Ned Brooks on Coalition to Modify NOTA

Ned Brooks (about whom I've often blogged) is putting his eloquence and organizational skills to the task of increasing organ donation by allowing organ donors to be compensated. Below is a short video of an address he gave to the National Kidney Donation Organization (NKDO) which he founded, about his new effort, the Coalition to Modify NOTA.

 

Here's a copy of the email that came with the video:

To the NKDO Membership:   Thank you for your responses to the survey asking if NKDO should support the Coalition to Modify NOTA (CMN), formed by non-directed donors Ned Brooks, Elaine Perlman and Cody Maynard.   87% of our membership supports the mission statement of CMN as follows:   The Coalition to Modify NOTA (ModifyNOTA.org) is created in response to the inability of the current system to adequately address the crisis of kidney failure in the United States. The National Organ Transplant Act of 1984 prohibits the compensation of organ donors.   The current system of deceased donations and voluntary living donation is grossly inadequate to the task of completely ending the shortage of transplant kidneys and saving the lives of patients in kidney failure who are dying unnecessarily each year.  We believe that the solution to this crisis is to have the government compensate donors in a manner that is neither exploitative nor coercive. The Coalition to Modify NOTA seeks the modification of the National Organ Transplant Act to allow such government compensation.   Watch this presentation on the Coalition to Modify NOTA by Ned Brooks.   To sign your name in support of the Mission Statement, please go to Join the Coalition.   Kind regards,   Matt Cavanaugh, CEO and President

Modify NOTA: a new effort

 Ned Brooks, who has been a force in promoting living kidney donation, is turning his efforts towards a new organization, dedicated to modifying the National Organ Transplant Act (NOTA) of 1984, to allow some compensation of kidney donors.

Here's the organization's website:  Join the Coalition to Modify NOTA

The website starts off with a quote with which I'm in full agreement:

“It’s long past time to modify the 1984 National Organ Transplant Act.”   - Al Roth

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Recent related post:

Monday, July 10, 2023

Compensating kidney donors: a call to action by Brooks and Cavanaugh in the LA Times

Compensating kidney donors: a call to action by Brooks and Cavanaugh in the LA Times

 Here's a clarion call for compensation of living kidney donors, from two nondirected kidney donors.  It's not the first, and very likely not the last, given the difficulty of modifying the existing law.  But it makes the case very clearly (and proposes that a tax credit spread over ten years might be the way to move foreward).

Opinion: A single reform that could save 100,000 lives immediately BY NED BROOKS AND ML CAVANAUGH, JULY 9, 2023 

"Never in the field of public legislation has so much been lost by so many to one law, as Churchill might’ve put it. The National Organ Transplant Act of 1984 created the framework for the organ transplant system in the United States, and nearly 40 years later, the law is responsible for millions of needless deaths and trillions of wasted dollars. The Transplant Act requires modification, immediately.

"We’ve got skin in this game. We both donated our kidneys to strangers. Ned donated to someone who turned out to be a young mother of two children in 2015, which started a chain that helped an additional two recipients. And Matt donated at Walter Reed in 2021, after which his kidney went to a Seattleite, kicking off a chain that helped seven more recipients, the last of whom was back at Walter Reed.

"Ned founded, and Matt now leads, an organization that represents nearly 1,000 living donors

...

"eight years ago, when Ned donated, the number of living kidney donors was 6,000. With all the work we’ve done since, the number of living donors is still about 6,000 annually. In the United States, nearly 786,000 people suffer from end-stage kidney disease, more people than can fit in the 10 largest NFL stadiums combined.

...

"More Americans die of kidney disease than of breast or prostate cancer, and one in three of us is at risk. This illness is widespread, but what makes it worse is the staggering financial burden borne by everyone. The head of the National Kidney Foundation testified in March that Medicare spends an estimated $136 billion, nearly 25% of its expenditures, on the care of people with a kidney disease. Of that, $50 billion is spent on people with end-stage kidney disease, on par with the entire U.S. Marine Corps budget.

...

"The National Organ Transplant Act prohibits compensating kidney donors, which is strange in that in American society, it’s common to pay for plasma, bone marrow, hair, sperm, eggs and even surrogate pregnancies. We already pay to create and sustain life

...

"The ethical concerns regarding compensation are straightforward. Nobody wants to coerce or compel those in desperate financial straits to do something they would not have done otherwise. The challenge, then — until artificial or nonhuman animal substitutes are viable options — is to devise a compensation model that doesn’t exploit donors.

"Compensation models have been proposed in the past. A National Institutes of Health study listed some of the possibilities, including direct payment, indirect payment, “in kind” payment (free health insurance, for example) or expanded reimbursements. After much review, we come down strongly in support of indirect payment, specifically, a $100,000 refundable federal tax credit. The tax credit would be uniformly applied over a period of 10 years, in the amount of $10,000 a year for those who qualify and then become donors.

"This kind of compensation is certainly not a quick-cash scheme that would incentivize an act of desperation. Nor does it commoditize human body parts. Going forward, kidney donation might become partly opportunistic rather than mostly altruistic, as it is now. But would it be exploitative? Not at all."

...

Ned Brooks and ML Cavanaugh are living kidney donors, and Brooks is the founder of the Coalition to Modify NOTA.

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Here are all my posts that mention Ned Brooks, starting with this one:

Friday, February 26, 2016

A Freakonomics listener was inspired to become a non-directed kidney donor by the podcast on kidney exchange

Freakonomics replay and update on kidney exchange and organ donation

 Freakonomics Radio yesterday revisited some of their old podcasts about kidney exchange. In one, they interview me, and in another, they interview Ned Brooks, who listened to that interview and went on to become a non-directed kidney donor and to found an organization to support other kidney donors, the NKDO, National Kidney Donation Organization.  You can listen and/or read the transcript at this link:

EPISODE 209

Make Me a Match (Update)

"Sure, markets work well in general. But for some transactions — like school admissions and organ transplants — money alone can’t solve the problem. That’s when you need a market-design wizard like Al Roth. Plus: We hear from a listener who, inspired by this episode, made a remarkable decision.

"Last month, the federal government announced plans to modernize the U.S. organ-donation system. They want to speed up the process by which organ-transplant patients are matched with donated organs, and they also want to reduce racial inequities in the system. When we saw this news, we decided to go into our archive and put together the episode you’re about to hear. It’s a mashup of a 2015 episode, No. 209, called “Make Me a Match,” and a portion of a 2016 episode, No. 237, which includes a personal story from a listener who was inspired by that earlier episode to make a remarkable decision. All the relevant facts and figures have been updated. As always, thanks for listening."

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Here are my previous posts on Freakonomics episodes.

Continuous distribution of deceased donor organs for transplant: proposal and public comment

 Ned Brooks of the National Kidney Donor Organization (NKDO) writes that the comment period is soon ending for proposed changes in the way deceased donor organs are offered.

short videos here https://optn.transplant.hrsa.gov/policies-bylaws/a-closer-look/continuous-distribution/ and 

some additional background and opportunity to submit comments here:    https://optn.transplant.hrsa.gov/policies-bylaws/public-comment/continuous-distribution-of-kidneys-and-pancreata-committee-update/

His concern, and that of other comments visible at the site is whether the priority given to former living kidney donors is being diluted.  (The proposal isn't described in sufficient detail for me to form an opinion on this, or on a number of other matters.)

A living kidney donor podcast by Ned Brooks

 Here's a link at which you can hear Ned Brooks, on the latest episode of Donor Diaries. 

"Ned is a high-profile activist for living kidney donation and the founder of The National Kidney Donors Organization.  Ned’s appearance on Freakonomics podcast and his TEDx Talk on living kidney donation are often mentioned by living kidney donors as an early inspiration for their donation."  

https://www.donordiaries.com/episodes

Ned Brooks interviews me at the National Kidney Donor Organization virtual conference (video)

 For easy access, here's the video of my talk at the National Kidney Donor Organization virtual conference, about which I blogged this morning.  We talked about kidney exchange, global kidney exchange, and repugnant transactions...

National Kidney Donor Advocate Conference, on YouTube

 Here's an announcement I received from Ned Brooks, the founder of  NKDO, National Kidney Donation Organization (formerly Donor to Donor).  If I understand correctly, the different talks and interviews will be available at the link after first streaming in conference style, starting at 9am Pacific time. It includes a video of Ned interviewing me.

I'll update this post as necessary. 

"This Wednesday, October 21^st, NKDO, National Kidney Donation Organization (formerly Donor to Donor) will release the virtual National Kidney Donor Advocate Conference. This event is designed to give volunteer living donor advocates the information they need to be more effective advocates for living donation. Transplant industry experts across the country will be presenting to you and delivering invaluable advice about their area of expertise.

The conference will stream on our YouTube channel beginning at 12:00 noon Eastern this Wednesday. The conference will be in segments and accessed through the “playlist”, either streaming as one event or accessed at different points in the conference. The link is  https://www.youtube.com/channel/UCsoS-yavRQCVl7bwcjT2iCA , which will go live at noon Eastern on Wednesday.

- Have you ever wondered about the transplant surgeons who do the surgery? What they are thinking and what they would like you to know? Dr. Joshua Mezrich, transplant surgeon at UWMadison and author of “When Death Becomes Life: Notes from a Transplant Surgeon” talks about his experience with organ donors and recipients.

- Are you a living donor or a transplant recipient, or expecting to be one? Do you remember the experience of being evaluated at the transplant center and listening to all the information, and maybe feeling a little overwhelmed? Living Donor Coordinator Marian Charlton and Patient Coordinator Janet Hiller are two of the most respected voices in transplant, and they will tell you what they want you to know to better understand the process. Anyone who goes through this experience or has a loved one in transplant will want to see these segments.

- Living kidney donors deserve all protections available, from reimbursement for out-of-pocket costs and lost wages to medical coverage for medical issues that may arise months or years after donation. Garet Hil, founder and CEO of the National Kidney Registry, talks about the suite of protections available to living donors through Donor Shield.

-  Are you a kidney patient in need of a donor? Harvey Mysel, a two-time kidney recipient and founder and CEO of the Living Kidney Donor Network, talks about how to have your kidney donor find you.

- Professor Alvin Roth won the Nobel Prize in Economics for his work creating the algorithms that contributed to the creation of the “kidney chain”, a development that transformed kidney transplant procedures. Prof. Roth discusseshis work and the business known by the intriguing moniker of “repugnanttransactions.”

- All kidney patients will benefit by watching nephrologist Dr. David Serur talk about kidney disease and what every kidney patient and advocate needs to know to be properly informed about how to deal with renal disease. 

- Non-directed, or altruistic, donors are a rare breed, though we are trying to change that. No one knows the brain of the non-directed donor better than Professor Abigail Marsh, who has been studying non-directed donors for years. If you want to better understand why someone will happily donate a kidney to a stranger, this presentation will help answer that question.  Prof. Marsh is the author of “The Fear Factor: How One Emotion Connects Altruists, Psychopaths, and Everyone In-Between.”

- If you listen to podcasts, you are probably familiar with “Freakonomics” and its creator, Stephen Dubner. It was the Freakonomics interview with Prof. Roth that set Donor to Donor and NKDO into motion, and our interview with Mr. Dubner will interest anyone who understands “the power of the pod”.

- Jim Gleason is a heart transplant recipient and the president of TRIO, Transplant Recipients International Organization. Mr. Gleason is a motivational speaker who asks the question, “Are you a cookie monster?”

Here's the video of my video

Another kidney donor from the Freakonomics interview

Yesterday I got this cheerful email from Harry Huggins at Freakonomics, about another nondirected donor motivated to start a kidney exchange chain, after learning about them on Freakonomics:

"Hello Professor Roth,

I'm a producer at Freakonomics Radio. I just wanted to let you know that we've published a post on our blog about another listener inspired by your episode to donate a kidney. You can find it (the blog post, not the kidney) here: 

Another Kidney-Donation Story to Make You Smile

Hope all is well,

Harry Huggins
Managing Producer
Freakonomics Radio"

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I now know of several donors who heard the original 2015 Freakonomics story on kidney exchane (Make Me a Match (Ep. 209)). The first was Ned Brooks (who writes about it at the link), and whose web page/organization Donor to Donor speaks about others.

And here are all my posts that mention Freakonomics, many of them (but not all) related to kidney exchange.

One kidney donor's journey

I recently heard the following story, by email from a recent kidney donor, who has given me permission to share it. It's lightly edited to preserve her privacy and mine, but I can't resist noting that her first name is Hope.

"Dear Professor Roth,

"Seven weeks ago today, I donated a kidney to a stranger in Minnesota.  Mayo Clinic sent me his email address this afternoon, just in case I want to contact him.  I'm not sure yet if I want to initiate communication but I certainly can't stop thinking about it.  It made me think about the Freakonomics episode I heard three years ago that started everything.  You know the one...

"When I heard the episode, I knew right away I wanted to become a living kidney donor.  I was 49 at the time. I never had children and my life felt incomplete.  Moreover, I lost my mother to cancer after a long battle, when I was just 14 years old.  I daydreamed about helping a child who had a sick parent so she doesn't have to go through what I went through. 

"My wife's cousin needed a kidney shortly after the episode aired.  I asked her if it was ok if I stepped up.  I played her the Freakonomics episode and she approved.  I reached out to her cousin Rick.  It turns out a few people volunteered and he got a direct match.  I felt defeated, which sounds selfish after such good news.  Then I heard a follow up episode that united a donor with his recipient.  Stephen Dubner was crying... I was crying... I called Mayo Clinic the next morning and signed up for testing.

"The rest is a long story and I know you are a busy man so I'll skip most of it.  I ended up being part of a pair, instead of an altruistic donor.  There was a man who worked with my wife that needed a kidney.  He once saved her life with the Heimlich maneuver so it was pretty poetic that I could save his.  He received his kidney from a bridge donor and I gave mine to someone on the diseased donor list.  So I got to save two lives!  I'm doing great.  I went back to work a couple of weeks ago.  I have no regrets and I hope I can inspire others to do something selfless and extraordinary in their lifetime. 

"I hope others have written to you.  I'm sure you see the statistics and know the impact of what you created with paired kidney donation.  I just wanted to make sure you hear some personal stories.  Life changing stories..."

A subsequent email exchange clarified some details:

"Hi Al!  I did all of my testing in May of 2016 to be a non-directed donor. I tested positive for Valley Fever and had to wait 90 days to be retested. The 2nd test was negative and I was approved but I was getting married in October so we put a hold on the donation. Mark came into the picture after that. He didn’t know about paired donation. We got him to switch to Mayo and we became a pair. He had lots of complications so I had to wait a long time. When he was finally approved, so much time had passed that I had to do most of the testing all over again. It took awhile to find me a match because I’m AB+. 

So a false positive Valley Fever test got Mark a kidney. 

I met Mark the day of his surgery. My wife and I were the first faces he saw. He was there the day of mine. He brought me flowers and a card from his kids. 

My team at Mayo Clinic were there for me the whole time. There was never any pressure and changing from non-directed to paired was seamless. They never discussed Mark. He had his own team. I was allowed to chicken out at any time. But I’ve never been so sure of anything in my life."
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And here are my posts linking to the Freakonomics shows that gave people so much of Hope.

Thursday, June 18, 2015

Freakonomics podcast on Who Gets What and Why

Make Me a Match: A New Freakonomics Radio Episode

Friday, February 26, 2016

A Freakonomics listener was inspired to become a non-directed kidney donor by the podcast on kidney exchange

Ask Not What Your Podcast Can Do for You

and this one (from huffingtonpost.com):

Saturday, May 6, 2017

A non-directed kidney donor speaks about his experience (which started with a Freakonomics podcast)

Ned Brooks: Donating His Kidney was Life-Changing. For Him.

A non-directed kidney donor speaks about his experience (which started with a Freakonomics podcast)

Here's more on Ned Brooks, the non-directed donor who heard about kidney exchange chains on a Freakonomics podcast:

Ned Brooks: Donating His Kidney was Life-Changing. For Him

“The concept of leverage was absolutely the driver for me, “ recalls Ned. “The idea that my one wholly redundant kidney could impact multiple lives, not just the patients themselves but their children, their parents, was huge.”

And the idea of starting a kidney donation chain touched his competitive side: “How many lives could my kidney donation impact?”
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See my earlier post

Friday, February 26, 2016

A Freakonomics listener was inspired to become a non-directed kidney donor by the podcast on kidney exchange

A Freakonomics listener was inspired to become a non-directed kidney donor by the podcast on kidney exchange

In June, 2015, right around the time my book Who Gets What and Why was published, Steven Dubner and his team at Freakonomics published a podcast called Make Me a Match, in which he interviewed me and others about kidney exchange, among other things. Now, in a new podcast, Dubner interviews a listener named Ned Brooks who was inspired by that interview to become a non-directed kidney donor and start a kidney exchange chain. In fact, not only does Dubner interview the donor, he interviews the woman who received his kidney, and in fact introduces the two of them for the first time. Pretty dramatic stuff.

Here's the link to the podcast, where you can (both) listen to it and read the whole transcript.

Ask Not What Your Podcast Can Do for You, February 25, 2016 by Stephen J. Dubner

Below is the part of the transcript that has to do with kidney donation and transplantation. If you read it through, I predict you'll be moved (at one point Dubner says he's crying, so at least he was moved), and if you get to the end you'll find out about a new organization that Brooks has established to help find new donors for people who need them.

"Let me introduce you now to Ned Brooks.

DUBNER: Ok. Hello, Ned?

NED BROOKS: Stephen, how are you?

DUBNER: Hey! Great, how’re you? Nice to meet you.

BROOKS: Nice to hear you.

DUBNER: Thanks for doing this, the interview, but doing the actual deed.

BROOKS: It was a very easy thing to do.

Ned Brooks is 65 years old.

BROOKS: I live in Norwalk, Connecticut. I’m semi-retired after a couple of careers, on Wall Street and in real estate.

He’s been married for 34 years. Three grown children. One day last year, Brooks was in his car.

BROOKS: And we were listening to your podcast about Alvin Roth, the Nobel Prize winner in economics who created a model to trade indivisible items without the use of money. And I think he was talking about houses at the time, but it seems to work very well for the kidney chain as well.

The episode was called “Make Me a Match.” Al Roth was describing how he and others had created a series of algorithms that helped match people in need of a kidney transplant with potential donors

BROOKS: And I listen to the podcast with growing interest because what came through to me about the power of the kidney chain, as somebody with a business background, is the concept of leverage. That one altruistic donor — and an altruistic donor is someone who gives a kidney without having anybody particular in mind to receive it. And it provides a lot of options for the people who put these things together, to start a kidney chain. And that results in a sequence of transplants that can affect a lot of people.

DUBNER: Now, have you ever considered giving a kidney before then?

BROOKS: No, no I did not.

DUBNER: And what was it about, about the message from Al Roth in that podcast that either, kind of, alerted you? What did you learn, or what changed your mind that made you start to think about that, then?

BROOKS: Well, the concept that we have two kidneys and we only need one.

DUBNER: Now did you know that ahead of time, or not really?

BROOKS: Yes, I did know that much. What I did not know is all the benefits that accrues to one who donates a kidney. The process is lengthy in terms of the amount of testing that you go through to do so. But …

DUBNER: Now, you’re saying that the medical tests were the benefits?

BROOKS: Oh, absolutely.

DUBNER: I just want to clarify here.

BROOKS: Absolutely. Look, you get many thousands dollars of testing for free.

DUBNER: Can I just say something, Ned? I think you and I are fundamentally different people, because if I were going to get several thousands of dollars worth of something free I would want it to be, you know, golf, or something, fishing boat. Not medical testing, but tell me more about your great desire …

BROOKS: Well, you’re not 65, and knowing that all your organs are free of any contaminants is a very reassuring thing, actually.

Let me be clear. It wasn’t really all the free medical testing that made Brooks want to become a kidney donor.

BROOKS: I think this is something I have to do. It required some thought, discussion with my wife that day in the car. I spent one restless night, probably about three hours trying to understand what my own motivations were and if they were the right ones to be doing this. And once I put that to rest, then it was a very easy thing to do.

DUBNER: Did you decide immediately to become a non-directed donor? Meaning that your kidney would be available for anyone who needed it? Or, did you think about trying to help someone in particular?

BROOKS: As great as it would be to help someone in particular, I didn’t know anyone who needed a kidney. And in fact, the leverage comes from being an altruistic donor. You can’t start a kidney chain unless you’re altruistic about it.

DUBNER: Let’s say I need a kidney and my wife is willing to donate or someone else in my family is willing to donate, but they’re not a match. They’re not a physiological match for me. But they would donate a kidney of theirs to someone else who is a match. They then enter the chain, correct?

BROOKS: So, call them “Couple A.” And Couple B is in the same situation as is Couple C, D, down the line.

DUBNER: But then there is this wildcard, X, that’s you. This guy who comes in that doesn’t have anyone that needs one, that just wants to give. Does that make you much more valuable?

BROOKS: That makes me valuable because it allows the algorithm to maximize the length of the chain and kick it off. If you didn’t have the altruistic donor to start, you’d have to have a perfect match. 

DUBNER: Talk about the procedure, working with the hospital, and talk about how the relationship works so that you are not made to feel that you’re being pressured.

BROOKS: Sure. In my case, I had the operation done at New York-Presbyterian. And I chose New York-Presbyterian because they do a lot of these operations. And I think that with any surgery like this you want to go to a place that does a lot of them. And so I was very comfortable with their record. They’ve never lost a donor yet. They provide you with two advocates. And those advocates are there to protect your interest throughout the process. And you go in for testing, you do it through your advocate, you go in for psychological testing, physical testing. They want to make sure you are financially able to this, because, of course, you cannot be compensated for a kidney donation.

DUBNER: To what degree did they push back? In other words, to what degree did they try actively to discourage you or at least make you take a step back and think it through a little bit more?

BROOKS: They didn’t actively discourage me.  The psychiatrist probed quite a bit. But after I seemed to have satisfied her on the answers, that was the end of it.  What they will not do is they will not come after you to keep you coming to hospital for every procedure that needs to be done. In other words, they set the time and the date for your next appointment, and they won’t call you. It’s up to you to make sure that you’re there.

DUBNER: Oh that’s interesting, yeah. And at no point did they catch on to the fact that you were just in it for the free medical testing?

BROOKS: Actually, actually yes. The doctor I spoke with there said, “This is a little-known secret, but the testing is so good that everyone should at least start out to be a kidney donor and find out how their tests go.”

DUBNER:  That is a secret that I’m guessing they really don’t want broadcast. Because I can see an army of senior citizens flooding in for their tests saying, “You know, I think I’m going to hang on to this — to the other kidney.”  And then talk to me about your family’s response.  Was everyone on board?

BROOKS: My wife was supportive. As I said, I have three children. One was very supportive, one was skeptical, and one was opposed. And I guess that’s what you get when you get three children. But the skeptical one, and the one who was opposed, turned around once they felt like they got a lot more facts about it.  It’s a very safe procedure relative to surgery, in general. And once they understood that, then I think their reservations went away.

DUBNER:  I understand you wrote a letter to your family when you had gotten pretty far along in the process. By then you’d undergone some of the testing?

BROOKS: Yes, yes.

DUBNER: Do you happen to have that letter handy?

BROOKS: Actually, I do have it here.

DUBNER:  If you don’t mind giving that a read, that would be great.

BROOKS: Sure. This is a letter that I wrote to my family when I realized that it was what I wanted to do, and I wanted to inform them all at the same time. So, I sent them an email and it goes like this:

All, as you have commented upon, I have had a number of medical tests over the summer. I did not fully answer your questions about those because I wanted to wait until I had cleared all the tests. I’m happy to report that I’m about as healthy as is possible for a 65-year-old male to be.  

Back in the spring, I was listening to a Freakonomics podcast about a man who won the Nobel Prize in economics for constructing a model of a market to trade indivisible objects without the use of money. He was thinking about houses, but it turns out that the model works very well for other things. His work had been used to create an extensive network for the matching of kidney donors and recipients. The more I listened to the podcast, the more fascinated I became as I learned that just one altruistic donor — a person who donates without a targeted recipient — can launch a chain of kidney transplants that can number as high as 43.

I spoke with the National Kidney Foundation and learned more about the process. I registered as a potential donor and began extensive series of tests at New York-Presbyterian, which have now concluded with me be being accepted as a kidney donor.

So why am I doing this? Many of our friends and acquaintances have had their share of health challenges in recent years. It is mightily frustrating to watch the pain and suffering and be unable to give any help. I, on the other hand, am in perfect health. I have no need for my second kidney, and I appreciate that my actions may greatly benefit the lives of not just the recipients of those kidneys but their entire families. Without it being too much of a stretch, my one wholly redundant organ can potentially change and improve the lives of hundreds of people.

There were 5,355 kidney transplants from living donors last year, and there are over 100,000 people on the wait list right now for a kidney.  The operation is several hours. They start about 3 a.m. in order to catch the morning flights around the country, particularly Los Angeles. L.A. does more transplants than any place in the country, and New York-Presbyterian does the most east of the Mississippi. They’ll have me walking that same day, and I should stay two days in the hospital. I’ll be uncomfortable for two weeks, and fully recovered after four weeks. The operation is laparoscopic, with a single incision in the abdomen. I’ve been working hard with my trainer on my abs.

My advocate tells me that because I am blood type O, a universal donor and an altruistic donor, I will light up computer screens across the country when they list me tomorrow. I am happy to report that Mom is fully on board with this. I could go on for a while, but I think you have the picture. If you have interest in hearing the podcast that inspired me, you can find it here and the short Freakonomics blog on the subject here. Let me know if you have any questions.

Love you all, Dad.

The left kidney that Brooks donated wound up launching a three-recipient chain.

BROOKS: I knew nothing about my recipient until the day of the surgery when I was told that it was a 37-year-old female in Denver area and that she was very, very sick and unlikely to find a donor anytime soon. And that this was a real one-in-a-million match.

DUBNER: Did you know anything about the cause of her illness? And would that have mattered to you if you did know?

BROOKS: No, I had no idea.

DUBNER: Look, you’re not getting paid; you might get thanked, you might not get thanked. You’re doing this for your own set of reasons. Was it important to you that that person appreciate those reasons, or appreciate you? Or did it not really work that way for you?

BROOKS: This is where the leverage comes in. They ask that same question in the initial stages in a little bit different way. What they ask is, “If something happens to your recipient, how upset are you going to be?” Quite frankly, my answer was, “This is multiple people who are getting a transplant because of what I’m doing. And if one of them doesn’t work out, I’m terribly sorry, but it’s going to change the lives for all the others.”

DUBNER: So Ned, you learned a little bit about your recipient, and from what I understand, you’ve been in contact — you’ve received a letter from her — is that right? Expressing her thanks?

BROOKS: The way this works is I go through my advocate at the hospital writing a letter to the recipient that goes through the advocate at her hospital to her. Then if she chooses to do so, she comes back to me with whatever she wants to say. And then through the advocates I go back and disclose my identification, then she does that back to me if she wants to. And that’s the way it worked. And we’ve exchanged emails. And I’ve gotten Christmas cards and such from her family, and so forth.

DUBNER: So you haven’t met with her or spoken with her by phone?

BROOKS: I have not met or spoken to her.

DUBNER: OK so, here’s the story. I believe that if technology has served us well that she’s on the other line right now. Danielle from Centennial, Colorado.

BROOKS: Oh my god!  I’ve not spoken to her yet! This would be great.

DUBNER: Danielle, can you hear us? This is Stephen Dubner.

DANIELLE SHAFFER:  Hi, I can hear you guys.

BROOKS: It’s Ned.

SHAFFER:  Hi Ned.

BROOKS: Hi.  

SHAFFER: How are you doing?

BROOKS: I’m doing great.

SHAFFER:  Good, good. This is exciting.

BROOKS: This is very exciting. It’s great to hear your voice. How are you feeling?

SHAFFER:  I’m doing good! I’m feeling real good. Lately it’s been a struggle since the surgery but I’m doing good. A lot better than I was.

BROOKS: Are you on lots of meds?

SHAFFER:  Yeah, unfortunately, I’ll have to be on a ton of meds for probably the rest of my life.  

DUBNER: Hey Danielle, this is Stephen. Can you tell us a bit about what led to your need for the kidney?

SHAFFER: Sure, sure. It all started October 8, 2014. I had received a call from my doctor saying that my blood work had come back — I’d gone to my regular doctor just because I was having a severe headache that wouldn’t go away. And so they did some blood work, they called me the next day and said, “You need to get to the hospital immediately.” They were telling me creatinine was at a 12 and I had no idea what that was. And so, I went to the hospital and was immediately hospitalized for the next 15 days, getting biopsies and MRIs and plasma freezes and dialysis and getting all these tubes put in my neck and chest. It just all happened so fast. To this day, they still don’t have any reason. It happened three weeks after I had my son but they don’t want to associate it to that. So they really have no answers of why this all happened to me.

DUBNER: And what was your, a) I guess, prognosis? Did they think that you would survive? And what was your prognosis for getting a donated kidney?

SHAFFER: Well, when I was hospitalized and they had no answers, and they were functioning a small part, but they said that they were failing. But they had hope — since they really had no idea what was going on with me — that they would kind of kick back in and restart themselves. So we kind of just waited and I started dialysis and everything. And while we were waiting for those next couple months, I actually tried acupuncture for, you know, organ treatment, specifically for that. You know, I was trying everything. And I said, you know what, I’m not going to wait any longer for them to restart. I better get on this transplant list now. So, come January of 2015, I started the process of getting on the transplant list. And starting there.

DUBNER: And what were you told about how long that would likely take you to get you a donated kidney?

SHAFFER: Well, it came back that I had antibodies in my blood from blood transfusions that I had during the hospitalization, and from having children they said I had created all these antibodies. So it made me a very rare match for  — I wasn’t a match to any of my family and so they said because of my rare antibodies I could possibly be on the list five or six years. So that’s the kind of range they gave me back in January of 2015. That, I was looking at five-to-six years being on dialysis.

DUBNER: Wow. How long was it before you heard that there was a donor?

SHAFFER: Well, it was probably come May of 2015 that I started getting word. Me and my father, we decided since I was having such a hard time and nobody in my family matched with me, my father really wanted to donate on my behalf. So we heard about the paired-donor program through the hospital and he wanted to donate his kidney on my behalf. So, it was probably around May of 2015 that we started the chain process. I had several chains lined up throughout the summer of 2015 but it kept falling through due to scheduling with some part of the chain — it kept falling through. So I had many chains lined up throughout the summer, and it was finally in August that we found — I guess Ned was matched to me, and we got the surgery date of September 22, and it kind of just happened really quickly from there.

DUBNER: Way to go, Ned.

BROOKS: Thanks.

DUBNER: What’s it feel like for you, Ned, hearing Danielle talk now? She’s obviously in a much better situation today with your kidney in her than she would be without. So what’s that feel like to hear her on the other end of the line?

BROOKS: It’s emotionally very powerful. It means a lot. A great deal.

SHAFFER: Yeah, it was a real struggle going through dialysis in the last year. I had to do four hours of treatment three days a week. So basically it took 15 hours out of my time every week. And I would go into a dialysis center. And, the first thing you do is you get checked in and they do your blood pressure, your weight, your temperature. They go through all your symptoms that you’re feeling. There’s really no privacy when they’re doing that — I mean, the next patient is five feet from you in their chair, and you’re talking about all of your bodily functions that are not going well for you with all the medications you’re taking and everything and it takes away a little bit of your integrity having to do that so publicly. And then, just to sit there for four hours doing nothing. I can’t get up, I can’t move. My blood is just sitting there, you’re watching your blood go through this machine and it’s really, really depressing. And, it was hard for me. I mean, I cried the first couple times just because I would sit there and I’d look around and I was the youngest, you know obviously, in the whole building. I was 37 years old. And I was the only one driving myself there. It’s just a really hard and depressing time to spend in your day. It was really hard for me to do because I have two small children as well.  

DUBNER: It’s remarkable. You say you were crying then. Now you sound so strong. Ned’s on the other line blubbering there. I’m on the border, holding it together. So…

SHAFFER:  It’s emotional every time I talk about my story too, so.

DUBNER: I’m curious, you said that your dad had entered the donor chain. Did he end up giving a kidney, and if so does he know who the recipient was?

SHAFFER: He ended up giving his kidney. And all we really know is that it went to Connecticut over there where Ned is, and we have not heard from the recipients on that end.

DUBNER: I have a copy of the letter that you wrote to your donor. It’s unclear to me whether you knew exactly who Ned was at this time. It begins, “To my wonderful kidney donor, I don’t even know where to begin.” And I’ve already started to cry. Sorry. I have nothing to do with either of you and I’m crying. OK. So, but then, toward the end, you write, “Just to let you know, your kidney is doing awesome, and I’m already getting my energy back.” Danielle, what’s it like to have this guy Ned’s kidney inside of you? Do you feel whole again? Do you feel different?  

SHAFFER: You know, it was amazing because the very next day after surgery, I felt incredible. I felt 100 percent different. I didn’t feel any of the symptoms that I was having before with the illness and the nausea and the anxiety and everything I was going through. I immediately felt better. My body felt better, and yeah. I was eating and drinking the foods and liquids I was restricted to for so long, and it’s just — I do have the energy again. It’s amazing how much better I feel. And I don’t know if he had any food habits that I’ve picked up, but.

BROOKS: How do you feel about single-malt scotch?

SHAFFER:  You know, I haven’t had the craving for any scotch. It is funny because we joke about that with my dad because he’s a single-malt scotch drinker too, and we say, “Oh, that person’s probably craving it now.”

DUBNER: Well, Danielle, I’m glad you’re doing better and I hope you continue to do even better.

SHAFFER: Yes, thank you so much. And Ned, thank you so much for everything you’ve done for me and my family.

BROOKS: No need to thank me anymore. Thank you for being such a great recipient, and we’ll be in touch.

SHAFFER:  Yes, we will. Thank you.

DUBNER: Danielle, thanks for jumping on the phone with us. Bye bye.

SHAFFER: Alright bye guys.

DUBNER: Bye. Well, Ned, how do you feel now? See what you’ve done now?

BROOKS: Boy, I was shaking in here. This is really something. She’s a great person.

DUBNER: Well, I know you didn’t do it for the thanks, but thanks!

BROOKS: My pleasure.

Ned Brooks, inspired by his own experience — and the huge need for more kidney donations — is starting an organization to help build more altruistic kidney-donor chains. It’s called Donor to Donor."

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