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
2 Pastors and a Kidney Voucher | EP 33
A spiritual calling, a kidney voucher, and two pastors reconnecting after decades apart—this is no ordinary transplant story.
When Jim Pearl was diagnosed with Fabry's disease in 2004, he had no idea his journey would lead him back to Jeff Barker, a seminary friend from the '90s. After five years on dialysis, Jim clung to his mantra: "In the waiting, God is working." Meanwhile, Jeff saw Jim's Facebook post and felt a spiritual nudge to step forward, despite knowing little about kidney donation.
Though not a direct match, Jeff became a voucher donor donating at NYU Langone. His kidney went to someone in the NKR system, and Jim received a kidney voucher due to Jeff’s donation. Just three months later, Jim received his transplant at University of Utah Health.
For both pastors, the experience was deeply spiritual. Jim named his kidney "Gigi" (God’s Gift). Jeff sees the donation as part of Christian incarnational theology—"We often think about giving money, but we can give our very selves."
GiftWorks supported them throughout the journey, helping Jim share his story widely and guiding Jeff through the donation process. Their experience shows how organ donation not only saves lives, but also renews connections, deepens faith, and transforms both donor and recipient.
Jim’s advice for recipients: "Share your story as broadly as possible. It only takes one set of eyes." Jeff encourages potential donors to remember: "Your first yes is not your final yes. Each step requires thought, and each decision matters."
Learn more at yourgiftworks.com and consider how making yourself available to others can be a part of something greater.
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.
Speaker 1:Hello and welcome to Donor Diaries, a podcast sharing the inspiring stories of ordinary people making a difference through living donation. Hello and welcome to Donor Diaries, a podcast sharing the inspiring stories of ordinary people making a difference through living donation. I'm your co-host, lori Lee, and today I'm thrilled to have my dear friend and co-founder of GiftWorks, amber Kahn, joining me as a co-host, which is new to both of us. At GiftWorks, we partner with transplant professionals to help their patients find living donors, while ensuring the donors have a safe, positive and well-informed experience as they explore living donation. It's all about education, support and advocacy. Today's episode is extra special because we're sharing both sides of a story Jim Pearl, the recipient, and Jeff Barker, his donor. They're not only connected through this life-changing gift and gift works, but they're also pastors and close friends with a really beautiful story. Let's dive in and hear their incredible story about faith, courage and the power of human connection. Welcome everybody.
Speaker 2:Jim, can you tell us a little bit more about your health journey and also how you got to the point of needing a kidney transplant?
Speaker 3:Thank you, amber. I was diagnosed with Fabry's disease in 2004. Like most people, I had no idea what it was, and so it started a journey of discovering what that was, what that meant and how my life would change because of it. And one thing that Fab Reyes disease does is it affects the kidneys. So over the course of the years, we slowly watched my kidney function decline and decline, until it was December of 2019 that my doctor says I don't think we have any other choice but to put you on dialysis. And so I started dialysis in May of 2020, right as COVID was all ramping up and everything.
Speaker 3:And so dealing with new dialysis, dealing with COVID and all the implications of that, it led to a lot of drastic changes. At that time, I went on disability, so I was no longer working. After the first six months or so, I started to look for a kidney donor, because that's what I was told to do by doctors and that sort of stuff, and so I was on dialysis just three months short of five years and going through that really five times a week. So but that's kind of how I got to where I needed a kidney.
Speaker 1:And Jeff. Were you aware that Jim was on dialysis from 2020 onward?
Speaker 4:I don't know exactly when I became aware of it. I don't know what was posted on Facebook, right? I can't remember. Even I don't have a timeline in mind as to when I became aware of that particular situation.
Speaker 1:Well, what made you step forward, jeff, to become a donor, and what was it like early on in the process for you?
Speaker 4:A little over a year ago, jim posted something on Facebook about needing a kidney transplant and I saw it and this is the way I describe it. I mean, I can describe it no other way other than I felt what I believed to be God's Spirit prompting me to make myself available. I'll be honest, I had, at that point, no idea what the process was, I had no idea what it would entail, but I just felt that I should make myself available Over the weeks from there, once you register, you get contacted and all of these things then begin to happen. Questions begin to be answered. I begin to learn new things about all of that, and so, really, if I ask what it was like for me early in the process, it was a journey of discovery before I even got to diagnostic work and everything else that was going to happen after all of that.
Speaker 1:And can you guys maybe tell us a little bit about your relationship? Because, jeff, if I remember, when you and I spoke for the first time and I asked how you knew Jim, I think you said well, we used to be close and now we're like the people who send Christmas cards to each other.
Speaker 4:Is that what you?
Speaker 4:said yes, that's exactly how I said it, laura, right, because we were in seminary together, right, that's exactly how I said it. Right, because we were in seminary together, right. So you know, when you go through a three or four year academic formation program, your lives deepen right In that period of time and in that space. And we were part of a group that met, I think Jim, we were meeting every other week for nearly four years, right. We had beyond us about five other couples beyond us husband, spouses and whatnot, and just had a means of accountability and fellowship and we journeyed together through all of this and then at graduation we all kind of went different directions across the country. Jim was back in, I think, in Michigan for a while, then Idaho and other places, and I've been out in the Northeast New York City now, and so you know, just distance breeds geographical distance kind of breeds relational distance, and so that's, we're still connected, we still share those years together and this is just a means of reconnecting in that way.
Speaker 1:So was that like the 90s that you guys were in? Yeah, be careful.
Speaker 4:So was that like the 90s that you guys were in?
Speaker 3:Yeah be careful Way back in the 90s.
Speaker 4:Yeah, the mid-90s, mid to late 90s.
Speaker 2:We know you're both pastors and I find it interesting. Sometimes Lori and I will touch base at some point in the journey. I'm working with the recipient. In this case, it was Jim. She was working with Jeff as the donor and she told me at one point he's the pastor, the front runner is a pastor, and I let her know. Well, jim is too. Isn't this interesting? And now, learning that you had spent time in the seminary together, I would just like to ask both of you did your faith shape your perspective on giving or receiving this gift?
Speaker 3:I think my faith has shaped this whole process. I pastored for eight years. 20 years ago, some things happened at the same time. We found out about Fabraise and Angie and I moved back to Idaho at that time and pastoring wasn't in the cards at that time. If you will, we focused a lot in those days of figuring out what was going on, what we needed to do to treat this.
Speaker 3:The further along in this process I got, and as I got to dialysis, I knew that a kidney would come. Didn't know how, didn't know when, but I knew that a kidney would come. Didn't know how, didn't know when, but I knew that a kidney would come. And God said this is my gift to you. I just knew, whatever time I had left after transplant, that I needed to go back and plant, that I needed to go back and pastor again and help whoever I can help with the journey that I've been on in the hospital. Angie said other people name their kidneys. What are you going to name yours? And without much hesitation I said Gigi. She said Gigi, what's that? And I said, well, it's God's gift. And so we had referred to the new kidney as Gigi throughout the process, just knowing that he provided in his timing and in his will. So that's kind of how my faith led me through this process getting to here.
Speaker 2:So I remember right before well, maybe it wasn't right before, but you were going to receive the news of the living donation and you had given a sermon at your church. And then one thing you kept posting over and over again and their sermon was based on this and excuse me if I say this wrong in the waiting, god is working. And that just seemed to be the theme. Can?
Speaker 3:you tell me what that means to you I preached on the whole four chapters of habakkuk because the is a lot of territory hell.
Speaker 3:Yeah, I kind of narrowed it down a little bit as I went, but and it's a story of the children of Israel were taken into a captivity once again and they kept crying out we don't see you, god, we don't see you. And yet it was throughout the course. What do you do when you're waiting on God? And God always has a plan. We just don't necessarily see it sometimes. Even if we are waiting, we can still actively participate in God's plan. God does so much stuff that we don't know about to bring His plan together, and so I guess I've likened it to the iceberg, where you see a little bit on the top, but underneath God is doing so much more than we can even see. It was through that whole process that I kind of adopted the motto that in the waiting God is working. Waiting doesn't necessarily have to be passive.
Speaker 4:You know, as I stepped into this process and it took me a while to kind of frame what was occurring for me, right, and I think the way that I refer to it now is, this journey has been a lesson on availability that as we make ourselves available, there's more going on than what we may imagine it to be. The initial yes for me was to respond to what I felt was a prompting of God's Spirit to say make yourself available. So that was kind of the first yes. Right, and what I really appreciated about the process is it moved me into subsequent required yeses. It wasn't just yes and I'm done now. Right, it's well, then it's the next level Are you willing to move to the next step? And then each of those required, a subsequent yes. And I tell the story this way that even on the day of the operation, right the day I'm scheduled to make my donation, I'm at the hospital and there are still a series of yeses I have to say that day, right Up until I'm standing at the door to enter the operating room. And it's one more final yes.
Speaker 4:But I believe that God is at work and God is inviting me to make myself available. Right, and as I made myself available then I was participating in the good that God was doing in the world and, in this particular case, in my friendship, as I say yes to embracing the good in the world, that God is using that good for greater good beyond all of that, greater good beyond all of that. So that's kind of one of the I think, the lessons for me in all of this is now this, a lesson on availability, but just the ongoing need for me each day to participate in the good that is right in front of me. That that's what the invitation is, as I think about my faith and what I think about in terms of reflecting what I believe to be God's desire for all of creation.
Speaker 1:I like that, the visual of having the ability to say yes every day.
Speaker 4:Yeah, I think what I appreciated about all of this process is that I was always told there was the opportunity to back away if I didn't feel. But my faith, I think, just kept moving me to a deeper and deeper and a deeper. Yes to this process.
Speaker 1:So, Jeff, you and I have spoken a little bit offline about Christianity and living donation. Do you have any comments about the Christian view of organ donation, living organ donation.
Speaker 4:Really in the Christian faith we take seriously what we call the incarnation of God in Jesus, as I've really begun to take that seriously.
Speaker 4:There's the enfleshment, the embodiment that our bodies here matter, that life here matters, but it has to do with helping those who are in need, helping those who don't have resources right.
Speaker 4:There's this way of living and being in the world If bodies matter, and the discovery, I think, going back to a prior question, what did I learn?
Speaker 4:I learned we only need one kidney to function right.
Speaker 4:It's one of these things that I probably learned, that in fifth grade or sixth grade, but I don't remember those kinds of details and then I began to really think about, well, if this is a way that someone else's body can matter really, the opportunity for me to potentially participate in extending life and Jim's ability to serve and love as an extension of all of this really informed the way that I think about all of this and so I think for me helping us as a people understand that really what we have is to be shared with others.
Speaker 4:We often think about money or we think about other kinds of things, but we can share our very selves with others and I think that's for me, the connection with the life and teachings of Jesus is that he shared his very life with us, and that kind of moves me in this direction. But for me it is an embodied faith and if we're able to do that and share that with others, then I think we're reflecting ever more closely the life and teachings of Jesus and what he was about in this world.
Speaker 1:And I like what you said about. By donating, you're extending Jim's ability to spread that same type of love and giving. That's a nice way to look at it.
Speaker 2:same type of love and giving that's a nice way to look at it, jim, you had the opportunity to participate in the GiftWorks program as a recipient.
Speaker 3:Can you speak more to the type of support and also resources that you received as a participant in our program. Yes, I had tried on my own. Once a year, on the anniversary of when I started dialysis, I would put something myself online just to say, hey, I'm still looking, and that sort of stuff. But it was Amber and her team who gave me the resources and, quite frankly, the confidence that it was okay to share your story more often, and so in the beginning, we would get a script that we were able to change and post it online to whatever social media platforms we used. I did one week and then Angie did the alternate week posting those things, and throughout the six months of the program, it was amazing how much contact I had from somebody on the team giving have you tried this or have you done this or have you looked here in order to get my message out, my story out to as many people as I could. Six months put us. At the end of september I honestly became fearful because I knew it was a six-month program and yet, even after that months, we're not going to leave you out there. We're still going to help you in different ways. I think it was November at some point that I found out that somebody had accepted to be a donor. So through that process, any questions I had were answered immediately. Any questions I had were answered immediately, and even I mean Angie herself. I mean she's like, well, what about this, what about this? And so we would text or email together and so you helped not only myself but Angie, to alleviate a lot of those questions that we were having through this process, lot of those questions that we were having through this process In the summer.
Speaker 3:There were a couple times that I got discouraged and thinking, oh, this isn't going to work, this isn't going to work. And Amber was always there to say just keep working the program, something will happen. The support was just amazing on walking us through the process, the journey, journeying together through that whole process. Every once in a while I'd find out that, okay, there's another person who's reached out for information, kind of like from before. I was waiting this whole time but a whole lot was happening more than I knew. Whole lot was happening more than I knew, and so I just had to trust the process and trust that things were happening that I couldn't know at that time because of confidentiality and all that I couldn't be told, and so I just had to trust that. Okay, there are things happening, it's okay, it's all in God's hands.
Speaker 2:It's definitely a collaborative journey.
Speaker 3:Very much.
Speaker 2:And I would just like to say I think that a lot of recipients go through the program and they always hit a point where they have a choice because maybe they're not getting the results they want immediately and, like you said, there's so much happening behind the scenes that Lori and I can't disclose, but there's always this point. I think that recipients reach where they have a choice. They can give up or they can have faith and keep going and pushing through and trusting the program and working together with us, and you did that and I think that's remarkable. Thank you.
Speaker 1:That's remarkable, Thank you. I remember seeing a few of your Facebook posts, Jim, where you were frustrated because you didn't know who your donor was and you had gratitude that you had a deep desire to give to somebody but you didn't know who to give it to and Jeff, in the meantime, had chosen to stay quiet about what he was doing and to see the journey through kind of independently of communication with you and your wife.
Speaker 1:Do you want to talk a little bit about that and your decision to do this independently and make yourself known at a later date.
Speaker 4:I mean because there were so many variables involved in all of this right. There was one side, and I know geography has kind of created distance between us in a all of this right. There was one side, and I know geography has kind of created distance between us in a lot of ways. But then I didn't want to create an awkwardness in our ongoing relationship if I got to a point where I wasn't able to or I chose not to or whatever. And then the feeling of letting someone you care deeply about down right. And then the feeling of letting someone you care deeply about down right.
Speaker 4:In this process the only person that really knew was my wife, in terms of my own social environment and friends and family and all of that. So in that way, I guess, lori, our conversations, you were kind of guiding me through this, you were the one that was helping me walk through all of this Because, again, there was so much that was unknown to me I didn't want to let anybody down and so that was, I think, part of my framework in thinking about it's going to get through all of the diagnostic testing, make sure that I'm eligible in these kinds of ways. And then there was certainly the point at which then we weren't compatible in the ways that they wanted us to be compatible, and then I was. I will say I was disappointed. At that time I'm like, oh, and that's, I think, within the conversation about paired donation comes into play in learning how valuable that can be and it opened up some new horizons for me to think about, even in that kind of way.
Speaker 1:I'm glad you brought that up. So you were not a match to Jim and you ultimately ended up being a voucher donor through the National Kidney Registry. Do you want to talk a little bit about that and what that meant in terms of your donation and Jim receiving a kidney?
Speaker 4:Once the discovery was made that I wasn't going to be a direct match to Jim, the voucher program through the kidney registry, which opened up a new series of questions. I'm like, okay, so that was just a whole new learning curve, my kidney. But it then provided the opportunity for Jim to be prioritized in particular ways and receive a match for him. That was indirectly connected to me, as I made my donation to facilitate all of that.
Speaker 1:And Jim, how long after Jeff donated did you ultimately end up getting?
Speaker 3:your match. It took a week to a week and a half, after Jeff donated, for them to activate it, almost three months to the day between the time it became active and the time I got my kidney Really quick.
Speaker 1:So kind of just to recap how that voucher works. Jeff wanted to donate a kidney to his friend Jim, but they weren't a match. So instead Jeff chose to donate through the National Kidney Registry, the NKR, as a voucher donor, and that means Jeff's kidney went to a patient in the NKR system who was a good match. In an exchange, jeff named up to five people, one of them who could ultimately redeem the voucher for a future kidney transplant, and everyone involved understood that Jim would be the one to redeem it. They they allow you to name five people, though, because, you know, god forbid Jim gets hit by a bus. Jeff still has those other four vouchers and his kidney donation wasn't in vain.
Speaker 1:So Jeff donated at NYU Langone and once the surgery was complete Jim's voucher was activated, and at that point the NKR began searching for a living donor who was a good match for Jim. Jim, a patient at University of Utah Health, received his transplant just a few months later. So there is a wait time between the voucher donor surgery and the recipient's transplant, but the process is closely coordinated, so it's not left up to chance, and most voucher recipients follow a similar path to Jim and Jeff's story, and that's thanks to NKR's large pool of donors. Outcomes are strong and wait times are usually pretty comparable to this, which is great for the patient and the donor. Now we'd love to turn the mic over to both of you guys. So, jeff, what's one question you've always wanted to ask Jim regarding this experience?
Speaker 4:How did you remain hopeful in the midst of all of the uncertainty? And you know, relying on so many other things to happen to make this available to you. How did you remain hopeful?
Speaker 3:I had a very great support system and in those times that I did get frustrated that they were there and they told me to keep going, keep working, something will happen and, ultimately, trusting in God's will, knowing as much as I could that God's not done with me. There's still more to be done. There's still more to be done, and whether that's with a new kidney or without a new kidney, that there's still things I need to be doing moving into the future. And so I was excited when the kidney actually came along because, like, okay, now we can do things a little less encumbered than before. But I just always had that faith that God was going to work it out. I didn't know how, like you said, lots of stuff going on that I don't know about, but it's going to work out and that's what I just kept telling myself and relying on.
Speaker 2:So, Tim, what's something you've always wanted to ask, jeff?
Speaker 3:As I went through this, a lot of people would mention that they filled out a paperwork or something, and a lot of times it was, but my spouse really didn't want me to do it, and so I'm just curious how Stacyacey reacted to all of this and your kids. Were they all supportive, or were they? I can't imagine there not being hesitance on their behalf.
Speaker 4:Jim, that's a great question. I'll answer it this way. Her initial response was that seems like something you would do. I mean, over the course of our I mean I've done a lot of different marathons, triathlons, Ironman. All of this and it was the running joke was always just keep the life insurance up to date, Just keep the life insurance current right. So Stacey was supportive, helpful, and then certainly our daughters. I wasn't involving them until I was doing the voucher form Because I need some information from them on the voucher form and they're like Dad, why are you asking me. Overall they were, they were supportive. I mean, there was the day of the surgery, all of the hesitations that go with all of that, that I think were were normal and whatnot. But yeah, that was kind of how, how we navigated that space yeah nice, those were good questions really good questions.
Speaker 2:So, jim, now that you are officially post-transplant and in recovery, looking back, what advice would you want to give to other kidney recipients who are waiting for their transplant?
Speaker 3:Through GiftWorks and everything. There's a whole lot of resources available to make you successful. But I think one thing that you can never forget is that you are your own best advocate. But don't be afraid to share your story, Wherever it's, at whatever venue, whatever social media, whatever. Share your story as broadly as possible, Because it only takes that one set of eyes to see it and that person say I need to check that out. And for me, I was lucky that it was a friend from a long time ago. But there were people that I didn't even know that had emailed back and said I submitted the information and this was somebody who shared my post, who somebody else shared their post, who somebody else shared their post, and somebody, not even in my realm of influence or knowledge, stepped forward and said I want to check into this. So as much as you can tell your story, all the better, and if you can get other people to tell your story in a different perspective, all the better.
Speaker 1:And, jeff, what would you say to someone thinking about becoming a donor?
Speaker 4:I would say your initial yes is not your final yes and that there's just a series of yeses that you have to keep going through that I think moving forward or to exit as necessary in that kind of way, the experience was personally transformative. I think I am a different person having gone through this process.
Speaker 1:Well, jeff and Jim, thank you both so much for sharing your hearts and your story. You've given us something all to think about and, I think, something to be hopeful for. So thanks for being on Donor Diaries today.
Speaker 3:Wonderful. Thank you so much.
Speaker 2:If you're listening and inspired to learn more about living donation or want to support stories like this, visit yourgiftworkscom for more information.
Speaker 1:And remember every act of kindness creates ripples. Thanks for listening and keep spreading those positive vibes. I just want to feel the sunshine.
Speaker 3: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.
