Open Organ Resources? Lessons from Sharing

You should read this post by Cable Green before proceeding below.

In 2001, MIT President Charles Vest’s annual report was titled Disturbing the Educational Universe: Universities in the Digital Age — Dinosaurs or Prometheans?. It is an absolutely seminal piece of writing in open education that is, sadly, underappreciated today. To most people, Prometheus is famous for stealing fire from the gods and gifting it to humanity, and this is the theme Dr. Vest follows in his address. However, when I hear the name Prometheus, my mind always turns immediately to his punishment. This is perhaps the only thing I remember from the weeks our high school English teacher spent dragging us yawning and snoring through Edith Hamilton’s Mythology. For his punishment, Prometheus was chained to a rock. And every day, day after day, an eagle came to tear out and eat his liver – which then regenerated overnight. How did the ancient Greeks know that livers regenerate? I always thought that was so cool… 

Several months ago, I received a phone call from a very close friend – Cable Green. He was calling to privately share the news that the PSC that had been slowly damaging his liver for years had a new roommate. He now also had liver cancer. Needless to say, this new development was dramatically accelerating his end of life timetable.

This was absolutely devastating news. Cable and I have been like brothers for over a decade. I can’t really describe the strength of the bond I feel we’ve developed as we’ve worked shoulder to shoulder in the trenches on anything and everything related to open education. Though I’ve given hundreds of talks over the years, a joint keynote we gave in Maryland stands out as one of my favorites.

After taking a beat to process the news, I uttered those embarrassingly feeble words that make you feel guilty just saying them – “Let me know if there’s any way I can help.” I suppose there’s some degree to which “it’s the thought that counts,” but the helplessness that I felt in that moment was so frustrating. He replied, “Well, actually, there’s this thing called living liver donation…”

The ancient Greeks knew a thing or two. Not only does the liver regenerate, but it regenerates really fast. Certainly not in a single day, but within a single month. And because this is true, the living liver donation procedure is possible. In the procedure, a surgical team removes all of the recipient’s liver, removes 2/3 of the donor’s liver, and puts the 2/3 liver from the donor into the recipient. Over the next few weeks, both the recipient and the donor regenerate their own full-sized liver. One becomes two!

Cable and I understood early on that there are a whole range of open education-related jokes to be made with regard to living liver donation. For example, is living liver donation the ultimate revise and remix activity? The recipient takes an existing resource (2/3 of the donor’s liver), incorporates it (into their body), and extends and enlarges it to truly “make it their own” (regenerating the missing 1/3). What could be a greater example of revise and remix? Then there are a range of jokes about “the 6th R” and whether this should be Regenerate or Regrow or something else. And of course, don’t we need a new Creative Commons Liver License? And, critically (sarcastically), should a person who remixes a CC-licensed liver into their body ever be allowed to participate in commercial activity again? I mean, that liver was very special to me, the donor… It was literally a part of me. Wouldn’t an NC restriction be reasonable? Etc. You get the idea. I think we’ve made most of the jokes that are possible at this point, but we’d love to hear new ones you come up with. These have been a real source of laughter and happy distraction to us.

I’ve learned a lot about organ donation over the last several months. Please take a few moments to learn more about organ donation. Being a living donor Raising your hand to volunteer is only the beginning of a very involved process. It is impossible to say whether the qualification process is more rigorous than the informed consent process, or vice versa. For me, both took place over a three day period earlier this year. The qualification process involved “lots” of bloodwork, a CT scan, an MRI, an ultrasound, health history surveys, a psych exam, and other things I’m certainly forgetting. You can be disqualified for being overweight, for choosing to donate for the wrong reasons, for not having a sufficient support network at home, for minor quirks in the anatomy of your own liver, and for a hundred other reasons. Gratefully, I qualified to be a donor.

The informed consent process was equally rigorous. In each interview and conversation, the donor gets some variation on the message, “There is no benefit to you as a donor – only risk. Do you understand? Can you explain back to me what the risks are and why there is no benefit to you?” The primary risk they want you to understand is the chance of dying as a result of donating. The rate of death attributable to donating is currently about 1 in 300. That would make choosing to donate my liver the most dangerous thing I had ever done, statistically speaking.

I’ve served on a university’s IRB before, and so I understand why the protocol is drumming into donors the idea that there’s no benefit for them in donating. The idea is that if I’m perfectly healthy and you put me on a table and start cutting me up, things can only get worse in terms of my physical health. But I’m more than my physical health. There definitely are benefits to doing what you can to give someone you love a chance to see their children grow up, graduate, get married, etc.

The most important thing I learned during the evaluation process was that the strictest rule governing a donor’s recovery – no lifting anything heavier than ten pounds for eight weeks – was actually stricter than I thought. The real rule is no lifting, pushing or pulling anything heavier than ten pounds for twelve weeks. The addition of pushing and pulling – including luggage – meant this would essentially create a three month travel blackout for me during recovery (unless someone traveled with me to wrangle bags). But more importantly, the change in the length of recovery meant I couldn’t fit in the procedure before my family’s cross country move from UT to WV this summer.

But things have a way of coming together. While additional donors were evaluated and disqualified, and Cable’s health continued to decline, my family managed to make our move earlier than we had originally anticipated. That created a narrow window in which we could do the procedure and I could complete my recovery a few weeks before the annual OpenEd conference. We decided to do it on June 28.

Perhaps the most dramatic part of this entire process is what is called the staging surgery. The day before the actual transplant is to happen, they open up the recipient and look around to make sure the cancer hasn’t gotten outside the liver. If the cancer has spread beyond the liver, then they close the recipient up and everyone goes home. Even though you’ve done all this planning, and found a donor, and the donor qualified, and you’ve all traveled to the Mayo Clinic in Rochester, and you’ve all made arrangements with work and family to take care of kids and support you through recovery, the whole thing can be canceled at the very last minute. Mentally, it feels like the whole world revolves around the staging surgery. In some ways I suppose it does.

Cable’s staging surgery on the 27th confirmed that the cancer was still confined within the liver and we got the green light for the transplant to proceed. So, on the morning of the 28th, we did it! There is still a lot of recovering to do, and many hurdles yet to overcome, but everything is moving in the right direction.

Cable and I have both learned a lot during this process and committed to each other that we would do some reflecting and blogging. Here is some of what I’ve learned being a living liver donor.

1. I am, apparently, a cry baby. I’ve broken down in tears more times than I can count in the last month. Thinking about Cable and what he must be feeling as he waited for the staging surgery. Finding out he was working on a “Cable has one year left to live” Google doc (of course) in case the staging surgery went poorly, and hearing a little of what was in it. Thinking about the small, but non-zero, chance that something might happen that left my family without a dad for a while. The few moments I spent pondering whether or not to write letters to my kids in case something went wrong. (I didn’t. I couldn’t.) Finding out that both procedures went as planned and that everyone’s recovery was off on the right foot. Seeing my wife for the first time after surgery. Seeing Cable up and alert after his surgery. My feelings have been incredibly tender for a while now, and I expect they will continue to

2. I had no concept of how tired a human being can get. I’ve run half-marathons. I’ve hiked 16 miles with 8,000 feet of elevation change in a day. But nothing prepared me for the utter, indescribable exhaustion associated with liver regeneration. The majority of the regeneration process happens very aggressively during the first week after surgery, with the remainder happening more slowly over the next three weeks. That first week I was so tired I couldn’t watch TV because of the effort required to follow what was happening in movies I had seen a dozen times before. I was so tired I couldn’t control my thoughts well enough to clear my mind so I could sleep. As the week ended and I got back on a computer for the first time, the effort of pressing the keys on the keyboard down far enough to register was exhausting. I’m sure there are medical and other conditions that can make a person even more tired than I have been, but I gained a whole new appreciation of what was possible here.

3. I didn’t know I was capable of feeling so much gratitude. I thought my heart would explode. I couldn’t contain it all, but it kept pouring into me somehow. It was like putting a huge array of solar panels in orbit close around the sun – a seemingly infinite flow of power without the possibility of interruption. Whatever capacity I had to feel gratitude before has been stretched and expanded out in ways I didn’t know were possible. And I have also been reminded just how nourishing to the soul it is to feel deep gratitude. I don’t know that there’s anything better for you than to stop, count your blessings, and just spend time feeling grateful.

4. Finally, priorities. When you spend time pondering life, and death, and family, and what comes next, it has a way of bringing your priorities into focus. Things that seemed like they were so important just weeks before suddenly don’t matter in the slightest. I expected the donation process to impact me deeply personally, which it has, but I’ve been surprised at how it is impacting me professionally, too. I am much more clearly focused on the change I’m trying to create in the world and the work I’m doing in support of that change. And I’m done allowing myself to be distracted by critics who think they know better than me what change I should be trying to create or how I should be going about it.

I’ll close this post with a video. It’s one of my all-time favorites, and at this point it should surprise no one to learn that I’m crying again after rewatching it just now. This is “For Good” from the musical Wicked. If you don’t know the song, take a minute to review the wonderful lyrics. This specific recording is from a Kristin Chenoweth concert. She has pulled Sarah Horn from the audience to sing Elpheba’s part of the duet. There’s so much about this video that is amazing – the song itself, Kristin’s reactions to what a great singer Sarah is, and seeing Sarah’s pure, unadulterated joy at having her moment on stage with a singer who is clearly one of her heroes. Everything about this video is magical.

I’ve been changed for good by many people in my life, including Cable. I’m grateful for his example of humility in reaching out to ask for help. Asking for help can be incredibly difficult, but Cable has managed it with grace. I’m grateful for everything he’s taught me these past months.

Please take a few minutes to reflect on who those people are in your own life that have changed you for good, and then take a few more minutes to enjoy feeling the gratitude this exercise will fill you with. You’ll be glad you did.