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
The Gift of Hope with Dr. Harry Wilkins | EP 32
Join us on Donor Diaries as we welcome Dr. Harry Wilkins, CEO of Gift of Hope, who transitioned from a 36-year career as a trauma surgeon to leading an organ procurement organization in 2020. With his unique perspective as both a physician and an industry leader, Dr. Wilkins offers a rare behind-the-scenes look at the complex and deeply personal world of deceased organ donation. From the moment of injury to the life-changing decisions families face, he sheds light on the critical role OPOs play in guiding and supporting donor families through the process.
A Chicago native, Dr. Wilkins shares how his childhood fascination with car mechanics unexpectedly led him to a career in surgery, a path shaped by his family's strong values of faith and service. Now, he is driven by a bold vision: a future where no one dies waiting for an organ. He discusses the transformative potential of xenotransplantation, 3D-printed organs, living donation, and emerging advancements in organ preservation—what he calls a growing set of tools in the transplant toolbox.
Throughout our conversation, Dr. Wilkins highlights the dedication of his team at Gift of Hope and their relentless work to save lives every day. He also explores the importance of dispelling myths about organ donation, increasing public awareness, and fostering a culture where donation is the norm.
This episode is an eye-opening look at the challenges and breakthroughs shaping the future of deceased organ transplantation—and the innovative solutions that could one day eliminate transplant waitlists. Tune in for an inspiring and informative discussion with one of the field’s most passionate advocates.
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Welcome to Donor Diaries, a podcast that explores how people are changing lives through the powerful act of living donation. Tune in to discover how kindness, love and simple acts of giving are transforming lives every day. Welcome back Today. We have a very special guest on Donor Diaries Dr Harry Wilkins, the CEO of Gift of Hope, which is the organ procurement organization that serves the region I live in. Organ procurement organization that serves the region I live in. Not only is he a trauma surgeon, but Harry's also a leader in the world of organ donation, working every day to save and change lives. He's letting us peek behind the curtain of an organ procurement organization to see what really happens in the process of organ donation. Dr Wilkins is one of those rare people who brings both heart and expertise to his work, and I can't wait for you to hear his insights. Well, welcome to Donor Diaries, harry.
Speaker 2:Thank you, lauren, appreciate it.
Speaker 1:I think you're one of the most distinguished guests I've ever had on this podcast.
Speaker 2:Well, that means you might have not had very many distinguished people on your podcast, but I appreciate it, thank you.
Speaker 1:No, I mean in learning about you and your career and your history and what brought you to Gift of Hope. You just have an incredibly impressive career helping people.
Speaker 2:Oh well, thank you, Thank you.
Speaker 1:One of the things I read about you is that you like system changes.
Speaker 2:Yes, yes, I can expand on that a little bit.
Speaker 1:You came to Gift of Hope in 2020. I think coming to an organ procurement organization in 2020, probably with that comes system change and you can only imagine what you walked into.
Speaker 2:Well, there were a lot of system changes in 2020 for everybody. So I think I kind of drank water from the fire hose a little bit. So I was a trauma surgeon for 36 years, up until October 6, 2020. And then, october 19, I became a CEO. So that was a big change at first. But then in COVID and those were some very strange times we went from this very one-on-one, in-person sort of thing to we started doing a lot of things on the phone and over the Teams and Zoom and those sorts of things, and that was a huge change, because I think this is, even though we talk a lot about statistics and things like that, this is a very personal, one-to-one sort of thing, and that was very difficult to do when you didn't have that connection. So we had to change a lot of processes.
Speaker 1:I bet I can only imagine. And what our listeners don't know is that I just got a 90-minute tour of your facility.
Speaker 2:Oh, yes, yes. Well, that always injects me too, because it's still a fascinating, fascinating thing. I worked with a transplant surgeon a heart transplant surgeon in Kansas City, and I was not a transplant surgeon myself, but I would accompany him into the operating room sometimes to watch it, and he would put the heart in, and when it started beating again, there was a time when he would just stop and say no matter how many times I do this, just stop and say no matter how many times I do this, it's just a miracle, and that's the thing.
Speaker 2:When I was showing you in touring, I think every employee that you met talked about whatever their role was. We met a transportation guy, we met a family services person, we met a vice president, we met a lab director, and I think you could see it too. All of them just have that wonder about what they do every day. People that have been here 12 years, 21 years, 37 years and they still have that wonder.
Speaker 1:One of the people we met that really made an impression on me was the transport person who said it was his 637th.
Speaker 2:Oregon transport today.
Speaker 1:And you'd only been here seven years.
Speaker 2:Right. And not only that, but you look at his face and there's that pride of knowing that this is what he was doing.
Speaker 1:Yeah.
Speaker 2:And I think that's what's so unique about this business. Every single person in this organization knows what their job is in terms of making life happen, making transplant happen, and I think that's really in my position. It's very fulfilling.
Speaker 1:I can only imagine, yeah, and can we back up a little bit, harry, and can you just explain to our listeners what is an OPO?
Speaker 2:Yes, so OPOs are organ procurement organizations. There's 55 of them throughout the country and every organ procurement organization OPO 55 of them throughout the country and every organ procurement organization OPL has a designated service area called a DSA. It's not always along state lines, but the entire country is covered by an organ procurement organization. We are charged under federal contract with overseeing the entire donation process, from the time that an injury occurs that causes death to a patient all the way to taking care of the donor family after the transplant happens. So we receive the referral from the hospital. We then evaluate the potential donor for their suitable medical suitability of it.
Speaker 2:After that, if they're medically suitable, then we check to see if the person's a registered donor. Then we let the family know what that means. If they're not registered, we talk with the family to gain consent to get donation. If we are successful, then we manage the donors and so that the organs are usable, Then we oversee allocating those organs according to a very specific algorithm that is set forth by the United Network on Organ Sharing, UNOS. Once we've found a home for all the organs, then we coordinate all the teams that have to surgically recover those organs and then we oversee distributing those to the respective transplant centers. After that happens, we're still taking care of the donor family afterwards. Donor families and donor recipients want to know who they are. We coordinate that because we're trying to be respectful of both. There are some donors who really don't want to know anything, or if they don't want to know, they may not want to know, right then.
Speaker 1:The donor families you mean.
Speaker 2:The donor families? They may not. You know, everybody grieves differently. Some want to know right away, some don't want to know at all, some may not want to know for 20 years and everything in between. Some recipients actually have survival guilt. They don't want to know anything about the donor because they know something bad has happened and it's just very individual. So it's always best for us to sort of be the go-between between the donor family and the recipients.
Speaker 1:And you have a whole team of people.
Speaker 2:A whole team of people. A whole team of people Not as many as you would think that would need to do that work, but they're very, very special people to do that work.
Speaker 1:How often do you have somebody who's in intensive care and they're a registered donor and their family, for whatever reason, don't want to donate their loved one's organs? Is that a common thing that happens?
Speaker 2:It is common I don't have a specific number on it. I would say most times it is not an issue, and it's because of how our staff approach these families, but there are times when they are just adamant that they do not care what their loved one said. They're not going to have their loved one donate. Those become pretty difficult cases, and, again, it's not that common. When it does, though, we're faced with a pretty difficult choice, because the whole purpose of the first person registry is that you have the right of self-determination and, obviously, if you're in a position where you are a donor, you're not in a position to say whether or not you're going to do it or not. So what you do is you sign up to say, on the occasion of my death, I want to be a donor. That decision is a legally binding decision. So we always stress when you make that decision, tell your family members about it, because it's really what our job is to honor the donor's wishes.
Speaker 2:If those wishes are at odds with the family's wishes, the donor's wishes prevails. It's governed by gift law, so by informed consent. If I'm getting ready to do a surgical procedure on you, I inform you about the risks and benefits of the procedure and then you make that decision. With gift law it's like a will. If you have a favorite car that you want to go to your cousin and you put that in your will. When you die, that will prevails. It's your last will and testament. That's gift law and that's how it works with organs.
Speaker 1:Wow. Well, I kind of thought that I was a good myth buster. But I understood that if I'm an organ donor and my husband says, no, I don't want to donate her organs, that he got the final say. But that's not the case. There's gift law.
Speaker 2:That is not the case. So the first person authorization if you are an adult and you sign up to be a registered donor, that is legally binding and that takes precedence over any other next of kin, husband or anybody else.
Speaker 1:Well, that's good to know. So, really, what people need to do is tell their loved ones that they absolutely want to donate their organs, so that we don't have a situation where we're saying the donor wants this, but the family wants something else.
Speaker 2:Right and I will expound on that a little bit. It's not just telling your family, it's number one educating yourself about what that means, because a lot of people don't know what being an organ donor is. I was at a registration event last year and we were at a table answering questions and there was a CNA, a certified nurse assistant, and she said you know, I've always wanted to be a donor, but I don't want people calling me, asking me for my organs all the time. And I said that's not what happens.
Speaker 1:That's just my talent.
Speaker 2:Right. And then I explained to her the process and she's like oh, of course, when you're gone, you're gone, right, there's nothing left after that, but your loved ones. What is your legacy going to be? So, if you're not an organ donor, the end of your life is the end of your story. If you're an organ donor, the end of your life is the beginning of another one someone else's story, and that becomes part of your loved one's story, and so there's actually benefits to your surviving loved ones as well. And then so that's why you really want to make sure you've registered that decision. And then the third part is make sure your family knows that this is what you want, and that gives the family comfort. One of the hard things, lori, is that when we talk to a family of a patient who's not registered and the family says I just don't know what he would have wanted to do now that burden is on them.
Speaker 1:Yeah.
Speaker 2:If they're registered and they've told them, the burden is off. This is what they wanted. We're just going to proceed, so that's why that's so important.
Speaker 1:Can you tell me a story about a family who didn't know what their loved one wanted and what happened?
Speaker 2:This was years ago. I was in Texas and there was a 19-year-old and the mother was very young, the mother was probably 35, and single mother, only child. And this 19-year-old was in a wreck, hit his head and became brain dead and he wasn't registered, just didn't know if he wanted to donate or not. And so many of the friends of the kid were there and the mother was trying to make this decision to do I donate his organs or not. And one of the friends said to his mother you know, I've known this guy all my life, we grew up together. He goes, he would give the shirt off his back to any one of us. He goes. I have no idea why. He wouldn't want to do something good for somebody else. She started crying, she thanked him, hugged him so much she goes, you're absolutely right and decided to donate.
Speaker 2:But she agonized over that decision. If he had signed up to be a donor, that would have just taken that away from her. And so it was a positive outcome. But I always remember that because you could see this mother was just in such agony and I happened to be sitting there when the friend came and I just thought how much relief you could just see the relief in her eyes and her whole countenance when she knew that that's what his personality was. But again, I think that was pretty much by luck that that happened. Registering to be a donor just takes that away.
Speaker 1:Wow, have you always been a registered donor yourself? I always have.
Speaker 2:But I was raised, I think I was raised in a household where you just do whatever you can to help people. It's just that's the nature, and so my mother was very much that way, all my brothers are very much that way, and I've always you know, always been raised in faith that you know we live life for the ever after. I've always been of the opinion that we are spiritual beings enjoying a temporary human existence Once the body is gone. This is not me, this is just my earthly vessel, so to speak.
Speaker 2:Your meat bag. It's just meat bag. I don't know if I'd call it meat bag but that's essentially what it is, but it's just stuff. Remember, man, that you are dust, and unto dust you shall return. Don't take your organs to heaven. Heaven knows we need them here and I've always, even as a kid, even before I knew much about organ donation.
Speaker 1:I've always thought that Wow, Harry, can we talk a little bit about your personal life and what? Brought you to Gift of Hope.
Speaker 2:Sure.
Speaker 1:Are you a Chicago guy?
Speaker 2:I am. I'm a native Chicagoan and people always wonder why I'm not used to these winters. I will never get used to these winters.
Speaker 1:I will never get used to these winters either, Harry.
Speaker 2:I'm here my whole life, but I will never get used to them.
Speaker 1:What part of Chicago are you from?
Speaker 2:South side of Chicago, so White Sox fan, not Cubs, okay and I had five brothers. We all grew up on the south side of Chicago and, interestingly enough, my dream as a child was to own a string of service stations. I loved working on cars, so I grew up in the 70s, during the muscle car era, and so, me and my brothers, we used to. One of the bonding things we could do with my dad is we could work on cars together, and so I thought this is great.
Speaker 2:You know, people come in in. They've got this, something's wrong with their car. We can fix it for them. You know, you've helped them. They feel good, I've had a good time working on the car and I thought that's what I'm going to do. And so in the late 70s, early 80s, as they started getting electronic transmissions and all all the, my mother, who was very wise she died in 2011 and she was a school teacher she got me to see that the industry was going to change quite a bit. So shouldn't I just go and do something else? I didn't know what else to do, and so surgery appealed to me, because it's kind of like working on a car.
Speaker 1:Is it though, harry, it kind of is Is tinkering in your garage, kind of like doing a surgery. It kind of is.
Speaker 2:It really kind of is. So think about it A car is a collection of systems. You know, we talked earlier about how I like systems In a car. You've got the drivetrain, You've got the fuel and fuel system, You've got the exhaust, the chassis that. We've got the exhaust, the chassis, that's like. The chassis is like orthopedics. The fuel system is like the GI system. The electrical system is like the nervous system. So it's basically just taking a set of systems that makes the car work and then you can work on it. And so that's what appealed to me about surgery. I love that about surgery.
Speaker 1:Somebody comes in, they've got appendicitis you operate on them, take it out and they're on their way.
Speaker 2:Okay, so this started out as a dream to have a chain of mechanic shops.
Speaker 1:Yes, okay, so that was the original dream. That's amazing that your mom kind of had the foresight of what might happen with cars and that a mechanic might be different now than it was in the 70s or 80s.
Speaker 2:Well, it's really interesting. And again, I think my mom had a lot of foresight about a lot of different things. One of her special knacks was she could read trends and just sort of foresee what's coming. In the early 60s, when we were very, very little and she saw the turbulent times of the 1960s, she knew that with six little black boys on the south side of Chicago, in the summertime this was not good. So in 1965, she bought a piece of land in southwest Michigan 15 acres of land and said when we get out of school, I'm taking my boys up to Michigan. So we spent summers in Michigan. Get out of school, I'm taking my boys up to Michigan. So we spent summers in Michigan. And the 60s and 70s was not a good time to be on the south side of Chicago getting into trouble, but that was again part of her foresight. I feel the same way about the coming changes in the organ donation industry. I feel like I have that sort of foresight that my mom had. It feels the same.
Speaker 1:Let's talk about that a little bit. So the first thing I learned about you is that you actually have a major interest in xenotransplant.
Speaker 2:I do.
Speaker 1:So tell us a little bit about your 2030 vision for organ transplant.
Speaker 2:The 2030 vision. So it's kind of a catchy title and it's very ambitious. I want to harken back to the 60s again, because I'm a child of the 60s and in 1960, when President Kenney, he said that we will put a man on the moon by the end of the decade. With technology that does not exist, we don't know how it's going to happen, but we know we will do it by the end of the decade, and we landed a man on the moon in 1969. In 2014, I was at a conference and all the different alternatives to human deceased organs were coming up. We have 3D printed organs. We have have you ever heard of de-cell re-cell?
Speaker 1:I haven't. What's that?
Speaker 2:So when you have an organ, you have the cellular components and then you have the non-cellular components. So if you put a detergent on that organ, you will basically be left with this lattice work that is, non-cells. You can then take cells and grow them on that lattice and have a functioning organ. That's called decellularization, resellularization. You then have bioartificial implanted organs and then you have xenotransplants. Xenotransplants means from one species to another. Recently, you may have heard in the news that there's been two pig hearts that have been transplanted into people and now the latest kidney that has been planted into a human. The kidney was modified genetically, put into the human and she is doing well two and a half months later off dialysis. Two days ago, the FDA cleared the way for the first trials human trials in xenotransplantation In 2014,.
Speaker 2:I said that we will get to zero wait list by 2030. And here we are, at 2025. I'm still holding out hope that we're going to get there, but it'll be from the application of all of these different things. So xenotransplantation, bioartificial organs, which basically means if you can implant an artificial kidney inside someone, the 3d printed organs, that could become a reality as well, and then these grown organs, these decellularized organs that are now repopulated with cells. So I think about it. Laurie is expanding the toolbox of available organs. There's over 100,000 people waiting for a transplant. 80% of them are kidneys. Last year there were only 28,000 transplants, and there's more people at it. So we have to expand how many organs are available, and let's not even talk about living donation.
Speaker 1:I was hoping you were going to bring that up for part of the toolbox.
Speaker 2:So, as you know, living donation has been fairly flat, but we know the potential is out there. So I think that's one of the other ways to expand the toolbox Order procurement organizations. Unfortunately and I'm hoping to change that we don't really harp on that era of donation, that way of donation before. I think that's just another way that we can expand that. So when you start adding all of these things together, I think we can literally wipe out the wait list by 2030.
Speaker 1:You really think we can do it by 2030? Yes, I can't wait to play this back in 2030, when living in a nation is a thing of the past.
Speaker 2:That's right. Let's put it in a time capsule. And my vision is and I don't have all the words, I won't get the words right but basically I envision a day when nobody who needs an organ will have to wait for an organ and nobody will die waiting for an organ. Right now, about 17 people a day die waiting for an organ. That's just unacceptable. It's just unacceptable.
Speaker 1:It's a lot of needless suffering.
Speaker 2:It's a lot of needless suffering and, like I always ask people, if you were told today that you need an organ, how long would you want to wait? No one would say three years or five years or six years, but that's what happens routinely now. So, without a wait list, I think that is a very admirable goal and I think it's an achievable goal.
Speaker 1:Harry, do people ever tell you to stay in your lane?
Speaker 2:Yes.
Speaker 1:So when I think of an OPO, when I think of Gift of Hope, one of the things I think about and being on a tour with you this morning, I actually got to see people's remains coming in so that their tissue could be recovered, and I know statistically that one in a thousand people die in a way where they can get their organs recovered. And so when I see an actual body of a donor coming into your facility 999 people wanted to do that and couldn't so that is like a lottery winner in terms of somebody who wants to donate their organs and their tissues when they die, but most people don't actually get to do that right.
Speaker 2:It's a huge privilege and it's one of the reasons why it's a privilege, it's a privilege. So last year we had a record. We had 527 organ donors, which is a record in the 40-year history.
Speaker 1:Congratulations.
Speaker 2:Thank you, but that represents 1,495 lives saved because of those 526 organ donors. We got 1,495 organs. So for us, every opportunity has to be maximized. And of those 526, we actually approached 802 families that gave consent and then, for one reason or another, sometimes we get what's called authorized but not recovered. So you get to the operating room and none of the organs are usable, for whatever reason. So we still have to maximize every opportunity that we have. The ones that you saw today, those are tissue donors. So, tissue donors, we have a whole lot more time and many more people can be tissue donors than organ donors, but it's still quite rare. It's still quite rare.
Speaker 1:So the opportunity to actually become a donor upon death is very, very small. I often look at it as you know. You and I are kind of approaching the problem two different ways. Right, like you need to sign up a thousand people to get two kidneys donated right and it might be easier for me to go out there and inspire somebody to be a living kidney donor, right so?
Speaker 1:the numbers are very different for what you're doing and what I'm doing. Do you see it as an organ procurement organization's responsibility to be looking outside of deceased donation to solve the organ shortage?
Speaker 2:It's more than that. It's more than that. And when you say, stay in your lane, I come at this from a surgeon's mentality. And of all the organ procurement organizations, there's two others that have physician CEOs.
Speaker 1:So you're a very uncommon breed to be a surgeon in an OPO and you can probably talk shop with transplant centers in a different way.
Speaker 2:Yes, yes, yes.
Speaker 1:Do you ever stand in, too, to oversee what's going on? I?
Speaker 2:have. It's very exciting. It's very exciting, it's very exciting. But what I mean by coming at it from the surgeon's mentality is I'm a trauma surgeon and so for 36 years I've treated people who have had traumatic injuries. Most of those injuries are preventable Gunshot wounds, traffic crashes I refuse to call them accidents. They're all crashes, because usually if someone's in a crash, there's an identifiable cause which is preventable Speeding. I never considered that Driving on there's an identifiable cause which is preventable Speeding.
Speaker 1:I never considered that.
Speaker 2:Driving on, you know driving too close. Whatever the case, yes, there are some accidents, but most, when you do a root cause analysis, are preventable. So, as a trauma surgeon, in my mind I call them crashes because they are preventable. As a trauma surgeon, the best outcome I can have for you is to not have the incident in the first place. So as a trauma surgeon, I've worked in prevention of gunshot wounds, violent crimes, improving cars, improving streets All of those things have reduced the prevalence of trauma.
Speaker 2:Now Now change this over to kidney failure. A lot of kidney failure is untreated diabetes, untreated hypertension. So in my mind I have said that our responsibility, if we really want to get rid of the wait list, you've got to work on preventing it in the first place. That's one way In my mind.
Speaker 2:There's three ways to decrease the wait list. Number one is don't let them get sick in the first place. Number three is to have them die, which is unacceptable. And the second is to get them all transplanted. The classic organ procurement organization's lane is to get more organs for transplant. I do believe we need to step out of our lane to encourage living donation, to encourage and support research that will get xenotransplantation and bioartificial and all these other alternative organ sources, and I also believe we have a responsibility to promote good kidney health. So we do work with the National Kidney Foundation, the American Kidney Foundation, to try and promote good kidney health, to not have the wait list be so long. So I think you use all your tools at your disposal to get rid of the wait list.
Speaker 1:That's a good way to look at it. Can you tell me something that Gift of Hope is doing that other OPOs might not be doing to increase the number of tools in the toolbox?
Speaker 2:I think that there's a lot of things, but, not having a full understanding of what all other OPOs are doing, I can tell you what we're doing. So one of the things that's interesting is by federal contract. There's certain things that we do that aren't covered by federal contract. For example, there's some donor family support activities that I think I told you on the tour today. Our donor families need a lot of support and we feel that that's one of our big obligations. It's not something that we're under federal contract to do, but it's something we feel is very important to do. I think every OPO does things for donor families. April is Donate Life Month. You'll see us have flag raisings at hospitals in honor of our donor families all over the city and in our service area. A lot of OPOs do that as well. Research efforts so a lot of the research that I like to be involved in are things like perfusion. I think I showed you earlier today where kidneys were on these little pumps and they were putting the kidneys on the pump.
Speaker 2:That extends the usable life of those kidneys and lets us transplant more kidneys. We're constantly researching perfusion technologies that will extend organ capability. Cryopreservation just cold storage of organs we're starting to investigate that as a possibility of getting organs to be procured. So different OPOs expend different resources to have research to try and make more organs available. I don't know how many OPOs are doing what type of research, but that's an example of something that Gift of Hope is doing to support research and those sorts of things. Community education getting into the community to try and dispel myths about organ donation just to increase the number of people who are registered. I know we do a lot of that education. A lot of other OPOs do that as well, but those are just a couple of examples of things we're doing.
Speaker 1:And do you do anything to promote living donation?
Speaker 2:Not as much as we should. One of the things is and I was talking with our vice president of outreach about that, who's worked with you before in the past but I think that that's something that we can do. Typically, we've left that up to the transplant centers. One thing that happened, Lori, is that COVID put a kibosh on a lot of things that we were doing, and I think we're just now starting to re-ramp up some of that. You have a movie coming out that's got to be very helpful, and I think a lot of OPOs will be able to use that movie to help inspire living donation. So I think, yeah, absolutely.
Speaker 1:And I'd be willing to bet that the people who are signing the back of their driver's license and want to donate upon death are probably more likely to donate when they're alive versus people who don't right. So if they're, willing to do one, they might be more likely to be a living donor.
Speaker 2:I think so, and I think the other thing is just people haven't thought about it and having thought about it, they may think why not? This is a really really cool thing to do. So again, that education part is really important to, not just for living donation, but also for deceased donation as well.
Speaker 1:What resources would you like that you might not have right now? That would help Gift of Hope be able to get more people transplanted.
Speaker 2:Money. I think some of these unfunded, like for instance, xenotransplantation when that starts, insurance companies aren't going to cover that right away. And because I've actually visited some of these facilities where they do the genetically modified pigs, there is a lot of private equity that is going in to develop that and these are for-profit companies. They have to get the recuperation on their investment, just like pharmaceutical companies. They spend a lot of money to do the R&D to develop it and they have to recoup that. So when a new drug comes out it's very expensive.
Speaker 2:I think the same thing will happen with these other sources of kidneys and and other organs. I would love it if I had an unlimited amount of money where I could pay for those until insurers picked it up. We just don't have that. I think it's going to take a lot of outside funding, philanthropic funding, to get it up and running to the point where it's covered by governmental third-party payers and insurers. But as that scales I think those costs will come down, just like everything TVs have done that. If you think about the first flat-screen TV you ever had, it was like thousands of dollars.
Speaker 1:Yep, and now they're like $500. $200 on sale at.
Speaker 2:Walmart or something. So I think as it scales it will come down. But I would like, as an organ procurement organization, to be able to help offset those costs from the transplant centers, because it's a very expensive proposition. Because it's a very expensive proposition, I personally believe that no one should be not afforded the care for health care for not being able to pay. So I would like that's one resource I would like to have available to help get that over the hump you said it very well is that you have to register 1,000 people to get one donor. That's a lot of work and unfortunately and you probably heard it too we get these negative things about donation in the press, which kind of sets us back, and we're constantly fighting against that. So I think that's a hard question to answer in terms of what resources we have. I would just want to get the word out better, by hook or by crook.
Speaker 1:If everybody could have the tour I just had, I don't feel like they'd be so inflammatory. I mean this is the most inspired group of people I've ever met in a single organization.
Speaker 2:And I think if you go to any organ procurement organization, you would see similar sort of enthusiasm about the process.
Speaker 1:I mean, one of your employees told me that he's been here for over 20 years and that he's never had a vacation that wasn't interrupted by having to assist in moving in Oregon somewhere.
Speaker 2:Yeah, yeah, and probably was happy to do it.
Speaker 1:And he was he did say that Probably happy to do it. He wasn't complaining when he said it. Right, exactly, yeah.
Speaker 2:Yeah, so it's just. It's just that type of work and when you meet these families, if you've ever been present where a donor family meets their recipient, you'll never forget that in your life.
Speaker 1:Can you tell me a story about that?
Speaker 2:And I just heard this story yesterday. I was almost crying reading the email. But five years ago there was a young woman in the southern part of our state that was one month postpartum, had postpartum depression, was staying with her parents and she took the child in with her into the bedroom and she overdosed. She sent her parents a text at one o'clock in the morning. The parents saw it, walked in on her. The child was on her chest crying. The father was starting. Cpr by the paramedics came. She ultimately died.
Speaker 2:The daughter, the woman, who was 21 years old at the time, donated her heart to a woman who got transplanted here five years ago. So the woman who got transplanted. This is the month before COVID hits February of 2020. She was on the list for a long, long time. This woman happened to be a 98% match for an organ which the surgeon who transplanted said she's never seen that before. So it was a perfect match. The woman wanted to make sure that it was going to be successful before she contacted the donor family. So, as the five-year anniversary is approaching, the woman finally decided I'm going to go ahead and reach out to Gift of Hope to connect with the donor family. She sends the letter. Renata, who you met, gets the letter and she calls the donor family saying we have the letter. Do you want this? Most times when our folks have called, the father has picked up the phone, and this particular time the mother picked up the phone.
Speaker 1:So they'd called that family.
Speaker 2:before we always do we always check in with the families. You know how are you doing and everything else, and most every time they've called, the father's picked up. On this particular time, it was the middle of the day the mother picked up the phone First time ever. She said that she saw a gift of hope and just decided to pick up the phone. The reason she was home is that it was the five-year anniversary of her daughter's death. She was having a hard time at work crying and they just sent her home because she was just having a hard day. That's when she got the phone call.
Speaker 1:Oh, wow.
Speaker 2:They read the letter and in the letter it said I wanted to make sure I was okay, but I would really like the opportunity to meet you. We're having our five-year anniversary this weekend. They really quickly turned it around and they met saturday. Wow, the coordinator that hosted it took a picture of them meeting and there's a minute long clip where they're just embracing and crying and it is so hard to watch because you can just see both of them. They both needed that and I wasn't even present for that, but it's so moving.
Speaker 1:Did she get to listen to her daughter's heart?
Speaker 2:Yes, so she gets a stethoscope and she listens. And then she pulls her sleeve up and on the inside of her wrist she had tattooed the last EKG strip of her daughter.
Speaker 1:Wow, on her wrist, and it's just, I get goosebumps even just relaying that and whenever I see one of those Facebook videos, like on the train or something, I just start crying on the train listening to somebody's heart or the recipient walking the person's daughter down the aisle.
Speaker 2:Yes, and so when you have those types of connections, it's such a personal thing.
Speaker 1:It's so personal, it's so moving that you think.
Speaker 2:Why can't everybody see this?
Speaker 1:Yeah.
Speaker 2:Nobody would be against donation if they could just experience this.
Speaker 1:We need more stories out there like this, so people can see this.
Speaker 2:You do. You do Just understanding that everybody thinks about donation as benefiting the recipient. It benefits so many more than just the recipient, because everybody who witnessed that is touched by that.
Speaker 1:It's a silver lining.
Speaker 2:It's a silver lining, it's the ripple in the pond.
Speaker 1:Yeah, ripple in the pond, yeah.
Speaker 2:It's like my daughter would say it's not the icing on the cake, it's the whole cake.
Speaker 1:Yeah.
Speaker 2:It's just fascinating.
Speaker 1:Yeah, so we met Renata and she works with families who are having to make a decision about their loved ones, and I gave her a letter for my dad's donor family.
Speaker 2:Yes, I was very surprised by that. That was very timely.
Speaker 1:That wasn't a coincidence. I think that that was. Oh, you knew, that was coming I don't know, I just no, I didn't know that that's who she was. But I think it's pretty cool that I had the letter and that I got to give it to her. So now she's going to call the family and say would you like this letter?
Speaker 2:Yes, we have a letter. We received a letter from the recipient family. Would you like us to like this, pass that on. Like, is she gonna do that today? Probably, really, yes, wow, probably. So let me flip the script here and ask you so how did that feel giving that letter? You know?
Speaker 1:to renata. That's a good question. I have never written a letter and writing it was extremely emotional and I didn't expect that it was 2011. I think about the family every week. There's not a week that goes by where I don't think of them. I know my dad's written letters, but I always kind of thought that his letter trumped my letter. And then I thought well, I could write a letter.
Speaker 1:Why can't I write a letter? And what I was thinking is is how I would feel if I was them to receive a letter, and it would make me very happy. But I know not everybody can go there right, emotionally they can't go there. But I'd like them to know that all these years later we're still very grateful and I think it could be a powerful experience for them to see what my family has made of this donation from them. Because I look at, my dad's donor is the person who initiated my kidney chain. I didn't initiate it. He did Because I wouldn't have done it unless.
Speaker 1:I was touched by transplant and it would make me feel better to know that my loved one's death had this crazy ripple effect and it has, I mean this has become what my life is about.
Speaker 2:Well, it will be interesting to hear the response that you get from your letter.
Speaker 1:Yeah, yeah.
Speaker 2:I hope you do get a response.
Speaker 1:I hope so too.
Speaker 2:But it'll be interesting. But just the possibility of that and I think for that department in our organization I think that's what drives them is they get to experience this all the time?
Speaker 1:That's a happy call time. That's a happy call?
Speaker 2:probably it's a happy call. It's tough work, it's very emotionally draining work and I think it draws that type of person there. They're just amazing people.
Speaker 1:Yeah, yeah. Do they have a chaplain background or psychology?
Speaker 2:A lot of them have social worker background child life psychology. We have a lot of them, some have chaplain backgrounds as well.
Speaker 1:Wow, During our tour, you took me to a lab which is unique to Gift of Hope that most OPOs don't have. Can you tell us a little bit about the lab you have that?
Speaker 2:makes you unique. I love talking about our lab.
Speaker 1:I could tell you like touring the lab as well.
Speaker 2:I love the lab. Well, first of all, I was not a basic scientist, but we did have to have science. We go through medical school and you know we.
Speaker 1:And where were you, a surgeon, by the way?
Speaker 2:So I was. I went to Northwestern OK, I was a six year med student, which Northwestern has this program where if you go to medical school right after high school, the first two years of medical school will count towards the completion of your undergrad degree. So, fun fact, I actually got accepted to medical school at age 17.
Speaker 1:Oh my God, that's because you didn't take recess as a kid. That's right. You told me that you skipped recess so you could start med school at 17. Lori is so amazing.
Speaker 2:I did not want to go to school. I didn't like school. I think that's a common myth that I must love school. Because I've spent so much time in school, I wanted to be a surgeon. School was something I had to do to become a surgeon. So I'm like I don't need to spend four years in college, I just go straight through. So I was very young but I went to Northwestern. But then after Northwestern my training took me all over. So I went to New York to do an internship. I came back to Chicago to do a seven-year residency, I went back to Maryland to do a fellowship and then I went to Texas where I was a trauma surgeon for several years. Then I moved to Kansas City, which explains why I'm a huge Chiefs fan.
Speaker 1:I saw that.
Speaker 2:Yes, I was in Kansas City during some very good times.
Speaker 2:And it's a good time for Kansas City now, but I was there for quite a while and then for the last 10 years of my career, I commuted from Chicago to Quincy Illinois Blessing Hospital in Quincy Illinois. That's a long commute. It is, but it's an Amtrak ride, so it's great. But I would work there for a week and then I'd be home for a week. Trauma surgery is very demanding and that worked out well for me that I could be very, very intense for a week, then come home, recover and work for another week. That's where I met a lot of the Gift of Hope staff, because that's the southern border of our service area. So I actually knew much of our downstate staff much better than I knew the organization, and so in 2019, when the current, the then CEO was starting to talk about retiring, I had really developed an interest in organ donation.
Speaker 1:Why.
Speaker 2:Well, in 2005, you talk about ripple effects and the importance of sharing someone's story. I was invited to a national conference in 2005. Organ donation was really not something on my radar, but at this talk this brave woman told the story about her 14 year old daughter who died waiting for a lung transplant and she had been on the waitlist for seven months. I was flabbergasted. I did not know at that time. I had been a surgeon for 15 years. At that time I didn't know people died waiting for organs.
Speaker 1:Really.
Speaker 2:Did not know. I knew that little about organ donation and I found it absolutely unacceptable. And so that story started me on a track to try and get rid of the wait list by improving how organs are managed during donation and that sort of thing. And so 20 years later I became a CEO.
Speaker 2:But the thing is as a trauma surgeon, if your patient dies, you take that as a personal failure. I mean, it's horrible. If my patient died, it didn't matter how tragic their issue was. If they died, I took that as a personal failure and I mourned it. Organ donation if they died in a manner that they could then provide organs, then it was like a silver lining. At least it wasn't so senseless, right? So that was my stance prior to 2005. After meeting her then I knew about the people who were waiting. Then I knew about the need and that's when I really sort of got really into doing everything I could to make sure we get rid of the wait list. And it was that woman's story and, believe it or not, last year is when I finally met her in person.
Speaker 1:Did she know that she was your inspiration?
Speaker 2:She did not. We met on a Zoom call that I had arranged because it had been the 20-year anniversary of her daughter's death. I reached out to her because she has done a lot to promote organ donation.
Speaker 1:So you've been watching her from afar? Yes, yes. Wow Harry. And so I thought how did she feel when you contacted her?
Speaker 2:She was on with her husband and the three of us were on the Zoom and, yeah, we were all in tears at the end of it. We were all in tears, very, very emotional. But she did not know that her story had had that effect and I told her that there's many people in the organ donation industry that remember that day when she told that story. And, to your point, that's how impactful stories can be. That, literally, is how impactful stories can be, and I know this isn't video, but you see the young woman's. Her picture has been in my office and all the places we've been for 20 years.
Speaker 1:What's her name?
Speaker 2:Her name is Alexa Kersting. She was born January 19th of 1990 and died July 15, 2004.
Speaker 1:And she's got a prominent space on your wall.
Speaker 2:Yes, she does. She's a reminder. She is literally the face of those waiting, and so my charge as a CEO.
Speaker 1:She's cute too.
Speaker 2:She is, isn't she? And the thing that's interesting about organ donation is we don't get to meet the donors. And you know, the thing that's interesting about organ donation is we don't get to meet the donors. We meet them through the stories that the families tell and the pictures that they show us, and so I feel like I know her, but I never met her. But she literally is one of the inspirations for why I do this work.
Speaker 1:She represents those people that die waiting on an organ and they should not. So I kind of sidetracked your story. You were talking about how, in 2019, you started looking.
Speaker 2:Yes, so you've got pandemic.
Speaker 1:I'm going to go into organ procurement.
Speaker 2:I didn't think that. But I did think that this was a time I had gotten very comfortable being a trauma surgeon. But I felt that this was a way I could make an impact on the wait list, and so the CEO was retiring. I had a conversation with him. He was very gracious. He picked up the phone while he was on vacation Because that's what everybody here does, apparently.
Speaker 2:I said I heard you're thinking about retiring. I'm thinking about you know, have you ever thought about maybe a physician being in that spot? And I had known him throughout the course of me being involved with donation and we had a long conversation. He said why don't you go ahead and apply? You know the board will decide and they chose me.
Speaker 1:And what do you feel your biggest accomplishment is since you've been here?
Speaker 2:The organ donor care center at Rush and what that is is typically what we do, laurie. We work with 180 hospitals, 10 transplant centers, and so if someone dies at a hospital, we go to that hospital and every time it's almost like recreating things. You have to work into their schedule and everything else at the organ donor care center. Now, if they died that hospital, we transport them and everything is standardized and what that does it allows us to coordinate things better, manage the donors better and we actually get more organs per donor and we've shown this and I think, think that that has been my biggest accomplishment.
Speaker 1:Congratulations.
Speaker 2:Thank you why rush, so we put out the request for proposal to all the transplant centers. The location was great it's right in the medical district, it's off the highway, it's easy access to both airports, actually, and that they were the ones that responded with the best physical location and everything else.
Speaker 1:So does that mean deceased donors go to Rush before they go to?
Speaker 2:another transplant center in the Chicago area. Deceased donors from hospitals that are not a transplant center will go to Rush. It's the Gift of Hope Center that's at Rush, and so we just are able to standardize that. Sometimes, lori, if we have a donor that may have five organs being allocated you may have a heart going someplace, lungs going someplace else, liver and intestine going someplace else. You could have five separate teams in one area, and to try and do that at a hospital where they're trying to schedule gallbladders and cystoscopies and everything else, as opposed to an OR that's dedicated and super large just to accommodate all those teams for that purpose, makes all the difference in the world.
Speaker 1:And who are the surgeons there? Who are they hired by or who do they work for?
Speaker 2:It depends. So we have surgeons that are hired by Gift of Hope that do mostly abdominal recovery surgeons, but oftentimes if you're getting a heart or lung they send their own teams, be it from Texas or California or wherever they send their own teams. So it depends on which organs are being recovered.
Speaker 1:Does it benefit Russia in any way to have that center in their facility?
Speaker 2:Not really. It sort of breaks even for them for the amount of expense that they put out to have that facility there. That helps offset some of that expense, but other than that not really.
Speaker 1:So they can't go grab an extra kidney.
Speaker 2:Oh no, so we have to continue to allocate according to the list that's given to us. In fact, most of the organs that are recovered from there actually go to other transplant centers, not Rush.
Speaker 1:Based on wait list. It's all based on the wait list.
Speaker 2:So no, they don't. That's a common question that we get. Just because the donor is there at Rush doesn't mean those organs, and most times they don't go to Rush.
Speaker 1:That's because we've all watched way too much Grey's Anatomy.
Speaker 2:Way too much. I can't even watch it. I can't watch it. It's like that's not how that happens. It's like that's not how that happens.
Speaker 1:It's awareness, but maybe not the right kind of awareness.
Speaker 2:Right, that's right.
Speaker 1:And I've twice interrupted you so you didn't get to finish talking about your lab downstairs.
Speaker 2:That makes Get to Hope a little bit more unique.
Speaker 2:It makes your face light up when you talk about it. So of the 55 organ procurement organizations, 12 of us have laboratories there, but there's different types of things. There's infectious disease testing. There's what's called HLA testing to make sure the organs match. There's biopsies that are done. There's all different types of testing. In our organ procurement area. We have 10 transplant centers All of the people that are on those transplant. We have 10 transplant centers All of the people that are on those transplant wait lists. At those centers. They send blood to our center. We hold that blood and every time we get an organ that we want to offer one of those centers, we do a cross match with that blood. We offer that service here and that's very unique for other OPOs. There's only two other two OPOs that have the full range of services. Our lab director is amazing. He's his PhD and also you can give him a shout out.
Speaker 2:Sam Hull. He is the amazing individual. He's our lab director, is just a just an amazing guy. But he also has expertise in what we call HLA as human leukocyte antigen. There's SLA testing, which is swine leukocyte antigen. He's probably one of three in the world who have that expertise interesting yes, and that's just been his PhD focus and so he has that particular expertise as well. So he's actually helped people all over the world with how to do typing specific to pigs out of your lab downstairs yes, as part of a side project.
Speaker 1:Okay, yeah, so you are cultivating things here, I really, it is really, it is really coming to fruition, it really is. I'm glad you're not staying in your lane.
Speaker 2:Yeah, yeah. Well, sometimes you have to get out of your lane. You know, if you think about it, the field of transplantation was people getting out of their lane, yeah, and so sometimes you got to get out of your lane. That's innovation. That's innovation, we got to do it.
Speaker 1:Well, Harry, this has been such a fun morning. Thank you so much for the tour and for your time and for being so free with your time.
Speaker 2:You're welcome and congratulations on your movie. Can't wait for it to come out. Thank you you guys.
Speaker 1:Gift of Hope has been supporting the idea of the movie for over five years now. That's great so we appreciate your support so much, so excited that you're screening it on March 22nd and I hope to see you there. That's great. So we appreciate your support so much, so excited that you're screening it on.
Speaker 2:March 22nd and I hope to see you there. That's great. Let me flip the script a little bit on you. So how do you feel after all this time for it finally coming to fruition? What's that like for you?
Speaker 1:I mean, it's about to be out there, right, and I'm mostly excited. I'm extremely hopeful that it has the impact. Mostly excited, I'm extremely hopeful that it has the impact. The impact I'm hoping for is that some people feel that lightning strike and end up donating and, you know, I think some of it will have an impact, you know, for people in the future, not immediately. So I'm hopeful, I'm excited and I hope it's well received.
Speaker 1:Yeah Well, Lori, it's been said that sometimes you will plant a tree that someone else will bask in the shade, so maybe that'll be I like that. Who said that?
Speaker 2:I don't know. I wish I could tell who it was. I've repeated it, but I don't think I'm the one that came up with it but just the idea of yes, you know, this is, this is the seed that you're going to plant, but you might not even bask in that shade. I think it was my mother that said the best time to plant a tree was 20 years ago. The next best time is today.
Speaker 1:Oh, that's a good one too, yeah.
Speaker 2:So we will continue pushing on this. I'm so glad you came by.
Speaker 1:Any final thoughts you have that you'd like to share with our audience?
Speaker 2:I always leave audience with three things. Number one educate yourself about organ donation. It's absolutely fascinating. Number two is if you're not a registered donor, consider becoming a registered donor. And number three after you register, tell your family about your decision. So those are the most three things I think people need to remember.
Speaker 1:And we will put links in our show notes so that people can do that if they're not already signed up, that's right to giftofhopeorg giftofhopeorg.
Speaker 2:Yes.
Speaker 1:And then what if they're not in the way?
Speaker 2:You can do registermeorg. Your local Department of Motor Vehicles usually will be able to register. So there's lots of different ways. Apple has a health app where you can donate right on the health app.
Speaker 1:Huh, do you ever? Is that a thing that comes up when you're talking to donor families Sometimes, yeah, yeah.
Speaker 2:So Steve Jobs famously received a liver that extended his life and because of that, when they made the health app, he wanted to have the app to be able to go directly to the national registry so that you could pull up your health app and if you're not registered, you can register right on the health app that was really ingenious yeah, I know, zuckerberg did something on facebook too, where you could market on facebook right, do you guys?
Speaker 2:actually reference that like uh I don't know if we reference that one. I know we reference the health app. Um, we have it on our website and I think what we want to do is we want to make it as easy for people to donate as possible. So we just normally tell people giftofhopeorg and people can also remember registermeorg. There's the local registry and then there's the national registry.
Speaker 1:And you just need to be on one.
Speaker 2:You just need to be on one.
Speaker 1:All right. Well, thank you for your time. Thank you for all you're doing for organ donation in our region. We're so lucky to have you leading this effort. Well, I hope this interview has deepened your understanding of the critical work being done behind the scenes and inspired you to consider the vital role each of us can play in supporting organ and tissue donation. Please check out my show notes to get on the registry. If you're not already on the registry and would like to be, you can be a tool in the toolbox that helps end the waitlist for those in need of a life-saving transplant.
Speaker 1:This season of Donor Diaries is proudly sponsored by GiftWorks, an organization dedicated to empowering organ recipients and living donors through education, advocacy and support. In living donors, through education, advocacy and support. By helping patients share their journey and connect with donors, giftworks ensures everyone feels supported throughout the transplant process. We're honored to partner with a team that's transforming lives, one transplant at a time. To learn more, visit yourgiftworkscom. Every conversation can spark change and every choice makes a difference. Thanks for listening and keep inspiring those around you. This is Lori Lee signing off. I just want to feel the sunshine. I just want to feel the sunshine. I share this life with you. I share this life with you. I share this life with you, thank you.
