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
Find Your Kidney Donor Now: Taking Charge of Your Journey with Marilyn Day | EP 30
Join us as we sit down with Marilyn Day, a founding member of Transplant Village and a two-time kidney recipient who has dedicated over a decade to guiding others through the transplant journey.
In this episode, Marilyn shares how her personal story highlights the transformative power of sharing your journey to inspire action and find living donors within your social network. Discover how platforms like Facebook and Instagram have become invaluable tools for connecting patients with potential donors—reuniting people with long-lost connections, activating supportive family members who simply didn’t know, and even forging bonds with complete strangers.
Marilyn’s insights remind us that people can’t help if they don’t know how. She offers practical advice on building a supportive community and tapping into your network to create life-changing opportunities. Don’t miss this inspiring conversation about the power of hope, connection, and the courage to ask for help.
Links:
Donor Diaries Website
Donor Diaries on Facebook
Connect with Laurie Lee
Transplant Village
Northwestern Donor Champion Program
Living Kidney Donors Network
GiftWorks
Marilyn’s Faith Story
The Big Ask the Big Give (NKF)
Johns Hopkins Donor Champion Program
Organ Transplant Support
Tools for Patients at NKR Transplant Centers
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 to donor diaries and happy new year. Let's hop into a time machine and head back to 2011, a year that changed my life forever. It it all started with a liver, my dad's liver to be exact. That was the year he received a life-saving liver transplant from a deceased donor. I'm thrilled to share that. He's thriving today. In fact, this past Christmas I watched him, at the age of 74, plotting his next business venture involving bots and cryptocurrency from his hot tub. Apparently, retirement isn't for everyone and we're super grateful that he's here, but on the day of his transplant, I was hit with a whirlwind of emotions Gratitude for the family who made the courageous decision to donate their son's organs, and sadness for their unimaginable loss. We know it was a young man whose life was cut tragically short, but we never learned much more than that about his donor. Even so, their generosity left a permanent imprint on my heart. That experience ignited something profound in me and my family a deep desire to give back. We wanted to become part of this incredible system of paying it forward, sharing life's most precious gifts our organs Around. This time we also founded Transplant Village, a nonprofit uniting Northwestern organ recipients, donors, caregivers and their families. Our mission is to support the future of organ transplantation at Northwestern Medicine while fostering connections within the transplant community.
Speaker 1:Today's guest is Marilyn Day, a two-time kidney recipient and one of the founding members of Transplant Village. Marilyn's unwavering dedication has been a cornerstone of our organization's success and growth. When she needed a second kidney, she had to put her own advice into practice, sharing her story far and wide to find a living donor, and that's not an easy task. Sadly, many people shy away from it, fearing rejection or the vulnerability of asking for help. In today's episode, we'll hear Marilyn's powerful story and learn why sharing your journey is so critically important. She'll share her firsthand experience of what can happen when you find the courage to lean on your community and tell your story. If you or someone you love is searching for a living donor, Marilyn's insights may be just the inspiration you need. Today. I have my friend, Marilyn Day, here. We're in a sacristy, which is unusual for us because typically we meet at the bar and we get wings. So thank you for inviting me to your sacristy.
Speaker 2:I've been excited to do this and the sacristy is in a retirement community where I live called the Clare, and it was the quietest place I could think of to have a conversation like this without the community interrupting us and saying hi.
Speaker 1:Absolutely. It's quieter than our usual venue. Yes, it is, yes it is. So some background on you, marilyn. You and I have been working in the organ donation and transplant field for how many years together? Now I think it's a dozen, twelve years. So you're one of the very first people I met in the transplant world, probably so.
Speaker 2:Yeah, your dad introduced me through the development person at Northwestern and asked if I would be interested in helping with transplant education and support. And I said sure, because at that point I'd already had my first kidney transplant. That was in 1999. And I had been on dialysis for a year and a half or so before my husband, robert, and I figured out he could be a donor. There was no particular education about organ transplants back then they were not all that old process actually and once we figured out that he could be a donor, then it happened pretty quickly and I was so grateful that I wanted to be part of something that could help everybody else who was going through this, because I felt so much better.
Speaker 2:Then, flash forward 13, 14 years. Transplant Village had a presenter, john Friedewald, at our meetings so that we could be educated about the latest research. And this particular latest research was about John Friedewald's research in helping to identify reasons that transplanted kidneys failed, typically after 13 years. And I raised my hand and I said, well, it's just been 13 years for my kidney. What does that mean for me? And he said, oh, no, you'll be fine. Well then, a year and a half later, I had a doctor's follow-up appointment and John Friedewald said you know you are going to be looking at a new kidney in another year or so and you have to find another living donor because you're too old to be on the list to be effective for you. At that point I was 69. I felt like I was just middle-aged and not a senior citizen, and you acted middle-aged and not like a senior citizen too, so that's fair.
Speaker 2:Yep. And then I thought where am I going to find another living donor? Robert already gave me his. And actually you, lori, said to me once I shared with the transplant group that I was going to need another kidney. You said wouldn't it be cool if I give you my kidney, because you had been looking to donate a kidney and didn't know what that was going to look like yet. And still I'm so touched that you did that. But I said truly, lori, you can save somebody's life in a week and I don't need a kidney for a year and a half. And so you accelerated your process and you did donate your kidney and started a six-way swap.
Speaker 2:And then, a year and a half later, I thought oh well, that's nice. I had somebody offer a kidney and I turned it down. And now what am I going to do? But my niece wanted to be a donor. She sat down at lunch with me and said I'd rather lose a kidney than an Aunt Marilyn. And then she couldn't be a donor for life reasons, logistical reasons and such, where she was going to be moving. So you and my niece decided to put something out on Facebook, which horrified me, because I am not a social media person never have been. I think it's not been helpful for our country's culture, essentially.
Speaker 1:It's good for finding kidneys.
Speaker 2:It's great for finding puppies and kidneys and all kinds of things. So you and my niece did a Facebook page. You said said you don't even have to look at it, except we'll tell you what's on it. And it got gained some traction with some interest from people, among whom was my nephew-in-law, my other niece's husband. He texted me one day and all he said in the text was what's your blood type? And I texted back A and he texted back I'm an A plus David texted back in very few words I've got two, you need one, when and where. And I thought, oh my gosh, this is incredible. So I essentially got on the phone instead of texting and said David, why don't you and Cindy, my other niece, come to dinner and we'll talk really about what that means? It's not like having a tooth pulled, you know, we need to take this seriously. So he went home and told my niece for the first time that he'd already offered his kidney to me.
Speaker 2:I'm not sure the timing was great on that, but they did come for dinner and we sat, the four of us, and talked about it with Robert. And he said at dinner look at this guy pointing to Robert. He's getting older, he looks great. He still drinks beer, he still rides his bicycle. He said, if this guy can do it, I can do it.
Speaker 2:So he talked more about it with his family, because they have three adult children, and we put the wheels in motion, and David was indeed a very good match. As it turns out, he's also a project manager, so he decided to use his project management skills in communicating with the rather long process of finding out the results to a myriad of tests you have to have, and he wanted to move this as quickly as he could, and so he was very proactive in getting all of the tests and then following up to make sure that he was getting results and could move the process forward, for which I recommend everybody would do that. He felt like he had a little bit more control and he wanted to be sure we were getting this done as quickly as possible.
Speaker 1:So if they said we're going to call you with results on Thursday and they didn't call, he called them and said you said you were going to call. What are my results?
Speaker 2:Yes, which I highly recommend, because the fact is the staff is swamped with people to keep track of and you just didn't want to leave it to you know a chance that they wouldn't get a call back as quickly as possible. So the bottom line was we chose a date of September 11th, which we figured would be a great date to be in the hospital in case there was something happening around the world, but we chose September 11th.
Speaker 1:I didn't know. You chose that date. We did, and I thought maybe you were just bringing joy to a sad date. Well, we were.
Speaker 2:But I also thought what better place to be in a hospital if there is a world event or something. But it was a Monday and you know why not do these things at the beginning of the week and everything went so well. I just once again, once I had my kidney transplant. I was then 70 and felt euphoric. Frankly, you just feel so much better once you have a new kidney. That's flushing the toxins out of your system. So, and David did very well, he did learn that he had to drink as much as I needed to drink. He did get dehydrated a bit and had to come back for some fluids, but he did very well and started tracking his fluids and doing everything he needed to do move around, take walks and what have you. And we've just had this great relationship ever since. He's such a wonderful guy he is.
Speaker 1:I would have taken great joy in being your donor. I know, and sometimes I kind of feel like this is what I was looking for in a donor recipient relationship is somebody to do advocacy work and somebody who I like enjoy having lunch with and stuff. But the only reason I can say I'm glad I wasn't your donor is because you have the best donor and I know, I know, what it means to David to be your donor and how special that is to him. He cries every time he tells your stories.
Speaker 2:Still so do I. Yeah, it's. It's been an amazing experience, and he now serves as a donor buddy for other people who are going through the process, and he loves to do that. We have a whole cadre of recipients and donors and caregivers available to talk to people who wish to find out more about the journey they're on, and that is very satisfying to journey there on and that is very satisfying to match people up so that other people can learn. And the reason that I'm happy that you weren't able to be my donor was that you helped six times the number of people in just one transplant than David did, so you've spread the love so far wide. It's just the way the world should work.
Speaker 1:Well, thank God for David because he made it possible for us to both say those nice things. Yeah, for sure. When we talk to patients about setting up a Facebook page and doing a one-page flyer and all these different techniques that we know work, I think oftentimes they feel like they're leaving it up to chance and that we need a Facebook page because a stranger in Iowa is going to step forward and anonymously donate their kidney. What would you say to somebody who's kind of thinking I don't want to set up a Facebook page?
Speaker 2:Well, I didn't want to set up a Facebook page. I can really speak to that. Facebook is huge in this process, as is Instagram, frankly, or TikTok or whatever is the method of communication among people these days, because it does reach a wide audience, among whom are personal relatives and friends and committee members that you're on, or sorority sisters or fraternity brothers. It reaches into so many parts of your life that people can respond once they hear about your need. They can look at that and it means something to them because you mean something to them in some aspect of their lives, and they can think, oh my gosh, I can help this person perhaps, and I didn't even know it.
Speaker 2:That's what David thought when he saw this on Facebook. He saw Facebook and he to himself he said, oh my gosh, I didn't know. Aunt Marilyn needed another kidney. It's not something we talked about necessarily, and that's the dynamic that people can connect with you in ways you had just not anticipated at all Close friends, colleagues as well as strangers. It's such an amazing tool. I'm really glad I didn't have to do it personally, but I'm really really glad for friends like you and my niece who helped me through that process with Facebook.
Speaker 1:Yeah, and you know what, marilyn? I think it works better when the patient isn't doing their own Facebook page and in your case you don't have a Facebook account, so we could have put whatever we want and you wouldn't have known technically. But you know, you entrusted us to do it but you weren't looking at it, you weren't asking us to update it, and I think it works better when the advocates do the Facebook page and the posting versus the person looking for a kidney. It's, it's a lot. It's a lot of pressure to need a kidney and it takes a lot of pressure off to not be the one that's in charge of finding a kidney.
Speaker 2:And if it's an advocate that otherwise would have wanted to be the donor but couldn't, that's even better, because those advocates tend to be more motivated, because they wish they could have done something, and now this is something they can still do for you and take the pressure off of you, as you said. Yeah, so important to have advocates in so many ways. Advocates, there can be so many advocates in your circle for different reasons. There can be advocates that go to your doctor appointments with you. There are advocates that can take you to the doctor. There are advocates that tell your story. There are advocates who find opportunities that you don't even see, because they have you in the back of their mind and make the connect the dots and make the connections. Yeah, exactly yeah.
Speaker 1:Like if you've got somebody in their twenties, perhaps you don't want them at your doctor appointment with you, but you do want them creating your Facebook page Absolutely. Or they probably don't do Facebook, they're probably Instagram. No, they're not, or they probably don't do Facebook?
Speaker 2:They're probably Instagram. No, they're not. But there are so many kinds of advocates to have and everybody has a role and everybody wants to help. They want to be part of your team, as does Transplant Village, frankly. So consider Transplant Village as part of your team of advocates and we just wish everybody a wonderful experience using the resources we have to share with them. I would say that people would be very surprised who came forward to inquire if not. Proceed with the whole evaluation. Proceed with the whole evaluation. I don't know statistics, but my gut tells me that most of the time it's people they know or a friend of a friend or somebody they've met. But there is that great chance that there are people who just want to do a good thing in their lives and this is a way they can help. I happen to be on chemo now and one of my chemo nurses asked me if I worked at Northwestern, because I have a Northwestern jacket and there are indicators in my file that would make people think that I work there from volunteering.
Speaker 1:Says VIP on your file? I don't know. I hope so. They always have to. It's better than complainer. Well, that's true.
Speaker 2:That's true. And I said no, I don't work there. But Robert quickly said but you volunteer there. And she said what do you do? And so I did my usual transplant village explanation of the work that we do with people who need organ transplants and she said I think I would like to find out about that. In her case she has already donated her blood for bone marrow transplants, but it had been a couple of years and she hadn't gotten any calls and she's not satisfied that she's done enough.
Speaker 2:And that's an instance of a relative stranger in my life who heard about it and wanted to do something. And there are so many instances like that where people just didn't realize they could be helpful in that way. And in this world that's so divided in so many ways, it's so wonderful to know that there are people that really want to do good in the world and save a life. So that's I'm so grateful for so much that I have, in part because of the work we can do with Transplant Village and help people get new kidneys and livers in their lives. It's just a part of my life that I love. Even though I have health issues now, this is one of the best things that I do every day.
Speaker 1:It's one of the best things I get to do every day too, exactly, and it's pretty amazing when you get to do it with people that you care about. Yeah, it's wonderful. So how did you feel when you knew you had to find a second kidney donor? What was that like?
Speaker 2:Fear. Initially I hadn't thought through the process of how I was going to manage that, for heaven's sakes. You know I empathize with people who keep this news to themselves initially because they don't necessarily want to burden other people with their sad news. And, being rather much of an introvert myself, I know what it's like to sort of come out with news like that and share that very private news with other people. But it didn't take long, because of the support I got from you and Transplant Village, to understand that that's just part of the process that you and it's so effective and helpful to be able to have those conversations because people really do want to help. And the initial fear and well, besides the fact that I was offended, that somebody thought I was old, besides that fact, I got over the fear pretty quickly, like maybe three days or something. The fear pretty quickly, like maybe three days or something. But the initial reaction was scared and fearful of how I would handle this.
Speaker 1:Do you have any advice for people who are fearful and just having a hard time taking that first step of telling their story?
Speaker 2:Absolutely. If we can get the word out that we are a resource for anybody with any questions like that, I think we can help mitigate that fear. What advice?
Speaker 1:do you have for seniors seeking a kidney?
Speaker 2:Well, my advice to seniors would be to try to get over the fact that there's ageism out there in our culture, in our culture, and to be cognizant of the fact of. As a senior, you need to keep yourself up and try to be as healthful as you can, but if you are a healthy senior, then make a statement and just decide you deserve it and you're going to work for it and earn it. And you're going to work for it and earn it. And you know, show any doubters that you can go through this, because it is a wonderful experience. I did not recover as quickly as I remember recovering.
Speaker 1:Can we pause there for a second? Because you donated on the 11th and I visited you on the 12th in the hospital. Yes, and you were fully dressed, you had makeup on, yeah, your hair was done and you were off painkillers. So tell me again about what happened afterwards, because I remember something very different.
Speaker 2:I presented myself well in the hospital and I felt great in the hospital and I felt great. But then there's a whole truth about anesthesia and seniors that it's to the effect that you don't necessarily bounce back from the anesthesia as quickly. I'll tell you a quick story. I went to our little media cabinet to put in some CDs to play and I looked at the media cabinet and I thought I wonder how I turn this thing on. It seemed very foreign to me. Which button do I push and what do they mean? And I thought, oh, I think I'm still not back yet from my anesthesia.
Speaker 2:So it was those cognitive things that I felt like I was moving a little bit more slowly and not driving heavy machinery Absolutely not driving at all. But my advice for seniors is just to know that it's a different time now to be a senior than it was two generations ago. Seniors in general are more active and healthy and able to do. I mean, I have a neighbor who was 80 years old and he ran the marathon. So seniors, it's not a particular stigma anymore, like it probably has been in the past. So just get over that. People think you're a senior and live a very active life.
Speaker 1:And you just spoke to somebody today who was in their 70s and donated a kidney. I mean, people are donating in their 70s and I think some someone in their 80s did, and they're receiving kidneys in their 70s and their 80s. Absolutely it happens Absolutely.
Speaker 2:You just got to want it Thanks to our great folks, the doctors and their analysis of how healthy we are. Otherwise, you have to be a healthy senior. Frankly, you have to be a healthy anybody to donate an organ, but specifically as a senior, you need to have pretty good numbers in all of your blood workups and physical workups and things. But it happens and it's so fun to hear about and meet these people who really do that. It's just so inspiring and she hopes this. Who you're talking about is a woman who is 70 and just last week donated a kidney to a friend and she truly hopes to spread the word back in Seattle where she can make an impact and educate people that other people like her can save lives.
Speaker 2:It's just a wonderful, wonderful dynamic right now to be able to do that as a senior. It is yeah.
Speaker 1:What's been the highlight of trans working with transplant village for you, Marilyn Meeting all of these fabulous people, the recipients and the donors, caregivers, for sure.
Speaker 2:It's just keeps me humble and hopeful for the world, because there are so many people doing good. Yeah, yeah.
Speaker 1:Well, thank you for all you do. We wouldn't exist without people like you contributing their heart and their soul, like you do.
Speaker 2:Happy to be here and want to do it for a long time. Thanks for the opportunity for this. Thank you, Marilyn.
Speaker 1:If you or someone you love is searching for a living donor, there are tons of resources. Thanks for the opportunity for this. Thank you, marilyn, for leveraging your network to find a living donor. For more information, visit the resource section of our website at transplantvillageorg and check out my show notes to learn more about other resources to help you find a living donor. This episode is lovingly dedicated to the memory and legacy of my dear friend, marilyn Day.
Speaker 1:Marilyn's impact on the transplant community was nothing short of extraordinary. As an advocate, educator and friend, she guided countless individuals through the often overwhelming transplant experience. Her greatest gift was her ability to inspire hope. With a warm and calming presence, marilyn met people where they were especially seniors, who often felt uncertain about pursuing transplant. Where they were especially seniors who often felt uncertain about pursuing transplant, she had an incredible way of helping them see their value, reminding them that everybody deserves a second chance. What I admire most about Marilyn was her profound gratitude. Even in the face of challenges, she focused on the good. I remember when she shared her cancer diagnosis with me, she said how lucky am I to have a cancer I can live with for years with the right treatment. That unwavering positivity was her hallmark and her legacy is one of hope, resilience and connection. Marilyn's life was a powerful reminder to find the silver linings. Cherish our loved ones and live each day with intention. Cherish our loved ones and live each day with intention. In her memory, let's carry her spirit forward, embracing gratitude, spreading hope and inspiring others, just as Marilyn did. Thank you, marilyn.
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. By helping patients share their journeys 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. Remember every act of kindness creates ripples. Thanks for listening and keep spreading those positive vibes. This is Lori Lee signing off.
