What happens when a transplant surgeon, a Nobel Prize-winning economist, and a willingness to trust strangers come together? A revolution in kidney donation that has saved 20,000 lives and counting.
Meet Dr. Michael Rees and Sue Rees, the power couple behind the Alliance for Paired Kidney Donation. In this captivating first installment of our two-part season finale, we journey back to 2007 when kidney paired exchange was in its infancy and most surgeons believed all transplant surgeries had to happen simultaneously to prevent donors from backing out.
Dr. Rees takes us behind the scenes of his radical experiment: what if we trusted donors to follow through on their promises even after their loved ones received kidneys? The medical establishment warned this trust-based approach could collapse the entire system. Undeterred, Mike vetted the first chain participant over a steak dinner, separated surgeries by weeks instead of performing them simultaneously, and created what would become what is now a common practice- Non‑Simultaneous Extended Altruistic-Donor chains.
Sue shares the heartbreaking reality that confronted her as a transplant coordinator: watching patients remain on dialysis despite having willing but incompatible donors.
Through their pioneering work with the Alliance's sophisticated matching algorithm, the Rees’ have transformed how we think about organ donation, proving that human goodness and trust can overcome medical skepticism and logistical challenges.
Whether you're curious about organ donation, inspired by medical innovation, or simply love stories of human connection, this episode reminds us that our differences—even incompatible blood types—can ultimately save each other's lives.
SHOW LINKS:
Alliance for Paired Kidney Donation
New England Journal of Medicine Article
People Magazine Article
Donor Diaries Website
Donor Diaries on Facebook
GiftWorks Website
Connect with Laurie Lee
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
Welcome to Donor Diaries, a podcast that explores
how people are changing livesthrough the powerful act of
living donation.
Tune in to discover howkindness, love and simple acts
of giving are transforming livesevery day.
(00:36):
Hello and welcome back.
Today's episode kicks off aspecial two-part series to wrap
up Season 3 of Donor Diarieswith two remarkable guests, Dr
Michael Reese and Sue Reese fromthe Alliance for Paired Kidney
Donation, also known as APKD orjust the Alliance.
(00:57):
You'll hear us use all threenames throughout these episodes,
so now you're in the know.
I'm actually on site for thisinterview at the Alliance
headquarters in Perrysburg, Ohio, which gave us a chance to sit
down in person for thisconversation, which was extra
special.
Let me share a little bit aboutthis power couple with you.
Dr Mike Reese is a transplantsurgeon, innovator and founder
(01:19):
of the Alliance.
He's been at the forefront ofpaired kidney exchange for
decades and he's the pioneerbehind the first
non-simultaneous, altruistickidney donor chain, which
revolutionized how transplantchains work.
Today, Sue Reese currentlyserves as the Alliance's chief
operating officer, educator andstrategist, deeply committed to
(01:46):
removing the obstacles thatstand in the way of donation and
transplantation, believing thateverybody deserves a second
chance.
In part one, I talk with bothMike and Sue about the early
years of kidney exchange, whatit was like to be a pioneer in
the field, and how they builttrust with donors to facilitate
the very first chains.
Part two is a focusconversation with Sue where we
explore donor protect, a set ofresources and safety nets that
(02:09):
help make living donation moreaccessible.
If you're a current orpotential donor, these are
protections you'll want to knowabout and we'll walk you through
them one by one.
And why is this a two-partspecial, you ask?
Because our original recordingwas dramatically interrupted by
a thunderstorm that sounded morelike a tornado once it hit the
mic.
So Sue talking about how safeit was to be a donor didn't
(02:33):
quite land the same way, withsirens in the background.
So I'm so excited to share thisdouble episode with you.
Let's hop in.
Well, welcome to Donor Diaries.
Thank you so much for being myguest today, Mike and Sue.
Speaker 2 (02:46):
Our pleasure.
Speaker 1 (02:47):
Thank you for having us.
So to get started, can you tellus what is the Alliance for
Paired Kidney Donation?
Speaker 3 (02:55):
The Alliance for Paired Kidney Donation.
It's a registry that we foundedin 2006 to help individuals
that are suffering from kidneydisease have a willing but
incompatible donor be matched upwith somebody in the same
situation.
Speaker 1 (03:10):
How do you, what do you do with the two with
incompatible donor?
Speaker 3 (03:12):
recipient pairs.
So good question.
So we work with over 50transplant centers in the United
States and we have apartnership with these
transplant centers.
They're well-educated on pairedexchange and what they do is
put their incompatible pairsinto our database.
And, behind the scenes, whatthe APKD does is we figure out
(03:35):
with our software system that weoptimize the match and find the
best match for that recipient,so we pair them up.
Speaker 1 (03:46):
And what makes the Alliance different from other
organizations in the transplantspace that are doing similar
types of work?
Speaker 2 (03:52):
Well, I think what's unique about the Alliance for
Paired Kidney Donation is thatit was started by a transplant
surgeon to help transplantcenters deliver the concept of
paired donation for theirpatients in a way that served
everybody the best possible way.
The focus was really how can wemaximize this beautiful gift of
(04:14):
kidney paired donation so thateverybody wins.
That beautiful gift is thisamazing algorithm at the center,
built by a guy named Alvin Roth, who won the Nobel Prize in
Economics in part for this thing, that basically says okay, all
these people can match, butwhile there might be a million
(04:35):
ways that we could match people,we have a limited number of
people in the pool and the donorcan only give away one kidney,
and a person who needs can onlyreceive one kidney.
And so, while there might be amillion possibilities, you have
to find the one that ultimatelygives the best possible solution
to the most people, and that'sreally what the APKD delivers
(05:00):
for the United States.
Speaker 1 (05:02):
By the way, when I interviewed Al and I asked him
who he admired most intransplant, he said it was you.
Speaker 2 (05:08):
That's very kind of him.
Well, the feeling is mutual.
Speaker 1 (05:12):
How did the two of you get together?
Speaker 2 (05:14):
Another guy that's done a lot to help people with
end-stage organ disease is BobMontgomery.
Bob helped start Pear Dondonation along with a guy named
Lloyd Ratner.
Lloyd Ratner, I think, is themost innovative guy in our
generation in transplantation.
He started laparoscopicdonation.
He started transplanting peoplebecause they had antibodies
(05:38):
that stopped the transplant andfiguring out how to go through
that.
And then he had this big poolof people that didn't match and
he came up with the idea ofpaired donation.
So it was really.
Lloyd was one of the real earlyguys and at the time he was a
faculty member with Bob at JohnsHopkins and Bob went on to
really be the guy who figuredout how to do this antibody
(05:59):
stuff and really became one ofthe world's leaders in that but
also in pair donation.
So Bob in the early daystransplanted somebody who had
wealth and who was very gratefulfor what had happened and said
Bob, I'd like to give you a giftand I'd like you to create a
meeting of the people who areinterested.
And this is like 2003,.
(06:21):
So pair donation hardly existed.
It was just starting and Bobknew all the players who were
trying to make this happen inthe United States and put
together a meeting in Chicago atsome hotel I don't remember,
but I remember the lobby.
And I was sitting there in thelobby and this booming bass
(06:42):
voice said Hi, my name's Al Roth, I'm an economist at Harvard
and I think I can help you andyour dad do a better job with
your kidney exchange.
And I'm like oh, what does aneconomist know about health
stuff?
Economist man, you just worryabout money, right?
So to me, naive guy that I wasback then, I didn't understand
(07:06):
economics.
It's really about all humaninteractions and Al actually
does not study.
He specifically doesn't studymarketplaces where people can
use money, because he wants tostudy the marketplace, not the
money.
I had no clue that that evenexisted.
So back then for me there wasthis guy named Alan Greenspan
(07:27):
who was, I don't know, the headof the Federal Reserve, and
that's who I thought economistswere.
So I'm looking at AlanGreenspan not Al Roth guy, who's
going to go on to win the NobelPrize in market design and I'm
looking at him like, what do youcare about kidneys?
But I'm from Flint, michigan,and my mom taught me to be nice,
(07:49):
so I sat down on a bench therein the lobby with this economist
guy and I listened to what hehad to say and 90% of it went
over my head.
My dad and I at the time werewriting software.
My dad actually wrote theworld's first software that let
transplant centers put data inover the Internet and match
people together, and we had avery simplistic view because I
(08:10):
was the guy designing it.
Speaker 1 (08:11):
Was he a computer guy ?
Was he a doctor?
Speaker 2 (08:14):
He was a software computer programmer.
Speaker 1 (08:17):
That's a convenient pair, it was.
Speaker 2 (08:19):
Absolutely so.
I'm really grateful to my dadfor for making that possible.
That by itself is a wholenother story.
So my my dad was had built thesoftware designed by me, and the
way my brain worked was we'vegot all these people who have
loved ones that want to donate.
What we'll do is we'll draw aline from one donor to one
(08:44):
recipient.
We'll do is we'll draw a linefrom one donor to one recipient
and then we'll associate a scoreon how good of a match that was
for that recipient.
And then we'll take all thoselines, that where the donors can
give, and we'll just rank,order them and we'll take the
best one.
And we are only thinking aboutdoing two-way swaps.
So we had two lines, one fromone pair to another and back, so
(09:07):
we'd have to add up the twolines for anybody that could do
a two-way swap and then the onethat scored the most.
We do, and if there was anotherone we could do, we do that.
Speaker 1 (09:17):
Mm-hmm.
Speaker 2 (09:19):
And what Al was trying to explain to me that day
was that I was missing the factthat if you had four pairs and
one could give to two and onecould give to three and two
could give to four and fourcould give to two, but the best
(09:39):
match was one giving to two andtwo giving back to one.
You would transplant 1 and 2,but you wouldn't transplant 3
and 4.
And the score of 1 giving to 2would be the highest 2-way that
you could do.
But if you were smart about it,you could figure out that 3
could give to 4 and 4 could giveback to 3 and 1 could give to 3
(10:00):
and 2 could give to 4.
And you wouldn't do one and two, because that was the highest
scoring one, but rather you'd dotwo and four and one and three
and you'd help four people andthe total score of helping four
people would be higher than thescore of one and two getting a
transplant.
So you'd score more points andyou'd help more people.
Speaker 1 (10:20):
I just pictured you guys.
But is this what your pillowtalk is like at night?
Speaker 3 (10:26):
Unfortunately sometimes yes.
Speaker 1 (10:30):
I love the picture of Al Roth coming into the hotel
and saying hello, I'm Al Rothand you guys making contact
there.
Sue, how did you come into theAlliance and play into this?
Speaker 3 (10:41):
So I started out as a transplant coordinator at the
Medical College of Ohio, andthat was in 2001.
And when we would have anindividual come in with kidney
failure into our clinic withtheir loved one who wanted to
donate to them, we'd have to sayI'm sorry, you're not
compatible, and they would haveto go back in and remain on
(11:04):
dialysis.
Well, laurie, you know thatevery month and every treatment
that you're on dialysis, youhave a higher chance of a
complication and a 20% of dyingthe first year on dialysis.
It was heartbreaking, and Mikebrought home the files from.
He brought home this idea thatlike, hey, what do you think if
(11:25):
we could actually take the Sue'sand her dad's that have kidney
failure and match them up withsomebody else in clinic?
Let's stop turning people awayfrom our clinic, let's find a
way to make this happen.
Well, in 2001, it wasn't legalto give your kidney to a
stranger.
In 2007, the Charlie NorwoodAct passed, so then we were
(11:48):
allowed to give a kidney to astranger.
It wasn't illegal, and one ofour first exchanges happened
within the walls of Ohio and Iwas blessed to be a part of.
We had a son who wanted to givehis mother a kidney, but since
she was pregnant with him andwhen she was developing that
child inside of her, she wascreating antibodies against the
(12:12):
child.
That wasn't her, it was not thechild, but it was the father.
I don't know if you know this,but about 70% of women that have
kidney failure, their child ortheir spouse cannot give them a
kidney Because of the antibodies.
Because of the antibodies.
I didn't know that.
Yeah, wow, it's fascinating,right?
So here we are.
(12:32):
I have kidney failure, justlike this mother in my clinic.
My son wants to give me akidney, but we can't.
So what do you do?
And prior to 2007, I'd have toremain on dialysis.
Then we had a pair inCincinnati who a wife wanted to
give to her husband, but theyweren't ABO compatible, and it
(12:54):
was our system that found thatthe wife could give to the
mother in Toledo and that theson could give to the husband in
Cincinnati.
Speaker 1 (13:01):
So this was the computer system that you made
with your dad, mike, that youput these people in and you
started to see where the linesconnected donor and recipient
pairs.
What was that like to see thatfirst connection be?
Speaker 3 (13:13):
made Emotional, because kidney disease isn't
just a single disease for oneindividual.
It affects the families, itaffects society.
I mean, people are forced toremain on dialysis because we
don't have enough kidneys.
And I think that's what's soimportant about your movement,
(13:38):
this podcast, what we're doingat the Alliance for Paired
Kidney Donation.
More than ever do we needpeople to the Alliance for
Paired Kidney Donation.
More than ever do we needpeople to come together for
humanity.
Right, we do.
We are finding our differencesare saving each other's life.
And it doesn't matter whereyou're located in the world.
It doesn't matter whatpolitical views you have, it
(13:59):
doesn't matter what color youare or where you live views you
have.
It doesn't matter what coloryou are or where you live.
Speaker 1 (14:10):
We need to come together to save lives.
We do, and I love that you guyssee that.
And it's one of the things Ilove about you and Mike is your
humanness and that you talkabout this so frequently.
Thank you for being thosepeople, thank you.
So last night I got to meet thefirst non-directed donor in
Ohio, dusty, and the man whostarted the first kidney chain,
matt.
Can you tell us the story aboutthe first chain and we haven't
(14:34):
been doing chains for that long.
I'd love to hear the behind thescenes story about how that one
came about, because that's alittle bit different than doing
the paired exchange that youwere just talking about, sue.
Speaker 3 (14:43):
Absolutely, and I'm going to let Mike talk about
this because it's such a greatstory of how he vetted, like how
do you trust someone to pay itforward?
Speaker 1 (14:53):
Right.
Speaker 3 (14:53):
Right, and that's you .
Find a guy like Matt, right.
Right, I mean, matt is just agood human and said hey, I know
people are suffering, people aredying and they're losing their
loved ones.
Take my kidney, give it tosomebody.
And it was Mike and Al thatcame up with the concept of well
, what if we could give Matt'skidney to somebody and then
(15:15):
their loved one pays it forward?
Right, that's a big trust.
If Matt gives his kidney toBarb, like he did, what if Ron
reneged?
Speaker 1 (15:24):
Right, which is actually something I don't worry
about.
Is it something you worry about?
Not?
Speaker 3 (15:29):
anymore.
But when we thought of thisconcept we got a lot of pushback
.
Really, you're going to do thisBecause Barb has an
incompatible donor.
What if the next person in linewhich Ron was going to give to
Angie?
What if Ron said, hey, my lovedone got a kidney, yeah, I'm out
?
And then Angie, 33 years old,suffering on dialysis since the
(15:54):
age of 18, didn't get a kidney.
Where is she left in the system?
So this is a great story forMike to tell, because it's
really about trust.
Speaker 2 (16:07):
So when we had this idea, remember my dad and I had
written software that lets youdo two-way swaps.
So it's 2006.
We were doing two-way swaps andpeople were doing three-way
swaps and four-way swaps.
Two-way swaps and people weredoing three-way swaps and
four-way swaps, and I thinkJohns Hopkins and Bob Montgomery
and his group had done asix-way swap and the only way
(16:29):
they could do it was to do it ona Saturday when the operating
rooms weren't being used,because to do a six-way swap,
you need 12 operating rooms, youneed six donors and six
recipients, you need all thesurgeons.
It's a big deal and mosthospitals couldn't give up 12
operating rooms.
Speaker 1 (16:47):
So back at the beginning they were doing all of
these surgeries at once for asix-way swap.
Speaker 2 (16:51):
That's right, and the reason they did them all at
once is let's make it simple,let's just have a two-way swap.
So let's have it be you and me,lori.
So, I love somebody who wantedto give them a kidney.
You love somebody who wanted togive them a kidney.
We're the donors me, lori.
So I love somebody who wantedto give me a kidney.
You love somebody who wanted to.
We're the donors.
And you're really nice and I'mnot so nice, right?
So on day one you give yourkidney to the person that I love
(17:13):
and I'm supposed to donate onday two.
And on day two, you know, Ithumb my nose at you and say I'm
sorry.
Speaker 1 (17:19):
I'm going to come get you.
Speaker 2 (17:20):
The person that I love already got my kidney.
Actually, I don't want to dothis anymore.
I really didn't want to do thisat all in the first place, and
now the thing I wanted to havehappen has happened.
I'm out of here.
We can't legally strap somebodyto a table and take their
kidney out.
That's not legal.
(17:45):
You might feel that way, thatthat's unethical, that they
behaved in such a way, but thetruth is donating a kidney is
voluntary and just the fact thatyou gave a kidney to the person
I love you can't force my handand make me give my kidney.
So, because we couldn't trustpeople in that way with 100%, we
had to recognize that if yougave your kidney to the person
that I love and I did not givemy kidney to the person that you
love, you would be harmed intwo ways.
First, the person that I loveand I did not give my kidney to
the person that you love, youwould be harmed in two ways.
First, the person that you lovedidn't get the promised gift.
(18:09):
But kidney exchange is amechanism whereby you and the
person that you love can find akidney, and you've lost your
ability to do that now becauseyou no longer have a kidney that
can participate in the exchange.
So we had to protect society.
All of us transplant surgeonsin 2006 had it in our heads that
(18:32):
you had to do this at the sametime, because we had a fiduciary
responsibility to protect youand your loved one.
The first time Sue and I didthis, we had Steve Woodle in
Cincinnati and Mike Reese inToledo and CNN was filming it
and the camera crew looked atSteve and he said we're putting
(18:54):
the donor to sleep.
And then the second CNN crewwas in Toledo and they were
filming me we're putting thedonor to sleep.
So they heard we're putting thedonor to sleep, switch view.
And they hear me say now wowthat's how we did it Right.
So we had to do all thesetransplants at the same time and
it was just, it was embedded inour minds that you had to do it
(19:16):
that way.
So Al Roth at the time had agraduate student he was working
with named Uku Unger, and we hada computer programmer named
John Kopke, special guy, who'swritten wrote the code for us
for everything that we did aftermy dad stopped doing it.
John did it for 10 years, 15years, and we were on this call
(19:38):
and Utku was trying to convinceme no, if a nice person gives
their kidney, like you did,laurie, you know.
So instead of you love somebodyand I love somebody, and we're
not going to donate until theperson we love gets a kidney.
Imagine now it's Sue lovessomebody and I love somebody,
and Sue's the good person who'swilling to give to me, and I'm
(19:59):
the bad guy that's going tocheat.
So you now give to the personthat I love, right, and I'm
supposed to, on day two, give tothe person that Sue loves.
So you give to the person thatI love.
But now I say no, no, I'm not to, on day two, give to the person
that Sue loves.
So you give to the person thatI love.
But now I say no, no, no, I'mnot going to do that.
It's completely different,because Sue hasn't given up her
kidney.
You did not, sue.
(20:19):
So we can put Sue and theperson she loves back into the
pool and find a different matchfor them.
So the harm that's caused tothem is very different than the
harm that would have been causedto you if you had given your
kidney and then I didn't do whatI was supposed to do.
That novel idea that we could,even if people did, cheat, the
(20:43):
harm would be less, was part ofwhy this concept got published
in the New England Journal.
But it also got publishedbecause we said you could trust
me, you know the next in line todonate and of course, we were
all so filled with fear that wehad to do everything at the same
(21:03):
time.
This idea that we could trustsomebody was anathema, and I
think that that kind of saidactually people are nice.
And I've come to see now thatif you're the kind of person who
comes forward and says I'mwilling to give a kidney because
I love you so much, and thenyou find out you don't match and
(21:25):
you say, well, I'm willing togive a stranger my kidney
because I love you so much andyou'll get a kidney if I do that
, and then they watch you getthe gift of life and have your
whole life transformed and theyget you back.
Somebody like that is veryunlikely to then be the kind of
person who wouldn't pay itforward so another family could
(21:48):
enjoy the beautiful gift thatthey had been given.
So while it does happen, ithappens very rarely, and so Sue
and I and all of the transplantsurgeons, transplant
professionals across the UnitedStates they all feel very
comfortable now with this ideathat you can give a kidney today
and your loved one is going toreceive a kidney in the future.
Speaker 1 (22:10):
And is it true, if somebody does back out, that
there's typically a way to fixthe situation and you don't
leave the patient who losthanging?
Speaker 2 (22:18):
Always, almost always , and that's because of nice
people like you, Lori.
So you know, we have enoughpeople who are giving a kidney
with nothing expected in returnthat we have extra kidneys, so
to speak, that we can say I'm sosorry that this happened to you
.
We have an extra kidney, by theway, because of nice people
(22:38):
like Lori, and here's the kidneythat you were supposed to get,
but you're going to get it fromsomebody else and, fortunately,
there's nearly 500 people everyyear who do this and give their
kidney to somebody that theydon't know.
Speaker 1 (22:54):
And so Matt was the first guy that you did this with
.
Speaker 2 (22:58):
So Matt saw a TV show that made him want to donate
and he got connected to somepeople in one of our
participating transplant centers, connected to some people in
one of our participatingtransplant centers, and it was
to.
It was actually 2007 becausewould Coover finally convinced
me that we could do this and ittook two hours for him to to
(23:21):
convince me because I was so Ijust could not see what he was
talking about.
But I then talked to thetransplant center where he had
gone and he had offered to givea kidney and back then if
somebody offered to give akidney, we'd give one kidney to
one person and I said, well, whydon't we give that kidney to
somebody who has a loved one whocould pay it forward and create
(23:42):
a chain?
And they love the idea and sowe explained it to Matt.
Matt loved the idea and it justso happens that when we put it
all together we could do athree-way swap.
So Matt would give to somebodynamed Barb, barb's husband, ron,
would give to Angie, angie'smom, lori, would give to
somebody down in, and anotherone of our transplants.
Speaker 1 (24:05):
And these are real names you're using right now
this actually happened and it'sdocumented on your wall right
behind you.
Speaker 2 (24:10):
Actually, if you go to People Magazine and won
Heroes of the Year and it gotpublished in the New England
Journal of Medicine, so it wasvery much an academic idea but
it was a beautiful societal ideathat captured the imagination
of People Magazine.
Societal idea that captured theimagination of People Magazine.
(24:31):
So the challenge for me, as theguy who was sort of breaking
this code of simultaneoustransplants- You're a disruptor.
Yeah, I am a disruptor and to dothat, you know, you have to
have a little bit of beingwilling to break the rules.
If you thought it was the rightfor me, if you thought it was
the right thing to do which Idid, but most of my colleagues
(24:54):
at the time thought it was thewrong thing to do I thought,
yeah.
In fact, when I heard this andfinally the idea clicked, when
this big idea was explained tome, I could see what was
possible and I wrote the fastestpaper of my life and I wrote it
for the New England Journal ofMedicine, which I'd never
written before, and we submittedit all within a week and it
(25:17):
came back.
It got rejected and thereviewer said interesting idea,
but the New England Journalshouldn't accept it, because the
New England Journal publishesthings that have been done and
are proven and this has neverbeen done, it's just an idea.
But secondly, and perhaps moreimportant, they shouldn't do
this because they're going totrust somebody.
(25:39):
And you shouldn't trustsomebody because when theyit's
going to happen, somebody isgoing to cheat and when they
cheat, the entire United Statessystem is going to fall apart,
because this whole thing isbuilt on trust.
All of organ donation is builton trust, and when that trust is
broken, the system will fail,and so they shouldn't do it.
You shouldn't take this risk.
Speaker 1 (25:58):
I mean, I understand the fear behind that because if
this was screwed up at thebeginning, at such an early
point and trying to figure thisall out, it could have taken
years to correct and regain thattrust right.
Speaker 2 (26:10):
Yeah, but you know you invest in your money, you're
doing academic work.
The amount of risk you'rewilling to take is usually
recognized by the amount ofbenefit that can come from this
and by taking this risk, thisconcept's now led to an extra
20,000 kidney transplants aroundthe world.
Speaker 1 (26:28):
Thank you both for that.
That's incredible.
Speaker 2 (26:30):
It's a really cool thing, but I want to try to take
the listener back to 2007, whenwe were making this happen.
There was a lot of oppositionand we were taking a lot of risk
.
So I'll ask you and thoselistening now, imagine that you
were me and I want to giveMatt's kidney to Barb and I got
this guy down.
Were me and I want to getMatt's kidney to Barb and I got
(26:51):
this guy down in Arizona and Ilive in Ohio and the guy in
Arizona who's Ron the husbandhow do I know if the guy is
actually not going to cheat?
And the New England Journal saidwe're not going to publish your
thing.
So I thought to myself maybethey're right, maybe he'll cheat
(27:11):
.
So I was planning to win by.
On the same day we do threetransplants, right, and if
Matt's gift helped three peopleinstead of just one person we
had already won.
Speaker 1 (27:27):
That's what Matt said too, so that's how the donor
felt about it, which I think ispretty cool.
Speaker 2 (27:31):
If the third person then cheated, oh well, we
already had won.
But when the New EnglandJournal did this, I'm a
scientist at heart, so I did theexperiment.
I took that three-way chain andI broke it into three separate
transplants, and the first one Iseparated by a week so we would
test.
Ron, you got a week, dude, dowhat you promised to do.
(27:52):
And then Angie, we gave her twomonths to back out and she
still donated.
And so we started doing thesethings separately.
Speaker 1 (28:02):
Were you sweating the whole time.
Speaker 2 (28:03):
I sweat the whole time.
Then we did two transplants andtrusted somebody.
So we did it incrementally.
You know like a scientist wouldbuild these things.
It could have been terrible,right?
So how do you that very firsttime we interact with Ron, how
do you decide whether or not youcan trust him?
What would you do, lori?
How would you evaluate Ron?
(28:26):
How would you come in your ownmind Look, is this the right guy
?
Is this the right pair?
I could do another pair Mattcould give to somebody else.
Is this the right guy?
Will this guy do what hepromised to do?
Because you know, if we'd doneit 10 times and then something
happened, somebody failed, it'sthat'll be okay.
Speaker 1 (28:48):
But if this first one fails, it's a big deal.
So how do you evaluate to makesure that when?
You try this for the first time.
It works and it's not a failure.
Speaker 2 (28:55):
That's right.
Speaker 1 (28:56):
I think you got to trust people.
Speaker 2 (28:58):
So that's what I had to do I had to figure out how to
trust this guy, and I'd nevermet him, and I would have met
him.
Yeah, so, so, so.
So medical clinics aren't theplace to build trust.
The patient hopefully alreadyhas trust in their doctor and
the doctor.
One of the reasons it's gottenin the New England Journal of
Medicine is because doctorsaren't used to trusting patients
.
It never works in thatdirection.
(29:21):
And that's what we were sayingyou could do.
We were saying, hey, transplantprofessionals, you can trust
people to do the right thing,Right.
But I was doing that for thefirst time and I was super
nervous.
So I got in my little minivanand I I flew him into Detroit
Metro airport and I picked himup and I took him out for the
best steak dinner we could havein Toledo, Ohio, and I spent an
(29:43):
evening with him and, uh, at theend I liked the guy and I
trusted him.
Speaker 1 (29:48):
So you, did meet him and you vetted him I vetted him
over a steak and red wine.
That's beautiful, isn't itgreat it is, and now you're not
doing any vetting.
There's no steak dinners.
Speaker 2 (30:02):
No, we don't.
I have come to see that thetype of people who say I love
you so much, I'm going to giveyou a kidney.
Okay, I love you so much, I'mgoing to give you a kidney.
Okay, I love you so much that,even though I can't directly
give you a kidney, I'm going togive it to a stranger you then
see that that happens for theperson you love, those people
don't cheat.
We actually don't need to vetthem.
There has to be a little bit oftrust.
If you get the heebie-jeebieswhen you're talking to somebody
(30:27):
like, oh boy, I'm not sure whatthis is, but that's not the type
of people in general who comeforward and say I'm willing to
be a living donor.
Speaker 1 (30:37):
And that wraps up part one just as the storm
rolled in.
Apologies for the abrupt ending, but I'm so glad we were able
to capture this incredibleconversation about trust,
innovation and what's possiblewhen people step up, follow
through and pay it forward.
The pioneers behind KidneyExchange took bold risks when
many thought it was too complexor unlikely to succeed.
(30:59):
Their vision and persistencehave saved thousands of lives.
For me, it's a powerfulreminder that true innovation
takes courage to challenge thestatus quo and the determination
to keep going when the wayforward isn't always clear.
Check out the show notes forlinks to the People Magazine
article and the New EnglandJournal of Medicine piece that
(31:21):
Mike referenced, and I reallyhope you'll join us for part two
, where Sue and I dive into theprotections available to living
donors through the Alliance'sDonor Protect Program.
It's an important conversation,especially if you're
considering donation yourself.
This season of Donor Diaries isproudly sponsored by GiftWorks,
an organization dedicated toempowering organ recipients and
(31:42):
living donors through education,advocacy and support.
By helping patients share theirjourneys and connect with
donors, giftworks ensureseveryone feels supported
throughout the transplantprocess.
We're honored to partner with ateam that's transforming lives,
one transplant at a time.
To learn more, visityourgiftworkscom.
(32:03):
Remember, every act of kindnesscreates ripples.
Thanks for listening and keepspreading those positive vibes.
(32:33):
This is Lori Lee signing off.
See you in part two.
I just want to feel thesunshine.
I just want to feel thesunshine.
I share this life with you.
I share this life with you.
Bye.
Welcome to Donor Diaries, a podcast that explores
how people are changing livesthrough the powerful act of
living donation.
Tune in to discover howkindness, love and simple acts
of giving are transforming livesevery day.
(00:36):
Hello and welcome back.
Today's episode kicks off aspecial two-part series to wrap
up Season 3 of Donor Diarieswith two remarkable guests, Dr
Michael Reese and Sue Reese fromthe Alliance for Paired Kidney
Donation, also known as APKD orjust the Alliance.
(00:57):
You'll hear us use all threenames throughout these episodes,
so now you're in the know.
I'm actually on site for thisinterview at the Alliance
headquarters in Perrysburg, Ohio, which gave us a chance to sit
down in person for thisconversation, which was extra
special.
Let me share a little bit aboutthis power couple with you.
Dr Mike Reese is a transplantsurgeon, innovator and founder
(01:19):
of the Alliance.
He's been at the forefront ofpaired kidney exchange for
decades and he's the pioneerbehind the first
non-simultaneous, altruistickidney donor chain, which
revolutionized how transplantchains work.
Today, Sue Reese currentlyserves as the Alliance's chief
operating officer, educator andstrategist, deeply committed to
(01:46):
removing the obstacles thatstand in the way of donation and
transplantation, believing thateverybody deserves a second
chance.
In part one, I talk with bothMike and Sue about the early
years of kidney exchange, whatit was like to be a pioneer in
the field, and how they builttrust with donors to facilitate
the very first chains.
Part two is a focusconversation with Sue where we
explore donor protect, a set ofresources and safety nets that
(02:09):
help make living donation moreaccessible.
If you're a current orpotential donor, these are
protections you'll want to knowabout and we'll walk you through
them one by one.
And why is this a two-partspecial, you ask?
Because our original recordingwas dramatically interrupted by
a thunderstorm that sounded morelike a tornado once it hit the
mic.
So Sue talking about how safeit was to be a donor didn't
(02:33):
quite land the same way, withsirens in the background.
So I'm so excited to share thisdouble episode with you.
Let's hop in.
Well, welcome to Donor Diaries.
Thank you so much for being myguest today, Mike and Sue.
Speaker 2 (02:46):
Our pleasure.
Speaker 1 (02:47):
Thank you for having us.
So to get started, can you tellus what is the Alliance for
Paired Kidney Donation?
Speaker 3 (02:55):
The Alliance for Paired Kidney Donation.
It's a registry that we foundedin 2006 to help individuals
that are suffering from kidneydisease have a willing but
incompatible donor be matched upwith somebody in the same
situation.
Speaker 1 (03:10):
How do you, what do you do with the two with
incompatible donor?
Speaker 3 (03:12):
recipient pairs.
So good question.
So we work with over 50transplant centers in the United
States and we have apartnership with these
transplant centers.
They're well-educated on pairedexchange and what they do is
put their incompatible pairsinto our database.
And, behind the scenes, whatthe APKD does is we figure out
(03:35):
with our software system that weoptimize the match and find the
best match for that recipient,so we pair them up.
Speaker 1 (03:46):
And what makes the Alliance different from other
organizations in the transplantspace that are doing similar
types of work?
Speaker 2 (03:52):
Well, I think what's unique about the Alliance for
Paired Kidney Donation is thatit was started by a transplant
surgeon to help transplantcenters deliver the concept of
paired donation for theirpatients in a way that served
everybody the best possible way.
The focus was really how can wemaximize this beautiful gift of
(04:14):
kidney paired donation so thateverybody wins.
That beautiful gift is thisamazing algorithm at the center,
built by a guy named Alvin Roth, who won the Nobel Prize in
Economics in part for this thing, that basically says okay, all
these people can match, butwhile there might be a million
(04:35):
ways that we could match people,we have a limited number of
people in the pool and the donorcan only give away one kidney,
and a person who needs can onlyreceive one kidney.
And so, while there might be amillion possibilities, you have
to find the one that ultimatelygives the best possible solution
to the most people, and that'sreally what the APKD delivers
(05:00):
for the United States.
Speaker 1 (05:02):
By the way, when I interviewed Al and I asked him
who he admired most intransplant, he said it was you.
Speaker 2 (05:08):
That's very kind of him.
Well, the feeling is mutual.
Speaker 1 (05:12):
How did the two of you get together?
Speaker 2 (05:14):
Another guy that's done a lot to help people with
end-stage organ disease is BobMontgomery.
Bob helped start Pear Dondonation along with a guy named
Lloyd Ratner.
Lloyd Ratner, I think, is themost innovative guy in our
generation in transplantation.
He started laparoscopicdonation.
He started transplanting peoplebecause they had antibodies
(05:38):
that stopped the transplant andfiguring out how to go through
that.
And then he had this big poolof people that didn't match and
he came up with the idea ofpaired donation.
So it was really.
Lloyd was one of the real earlyguys and at the time he was a
faculty member with Bob at JohnsHopkins and Bob went on to
really be the guy who figuredout how to do this antibody
(05:59):
stuff and really became one ofthe world's leaders in that but
also in pair donation.
So Bob in the early daystransplanted somebody who had
wealth and who was very gratefulfor what had happened and said
Bob, I'd like to give you a giftand I'd like you to create a
meeting of the people who areinterested.
And this is like 2003,.
(06:21):
So pair donation hardly existed.
It was just starting and Bobknew all the players who were
trying to make this happen inthe United States and put
together a meeting in Chicago atsome hotel I don't remember,
but I remember the lobby.
And I was sitting there in thelobby and this booming bass
(06:42):
voice said Hi, my name's Al Roth, I'm an economist at Harvard
and I think I can help you andyour dad do a better job with
your kidney exchange.
And I'm like oh, what does aneconomist know about health
stuff?
Economist man, you just worryabout money, right?
So to me, naive guy that I wasback then, I didn't understand
(07:06):
economics.
It's really about all humaninteractions and Al actually
does not study.
He specifically doesn't studymarketplaces where people can
use money, because he wants tostudy the marketplace, not the
money.
I had no clue that that evenexisted.
So back then for me there wasthis guy named Alan Greenspan
(07:27):
who was, I don't know, the headof the Federal Reserve, and
that's who I thought economistswere.
So I'm looking at AlanGreenspan not Al Roth guy, who's
going to go on to win the NobelPrize in market design and I'm
looking at him like, what do youcare about kidneys?
But I'm from Flint, michigan,and my mom taught me to be nice,
(07:49):
so I sat down on a bench therein the lobby with this economist
guy and I listened to what hehad to say and 90% of it went
over my head.
My dad and I at the time werewriting software.
My dad actually wrote theworld's first software that let
transplant centers put data inover the Internet and match
people together, and we had avery simplistic view because I
(08:10):
was the guy designing it.
Speaker 1 (08:11):
Was he a computer guy ?
Was he a doctor?
Speaker 2 (08:14):
He was a software computer programmer.
Speaker 1 (08:17):
That's a convenient pair, it was.
Speaker 2 (08:19):
Absolutely so.
I'm really grateful to my dadfor for making that possible.
That by itself is a wholenother story.
So my my dad was had built thesoftware designed by me, and the
way my brain worked was we'vegot all these people who have
loved ones that want to donate.
What we'll do is we'll draw aline from one donor to one
(08:44):
recipient.
We'll do is we'll draw a linefrom one donor to one recipient
and then we'll associate a scoreon how good of a match that was
for that recipient.
And then we'll take all thoselines, that where the donors can
give, and we'll just rank,order them and we'll take the
best one.
And we are only thinking aboutdoing two-way swaps.
So we had two lines, one fromone pair to another and back, so
(09:07):
we'd have to add up the twolines for anybody that could do
a two-way swap and then the onethat scored the most.
We do, and if there was anotherone we could do, we do that.
Speaker 1 (09:17):
Mm-hmm.
Speaker 2 (09:19):
And what Al was trying to explain to me that day
was that I was missing the factthat if you had four pairs and
one could give to two and onecould give to three and two
could give to four and fourcould give to two, but the best
(09:39):
match was one giving to two andtwo giving back to one.
You would transplant 1 and 2,but you wouldn't transplant 3
and 4.
And the score of 1 giving to 2would be the highest 2-way that
you could do.
But if you were smart about it,you could figure out that 3
could give to 4 and 4 could giveback to 3 and 1 could give to 3
(10:00):
and 2 could give to 4.
And you wouldn't do one and two, because that was the highest
scoring one, but rather you'd dotwo and four and one and three
and you'd help four people andthe total score of helping four
people would be higher than thescore of one and two getting a
transplant.
So you'd score more points andyou'd help more people.
Speaker 1 (10:20):
I just pictured you guys.
But is this what your pillowtalk is like at night?
Speaker 3 (10:26):
Unfortunately sometimes yes.
Speaker 1 (10:30):
I love the picture of Al Roth coming into the hotel
and saying hello, I'm Al Rothand you guys making contact
there.
Sue, how did you come into theAlliance and play into this?
Speaker 3 (10:41):
So I started out as a transplant coordinator at the
Medical College of Ohio, andthat was in 2001.
And when we would have anindividual come in with kidney
failure into our clinic withtheir loved one who wanted to
donate to them, we'd have to sayI'm sorry, you're not
compatible, and they would haveto go back in and remain on
(11:04):
dialysis.
Well, laurie, you know thatevery month and every treatment
that you're on dialysis, youhave a higher chance of a
complication and a 20% of dyingthe first year on dialysis.
It was heartbreaking, and Mikebrought home the files from.
He brought home this idea thatlike, hey, what do you think if
(11:25):
we could actually take the Sue'sand her dad's that have kidney
failure and match them up withsomebody else in clinic?
Let's stop turning people awayfrom our clinic, let's find a
way to make this happen.
Well, in 2001, it wasn't legalto give your kidney to a
stranger.
In 2007, the Charlie NorwoodAct passed, so then we were
(11:48):
allowed to give a kidney to astranger.
It wasn't illegal, and one ofour first exchanges happened
within the walls of Ohio and Iwas blessed to be a part of.
We had a son who wanted to givehis mother a kidney, but since
she was pregnant with him andwhen she was developing that
child inside of her, she wascreating antibodies against the
(12:12):
child.
That wasn't her, it was not thechild, but it was the father.
I don't know if you know this,but about 70% of women that have
kidney failure, their child ortheir spouse cannot give them a
kidney Because of the antibodies.
Because of the antibodies.
I didn't know that.
Yeah, wow, it's fascinating,right?
So here we are.
(12:32):
I have kidney failure, justlike this mother in my clinic.
My son wants to give me akidney, but we can't.
So what do you do?
And prior to 2007, I'd have toremain on dialysis.
Then we had a pair inCincinnati who a wife wanted to
give to her husband, but theyweren't ABO compatible, and it
(12:54):
was our system that found thatthe wife could give to the
mother in Toledo and that theson could give to the husband in
Cincinnati.
Speaker 1 (13:01):
So this was the computer system that you made
with your dad, mike, that youput these people in and you
started to see where the linesconnected donor and recipient
pairs.
What was that like to see thatfirst connection be?
Speaker 3 (13:13):
made Emotional, because kidney disease isn't
just a single disease for oneindividual.
It affects the families, itaffects society.
I mean, people are forced toremain on dialysis because we
don't have enough kidneys.
And I think that's what's soimportant about your movement,
(13:38):
this podcast, what we're doingat the Alliance for Paired
Kidney Donation.
More than ever do we needpeople to the Alliance for
Paired Kidney Donation.
More than ever do we needpeople to come together for
humanity.
Right, we do.
We are finding our differencesare saving each other's life.
And it doesn't matter whereyou're located in the world.
It doesn't matter whatpolitical views you have, it
(13:59):
doesn't matter what color youare or where you live views you
have.
It doesn't matter what coloryou are or where you live.
Speaker 1 (14:10):
We need to come together to save lives.
We do, and I love that you guyssee that.
And it's one of the things Ilove about you and Mike is your
humanness and that you talkabout this so frequently.
Thank you for being thosepeople, thank you.
So last night I got to meet thefirst non-directed donor in
Ohio, dusty, and the man whostarted the first kidney chain,
matt.
Can you tell us the story aboutthe first chain and we haven't
(14:34):
been doing chains for that long.
I'd love to hear the behind thescenes story about how that one
came about, because that's alittle bit different than doing
the paired exchange that youwere just talking about, sue.
Speaker 3 (14:43):
Absolutely, and I'm going to let Mike talk about
this because it's such a greatstory of how he vetted, like how
do you trust someone to pay itforward?
Speaker 1 (14:53):
Right.
Speaker 3 (14:53):
Right, and that's you .
Find a guy like Matt, right.
Right, I mean, matt is just agood human and said hey, I know
people are suffering, people aredying and they're losing their
loved ones.
Take my kidney, give it tosomebody.
And it was Mike and Al thatcame up with the concept of well
, what if we could give Matt'skidney to somebody and then
(15:15):
their loved one pays it forward?
Right, that's a big trust.
If Matt gives his kidney toBarb, like he did, what if Ron
reneged?
Speaker 1 (15:24):
Right, which is actually something I don't worry
about.
Is it something you worry about?
Not?
Speaker 3 (15:29):
anymore.
But when we thought of thisconcept we got a lot of pushback
.
Really, you're going to do thisBecause Barb has an
incompatible donor.
What if the next person in linewhich Ron was going to give to
Angie?
What if Ron said, hey, my lovedone got a kidney, yeah, I'm out
?
And then Angie, 33 years old,suffering on dialysis since the
(15:54):
age of 18, didn't get a kidney.
Where is she left in the system?
So this is a great story forMike to tell, because it's
really about trust.
Speaker 2 (16:07):
So when we had this idea, remember my dad and I had
written software that lets youdo two-way swaps.
So it's 2006.
We were doing two-way swaps andpeople were doing three-way
swaps and four-way swaps.
Two-way swaps and people weredoing three-way swaps and
four-way swaps, and I thinkJohns Hopkins and Bob Montgomery
and his group had done asix-way swap and the only way
(16:29):
they could do it was to do it ona Saturday when the operating
rooms weren't being used,because to do a six-way swap,
you need 12 operating rooms, youneed six donors and six
recipients, you need all thesurgeons.
It's a big deal and mosthospitals couldn't give up 12
operating rooms.
Speaker 1 (16:47):
So back at the beginning they were doing all of
these surgeries at once for asix-way swap.
Speaker 2 (16:51):
That's right, and the reason they did them all at
once is let's make it simple,let's just have a two-way swap.
So let's have it be you and me,lori.
So, I love somebody who wantedto give them a kidney.
You love somebody who wanted togive them a kidney.
We're the donors me, lori.
So I love somebody who wantedto give me a kidney.
You love somebody who wanted to.
We're the donors.
And you're really nice and I'mnot so nice, right?
So on day one you give yourkidney to the person that I love
(17:13):
and I'm supposed to donate onday two.
And on day two, you know, Ithumb my nose at you and say I'm
sorry.
Speaker 1 (17:19):
I'm going to come get you.
Speaker 2 (17:20):
The person that I love already got my kidney.
Actually, I don't want to dothis anymore.
I really didn't want to do thisat all in the first place, and
now the thing I wanted to havehappen has happened.
I'm out of here.
We can't legally strap somebodyto a table and take their
kidney out.
That's not legal.
(17:45):
You might feel that way, thatthat's unethical, that they
behaved in such a way, but thetruth is donating a kidney is
voluntary and just the fact thatyou gave a kidney to the person
I love you can't force my handand make me give my kidney.
So, because we couldn't trustpeople in that way with 100%, we
had to recognize that if yougave your kidney to the person
that I love and I did not givemy kidney to the person that you
love, you would be harmed intwo ways.
First, the person that I loveand I did not give my kidney to
the person that you love, youwould be harmed in two ways.
First, the person that you lovedidn't get the promised gift.
(18:09):
But kidney exchange is amechanism whereby you and the
person that you love can find akidney, and you've lost your
ability to do that now becauseyou no longer have a kidney that
can participate in the exchange.
So we had to protect society.
All of us transplant surgeonsin 2006 had it in our heads that
(18:32):
you had to do this at the sametime, because we had a fiduciary
responsibility to protect youand your loved one.
The first time Sue and I didthis, we had Steve Woodle in
Cincinnati and Mike Reese inToledo and CNN was filming it
and the camera crew looked atSteve and he said we're putting
(18:54):
the donor to sleep.
And then the second CNN crewwas in Toledo and they were
filming me we're putting thedonor to sleep.
So they heard we're putting thedonor to sleep, switch view.
And they hear me say now wowthat's how we did it Right.
So we had to do all thesetransplants at the same time and
it was just, it was embedded inour minds that you had to do it
(19:16):
that way.
So Al Roth at the time had agraduate student he was working
with named Uku Unger, and we hada computer programmer named
John Kopke, special guy, who'swritten wrote the code for us
for everything that we did aftermy dad stopped doing it.
John did it for 10 years, 15years, and we were on this call
(19:38):
and Utku was trying to convinceme no, if a nice person gives
their kidney, like you did,laurie, you know.
So instead of you love somebodyand I love somebody, and we're
not going to donate until theperson we love gets a kidney.
Imagine now it's Sue lovessomebody and I love somebody,
and Sue's the good person who'swilling to give to me, and I'm
(19:59):
the bad guy that's going tocheat.
So you now give to the personthat I love, right, and I'm
supposed to, on day two, give tothe person that Sue loves.
So you give to the person thatI love.
But now I say no, no, I'm not to, on day two, give to the person
that Sue loves.
So you give to the person thatI love.
But now I say no, no, no, I'mnot going to do that.
It's completely different,because Sue hasn't given up her
kidney.
You did not, sue.
(20:19):
So we can put Sue and theperson she loves back into the
pool and find a different matchfor them.
So the harm that's caused tothem is very different than the
harm that would have been causedto you if you had given your
kidney and then I didn't do whatI was supposed to do.
That novel idea that we could,even if people did, cheat, the
(20:43):
harm would be less, was part ofwhy this concept got published
in the New England Journal.
But it also got publishedbecause we said you could trust
me, you know the next in line todonate and of course, we were
all so filled with fear that wehad to do everything at the same
(21:03):
time.
This idea that we could trustsomebody was anathema, and I
think that that kind of saidactually people are nice.
And I've come to see now thatif you're the kind of person who
comes forward and says I'mwilling to give a kidney because
I love you so much, and thenyou find out you don't match and
(21:25):
you say, well, I'm willing togive a stranger my kidney
because I love you so much andyou'll get a kidney if I do that
, and then they watch you getthe gift of life and have your
whole life transformed and theyget you back.
Somebody like that is veryunlikely to then be the kind of
person who wouldn't pay itforward so another family could
(21:48):
enjoy the beautiful gift thatthey had been given.
So while it does happen, ithappens very rarely, and so Sue
and I and all of the transplantsurgeons, transplant
professionals across the UnitedStates they all feel very
comfortable now with this ideathat you can give a kidney today
and your loved one is going toreceive a kidney in the future.
Speaker 1 (22:10):
And is it true, if somebody does back out, that
there's typically a way to fixthe situation and you don't
leave the patient who losthanging?
Speaker 2 (22:18):
Always, almost always , and that's because of nice
people like you, Lori.
So you know, we have enoughpeople who are giving a kidney
with nothing expected in returnthat we have extra kidneys, so
to speak, that we can say I'm sosorry that this happened to you
.
We have an extra kidney, by theway, because of nice people
(22:38):
like Lori, and here's the kidneythat you were supposed to get,
but you're going to get it fromsomebody else and, fortunately,
there's nearly 500 people everyyear who do this and give their
kidney to somebody that theydon't know.
Speaker 1 (22:54):
And so Matt was the first guy that you did this with
.
Speaker 2 (22:58):
So Matt saw a TV show that made him want to donate
and he got connected to somepeople in one of our
participating transplant centers, connected to some people in
one of our participatingtransplant centers, and it was
to.
It was actually 2007 becausewould Coover finally convinced
me that we could do this and ittook two hours for him to to
(23:21):
convince me because I was so Ijust could not see what he was
talking about.
But I then talked to thetransplant center where he had
gone and he had offered to givea kidney and back then if
somebody offered to give akidney, we'd give one kidney to
one person and I said, well, whydon't we give that kidney to
somebody who has a loved one whocould pay it forward and create
(23:42):
a chain?
And they love the idea and sowe explained it to Matt.
Matt loved the idea and it justso happens that when we put it
all together we could do athree-way swap.
So Matt would give to somebodynamed Barb, barb's husband, ron,
would give to Angie, angie'smom, lori, would give to
somebody down in, and anotherone of our transplants.
Speaker 1 (24:05):
And these are real names you're using right now
this actually happened and it'sdocumented on your wall right
behind you.
Speaker 2 (24:10):
Actually, if you go to People Magazine and won
Heroes of the Year and it gotpublished in the New England
Journal of Medicine, so it wasvery much an academic idea but
it was a beautiful societal ideathat captured the imagination
of People Magazine.
Societal idea that captured theimagination of People Magazine.
(24:31):
So the challenge for me, as theguy who was sort of breaking
this code of simultaneoustransplants- You're a disruptor.
Yeah, I am a disruptor and to dothat, you know, you have to
have a little bit of beingwilling to break the rules.
If you thought it was the rightfor me, if you thought it was
the right thing to do which Idid, but most of my colleagues
(24:54):
at the time thought it was thewrong thing to do I thought,
yeah.
In fact, when I heard this andfinally the idea clicked, when
this big idea was explained tome, I could see what was
possible and I wrote the fastestpaper of my life and I wrote it
for the New England Journal ofMedicine, which I'd never
written before, and we submittedit all within a week and it
(25:17):
came back.
It got rejected and thereviewer said interesting idea,
but the New England Journalshouldn't accept it, because the
New England Journal publishesthings that have been done and
are proven and this has neverbeen done, it's just an idea.
But secondly, and perhaps moreimportant, they shouldn't do
this because they're going totrust somebody.
(25:39):
And you shouldn't trustsomebody because when theyit's
going to happen, somebody isgoing to cheat and when they
cheat, the entire United Statessystem is going to fall apart,
because this whole thing isbuilt on trust.
All of organ donation is builton trust, and when that trust is
broken, the system will fail,and so they shouldn't do it.
You shouldn't take this risk.
Speaker 1 (25:58):
I mean, I understand the fear behind that because if
this was screwed up at thebeginning, at such an early
point and trying to figure thisall out, it could have taken
years to correct and regain thattrust right.
Speaker 2 (26:10):
Yeah, but you know you invest in your money, you're
doing academic work.
The amount of risk you'rewilling to take is usually
recognized by the amount ofbenefit that can come from this
and by taking this risk, thisconcept's now led to an extra
20,000 kidney transplants aroundthe world.
Speaker 1 (26:28):
Thank you both for that.
That's incredible.
Speaker 2 (26:30):
It's a really cool thing, but I want to try to take
the listener back to 2007, whenwe were making this happen.
There was a lot of oppositionand we were taking a lot of risk
.
So I'll ask you and thoselistening now, imagine that you
were me and I want to giveMatt's kidney to Barb and I got
this guy down.
Were me and I want to getMatt's kidney to Barb and I got
(26:51):
this guy down in Arizona and Ilive in Ohio and the guy in
Arizona who's Ron the husbandhow do I know if the guy is
actually not going to cheat?
And the New England Journal saidwe're not going to publish your
thing.
So I thought to myself maybethey're right, maybe he'll cheat
(27:11):
.
So I was planning to win by.
On the same day we do threetransplants, right, and if
Matt's gift helped three peopleinstead of just one person we
had already won.
Speaker 1 (27:27):
That's what Matt said too, so that's how the donor
felt about it, which I think ispretty cool.
Speaker 2 (27:31):
If the third person then cheated, oh well, we
already had won.
But when the New EnglandJournal did this, I'm a
scientist at heart, so I did theexperiment.
I took that three-way chain andI broke it into three separate
transplants, and the first one Iseparated by a week so we would
test.
Ron, you got a week, dude, dowhat you promised to do.
(27:52):
And then Angie, we gave her twomonths to back out and she
still donated.
And so we started doing thesethings separately.
Speaker 1 (28:02):
Were you sweating the whole time.
Speaker 2 (28:03):
I sweat the whole time.
Then we did two transplants andtrusted somebody.
So we did it incrementally.
You know like a scientist wouldbuild these things.
It could have been terrible,right?
So how do you that very firsttime we interact with Ron, how
do you decide whether or not youcan trust him?
What would you do, lori?
How would you evaluate Ron?
(28:26):
How would you come in your ownmind Look, is this the right guy
?
Is this the right pair?
I could do another pair Mattcould give to somebody else.
Is this the right guy?
Will this guy do what hepromised to do?
Because you know, if we'd doneit 10 times and then something
happened, somebody failed, it'sthat'll be okay.
Speaker 1 (28:48):
But if this first one fails, it's a big deal.
So how do you evaluate to makesure that when?
You try this for the first time.
It works and it's not a failure.
Speaker 2 (28:55):
That's right.
Speaker 1 (28:56):
I think you got to trust people.
Speaker 2 (28:58):
So that's what I had to do I had to figure out how to
trust this guy, and I'd nevermet him, and I would have met
him.
Yeah, so, so, so.
So medical clinics aren't theplace to build trust.
The patient hopefully alreadyhas trust in their doctor and
the doctor.
One of the reasons it's gottenin the New England Journal of
Medicine is because doctorsaren't used to trusting patients
.
It never works in thatdirection.
(29:21):
And that's what we were sayingyou could do.
We were saying, hey, transplantprofessionals, you can trust
people to do the right thing,Right.
But I was doing that for thefirst time and I was super
nervous.
So I got in my little minivanand I I flew him into Detroit
Metro airport and I picked himup and I took him out for the
best steak dinner we could havein Toledo, Ohio, and I spent an
(29:43):
evening with him and, uh, at theend I liked the guy and I
trusted him.
Speaker 1 (29:48):
So you, did meet him and you vetted him I vetted him
over a steak and red wine.
That's beautiful, isn't itgreat it is, and now you're not
doing any vetting.
There's no steak dinners.
Speaker 2 (30:02):
No, we don't.
I have come to see that thetype of people who say I love
you so much, I'm going to giveyou a kidney.
Okay, I love you so much, I'mgoing to give you a kidney.
Okay, I love you so much that,even though I can't directly
give you a kidney, I'm going togive it to a stranger you then
see that that happens for theperson you love, those people
don't cheat.
We actually don't need to vetthem.
There has to be a little bit oftrust.
If you get the heebie-jeebieswhen you're talking to somebody
(30:27):
like, oh boy, I'm not sure whatthis is, but that's not the type
of people in general who comeforward and say I'm willing to
be a living donor.
Speaker 1 (30:37):
And that wraps up part one just as the storm
rolled in.
Apologies for the abrupt ending, but I'm so glad we were able
to capture this incredibleconversation about trust,
innovation and what's possiblewhen people step up, follow
through and pay it forward.
The pioneers behind KidneyExchange took bold risks when
many thought it was too complexor unlikely to succeed.
(30:59):
Their vision and persistencehave saved thousands of lives.
For me, it's a powerfulreminder that true innovation
takes courage to challenge thestatus quo and the determination
to keep going when the wayforward isn't always clear.
Check out the show notes forlinks to the People Magazine
article and the New EnglandJournal of Medicine piece that
(31:21):
Mike referenced, and I reallyhope you'll join us for part two
, where Sue and I dive into theprotections available to living
donors through the Alliance'sDonor Protect Program.
It's an important conversation,especially if you're
considering donation yourself.
This season of Donor Diaries isproudly sponsored by GiftWorks,
an organization dedicated toempowering organ recipients and
(31:42):
living donors through education,advocacy and support.
By helping patients share theirjourneys and connect with
donors, giftworks ensureseveryone feels supported
throughout the transplantprocess.
We're honored to partner with ateam that's transforming lives,
one transplant at a time.
To learn more, visityourgiftworkscom.
(32:03):
Remember, every act of kindnesscreates ripples.
Thanks for listening and keepspreading those positive vibes.
(32:33):
This is Lori Lee signing off.
See you in part two.
I just want to feel thesunshine.
I just want to feel thesunshine.
I share this life with you.
I share this life with you.
Bye.
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