Marchers.

Sunday, September 18, 2011

Kidney March-People Power


‎"We relish news of our heroes, forgetting that we are extraordinary to somebody too." Helen Hayes

The greatest part about the Kidney March are the people. Doesn't matter if they are marchers, crew or those that fall in between, they all have a story. You can learn from every single one of them. There is something very powerful about that.

I'm a little shy and can be a bit of a loner. Engaging people in conversation isn't always my strong suit. Despite this, by the end of the second day of the Kidney March I had talked to at least 20 people enough that I had a sense of who they were and what brought them to the march. What fueled them to keep going.

Like the mother of a young girl with an auto immune disorder that attacks her kidneys randomly. I was amazed at how much she knew about the human body, the medical world and how many battles her daughter had already been through from the simplest of colds and flues. I can't imagine how scary it is to have to deal with a sick child or a world where a trip to a Children Hospital is normal. When she asked me why I was marching and I told her I was a donor-she thanked me. That just didn't seem right-after all I hadn't done a thing to help her or her daughter. I couldn't help.

Or "RBC Jim" (what I called him-not how he referred to himself). I actually knew of him before the march. An organ recipient, he had sent an email to friends asking for their sponsorship of his daughter in the march back in the late spring. A friend of mine had forwarded me the email as encouragement as I was just about to donate Leftie-he wanted me to see how organ donation had impacted someone in his life. When I found myself sitting beside Jim while he waited for his daughter at the massage tent, I decided to introduce myself and let him know of our mutual acquaintance. I mentioned the email and why our friend had sent it to me. We talked about some other things and he then said "So you are a donor then". I said yes and he asked to whom. When I told him a stranger asked me if I was catholic. I said no and he remarked that was too bad because if I was, I'd probably be worthy of sainthood. I laughed, thanked him, reasoning that one kidney does not erase all the other less than saintly activities I've done in my life. He smiled and said that in his mind, there was little that could not be neutralized by the act of donation and he too thanked me. What I liked about Jim is how positive he was-its like he had a genuine love for every moment, every experience each day brought him. Organ donation gave him a second chance and he isn't going to waste a bit of it. I especially liked his joke about his belly being a little more robust than average because there were spare organs in there (although they don't all work" he quipped).

I met two ladies who were marching in support of their friend's children who were born with kidney problems. It is one thing to pledge money for your friend to march but to walk that far for someone else's kids is pretty amazing. These ladies were in pain a lot towards the end of the march (blisters) but they kept going as best they could. In doing so they kept me going when I wasn't sure I had steps in me left to take. One of those ladies asked me a ton of questions about donating a kidney and near the end confided that it's something she would consider now that she knew more.Stuff like that reminds me how important it is for me to keep talking about kidney donation because sharing my story might just lead to others donating someday.

There was also Didja and her family (click to watch her story). I think she inspires everyone she meets. She is so strong, so positive and so genuine. She has been to hell and back medically and keeps on going-with a smile. Most of us would have given up after even a quarter of what she's been through or at the very least we'd be miserable people. Or at least very self involved people. But not Didja. During the Kidney March she rallied my spirits several times. I was humbled by her optimism. Whether it was a well timed hug or just cheer or nod, I think it is safe to say she powered every marcher forward at some point over the weekend. And her family was fantastic. Her husband was so supportive of everyone marching, making sure people were safe and had everything they needed. Their 11 year old daughter did whatever she could to make marchers in the "Happy Van" feel welcome-whether it be getting them a drink at rest stops or offering candy. She is a smart, compassionate kid with a quiet confidence beyond her years. As individuals they were amazing and as a family they were a strong, inspirational unit.

Cathy
Cathy was another mighty marcher I had some knowledge of before the event. She sadly lost her daughter (who she and her husband had named Juggernaut, in the hopes that she would be “an unstoppable force”)  in utero at 5 months gestation, because of complications relating to Cathy's hereditary kidney condition. She did some unique fundraising including a 3 day Kidney Raffle event which raffled off products and services (like marketing and branding work) her friends and colleagues had donated (the marketer in me liked this idea very much). I first learned of her story from our dog Cricket's foster mom Jane. At the time I was in awe of the fundraising goal Cathy had set and how she was making it happen. It was really cool to meet her and see her several times along the route of the march.

Sue, Lee, Marian and Rosie-inspiring ladies
There were so many others I met that left an impression on me-my Ontario crew I've mentioned before. Sue, a kidney recipient who gave me the best insight I've had yet as to what living with dialysis and the uncertainty is like. And what it is like to be on the receiving end of someone else's kidney. Marian and her candid words about being a kidney donor herself. She made me laugh with her matter-of-factness. She was also my voice of reason and I hold her mostly responsible for the fact that I stayed healthy didn't overdo it during the march. Rosie and Lee...they are fabulous strong, smart, confident women. I admire them both so much and how hard they worked to raise so much money (over 30K!!).

I was excited to also finally meet Jill from the Kidney Foundation. Last October, while watching a downloaded episode of Grey's Anatomy feature a domino transplant chain. I looked up the Kidney Foundation of Southern Alberta to see if we do that kind of thing here in Canada. I searched through their contact options and finally settled on Jill, as the Manager, Programs & Organ Donation Initiatives. I nervously emailed her to see if she knew how my donating a kidney might work in Calgary. She responded in a friendly, encouraging manner and directed me to the Living Donor program at Foothills. I think had she not responded so positively and quickly, I may have lost my nerve-and this past year wouldn't have turned out the way it did. We kept in touch via email over the months, chatting about my intentions, the social media ban and more. She invited me to the Kidney March celebration last January so I could learn more about kidney disease and the people it impacted, to better understand the positive implications of my potential donation. Meeting Jill face to face after all this time was like coming full circle on this crazy kidney journey.

There were so many remarkable people powering the Kidney March it's hard to do everyone the justice they deserve. And I know there were so many others I didn't even talk to that were equally inspiring and had stories that deserve to be shared. It would make a great coffee table book. Maybe I'll do that next year :)

Just under 300 or so everyday people raised well over $700,000 for the Kidney Foundation in the 2011 Kidney March. They also donated their feet, sweat and tears to the cause. They brought their stories, good and bad, and more importantly their hope for a future without the effects of Kidney Disease. They kept each other going and made sure no one was left behind. The Kidney March was a fundraiser-but it was also just as much about the value of the power of people brought together by a common goal. It's not often you spend a weekend with strangers and at the end of it all feel like anything is possible.






Friday, September 16, 2011

Kidney March Day 2-One Foot in Front of the Other

Tent city (borrowed photo)
The worst best thing you can do for a sore, aching body is lie down in a small tent on the hard cold ground. I think the first night I woke up every 30 minutes with my hips and thighs feeling like I was lying on a pile of jagged boulders. I wasn't-the ground was actually grassy and not even really hard but my body wasn't up for the sleeping arrangements. Part of the problem was the cheap mat I had bought to sleep on-word of advice-that is not where you suddenly want to get cheap when shopping. It's been awhile since I've slept in a tent and I had also forgotten how cold it can get at night. I was glad I hadn't been thrifty when buying the sleeping bag. Otherwise spooning with a stranger might have been required.

Before starting off on the march I went for breakfast-again pretty impressed with the choices. No matter what kind of a breakfast eater you are, your needs were served. Eggs, bacon, yogurt, fruit, oatmeal, cereal. All there. And of course coffee. It wasn't Starbucks but it was warm and on a cold morning, it got my vote.

After breakfast I headed over to the medical tent to get the cankle wrapped up. It was amazing what a difference that made (in conjunction with putting my running shoes on). It was slightly sore but I could walk normally. One of my marching buddies had seen me in my flip flops earlier and had pronounced my gait as being "terrible" and recommended I not walk that day. A little ankle wrap was all it took for my gait to be approved by her.

We hopped a school bus and headed to the middle of nowhere-somewhere west of Elbow Falls. Beautiful middle of nowhere. We were the last bus to arrive therefore were the last herd of marchers to get out on the road. I kind of wish I had made it onto the first bus to give myself more of a head start-I think I'll make a point of that next year. I was excited to be walking with my new friends Sue and Marian. Sue had been such a great walking partner the day before and I was curious to learn more about her sister in law (Marian) as she is also a donor (and a very interesting lady). We started out into the rolling hills of K-Country, past streams and ravines. Every since I moved to Calgary almost five years ago I've wanted to see a bear or a cougar. As we were walking and I surveyed the wilderness, I realized how stupid that wish was and hoped that today wasnt going to be that day that the wish came true.

I was feeling positive, strong and like I could walk as far as I needed to. As we walked along we talked about everything from dogs to blisters to kidney donations. Marian was outraged to learn I had gotten to eat not once but 3 times (with the option of more) the day before my kidney donation-she had not been permitted to do the same. Once again-different programs-different rules and process. It was really cool to find out what she experienced vs. what I had, ans also lean more about the "recipient" side of the actual surgery from Sue. Even thought I spoke to other donors prior to surgery, our conversations had nothing on all the details and comparisons that come out over hours of marching. It was "good for the soul" kind of talking with belly laughs and even a few teary moments.

I found myself also being a bit of a tour guide, explaining some of the hiking areas we past along with the texas gates. Not bad for someone who this time 5 years ago had to Google what a texas gate was. On a related note, I do not enjoy walking over those...they scared me a little bit. The only one of the three we encountered I could walk around resulted in my also cutting my leg on barbed wire. This was right after Sue said "watch the barbed wire". I am good that way. Funny how you can cut your leg but your pants remain intact as well.

Bleeding leg and all we trudged on in the beautiful sunny weather. The day warmed with time, much like it had the day before.We stopped at every rest station and stretched and also did the odd bit of stretching and photo ops in between. This was by far the best day for scenic views. My right hip and both thighs as well as the cankle were achy but with a regular dose of Tylenol I was getting by. I was happy I was doing so well. Although lunchtime was a welcome relief.

The lunch spot was pretty in a park beside a pond. When we arrived it was pretty clear we were within the last few to get there. There was a musician serenading the thinned crowd seated at tables in a field. Nice touch. We got our lunches and were happily eating and airing our feet. One small beef I had with the march was how obvious it was you were last to certain checkpoints (like this lunch). Its hard to relax and rejuvenate when they are literally packing up tables and chairs around you. I had left my stuff on a table while I went to go see the paramedics about the barbed wire cut and the table I had been at was fully packed up, my things placed neatly on the ground to the side. One of the few elements of the march I would suggest changing because it did kick at morale a little bit.

Despite the fact that I was feeling fine (tired and hot kind of fine) a bit of a scary thing happened at lunch. One of the marchers (also a donor) ended up developing symptoms of heat stroke and was taken by ambulance to hospital. While in the end the marcher was okay, it really made me wonder if I was pushing myself too hard, so soon after surgery. And I wasn't the only one thinking that. My marching buddies were equally concerned if not more so that the heat and hills for the rest of the day would do me in as well. They kept reminding me I was only at three months post surgery. We continued on after lunch but that was weighing on my mind.

We kept marching, up and down short and long hills. Cars waved, trucks honked and bikers nodded in appreciation of our efforts. We made it to Bragg Creek and I'm pretty sure we were in last place. I stopped to use the washroom and came out. I was feeling the heat and the exhaustion was about to kick in. I think Marian saw it on my face because a little ways down the road, as a sweeper van approached, they flagged it down and put me in it. I didn't even put up a fight. I'm glad I complied because about 25 minutes later, safely at camp, I started to get dizzy and lightheaded. Nothing that a shower and a massage couldn't just about fix :)

To be continued.

Wednesday, September 14, 2011

Kidney March 2011-End of Day One

Rosie and I by one of the better quote signs
The one good thing about not marching the full way on day one was that I arrived back at camp before the bulk of the marchers. This meant first dibs on a shower and a massage as well. But first I had to find my stuff and my tent in "tent city".

Tent city is a sea of red tents. Very tiny red tents. They were divided into colour coded sections (which was what I was supposed to tie to my bag so it would be put in the right area-but I had not). I limped around and finally found where the "colourless" bags were. I then went to look for my tent, "85 Pink". I quickly found it and was pretty happy knowing I had the tent to myself. They were teeny and I couldn't imagine the prospect of spooning in one with a stranger-no offense to any of the lovely marchers out there. I quickly unpacked my stuff, got the shower gear and headed off as quickly as my sore legs would allow, to the shower truck.

Having a shower after walking over 20km in 30 degree heat is about the same as having a hamburger after starving all day: in reality what you are experiencing is not best in class but it feels like the most luxurious, amazing, decadent thing ever. I've never used a shower truck before but it was very clean with decent water pressure and the right amount of heat. Before I saw what the shower solution was I had envisioned the sandy campground showers with the lukewarm water that barely got you wet-this exceeded all my expectations.

After my shower I went and put my name down for a massage. I didn't have to wait more than about 15 minutes. I was asked what was ailing me (my ankle and right leg) and she set to work on both. It was one of those "hurts so good" massages. After it was over (each session was about 15 minutes) everything was feeling better except the ankle/foot area, aka the "cankle". I realized this might require further attention from the medical tent. But first-I was hungry!

I went to the food area....they had a big dining tent set up with a separate food line where friendly crew would serve food up on your plate.  They also had a separate area for drinks. I was impressed by the section-there had to be something for almost everyone. I got my food (spaghetti and meatballs with salad) and went into the tent where I was happy to find my adopted team members Rose and Lee. We chatted about the days events and as we were wrapping up, Sue and Marian arrived-they had walked the whole way and we just getting back to camp at that point. I was humbled by how far they had gone and how they kept going, even though they must have been the last to come in. Made me feel a bit wussy 'till I stood up and the cankle reminded me part of why I had stopped.

After dinner I went to the medical tent and waiting in line with a few blistered people to get the cankle checked. I heard the first half of Kidney-oke (karaoke) starting in the dining tent-it was good entertainment while waiting to see the medical staff.. I didn't need to wait too long until I aw the nurse-she did some tests on my ankle and thought I may have sprained it (due to a weakness from an old injury) but the doctor thought it was more likely that I irritated the "sheath" in my foot. Tape and ice were the solution as long as the swelling stayed relatively low. Woot! The doctor was funny-he looked at me and then looked an my medical sheet (which indicated I was a recent donor) and then looked at me again. He said "you are one of those altruistic donors aren't you?" I nodded-he said "cool" and went back to looking at my foot. I have know idea how he knew that but it was nice to have a break from explaining (I don't mind explaining but its nice to have a break! Especially when having cankle issues!)

I was exhausted and it was starting to get dark so I headed back to my tiny red tent and got comfortable for the night. I realized that they had the whole tent city illuminated with giant spotlights-they eventually shut off every night at 9:30 but it made getting around without a flashlight pretty easy. Little things like that made for a nice stay, even in little itty bitty tents.

I don't even remember falling asleep-I was that tired. I do remember really looking forward to seeing how I would feel day two, and more importantly how much I could accomplish.

Tuesday, September 13, 2011

Kidney March 2011-The March Starts

Well it's over. Done. Finito. What an experience. The 2011 Kidney March was what I expected and more. And there were some thing s that could have been better (as with everything in life). But the idea is great and I'd consider doing it again. Because of the enormity of the experience (beyond the 100km), I've decided to make a few posts about my ups and downs and impressions over the weekend. Here is part one:

Arriving at the baggage drop off zone at the Delta South Hotel in Calgary at 6AM felt a little like being dropped off for summer camp. I was excited, nervous and a little a lot unsure of myself. I was also feeling a little rushed as I had left much of the packing for that morning and as a result had just left the house in time to make it to the hotel. We were halfway there when I remembered I forgot to both eat breakfast and tie the "Tent City" colour coded tag to my bag (so they know where to put your luggage). This only added to my nerves-I hate not being perfectly prepared.

I said my goodbyes to "Charlie" and wandered into the hotel lobby. It seemed like there were people everywhere-inside and out and I didn't recognize anyone. After a few minutes we were all instructed to head out to the buses. On my bus, the only seat that didn't have anyone in it yet was the one right behind the bus driver. I of course picked that one. Keener. Eventually a man came along and asked if he could sit there. He quickly was greeted by others around us as "Doc" so I assumed he was a doctor. Turns out he is indeed and is a paediatric nephrologist at Children's Hospital here in Calgary. We chatted briefly about kidneys and why we were marching. I learned that due to advances in the last 10 years or so in diet, monitoring and medication, they  can often prevent most kids living with kidney disease from needing a transplant at least into adulthood. Research (and funding for research) does indeed pay off. Very important, especially when you are dealing with kids.

The other three in Lee's crew!
We arrived at the kick off location (Millarville Race track). They had a good selection of fruits and yogurt (phew-the no breakfast issue was overcome). People milled around and made their way to the stage area. I still was feeling very "by myself" but that didn't last long. Lee Ferreira, my very first Kidney March sponsor, found me and introduced me to her three team mates, Marian, Sue and Rosie. When they moved, they made sure I came along with them. People took photos of their teams on the stage and there was a quick opening ceremony and a warm up. Then we were off!

And somehow I was by myself again but in the beginning everyone was so bunched up it didn't matter. I just wasn't talking the way everyone around me was. The energy was high and there were a lot of smiles around me. We started trekking towards the main road. It was pretty impressive to see all the marchers in their "Failure is not an option" shirts moving along the roadway. Despite being surrounded by people though it would have been cool for those first few kilometers to have had "team mates" around me. Next year right? I fought off the urge to sing "All by myself" as I walked. Nobody likes a martyr. One of the crew/cheer people I passed asked me where my marching buddy was. I told her I didn't have one. She said she might come walk with me a bit later in the march.

We walked a few kilometers and ta da-our first rest stop. I have to applaud the event organizers on this feature of the march-the rest stops were almost always perfectly spaced and had everything (usually) from water to Gatorade to Oreos and port-o-potties. You could enjoy any or all of the features for as long as you needed and in any order that suited you.

About two or three stops in I caught up to Lee and crew and had marching buddies again. Time and space go by much faster if you have people to talk or listen to. Or even just to experience the scenery with! The Kidney March organizers had these great quotes along the roadway too which were motivating at least the first few times you saw them :)

By late morning it was getting pretty hot out. My energy was holding up but I knew the sun would start to get to me. I was kind of worried about a repeat of golf day where I overdid it in the sun and lost the whole next day. As much as I am feeling great 99% of the time these days, rumour has it that donating a kidney is major surgery and that was only 12 weeks ago.The more we trekked on, the more tired I got. We finally arrived at the lunch station and I felt like every muscle in my legs was on fire. I stretched and stretched and stretched which seemed to help some but not others. We were towards the rear of the "pack" of marchers and as such we seemed to catch the tail end of lunch. We quickly ate, feeling pressure to keep going.

After lunch, our team had split up a bit and I was walking with Sue. She is a fantastic lady. Without getting into great detail about her story, she is a kidney recipient (from her sister in law) as of about a year and a half ago. It was so interesting to talk to her and hear about her experiences with dialysis, waiting to see if  she had a donor match in an extended family member or friend. It was hugely helpful to me and it helped me better understand what life with Kidney disease is like.

At about one stop after lunch I knew my energy was dwindling and there were a lot of sunny, brutal hills ahead. My muscles were fine and I was blister free but I had no energy left. As much as it totally made me feel defeated, I climbed into a sweeper van (vans for people who need a ride for as much of the course they want). There were a few people with me in the van and everyone was pretty quiet (in pain and/or a bit deflated). The cheer-crew lady who had promised to walk with me was in the passenger seat of the van. She tried to keep our spirits up and got everyone talking about why they were marching. There was a range of answers from family members/friends affected or lost to kidney disease, people who worked in the renal field etc. I was the only donor (in the van) and there were a few questions about that. It was good to listen/talk as it kept my mind off feeling badly for "quitting" for a little while.

After a bit of touring around we started to make our way back to camp. I was very excited about the prospect of a shower. And a massage.

To be continued...

Thursday, September 8, 2011

I Think I Can

Actually I know I can.

I will admit I am still a little intimidated about walking 100km with a bunch of strangers for a cause I didn't even really know existed a year ago. This afternoon, I was in my car, fretting about sharing a tent with a stranger, meeting new people and how to perfectly duct tape my feet to prevent blisters. As I drove to the kick off "Day Zero" meeting I wondered, yet again, what have I gotten myself into-what was I thinking?! Talk about distracted driving.

Then exactly halfway down to the hotel where the meeting was being held, a pretty strong inner voice spoke:

"Um hello!?!? You donated a kidney. You got through that. This is no big deal".

My friend Crystal posted a very timely quote this afternoon on Facebook. "It's not who you are that holds you back, it's who you think you're not." I am starting to realize that I am a lot more than I give myself credit for. I've accomplished a lot (not just kidney related) and I can do a whole heck of a lot more. It's taken me almost 36 years to realize this and really believe it.

So this 100km should be a piece of cake*.


*My feet do not necessarily endorse this last statement .