One thing that I have been learning a lot about this month is how to leverage my donation experience to benefit the maximum number of people. At first glance, it seemed to me that the best way to do this would to be to kick off the longest paired kidney chain possible. It turns out that there are a lot more factors involved, and there’s a lot of ways to maximize a donation other than chasing the longest possible chain.
The first thing I noticed was that the long chains resulting in 20+ donations occur when transplant centers work together to create a large pool of donor/recipient pairs looking for a swap. So in other words, multiple transplant centers all over the country pool their transplant waiting lists to create a large pool/extra long list that would maximize the possibility of 20+ matches existing in a single pool. Transplants and kidney swapping can occur across state borders, and have the capacity to connect more than 40+ people in 1 chain. Pretty remarkable. If you are waiting for a kidney transplant, and have a friend or family member who is willing to donate to a stranger in exchange for you getting somebody else’s kidney (since they are not a suitable match for you), then this model works to your advantage. It provides more options, and potential for a higher quality match. These chains are logistically complex, and are actually several chains that occur over weeks or months at a time. A bridge donor connects the end of 1 chain segment to the start of a 2nd chain segment. It looks like this. Note that these are 2 or more chain segments that at the end of the day are called 1 single chain. These segments make up the record breaking kidney chains that we see on the news from time to time.
Some hospitals, such as Northwestern, don’t participate in chains like this. They keep their chains in house, and do them all at once. Such is the case with my 5-way chain that is in the works. Besides keeping all transplants in the same hospital, the other major difference is that the last person to get a kidney comes off the donor waiting list, and does not start a second chain segment. So with this method, my chain segment starts and ends all in 1 day, and has the end result of somebody coming of the kidney waiting list.
The theory behind the first chain that involves multiple segments at first glance seems the obvious way to go if your goal is to maximize your gift, however after a lot of research and talking to a lot of people, I can see that there are pros and cons to both methods. Here is a bedtime read if you want a deeper understanding of the topic.
My nephrologist, Dr. Friedewald spent over a half hour explaining to me why he likes the second system that Northwestern employs over the first system which is best known through the National Kidney Registry. One great thing about this particular nephrologist is his background in organ allocation. In 2013 he completed a two-year term as chair of the United Network for Organ Sharing (UNOS) Kidney Committee during which time he led the effort to substantially revise the national kidney allocation policy for the first time in several decades. He has also chaired the UNOS Committee for Kidney Paired Donation, charged with creating a unified, national kidney paired donation system. He knows his stuff and I feel very comfortable with the concept of keeping the chain “in-house,” even though the large nationwide pool seemed like a better idea. It was actually AFTER this long conversation that he shared with me that they had a 5-person chain lined up already anyway. I appreciated his approach in educating me before sharing that news.
After that conversation, I started thinking about what my chain will be like; who will be in my chain, and will I get to meet them? Only then did it occur to me that I am not starting this chain. I wouldn’t be donating my kidney had I not been impacted by my dad getting a liver transplant 5 years ago. I doubt that transplant would be my passion today without that experience in my life. I think it’s more appropriate to name the deceased donor who gave my dad a liver the first person in my chain. I am just continuing the next segment of his chain. And the great part? Just like in that first diagram that looked romantic because it was potentially never-ending with multiple segments, my chain has the capacity to be never-ending too. My donation is part of a much bigger picture driving change in the we think about our spares. My kidney family on some level, in some way, will impact others and have the end effect of making living donation more mainstream than it is today. The people we inspire continue the next “segment” of my chain. A ripple effect has more power than a single chain.
Any takers out there yet?