Donor Diaries
Donor Diaries is a podcast that delves into the beauty and complexity of living organ donation. Tune in to hear extraordinary stories of people who choose to share their organs and give the gift of life. The world of kidney and organ donation is a powerful testament to kindness, love, and the human spirit.
With over 90,000 individuals on the kidney transplant waitlist and about 13 people dying each day while waiting, the urgency is real. One in three Americans is at risk for chronic kidney disease, and one in nine already suffers from it, often unknowingly.
Donor Diaries offers unfiltered narratives from living donors and candid insights from transplant experts, aiming to elevate the conversation around organ donation. Our goal is to bring this crucial issue to the forefront, so no patient has to wait in vain or suffer needlessly.
Donor Diaries
From One Kidney To Many | EP 37
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One kidney can change many lives—if we let it start a chain. We sit down with Dr. John Friedewald, transplant nephrologist at Northwestern Medicine, to unpack a breakthrough: using a deceased donor kidney to initiate a living donor chain that moves multiple recipients off the waitlist and ultimately delivers a living kidney back to a service member at Walter Reed.
We break down how kidney paired donation works, why non-directed donors supercharge matching, and what changes when a deceased donor becomes the chain starter. Dr. Friedewald explains the military-share pathway, where high-quality deceased kidneys are screened for parity with prospective living donor outcomes, then routed via directed donation to a match in exchange. The recipient’s incompatible living donor pays the gift forward, extending the chain until an unmatched donor returns a living kidney to Walter Reed. Along the way, we dig into logistics, OPO coordination, timing windows, and why this process fits within familiar directed donation workflows.
Fairness and outcomes are front and center. We address concerns about blood type O equity, share early data showing more than double the impact per deceased donor, and discuss how programs monitor blood type flows to avoid disadvantaging anyone on the deceased list. For patients, we explore the real tradeoff between waiting for a theoretical living match versus accepting a filtered, high-quality deceased offer today—especially when months more on dialysis raises risk. With lessons from Italy’s regional rollout and leadership from centers like Northwestern and Michigan, this approach is poised to scale and become a standard tool that magnifies each gift and shortens waits.
Subscribe, share this episode with someone curious about organ donation innovation, and leave a review with your biggest question about deceased donor–initiated chains. Your feedback helps more people find these life-saving ideas.
Links
Northwestern Medicine Transplant
The Alliance for Paired Kidney Donation
Military Share Deceased Donor Initiated Chains (American Journal of Transplantation)
Kidney Paired Donation Chains Initiated by Deceased Donors
Donor Diaries Website
Donor Diaries on Facebook
GiftWorks Website
Connect with Laurie Lee
We'd have a lot of deceased donors, 20,000 or so every year. And that's essentially a non-directed donor. It's someone who dies and donates their organ. Two of them actually, two kidneys in most cases. And what if we could use those kidneys to start to start a chain? That would provide a lot of non-directed donors, and it would open up even more possible matches in these kidney exchange networks.
SPEAKER_01:Donor Diaries is a podcast that explores the many paths that lead to saving lives through transplant. We talk with ordinary people who choose to donate, and we talk with experts who help expand what's possible in the transplant field. In past episodes, we've talked a lot about the transplant toolbox. So what does that mean? It means looking at every possible way to help more people get transplanted. So to list a few of those tools in the toolbox, it could mean increasing the number of deceased donor transplants, normalizing living donations so more people feel comfortable stepping forward as a living donor, removing donor disincentives to make it logistically easier for people to become living donors, exploring xenotransplant, which could dramatically increase the organ supply in the future, and finding ways to make use of organs that might not have been used in the past. Today we're adding a brand new tool to that toolbox. My guest today is my own nephrologist, Dr. Friedewald from Northwestern Medicine. Dr. Friedwald played a huge role in my own decision to donate, and I'm grateful that he's been in my life ever since my donation. We're talking about an innovative approach that helps take more patients off the wait list by leveraging the power of a single deceased donor kidney in the same way we leverage non-directed living donor kidneys. We'll talk more about this in the interview. It's truly remarkable, and I can't wait to dive in. All right. Well, I get to welcome somebody very special to me to my podcast today, Dr. Friedewald, who's actually my nephrologist. So welcome, Dr. Friedwald.
unknown:Great.
SPEAKER_02:Thanks. Good to be here.
SPEAKER_01:So can you tell me a little bit about what you do at Northwestern Medicine?
SPEAKER_02:Sure. So my name is John Friedowald, and I'm a transplant nephrologist. That's a kidney doctor. Focus on the transplant side of kidney disease care. But I'm an internist, a medical doctor, not a surgeon.
SPEAKER_01:Well you were one of the main people I worked with when I donated, and I've always been very grateful for everything you did for me, especially uh the long talks we had. I don't know if you remember all the questions I had, but you always had plenty of time for me.
SPEAKER_02:It's great. Yeah. I think you know, educating people, particularly people who want to donate a kidney is a really important part of the process. Um we talk about informed consent, and that is a concept, right? But having someone truly understand what they're going to do is a challenge. And part of the challenge is the fields evolving, right? The risks to donating a kidney probably are the same, but the way we understand that risk has changed over time as we do this now seven decades into the experience with living kidney donation.
SPEAKER_01:Well, do you want to take a second and brag about Northwestern?
SPEAKER_02:Sure, always happy to do that. So I'm also the medical director of the kidney transplant program here at Northwestern and have been for uh about nine years now. And I'm very proud of what we do here. We have evolved into one of the busiest kidney transplant programs in the country. And that is not our end game. Our end game is to not just do more transplants, but do them better and offer uh new innovative ways to do things. And I think what we're gonna talk about today is one of those things that has evolved that we're very proud of that we're kind of changing the way transplants happen in the U.S. and around the world.
SPEAKER_01:Yes. And innovation is one of your a key pillars of Northwestern.
SPEAKER_02:We don't want to do it, just do it. We want to do it better.
SPEAKER_01:Yes, hashtag better. So today I want to hear all about something called military shared deceased donor initiated chains or DDIC for short, or do you call that dick for short?
SPEAKER_02:The DDIC, I think.
SPEAKER_01:DDIC is probably the very good okay. Can you explain what DDIC is?
SPEAKER_02:Sure. And I think uh to get there, we need to understand what kidney pair donation is. I think we can start with that.
SPEAKER_01:Yes.
SPEAKER_02:In general, if we start with a simple example of a directed pair where my brother wants to give me a kidney, as living donor transplants evolved over the decades, if my brother was the wrong blood type, say he's blood type A and I'm blood type B, that traditionally didn't work because I have antibodies in my immune system to his blood type, and my body would reject his kidney immediately. And so in general, we do transplants to what we call compatible blood types. Now, there are some ways we've come around that through a process called desensitization, which we're not going to get into today. But in general, what we figured out was we could do kidney exchanges where we could have two pairs that are incompatible. And if an A is trying to give to a B and a B is trying to give to an A, we can swap the donors where the A gives to the A, B gives to the B, and everybody wins. And that's how kidney exchange started actually in Korea initially and then brought to the US around the year 2000, doing simple exchanges A to A, B to B. Um, then we got smarter people involved, mathematicians and economists who figured out that we could do A to B, B to C, and C to A, and we could go on and on and build chains that were bigger and longer and would get more people transplanted. And throughout all of this, too, we were able to get people who are very hard to match transplanted as well. And that's what we call HLA incompatibility, where someone has antibodies in their immune system with other people and it's very hard to match them. Kidney exchange can find a match for someone who didn't have a match. So it solved two problems blood type incompatible transplants and what we call HLA incompatible transplants. Okay. But eventually, you have people you couldn't find matches for. Enter non-directed donors. Non-directed donors are people like you who step forward and say, I want to give someone a kidney. And because they come into a matching system by themselves, they don't have to have a reciprocal match for their intended recipient. And mathematically that opens up a lot of possibilities because they only have to match in one direction. And by them matching to a recipient, that recipient's donor can then give to someone else, and these chains start. And that's when chain transplants started. Um and that concept goes back about 15 years. Initially, we thought we had to do all the transplants at the same time. The idea was if my brother was going to donate to me and you're going to donate to someone else, and you go to sleep and give me your kidney, but then my brother decides to back out and not go for it, then your recipient's out of luck. You've lost their bargaining chip in the exchange. And so we initially did this where all donors went to sleep at the same time. That was great, but it limited the number we could do because even in uh our center, which is one of the biggest centers in the country, I think the most we ever did at one time was five in one day, which was 10 surgeries in one day, which was a lot.
SPEAKER_01:That's a lot.
SPEAKER_02:That that was a record of the time. And then we got an SNL for that actually, um, on the weekend, weekend news. But, you know, that was a limiting factor. And so by doing non-directed donation, having one person start a chain, we were able to uncouple the transplants and do them at separate times. That was another big innovation in the field of uh kidney paired donation. And so we have these non-directed donors who are living donors to start chains, and that's wonderful. And that really has driven a lot of innovation in kidney transplantation, particularly with kidney paired donation, because we can do things uh not at the same time. We can do them chains that go all over the country and match in much bigger pools. Um, we also mathematically know the bigger the pool of donors or recipients, the more likely you are to find better matches. So we built large kidney exchange clearinghouses or programs, as they're called.
SPEAKER_01:Clearinghouses is kind of a weird thing for kidneys.
SPEAKER_02:Exactly. But a a big marketplace, as our friend uh Professor Roth would say, um, who gave up a lot of these concepts. And so that's great. But, you know, again, about a decade ago, the concept arose. Well, we have a lot of deceased donors, 20,000 or so every year. And that's essentially a non-directed donor. It's someone who dies and donates their work in two of them, actually, two kidneys in most cases. And what if we could use those kidneys to start to start a chain? That would provide a lot of non-directed donors, and it would open up even more possible matches in these kidney exchange networks. Um, there's some logistics involved in that, right? So the nice thing about living donation is we can plan it, we can time it, we don't have to rush necessarily. Uh, with a deceased donor, it's not a lot of time. There's about sometimes you get 24 or 48 hours lead time before the donor operation occurs where you can plan things out and run a match run. That's not a lot of time, but it's enough time. And so the concept was put out there that what if we used a deceased donor to start a chain? We could have a deceased owner go into a matching pool in the kidney exchange, find a recipient who they match with, then that recipient's living donor would then continue the chain. And eventually at the end of every non-directed donor chain, there's an a donor that has no one to donate to, and they could donate back to the deceased donor waiting list.
SPEAKER_01:So kind of like breaks up the concept of right now, we always hear like one deceased donor can save X number of lives. This actually like makes that exponential if their kidney is going to start a chain.
SPEAKER_02:Right. And it has a lot of benefits. So if you think about it, everyone in a kidney exchange pool is generally on the waiting list for a deceased donor as well. If a kidney can start a chain and get a bunch of transplants done among living donors and recipients, all those people come off the wait list. So one deceased donor kidney that normal transplanted one person on the wait list is now still getting a kidney for someone on the wait list, but also taking a bunch of people in a kidney exchange pool off of the wait list as well.
SPEAKER_01:So if you're on the wait list, you're benefiting because a whole bunch of people above you got taken off and you've now moved closer to the top of the list.
SPEAKER_02:That's exactly right. That's exactly right. Yep.
SPEAKER_01:So who are the key players in this right now?
SPEAKER_02:So for this to happen, it took some doing and it took a lot of innovative thinking. Uh, we partnered with the Alliance for Kidney Donation, which is based out of Toledo, Ohio, uh, and they partnered with Walter Reed Army Medical Center and the Department of Defense. There's something you can do called directed donation. If a deceased donor dies, let's say I die in a car accident, and my cousin is on a waiting list in Atlanta, Georgia. My family can say, let's skip the UNOS algorithm of who gets, you know, there's a very clear wait list for deceased donors, it's prescribed. But you can short circuit that and say, John is going to donate to his cousin Lynn in Atlanta, and that is allowed. And it doesn't matter where Lynn is on the list, she gets one of my kidneys. And that's called directed donation. And that's key to this because what Walter Reed does in this sense is Walter Reed said, when we are promised a kidney from an active duty military member, and I should say the military share program is based on that, when an active duty military person dies and donates their organs, one kidney's promise to the program at Walter Reed that transplants active duty military servicemen and women.
SPEAKER_01:So I feel like a service person would want this, right? But they're actually not the one consenting to it. It's Walter Reed consenting.
SPEAKER_02:Well, so yeah, hear me out. This is a win for them for sure. Because the idea is rather than someone at Walter Reed getting a deceased donor transplant, right, they get a living donor transplant. In general, we know that living donor kidneys tend to work better and work longer in most cases, but not all cases. And so one of the things we'll talk about with this program is their parity. Is getting a deceased donor kidney the same as getting a living donor kidney? And the truth is, if you're in a kidney exchange program, um, we now have ways to say, is the deceased donor kidney you're getting as good or better than what you would get in a kidney exchange program? Sometimes, even though they're they have a potential living donor, that donor isn't compatible with them. And it's not really a donor because they can't get a kidney from that person. They don't have a donor. So the first tenet is that when we do these military share transplants, we want to make sure that the donor is of good quality. Not all donors are the same. Some are older, some are younger. So there's a screening process where we say, before we even start down this road, do we think this deceased donor kidney is a really high quality kidney from a younger donor who has great kidney function that would be on par with the living donor? If it is, then the Alliance for Kidney Innovation works with Walter Reed to say, okay, this is one we we think we're going to do. And Walter Reed says, yes, we agree. They then take that donor information, plug it into the computer matching system at the Alliance for Pear Kidney Donation. And sometimes it matches with someone in the program, sometimes it doesn't. If it doesn't, the deceased donor happens and off it goes like normal.
SPEAKER_01:Like normal.
SPEAKER_02:But if it does match with someone, then the Alliance for Pear Kidney Nination notifies that center and says, hey, like we did recently at Northwestern, we did one of these a few weeks ago. And we had it, we did a story about it. And we get a call and we say we've got a kidney for Joe Smith, not the real name. And then we review that donor and say, yep, it's a good match for Joe Smith. We think it's good kidney function. And Joe Smith, this is something that Joe Smith should really consider. Joe Smith has a donor, a living donor in our exchange system, but they're not compatible for whatever reason. And so then we call Joe Smith and say, Joe, do you want this kidney? Here's the deal. And Joe says, yes. Great. Then we go through the process, and then Walter Reed can do a named directed donation. So Walter Reed says to the donor family, you're going to direct one of these kidneys to Joe Smith at Northwestern. And that happens like any other deceased owner directed donation. We do the transplant for Joe Smith, like we did any deceased owner transplant, and off we go. Then Joe Smith's donor is informed of this as well before we do any of this and say, hey, this is going to happen. Joe's going to get a transplant. You still need, as part of this whole kidney exchange program, you need to donate.
SPEAKER_01:And they've probably, or Joe's donor, already agreed to be in an exchange program.
SPEAKER_02:They agreed to be in the exchange program, but we have an additional consent saying, hey, this is going to be a military share thing and this is what's happening because it's different and we want to make sure people know about it.
SPEAKER_01:Yeah.
SPEAKER_02:So we do a consent specifically for this because we want that donor to continue the chain. They don't have to, of course. They never have to, but we want to make sure that they know that this is part of a bigger thing. And that this chain will eventually end up benefiting a military member. And a lot of people feel very strongly about that. Actually, it's a real motivator for a lot of people. We we honor our military members for a lot of reasons. This is a great way to do that.
SPEAKER_01:So to know that sorry, how does it get back to the military?
SPEAKER_02:So stay with me. So what happens then is Joe Joe gets his kidney. Then Joe's donor donates in the Alliance for Pair Kidney Donation. So they then run a chain with Joe's donor as the non-directed donor to start the chain. And we take that chain as far as we can through the Alliance for Prairie Notation, like any other non-directed chain. Eventually, as in all of these chains, you get a donor who doesn't match with anyone in the matching system. And that donor then donates back to Walter Reed. The service man or woman at Walter Reed waiting for a deceased donor kidney gets a living donor kidney.
SPEAKER_01:Oh, that's beautiful.
SPEAKER_02:Isn't it cool? So it's kind of an upgrade for them. They've allowed this chain to happen, which gets more people transplanted. And it's sort of a win-win-win, is what we think. So that's how it works. So those are the major players. Um, Northwestern's done a bunch of these. Uh University of Michigan's done several of these as well. There are a lot of other players. To date, 22 of these military share DDIC transplants have happened, started chains, um, and they're ongoing. So that's what's happening.
SPEAKER_01:That's a lot to have not heard about this in the news.
SPEAKER_02:I know, right? I'm so glad you're doing this podcast because we need to get the word out there. It's really cool.
SPEAKER_01:So 22 in what period of time?
SPEAKER_02:Approaching two years now.
SPEAKER_01:Okay. Because I know most people don't die in a way that allows them to donate their organs. How frequently do we have an active member of the military in a position where they can start a DDIC chain? Because are they typically coming from another country back to the United States?
SPEAKER_02:Yeah, so good question. There are a lot of active duty military stationed here in the U.S., right? Whether they're Army Reserves or whatever it may be. Um, you're right. Most people don't die in a way they can be a deceased donor. And a lot of people don't understand that. To be a deceased owner, if you die on the side of the road and are found dead on this, you can't donate your organs. You have to be in a hospital. You have to have had a massive brain injury, you have to be on life support so that you're on a breathing machine and your heart and lungs are still working. And what happens is there is a legal definition of brain death where you say, look, this person is never going to wake up, their brain is dead. Um, there is a legal definition in all states and in all hospitals. Once that person is declared brain dead, then they can become a deceased donor. But a lot of people don't die in that way, which is why you don't have enough trans kidneys for transplant. Right.
SPEAKER_01:So I think about like the pressure OPOs are under right now to get more kidneys used. I would think an OPO would be excited about this. What level of involvement do OPOs need to have for deceased donor-initiated chains to work smoothly? And do you think the current OPO processes could support this? Or will doing this on a larger scale require different infrastructure for everybody, including the OPO?
SPEAKER_02:Yeah, good questions. So right now, the OPO is a key player in this because they're the link between the donor, the donor family, and the transplant system, right? They're the bridge. Right now, it takes them recognizing that this is a kidney from a military member who will be part of this military share program. This military share process has been in place for a long time, more than a decade at least, where these active duty members will donate to someone at Walter Reed. So that's in place. And I think most OPOs get that and they screen for that. What most OPOs don't know is about this military share DDIC program. So it would be getting all of them. Right now, the Alliance for Percadian Nation is primarily working with the OPOs in Ohio where they are. But you can imagine there are 56 OPOs or 58 OPOs in the country. And so expanding this to all those OPOs would novel one increase the possibilities for more of these to happen, but also would increase the complexity of it for sure.
SPEAKER_01:What about on the hospital side, like current staffing, OR availability and coordination systems? Like what did you have to do here at Northwestern to be able to facilitate this? Did it change things?
SPEAKER_02:The beauty is it changes nothing. This doesn't change anything in the standard donor and transplant process. All it does is rerouting of the deceased donor kidney to a different person. And that happens not uncommonly. We'll get a call for saying, oh, we've got a donor in Atlanta whose cousin is on your list in Chicago and they want to donate a kidney to them and direct it. That happens not uncommonly. So it's all part of something we all understand already. The key is we never want to prolong the donation process. So sometimes logistically it may not work out, right? That we have time to run a match and find the people. And if it doesn't work out, then the person would just do a directed donation, you know, a standard deceased donation. But if we can and we get enough lead time, it's a bit complicated. But sometimes the deceased donation process is accelerated because the donor is unstable and we need to do the donation quickly. In those cases, this wouldn't work out. But in some cases it is, and we have one or two days of lead time before the donor OR happens where we can plan this out and make it happen. And that's usually the case in these in these uh 22 that have already happened.
SPEAKER_01:That's so cool. So you talked about this a little bit already, but it's ingrained in my brain that we want people to get living donor kidneys. So if I'm a patient at Northwestern, I have a super healthy donor, I'm not compatible with them, but I need a kidney, and I know that a paired exchange is available to me, in which case I can get a living donor kidney and that it's just a matter of waiting for that match to happen. In what case would you say, you know what, Lori, you're actually better off with this deceased donor kidney, even though you could get a living donor kidney and a paired exchange later?
SPEAKER_02:Yep. That's a good question. And then, you know, this is the challenge of what we do all the time, because it's never apples to apples. There's there's always this future, you know, that's saying burden the hand and two in the bush, right? It's it take what you've got now versus do I wait for something better later? That's the great enigma of transplantation. We never know what the future holds. There's always the possibility of I wait a little longer and gather something a little better, but there's always a risk. We always worry about errors of commission. If I take this, it's not going to be as good. We often don't think about errors of omission. If I don't do this, what's going to happen to me? Right. And there's risk to not doing something. We know that. We know 17 people die a day waiting for a kidney transplant. And we've had those cases where someone passes up a donor offer and they never get, and you call them again, they're not there anymore. So there's that. But to specifically answer this question, we go through that with everybody. We say, okay, here is this deceased donor. Here's what it is. It's this good a match for you. It's this good. One example we had from over a year ago was we had a father who was giving to his daughter. His daughter was young. She was in her 20s. The dad was in his, you know, late 40s, 50s, reasonably healthy guy, but you know, I think it was a 19 or 20-year-old deceased donor came up for this young 20-year-old girl. And it was like, and the donor had incredible kidney function and just a powerhouse kidney and was a good match for this young woman. And we called and said, you know, your dad would be a fine donor for you as a living donor, but we really think this young donor with a perfect kidney would be even better for you. And they they agree and they were part of this.
SPEAKER_01:So does that happen often?
SPEAKER_02:Well, it's only happened 22 times.
SPEAKER_01:I mean, like where you would tell some any patient, you know, I'm I know you have a living donor lined up, but I think that this deceased donor is a better option. Um I didn't know that. That's why I'm asking. Yeah.
SPEAKER_02:So actually, it's a good question because when when we have people waiting in our kidney exchange program now, we always give them the option of staying what we call active for deceased donor offers, or sometimes we make them what are called inactive, where they get waiting time, but they're not getting offers. Because they say, I don't want to even entertain an offer from a deceased donor. The truth is we could put filters now on deceased donor offers. For instance, we could say, only offer a kidney from a deceased donor to this patient if the age is less than 30, the match is a six or six out of 12 or better, the size is this, that, the other, and we can do all that. And then we tell them if that comes up and it may not happen, but if it comes up, you might want to consider it. You know, every living donor goes through some risk. And if we can avoid that and get a really good decease donor for someone, that's another thing to consider as well.
SPEAKER_01:That's interesting. I've learned something new today. Thank you. From your perspective, what's the strongest argument for using deceased donor kidneys as chain initiators? And what's the strongest argument against it?
SPEAKER_02:It does work. And when it does work, it's beautiful because I can tell you from the 22 donations, the average is 2.6 transplants per deceased donor. So it will be more than double the gift, right? And we have two chains that are still ongoing from a military member, so we don't even know that average is going up because it's longer than that now. The one we just started is at least five transplants long so far and still open. So, right? So we're really magnifying the gift. So that's what's so cool about this. And as long as we think there's parity in the quality of the kidney everyone's getting, and that's impossible to know exactly, but we all have an idea, then it's a really great thing.
SPEAKER_01:And what's what's the biggest argument that you're hearing?
SPEAKER_02:Yeah. There are a couple arguments. And actually, one theoretical risk here is blood type O is the universal donor, but not the universal recipient. And so the concern was, oh, hey, you're just gonna take blood type O donors, start these chains with them, because an O non-directed donor is a very powerful thing because they match with everybody, and they can start these chains and they can get hard-to-match people transplanted. But then an O kidney is not gonna come out the back end. You'll get an A kidney or a B kidney out the back end of the deceased donor list. And the deceased donor list, which would have gotten a no donor, is now getting a B or an A kidney. And that's not fair. The truth is in practice, that's not been the case, which is good to know. Uh, and it's the kind of thing we can track and monitor. But we don't want to shortchange people on the deceased donor waiting list in any way. And in fact, we don't think so. We're taking people off the list, as we said, and bumping them up secondarily. So we think this is good for everybody.
SPEAKER_01:So it's a perception that people see that you're stealing this from somebody that's on the list because really you're still taking more people off the list, which is or different types of kidney, different blood types, right?
SPEAKER_02:And if we are disadvantaging blood type O patients further, that's not a good thing. But so far, our experience has not been the case.
SPEAKER_01:Who would we start with next if we're like right now we're just working with um military? What how do you envision this getting bigger?
SPEAKER_02:Yeah.
SPEAKER_01:Who who would we say yes to next? Because we're not going to do this with every deceased donor kidney, right?
SPEAKER_02:Exactly. That's the thing. And so, you know, that's the that's some of the open question. I think right now there's still the opportunity to expand this military share program as we expand to more OPOs. Now, you know, the waiting list at Walter Reed isn't infinite. Thankfully, it's a smaller list. And so, you know, eventually we may transplant over on the wait list there if this really expanded more and more. But you can imagine the key is being able to do a directed donation and to, you know, where to share that kidney. There's more than one kidney pear donation program. And so if we open this up to all deceased owners, you question would be, well, which program does get shared to? Does it rotate? You can imagine there are smart people out there with solutions to this. They could rotate it every other one. You know, there are two, there are two big kidney pear donation programs out there, the Alliance for Kidney Donation and the National Kidney Registry. You can imagine they can just alternate. There are a lot of solutions to this that smart people to figure out. What's cool is we went to a conference that was hosted at Stanford, and it was on innovation in international kidney exchange. And it turns out that in Italy, they're already doing permission to use deceased owners to start initiated change. And they're doing this in one region of Italy right now routinely. So it can be done.
SPEAKER_01:Did El Roth help set that up?
SPEAKER_02:Absolutely.
SPEAKER_01:So Italy and now the United States, there's are there other countries that are doing this?
SPEAKER_02:Uh no, those are the two we know of. But in Italy, they're doing it with not just a military share, but just any deceased owner. And so uh it's only in one regionally right now, but the idea is to expand it. So these aren't pilots in a sense, but they are proof of concept. And I think if we thankfully, the experience we've had has been very positive. And I think it only shows us that we can could continue to expand this, and it would be a good thing.
SPEAKER_01:Yeah, absolutely. Just expands the gift further and further. How might Northwestern leverage its experience with complex paired exchanges and you just mentioned international kidney exchanges to lead national conversations to this idea.
SPEAKER_02:I think, you know, all of this is complex logistics. Um, and you need teams that are nimble and able to operate on a high level. I think we have, you know, having one of the biggest and busiest living owner kidney transplant into sea starter programs in the country allows us to do this seamlessly. Right. We get an offer on a weekend, we get an offer in the middle of the night. We're able to operationalize this and make it happen. And and so I think it's at it's naturally going to grow out of large programs like the University of Michigan and Northwestern. But eventually we'll be able to expand this and offer it to all 200 plus programs in the country is the idea.
SPEAKER_01:So so the other opio is probably this isn't even on their radar. Or do you think that they're catching wind?
SPEAKER_02:At this point, not, but I think, you know, it's as it grows, I'd love to be able to expand it. I think, you know, starting small and proving that it works was key and addressing some of the issues we are worried about about certain blood types being disadvantaged or it not working out. But so far, you know, people are generally very positive about it, very supportive of it for all the reasons we've discussed. And as we show that they can magnify this gift, I don't see why we wouldn't continue to try to expand it. You know, the the key concept is I think it's hard when you have you've identified a living donor. My brother's gonna give me a kidney. Well, yes, but he can't because we're the wrong blood type. And if he can't give me a kidney, I don't really have a donor. It's a theoretical donor. But now I've got a kidney that's actually in front of me, this deceased center kidney, which is a good quality kidney, that's gonna benefit me. And I think it takes a lot of education to explain, hey, look, a kidney that you don't even have, this theoretical versus one that's here now that can get you off dialysis today and save your life today is really valuable. We Northwestern have had done a lot of education with our team. All the team members that talk to patients and educate them along the way, everyone needs to really understand how this works. Because it's it's it's easy to say, well, a kidney living donor is better than a disease donor. Well, not if you can't get that living donor kidney.
SPEAKER_01:Yeah.
SPEAKER_02:Any kidney is better than no kidney. And particularly if we find a high quality disease donor kidney for you, that's a really good thing.
SPEAKER_01:So maybe I need to shift how I look at that because I always tell patients, um, I hope you don't get mad at me for saying this, but I always say, don't worry about finding a match, find a donor, let Northwestern worry about the match.
SPEAKER_02:But you kind of look at that as a theoretical No, because once no, that you're you're right in a sense that once someone brings a viable living donor, an approved living donor, then they've got a chip to bargain with and they can either donation program, right? Then that's their entry into that. And even if that donor is not compatible, we can almost always find a compatible donor for them through an exchange.
SPEAKER_01:Okay.
SPEAKER_02:So yeah, always better to have a living donor. But a factor that we don't think about a lot, and this is time, right? If you're hard to match, if you're blood type A, sorry, you're blood type O and your donor's blood type B, for instance, that's tough to match the other way around in an exchange program.
SPEAKER_01:Right.
SPEAKER_02:Those are the pairs that wait the longest we know in any exchange system, whether it's the National Kidney Registry or the Alliance or Kidney.
SPEAKER_01:Yeah.
SPEAKER_02:And so sometimes if it says, yes, you might find a match in the system with the living donor, but it's going to take you 12 months, and you've got a great deceased donor tomorrow, 12 more months of dialysis is risky.
SPEAKER_01:Yeah. Yeah.
SPEAKER_02:Some people don't make it that long. And so you think about it that way, you think, take the kidney, right?
SPEAKER_01:Yeah, I get it. That's I get it when you put it that way. Yeah, that's the trade-off.
SPEAKER_02:And that's hard. It's hard to think about that, but that's what we that's what we get paid to do in your hair.
SPEAKER_01:And I remember your disappointment with my A-positive kidney. I'm like, oh, it's no no.
SPEAKER_02:You know, the math just works against us, but A's are great too.
SPEAKER_01:Especially an A plus.
SPEAKER_02:That's right.
SPEAKER_01:Or B positive. I feel like that's positive. You've got to be positive.
SPEAKER_02:Sounds good.
SPEAKER_01:You guys are so freaking smart.
SPEAKER_02:Right? It's just it works on so many levels.
SPEAKER_01:Yeah, it really does.
SPEAKER_02:When it's win-win-win, that's when you're like, this is gonna happen. Yeah. And that's why this seems inevitable. And it's a matter of figuring out the logistics and scaling it. And that's when we defer to our smarter people to step in and work on that stuff. From the simple country doctors here.
SPEAKER_01:Well, this is truly innovative and exciting. And um it's it so neat that this is happening right here in Chicago at Northwestern.
SPEAKER_02:Yeah. Well, we're glad you did this because we want to get the word out to more people. And I think as more and more people understand this and hear about it, that's what's gonna help it grow and help awareness. So thank you so much for doing this.
SPEAKER_01:Well, thank you for sharing.
SPEAKER_02:Yeah. Well, thanks for thanks for talking to me today. This is great.
SPEAKER_01:Hope to have you as a guest again one day. I always like to get a Northwestern interview in every season. So I think we'll start out uh this season with with this one.
SPEAKER_00:This is free to really good one. Yeah, thank you.
SPEAKER_01:Thank you. To learn more about DDIC, Northwestern Medicine, the Alliance for Paired Kidney Donation, or Walter Reed, check out the show notes. I also invite you to find Donor Diaries on Facebook or Instagram and join the conversation there. And don't forget to subscribe to Donor Diaries wherever you're listening to this so that you never miss an episode. Quick hint new episodes drop the first Tuesday of every month. This season of Donor Diaries is sponsored by Giftworks, an organization dedicated to education, advocacy, and support for both organ recipients and living donors. GiftWorks celebrates the courage it takes to ask for help in the miraculous ways that help often answers. Within this growing community, recipients, families, and donors come together to participate in a transformative exchange that reminds us of the power of human connection. Visit yourgiftworks.com to learn more. And remember, kindness matters and it's always a choice. This is Lori Lee signing off.
