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.

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.

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.