Living Kidney Donation Reading List

If you are like I was, when considering donation you just cant get enough of reading about it. Below are some of my top choices.

Living Kidney Donation Reading List

Books:

Marsh, Abigail. The Fear Factor: How One Emotion Connects Altruists, Psychopaths and Everyone In-Between. Basic Books, 2017. I have heard and read Marsh’s story and her theories in various formats and I will say her research is fascinating. The basic idea is that the ability to recognize other’s fear, which is rooted in the amygdala, is missing in psychopaths and is present in greater degrees in altruists. The connection here to donation is in Marsh’s selection of altruists — she studied non-directed kidney donors. The science seems fairly solid but she is upfront about the fact that she has materialistic presuppositions that lead her to different places than a person of faith might end up at. I have a lot of thoughts on this book which I will likely get around to posting on at some point so stay tuned.

Mezrich, Joshua. When Death Becomes Life: Notes from a Transplant Surgeon. Harper, 2019. This is not a read for those with weak stomachs but is a fascinating and well-written book about the history of organ transplantation of all kinds. The stories, both the historical ones and those form the author’s own patients, are riveting.

Sytner, Ari. The Kidney Donor’s Journey: 100 Questions I Asked Before Donating My Kidney. 2016. A short book good for potential donors and for friends and family who may have questions about the risks of donation. Sytner is a rabbi and writes from his perspective which is a little different than mine but I still found a lot of points of commonality. A short and easy read. Free if you have Kindle Unlimited.

Websites about Donation:

Donor Care Network. The Donor Care Network uses the NKR’s system to create paired donations but aims for a higher level of care. Their lst of qualifying hospitals is smaller because their criteria are higher. I first began the process of donation by filling out a form on their website. I can’t honestly say if overall this made a difference relative to going directly through the NKR but my experience was a good one.

Living Donors Online has a long list of kidney donation stories as well as stories related to other kinds of donation and general information on donation.

National Kidney Registry (NKR). I did my donation through the NKR. They are the forerunners in matching paired donations to maximize transplants. I found the interview with its founder (see Donor to Donor under videos below) very interesting.

Us for Them. A Christian group promoting kidney donation, started by living donors. The videos of the founders’ story are moving and very well done.

Donor Stories:

There are so many kidney donation stories out there one can read (or hear or watch). These are some of my favorites.

Conversations with Living Organ Donors. This podcast only lasted a few episodes but the ones they did were quite good.

“Donating My Kidney at 19,” by Shelby Tacker. YouTube video. I wouldn’t normally advocate that one should donate so young but it is hard to argue with this young woman’s determination and sense of calling (she appears to be Christian). She tells her story well.

Cara’s experience as a non-directed donor

OK Solo, another non-directed donation story

Ray’s Story

My Kidney, God’s Path

Videos:

Donor to Donor. YouTube channel. Including an interview with Abigail Marsh (see her book above) and Garet Hil, founder of the NKR (also see above).

National Kidney Donation Organization (NKDO) 2020 Virtual Living Donor Advocacy Conference. On YouTube.

“Why Some People are More Altruistic Than Others,” by Abigail Marsh on Ted talks. For more detail, check out her book (above).

Theological Implications

Lewis, Robert L. “Don’t Bring Your Organs to Heaven Because Heaven Knows We Need Them Here: Theological Issues Surrounding Cadaver Organ Donation,” Boston University. At one point I went looking for articles on the ethics of organ donation from a Christian perspective. I didn’t find much. This series of articles by Lewis is pretty much it. The title, as you may guess, gives away that he is pro-donation. He does gives many denominational statements on donation which is useful.

Stats and Complications

“OPTN/SRTR 2018 Annual Data Report: Kidney,” by A. Hart, et. al. If you like stats, as I do, this is a great but long report to peruse. If the reading is too much, skip to the charts at the end.

“Risks of Living Kidney Donation,” by Krista Lentine, et.al. from Evidence Based Nephrology. A scientific article on the risks of living donation. I will admit that I found it a bit much to read but there is an abstract and some helpful graphics.

Changes in Kidney Function Follow [sic] Living Donor Nephrectomy,” Ngan Lam, et. al. Brief abstract with a nice graphic on how kidney function changes.

Testimony of Jane Zill from Organ Donor.gov. This is mostly a call for better follow-up.

“Life after Living Organ Donation Not Always Bright,” by David Wahlberg from The Wisconsin State Journal and “Lessons Learned: The Reality of Living Organ Donation,” by Donna Luebke from Narrative Inquiry in Bioethics (vol. 2, no. 1, spring 2012). These two articles tell Luebke’s story. I do think it is important to note that she donated a while ago and that she had an open procedure which is no longer the norm.

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