One is Enough
Welcome to "One Is Enough," a podcast brought to you by the National Kidney Registry. Hosted by two individuals closely tied to the world of kidney donation— one a living donor and the other a grateful recipient— this podcast serves as your ultimate guide to the complex landscape of living kidney donation in the U.S.
One is Enough
Ep.5 - Embracing the Spirit of Giving: Stories of Courage and Compassion in Kidney Donation
As the holiday season is upon us, we're bringing you a heartwarming edition of One Is Enough that defines the true essence of giving. Ever wondered about the emotional journey of organ donation? Together with Terri Thede, the Donor Connect Project Manager for the National Kidney Donation Organization, we share from our own donation journeys along with others that have had a profound impact on our lives. Through these stories, we aim to inspire you to consider the profound impact of living kidney donation. The dedication, motivation, and extreme acts of giving behind these remarkable stories are the embodiment of the true spirit of giving. This holiday season, we encourage you to contemplate the potential to gift life. For more information, visit kidneyregistry.org.
Welcome to this episode of One Is Enough. My name is Michael Allo and I am a Good Samaritan, living Kitty Donor. Today's episode of One Is Enough is our holiday edition and we want to talk about the spirit of giving. The holidays have always been synonymous with charitable contributions, volunteering and the sense of goodwill towards men, but that has even been captured in many holiday songs for decades. But why can't the spirit of giving also include living kidney donation and how it embodies making a positive difference in the world with no expectation of receiving anything in return? The goal of today's episode is to share some of the most moving kidney donation stories that I've experienced in becoming involved in the transplant industry, first as a donor and later professionally, with the hope that hearing these stories might connect you with that alternate but equally important spirit of giving.
Speaker 1:I am joined today by Terry Thede, who is currently the Donor Connect Project Manager for the National Kidney Donation Organization, or, as the industry knows it, nkdo. In her role with the NKDO, terry connects individuals who are considering kidney donation with living kidney donors, providing them with support and guidance and sharing their personal experiences. The goal of the Donor Connect Program is to ensure that the prospective donor feels comfortable, safe and informed throughout the screening and donation process, and donor mentors like Terry and myself are able to provide them with that safe feeling. Right, terry, that's absolutely correct. In addition to her role with NKDO, terry is married and her husband's name is Brad, and I had the pleasure of meeting him several times. She has a rescue dog called Nelly, and often I call Terry early in the morning, probably too early, because I'm on the East Coast and she's in some other time zone and anyone that knows me knows that I cannot figure out time zone math and there's usually some wind in the background. Right, you take your morning walks with Nelly.
Speaker 2:That's correct and I'm only in the central time zone. It's only one hour, but it does seem confusing for you at times. It is, it's only one hour.
Speaker 1:Is it forward or back? I am one hour behind you, one hour behind me. I'm never going to be able to figure that out. You also have three adult children right, and they all have rescue dogs or pets.
Speaker 2:Right, they all have a rescue pet. The two boys have dogs and my daughter has a rescue cat.
Speaker 1:Oh, you guys are such a giving family when you're not working towards normalizing living kidney donation. Terry enjoys cheering for the Minnesota sports teams and you also love to travel, I assume, with Brad right.
Speaker 2:Yes, it usually is with Brad, although sometimes with work it's not with Brad, but it is with Brad usually.
Speaker 1:Yes, so I'd be remiss if I also didn't say that Terry is a close, dear personal friend of mine and I am absolutely thrilled to have her on this episode of One is Enough for the season of giving. So, Terry, thank you very much for taking the time to speak with myself and the millions of listeners that the One is Enough podcast has.
Speaker 2:Yeah, that millions thing is a bit intimidating, but hey, we need to get the story out.
Speaker 1:If you keep saying it, one day it will be true. That's why I keep saying it. So you may have noticed that I did not include Terry's kidney donation story as part of my introduction, so I was hoping that, to start us off, that you would share your donation story with us, since that event is what is responsible for you actually being here today.
Speaker 2:That's correct.
Speaker 2:So I actually was scrolling through Facebook in December of 2016 and saw a story about a little boy in Eastern Kentucky who needed a kidney and I've always been a blood donor, I've been on the bone marrow registry for a few decades now and I thought this seems like something I can do and I've got three children, so knowing what life must be like for that mother trying to help her son really hit me.
Speaker 2:So I reached out to the number that was in the Facebook post that was shared by a friend of a friend. So never doubt the power of social media to get your story out. And I reached out to that transplant center and they had me do a little bit of testing and some interviewing remotely, because I lived about five hours away from that center and then eventually went to the center for a full day of testing and had some follow-up testing and we were deemed to be a good match. We had our surgery date set and about six weeks ahead of that surgery date I got a phone call one morning that said a deceased donor became available a kidney. That was a really good match for that little guy and they went ahead and took that kidney.
Speaker 1:Wow.
Speaker 2:So at that point I felt a little bit lost. I felt like I'd gone through all the testing and I wasn't resentful. I was very, very grateful that he got the kidney sooner than later, but it left me at a little bit of a loss as to what to do. But through the process because I'm a researcher by nature and I like looking things up I knew that I had other options.
Speaker 1:I know that for sure.
Speaker 2:So because the transplant center where I was was about five hours from me, I knew, living in central Illinois, that there were several transplant centers in the Chicago area. So I just one day picked up the phone and started cold calling transplant centers telling them that I was already approved for donation. And the transplant center where I eventually donated is Loyola University Medical Center. And the donor coordinator who answered the phone that day she will still talk to me about this that it just really threw her off because it wasn't her phone that she answered, it was someone else's.
Speaker 1:Oh, wow.
Speaker 2:And when I said that I was already approved for donation, she thought, kind of will bless your heart that you've signed up to be an organ donor. And then when I explained, no, no, like I've already been, like I'm approved to be a living donor, she took that to the team and then they brought me to Larry. I went to Loyola, went through a little bit more testing, most of the testing transferred over, but then they gave me the opportunity Do you want to proceed quickly? Will you allow us to put together maybe a longer chain? At the time, loyola University was not part of the National Kidney Registry, so they were doing matches on their own. So I opted for option number two let them put together a little chain. And then, a few months later, I donated. So that was August of 2017 that I became a donor, and on that day there were three donors and three recipients. We all donated at that center on the same day.
Speaker 1:Wow. So how long was that? How long did you do the testing at the first transplant center?
Speaker 2:Probably just a couple of months. I mean, I talked to them, I did the first testing in mid December, so I have to think that the holidays may have even interrupted that pace just a bit. But I mean, I'm pretty sure I was cleared to donate by February or March of 2016. So it was two to three months.
Speaker 1:So how long was the process at the second transplant center?
Speaker 2:At Loyola because most of my testing was done but they did want some center specific testing. I would say it took a couple of months to get that testing all done and for them to put together the logistics of having three donors and three recipients all have surgery on the same day.
Speaker 1:And have you so. At the time, your recipient was a stranger. Have you since met your recipient?
Speaker 2:I did meet him after surgery, so Loyola, like many centers, takes a fairly conservative approach to non-directed donors meeting their recipients and so they did not have us meet ahead of time, although later we realized we were sitting right across from each other in the waiting room the morning of surgery, I was under the assumption that I was donating to a woman because at some point someone on the staff said you're donating to a female, so I kind of ruled this gentleman out from the equation.
Speaker 2:As I scan the room that morning, we found out later it was him. They kind of had a switch at the end. So Loyola's policy at the time was they wanted everyone to wait about three months. They wanted people to be fairly well-healed physically, emotionally, that things were feeling back to normal. And then it's always my understanding is it's always up to recipients right that I couldn't force myself on my recipient, but they would reach out to the recipients. All three recipients wanted to meet all three donors, and so we actually met the day before Thanksgiving in 2017, which was about three months after At a press conference in front of the Chicago media.
Speaker 1:So this is almost like an anniversary of your big meeting. Yeah, yeah, we're coming up on Thanksgiving soon.
Speaker 2:Just about. So because they understand that media is generally not so busy the day before a major holiday, they knew they could get a lot of media in the room. So all six of us were there and we had people who had different ethnic and language backgrounds. So it was very interesting. We could hear translator speaking. We had Telemundo was there, so but it was a. It was a great day. So I got to meet him for the first time there. Since then I've met him at a couple of other events. We did the National Kidney Foundation Walk in Illinois one year where I got to meet his family. That was. That was pretty overwhelming. So yeah, we've seen each other. But then the pandemic hit, so that slowed it down. We also went to the Illinois State Capitol to lobby for donor protections in the state of Illinois. We were there together, speaking with representatives in Illinois.
Speaker 1:That is awesome. Do you have any? You know, I spoke to a couple of people and they the meeting. It seems like you didn't have this experience, but the meeting of their recipient was not what they hoped it would be. I know we're going to get to it in a little bit in the podcast about the perspective donor accountants that we speak to, but what, what's your, your take on that? It seems that you had a positive experience, right?
Speaker 2:I did have a positive experience. He was very, very grateful. He was a gentleman who's older than me, and his wife was one of the other two donors that day.
Speaker 2:So, his wife was donating on his behalf and so I actually met her before I met him, because they kept the donors and the recipient separated before the press conference but we very quickly put together who had donated for who. So we kind of had our emotional moment and, as both of us being donors, we both recognized you know what recovery was like. We still stay in touch I actually probably interact with his wife more than I do him, just because he doesn't enjoy social media and we stay. We kind of stay current that way with with I do with his wife. So, yes, it was. It was a great experience.
Speaker 2:He was exceptionally grateful he had not had to go on dialysis. He would have been on dialysis by the time our surgery occurred had they not known my kidney was coming. So that was kind of a great feeling. He was very grateful to have not had to go on dialysis. He is a veteran who contracted or not contracted he had kidney disease as a result of his service and exposure to Agent Orange. So he was, you know, this kind of snuck up on him and he was very grateful that he was able to not go through dialysis.
Speaker 1:Wow, that's amazing. Obviously, you know you want to help anybody, but that your kidney went to a veteran. I think is is even more impactful.
Speaker 2:It was. It was kind of funny One of the things he told me when we met. He's like I feel like you should, you should get all the veteran benefits, like you should get a good parking spot and you should get discounts when you go out for dinner and all those things. He goes you, you're a veteran as far as I'm concerned. So that was. That was very nice of him to say.
Speaker 1:Oh yeah, I wonder how the government would view that You're like listen, my organ is traveling around in a veteran. Can I, you know, walk in and I can get you know to one of the veterans hospitals and I can get care there.
Speaker 2:Yeah, but your organ will. It's a very interesting, interesting thought for sure.
Speaker 1:So Anything else you want to share about your specific story.
Speaker 2:No, I mean I was just very grateful for the care I received at both centers. I mean the original center who cleared me for donations said they could have put together, you know, found a donor for me as well. It just seemed to make sense for me to be a little bit closer to home and, knowing, you know, the quality of the Chicago transplant centers that I spoke with was very high, I didn't have any reservations about moving and I was trying to look ahead. You know, for my family being five hours away was going to be tricky but I was willing to do it. But then, when that little boy no longer needed my kidney, it seemed to make sense to stay a little bit closer to home. So you know, he is, you know, doing really well for six years out from that donation. His wife is still doing really well as a donor. So there is nothing about the experience that I would have changed.
Speaker 1:So you mentioned that Loyola at the time was not part of the NKR, but I'm happy to report that they are now an NKR center. I don't know exactly unless you do, I don't know exactly what year that they became an NKR center. Hopefully this is not a touchy subject. But because you didn't donate at an NKR center, you weren't afforded the protections and supports of donor shields. I mean, I know you know the risk of God forbid something you know happening to your existing kidney is really small, but do you have any? You know feelings about that now that you've immersed yourself in donor shields and know all about donor shields, do you? Obviously you wouldn't change you know right your donation, but because of the people that benefited from it. But I don't. Can you just speak to that for a minute?
Speaker 2:Yeah, I mean, I think that's why a lot of the donor mentors who mentor in the program that I help manage do that work, because we didn't receive the protections that might have been available to other donors. I don't resent, you know, I didn't know what I didn't know. Loyola was just barely rolling into the NKR at the time, so it was very new for them as well. But I do feel there's value in those protections and if, given the opportunity to donate at a center that provides you with those protections versus one that doesn't, I would definitely think long and hard about making your decision based on that. I did have some protections available through NALDAC, which is another organization that provides protections. They're different, they're not as deep and comprehensive as what's provided by the NKR, but they did provide a little bit of financial relief for the travel involved with going to Chicago on a few different occasions. So yeah, I mean I would definitely.
Speaker 2:It's easy when you're wrapped up, especially if you're a non-directed donor. Well, I guess either way, whether you're directed or non-directed, that you just want to do it right. It doesn't matter. I'm never going to need a kidney. I'll figure out how to make the finances work, or it's okay if I fly six hours to get to a particular transplant center. All of those things look very different post donation, or they can, and that's where sometimes people are like this is going to be really hard to do my follow up care six hours away, right, and this was a little more difficult financially than I thought it would be. So that's why, as a mentor, I'm very grateful that we can share what those protections are with people. It's always up to individuals to make the choice whether they want to travel or whether they care about protections or whatever, but at least they're available, and I think that's where the real value from the NKR comes. I mean, the science they use is phenomenal I mean from a matching standpoint but the level of protections that they provide to donors are unmatched.
Speaker 1:I just want people to be fully informed. We have 102 transplant centers within the NKR and I just want donors to be able to make the best choice for them. So please don't tell my CEO that I said this. I mean, I just I want people to donate and if it's at one of our 102 transplant centers, then great, that's fantastic. If it's not, that's also good. If that's what works for them, I just hope that they are aware of what's out there to support and protect them, and that's one of the reasons why, of course, I love the Donor Connect program, because I think the donor meant to do a great job of informing donors on all aspects of donation, whether it's at an NKR center or not an NKR center.
Speaker 2:Right. And if for some centers we really don't know what might be available, we know with the NKR centers we know what's available, but for those centers that aren't, what we do is we encourage those donor candidates to speak with the social worker, speak with the donor coordinator, early in the process, to understand that I think sometimes a donor candidate can be a little concerned about raising those issues early, but it's early where the donor coordinator and the social worker can be of the best assistance by making sure that the protections that that candidate needs are in place, whether they're through the NKR, whether they're through another organization. So I think that's where the benefit of having a donor mentor comes in, is it encourages those donor candidates to help advocate for themselves early in the process.
Speaker 1:So, terry, collectively, you and I have spoken to countless people during the course of their living kidney donation journeys, with each donor mentored. The significance of what they're giving never changes. It is no less of a gift when given to someone you love or complete stranger. The impact of the gift being given rarely wavers. With a healthy, well matched kidney, the recipient can enjoy a new lease on life, returning to a sense of health that had previously been kept from them. So what is unique to each donor is the why. Right, terry, how many times have you been asked why that?
Speaker 1:is very correct, more times than you could to count what prompted them to give this gift in the first place. So when I invited Terry to be a guest today, I asked her to come prepared. I gave her homework right, terry.
Speaker 2:That's correct, I'm ready.
Speaker 1:I wanted to know some of your most memorable and spirited donor stories that you've been involved in or that you could share with us today. So are you ready, Terry Thede, to share some of these stories at this most giving time of the year?
Speaker 2:I am, I am. I have two wonderful women that I interacted with, and I would love to share a little bit about what brought them to donation.
Speaker 1:So chivalry is not dead here. On One is Enough. I am going to allow Terry Thede to share one of her stories first.
Speaker 2:Great. So the program, the Donor Connect Mentoring Program, just started in early 2021. So it's a relatively new program, although this year we will have reached out to more than 40,000 individuals. And so this woman who I became connected with in December of 2021 was relatively new to the program. So we were still kind of figuring out our way.
Speaker 2:And this woman was very, very interested in. She wanted to help her son. Her son had had a living donor transplant at a young age I believe he was a young 20-something when he now needs his second transplant. She knew, as his mother, that she was not a match to him because of blood type incompatibility. However, she was still desperate to help her son. She actually walked in a local store one day in the area where she lived on the East Coast and saw a flyer for someone who needed a kidney, and that person on the flyer listed the blood type and she felt like this is a blood type compatible person. I can help this person and maybe karma powers, god, whatever you want to believe in would bring that same kind of help to her son. So she basically wanted to donate to a stranger in the hopes that something would go right for her son and he would get a kidney from a stranger as well.
Speaker 2:So when she explained all this to me, you know it was a very emotional conversation because people talk a lot about non-directed donors and I think Mike and I both fall in that category that they could never just give a kidney to a stranger and I don't want to discount the emotion it takes to do that, to get to that spot, to do it. But the idea of donating to or for someone you love, to me is a much more difficult process because it seems so obvious Like it's my son. Of course I'm going to help him. But that comes with a lot of emotional baggage and that's a lot of what donor mentors talk to our candidates about is. They feel like this is just a gimme. Of course I'm going to help, but they failed to take into account how emotional that is.
Speaker 2:So for this mom, obviously a very emotional situation. She wants to help her son. She knows she's not a match. So I started to explain to her the National Kidney Registry Voucher Program that she could donate. It would go to a stranger but it would get her son his kidney. Wow, and I think there were tears involved in that conversation. She was flabbergasted that that program existed because she was just willing to give it to a stranger with fingers crossed Right. She didn't realize she could give it to a stranger and it would ensure nearly ensure that her son would get a well matched kidney because of her donation. She was immediately signed me up. What do I do? Let's go Right.
Speaker 2:So she went through all of the testing. There were a couple of hiccups along the way. Her son is the recipient was struggling as well. Although his medical condition didn't affect her being able to be tested, she kept moving forward. She was approved to be a donor. She donated relatively uneventful recovery, she did pretty well and then her son became eligible for donation and found his well matched kidney. So that happened just last summer summer of 2022. Sorry. So it all moved relatively quickly for them when they knew about the voucher program and they were at a very well equipped, very high performing national kidney registry center. So they were able to keep both of them moving well through the process.
Speaker 1:So the voucher program? Was that answer to her prayers, right?
Speaker 2:Absolutely, wow, absolutely.
Speaker 1:So she wasn't aware of that until she spoke to you with the donor mentor right.
Speaker 2:I was. I was her donor, mentor.
Speaker 1:She wasn't aware of that until she spoke to you.
Speaker 2:That's correct.
Speaker 2:So it was great news to give her because, I mean, as mentors, we all know about that program, but getting to share the news that you can help, even if you're not blood type compatible is, and even if you are, I mean we have donor candidates that we encourage to ask questions, learn more about the vote voucher program for lots of reasons whether it's timing, whether it's a mismatch, whether it's simply wanting to ensure that you get the best compatible kidney for both you as the donor and for your recipient.
Speaker 2:So they had that last summer and fall he received his kidney and I just reached out to her recently which was kind of odd because I had just been thinking about her a lot and about the situation they went through and reached out to her Just to see how they were doing and she shared that her son had a new job, he was stable, he was engaged to be married, and then it was a couple of weeks later that you asked me like, hey, do you have any stories you would like to share? And I'm like now I know why she came to mind. Right, she came to mind and then I reached out and said Are you okay if we share this? And she was absolutely okay. She's very grateful for what the voucher program did for her and her family and her son, and to see him just transformed has been, you know, a wonderful event in their family.
Speaker 1:I'm sure you don't view it this way, but you literally like her angel. Angel of information.
Speaker 2:Angel of information. That's funny. My recipient called me his angel the day he met me, so that's that's a funny word to use. Not many people who know me in real life would refer to me that way.
Speaker 1:So it's kind of nice. I consider you to be an angel, terri Thede.
Speaker 2:Okay, great so but yeah, they are, they are doing really well and yeah, it's just I mean, and that's what makes mentoring so valuable. I think you know we love providing education, we love, you know, helping donor candidates answer questions. But to see you know their awareness when you're like you mean I'm not sure I see a like awareness. When you're like you mean I can do this and I can help more than one person with one donation, that just doesn't even seem possible. But when you explain the National Kidney Registry, their pool of donors and recipients and how they have the science to make the magic happen, that's a fun story to get to share.
Speaker 1:It's awesome that when we were coming up with the idea of this podcast, that came to my mind immediately was it was the birth, during the birth, of donor connect. So we didn't have all the fancy computer stuff in the background, it was more of I think it was like coming into like spreadsheets or something at the time in the beginning. But I met a couple at one police plaza. The husband works for the police department and their name is Shannon and John Mulroy and they're okay with me sharing their information. She's a huge advocate for organ donation and living kidney donation and their daughter has FSGS, I believe, and needed a kidney transplant and the parents could not donate to the daughter and ultimately I believe it was a neighbor who donated directly to their daughter. So I came, I think, into the picture. I think it was either right after the donation, if I'm not mistaken, and I was talking with them, talking with them about the NKR. I didn't work for the NKR at the time. I was working with, actually, your organization, nkdo, and I was just explaining to them about the voucher program and they said what? They had no idea that the voucher program even existed, and the mom was like I would have done that. I said, well, your daughter's young and she might, unfortunately, but she might need a kidney in the future. We have a program now called the Family Voucher Program and you could donate into the NKR and name her as one of the Family Voucher Holders and that's okay because she's not in imminent need of a kidney, she has a kidney, she's healthy. It could be 20 years, hopefully, before she ever needs a kidney. And the mom was like what she's, like I could do, that I could donate to a stranger today and then in the future my daughter could benefit. And I said, yeah, absolutely so.
Speaker 1:Why I chose this story? Because you're a parent, I'm a parent. There's probably millions of parents listening to this podcast, but it really hit home of what parents would do to help and save their children. And Shannon and John both got tested to be Family Voucher donors within the NKR and Shannon beat John to the finish line and she donated first and named their daughter as one of the voucher holders, and then John subsequently donated. So their daughter has two vouchers I would basically, we'll say, set for life. I mean, she has a living kidney now and then God forbid, she needs one in the future. She'll be able to activate one of those vouchers and then she still has another voucher.
Speaker 1:So I just thought it was so amazing that these parents learned about this after their daughter's kidney donation and went forward, of course wanting to help a stranger, but then also securing their daughter's health basically for the rest of her life, and I'm like what better giving story can I come up with as that, and I had the pleasure of, we'll say, sort of being there early on donor mentor. Before we called ourselves mentors, I think we just were like kidney buddies or something like that, or people that talk to people who were thinking of donating their kidney, but I'll never forget them. And she still continues. Often I see her posting on Facebook and stuff about all the advocacy that she's doing and she's doing phenomenal work, but I just like, wow, I can't think of a better gift than to secure your child's health.
Speaker 2:That is an amazing story, and for that little girl to have two vouchers ready to go I'm sure does provide her parents with a lot of relief as to her future.
Speaker 1:Absolutely, and I don't know what the chains were like, that they potentially started. But two strangers at least got the kidney from the mom, shannon and John, and those people were removed from the deceased donor list. But they could have started a chain where all the people were removed, so that ripple effect just keeps going, and keeps going and keeps giving. But I think you have at least one more story that you want to share, right?
Speaker 2:I do so. Very early this year, like in the first week of this calendar year, I met a woman who was interested in donating to a stranger. She is in her mid-60s, she lives in the same city as one of the top transplant centers in the country and she had always just wanted to be a donor. So she started the process. She worked through the NKR initial screening and then selected that center that was in her own city to be tested. She did run into a bit of a complication because she was slightly overweight and she kind of lost a little bit of hope over that. And we had just as an organization, as NKDO recently became affiliated with an organization loosely connected to a program at the University of Chicago, but this program is called Project Donor. They had secured funding and staffing for a very specific market. They were there to help people who were living donor candidates who needed to lose weight before surgery, lose that weight. They would provide services through three different organizations through Weight Watchers, through NUM, through a group called On Point, and these services were provided free to living donor candidates. They would provide coaching service. They would stay in touch with the donor candidate. They would work with their transplant center if the transplant center wanted that interaction.
Speaker 2:So when I shared the ability for this woman to reach out directly to this program, she was thrilled because she was getting ready to start on one of those programs on her own, to pay for it out of her own pocket, which was not a financial barrier for her. The idea that there would not just be the program but someone who would also be helping her through the process, checking in on her, was just invaluable. So I think her goal was she needed to lose 20 pounds. She's an overachiever. So she went ahead and lost 25. And through the process her transplant center knew she was working with this program and kept tabs on her. And once she hit her goal then she proceeded with her testing. She donated just this fall, late this summer this fall.
Speaker 2:Through that process she also became aware of a family friend who needed a kidney. His situation was a little more complicated because he is also a veteran, so she was able to name him as a voucher holder, so she hopes at some point that her donation would be helpful to him. So this was a really cool story because this was a woman who was 65 years old when she decided to start this process. So I think for some donors it's always something that they've been a blood donor, they've been on the bone marrow registry and when they hear about the opportunity to be a living kidney donor, it just makes perfect sense. If I can do this, then I'm going to do it.
Speaker 2:And just because she was 65 when she made that decision, it didn't keep her from moving forward. It's not just moving forward, but moving through a fairly substantial hurdle of losing weight and staying committed to keeping it off, because the program she works with doesn't just get the candidate to wait for surgery. They support them for a year after the surgery. So that project donor program has been instrumental in leading to several donations. In fact, one of our mentors was mentored by another mentor who referred her to that program.
Speaker 1:Mentors are everywhere she lost weight right.
Speaker 2:We've got like mentor grandparents now. So one of our mentors actually was a beneficiary of the project donor program, lost weight to donate and now she's mentoring other candidates. So it's an amazing program. It's a wonderful team to work with. My understanding is I think the National Kidney Registry might start doing a deeper integration with that program to help people who need to lose weight in order to be able to donate.
Speaker 1:I think we are down that pathway. Yeah, we're speaking with a project donor and trying to offer it to people who have been ruled out due to BMI, to give them a free service, an opportunity to donate, just like that in the story that you just described.
Speaker 2:Right. So she has been a delight. She was passionate about wanting to be a donor. She was joyful because the center where she donated is, like I said, a very large National Kidney Registry Center. She learned that her kidney would actually stay local because the need in her own city was great enough that her match was found there Right. So she was even more thrilled with the idea of helping someone local, although she understood it could have been flown to Maine or flown to California. But she was very excited that it got to stay right in her own city. So she plans on meeting her recipient at some point. She's very excited about that opportunity.
Speaker 1:Wow, we could probably sit here all day and tell stories, right?
Speaker 2:I know. I mean we've got lots, we have you know in this calendar year alone. Like I said, the donor connect program started in early 2021.
Speaker 1:Right.
Speaker 2:And last year we were part of almost 200 donation stories. There were mentors associated with almost 200 in 2022. Wow In 2023, we estimate that number to be 650.
Speaker 1:Wow.
Speaker 2:And our donor connect team has talked to people through 650 donations. So, yeah, the stories just keep coming and some of them are based out of sadness, based out of loss and wanting to honor someone who couldn't get a transplant or couldn't be a donor, and some of them are just this is something I've always wanted to do and when I found out I could, it seemed like the perfect time. So people come to donation for a lot of reasons and we're just here to help them understand that it's normal. So, as someone in our organization shared, sometimes somebody doesn't know another donor. So just knowing that, you know I was 54 when I donated. I'm in better health now than I was when I donated. So just the idea of normalization for donation is a lot of what mentors do. But through those processes we hear a lot of stories. We're often on the list of people. I've gotten text messages from hospital rooms where it's like I did it I'm part of the one kidney club.
Speaker 1:I've got nos from the recovery room. They take a selfie and they're like I'm done, yeah, yeah.
Speaker 2:So you definitely become part of their story in a really big way. Some people just want to talk to a mentor once and then they you know they only interact want to interact with their transplant team. That's perfectly fine, and some people stick with their mentor to the very end and they end up meeting their mentor. I've met several of the people that I've talked to through donations, so it's a great opportunity for donor candidates to get connected to someone who's done what they've done, because, while centers are very, very highly skilled in transplant, they don't often have someone who's gone through the process available for their donor candidates. And that's the. That's the role we fill.
Speaker 1:Well, I'm not sure if you listen to our other podcast, but we do have one from Kari Rinecourt. You know who. That is right.
Speaker 2:I do I do.
Speaker 1:Yeah, it's one of the very few you know medical professionals who ended up donating her kidney and we did a great interview with her. I think it's called like donation 101, something along those lines, but that's another one of our fantastic selection of podcast episodes that are out there. Interestingly, I didn't know the stories that you were going to tell today and you know I was looking for like extreme. You know acts of giving and kindness and you know the first one I told about Shannon and and John I thought was one, and you know this one connects to the story that you just told. I think you've met him at least a few times. He's a civilian employee of the New York City Police Department, stefan Trotman. So this is a, you know, to make the story short, but it was.
Speaker 1:He's a gentleman who was very obese, you know, very, very overweight and he lost over 200 pounds so he could donate to a stranger.
Speaker 1:He was a non-directed donor and he is such a remarkable person, has kept the weight off and and runs and and you know all that kind of stuff and still looks healthy and he's, like you know, skinny as a rail when I see him. But he was so moved by the act of giving and he was sort of, in a sense, crushed, you know that his weight was preventing him from from helping someone, and I just, you know the dedication to lose, you know, not just 10 or 20 pounds, but to lose over 200 pounds, so you can have a procedure to, you know to, to get an organ removed from your body so you can give it to someone else to to help them out. I just think is is remarkable. So that's, that's my second story. Stefan Trotman, who, I would say, went to extremes and talk about you know that's I'm still amazed by it To the fact that he, you know, did that, dedicated himself, you know, and stuck with it and had a very success, and actually he's a double donor.
Speaker 2:That's right. I was just going to ask that isn't this the gentleman who ended up being a liver donor after he was a kidney donor?
Speaker 1:Yes, he was so, you know, moved by the whole process and how it made him feel. You know internally, you know spiritually, I guess, if you will, that he looked into, you know, doting his liver, which is called a double donor they're very, very rare out there and he ended up doing that as well and he's doing phenomenal, doing great.
Speaker 2:Yeah, we actually two of our donor connect mentors are double donors. So while there's not a formalized program for mentoring people who are considering living liver donation, we do have a couple of women who've done that, who are, you know, like to be asked. But often I think they've always ended up speaking To people who want to ask them about liver don't know. They were both liver donors, like Stefan. That's the most common path is you donate your kidney, then you donate your liver, although it can happen either way. But yeah, it's. It's great to have their insight into that extra step, because it is a different process to be a liver donor. I mean, your wife is one, so you know that as well. It you know, there's just different testing. It's a much different surgery. It's a much different recovery.
Speaker 1:So having those two women are more difficult to.
Speaker 2:That's what I said it is. It is a. It is tougher. I mean I, you know, I went home the day after surgery when I donated my kidney, and I don't think liver donors have that luxury.
Speaker 1:They do not. No, they do not.
Speaker 2:At least as a donor. I think we also want to, you know, help people move those obstacles that they see out of their way, Because I think there are a lot of people who think this is a great idea, but they're like, oh, I need to lose 25 pounds.
Speaker 1:What am I?
Speaker 2:going to do. We've got something for that, and it's not that we can't remove every obstacle, but through educating donor candidates and sharing what resources are available, I think we can't get people closer to something they already wanted to do. I could never convince someone to be a living donor, right? I mean, I don't have that kind of Sven Galle sway over people. So I mean, we're only talking to people who are already showing an interest, but you know, a lot of them are still facing an obstacle, so we're always happy to try and help them get those out of the way.
Speaker 1:So, terry, we started off this podcast by asking, or by stating that we're always asked, why, right, why did you donate? Why did you feel compelled to do it? So you know, to bring it back now that we're getting towards the end here, wouldn't it be awesome if the millions of people who were listening to this podcast in 2024, if we were able to answer their why or sort of pique their interests and, you know, kind of like satisfy that that, why?
Speaker 2:I think that would be great. I mean, I responded to a Facebook post and so I think you never know when someone hears the prompt that they've been waiting for. We're not, like I said, I don't have the power to convince someone to donate a kidney, and transplant centers frown on that. If someone's always been interested, then I think hearing this podcast and the stories of and I think a lot of it is. You know, hardly anyone goes through donation and everything's completely smooth sailing. You know, I had to do a couple of extra tests because of my father's health history not even mine just to make sure I didn't have a condition that he had. So I mean, they're always going to be bumps along the road, but having that mentor or someone to talk to to let you know that this is normal is a great tool and keeps you reminded of what your why is.
Speaker 1:You know, a good friend of ours says all the time, why not?
Speaker 2:Yeah, yeah, I mean, if you're a healthy individual. I mean you've had people on who've done amazing physical things after they've donated, sometimes things they didn't even do before they donated. So it doesn't slow you down physically and I think you'll hear I think there's a statistic like well over 95% of donors would say if I could do this again, I absolutely would and I would definitely put myself in that category.
Speaker 1:I want to thank Terry for being here today and our thanks to the National Kidney Donation Organization for being such a valued partner to the National Kidney Registry as we seek to support more and more individuals in becoming living kidney donors. I also want to thank all of our listeners the millions and millions that are out there, and I want to wish everyone a very joyous holiday season that is generous in the spirit of giving, because it's the most wonderful time of the year, as always. If you are looking for more information on living kidney donation or you'd like to start the process of being screened as a potential donor, please visit kidneyregistryorg. You can learn more about the podcast by visiting kidneyregistryorg. When you're there, you can sign up to be on our email list so that you'll be the first to know when we drop a new episode and, trust me, you want to be the first to know.