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. 11 - Taking Pride in Living Donation with Jonathan Calixto and Mimi Mahon
To commemorate Pride Month, we speak with two members of the LGBTQ+ community who have successfully navigated the living kidney donation journey on behalf of a loved one. Jonathan and Mimi share their donor stories and discuss how transplant centers in the United States support living donors from the LGBTQ+ community.
Welcome to Season 2, Episode 7 of One is Enough, the podcast where Mike Lalo, our Chief Strategy Officer and Living Kidney Donor, and myself, Samantha Hill, the Director of Marketing here at the National Kidney Registry, discuss life with one kidney from many different perspectives.
Speaker 2:Well, some of us have one kidney Samantha.
Speaker 1:Okay, I have a couple, but most of them are, like you know, in-op, so that doesn't one working one. Can we say that?
Speaker 2:Yeah, can we agree on that? One working one is enough. I think that's what we should change our title to.
Speaker 1:That's way too wordy. So today we are discussing something that I think needs to be talked about more in this community of donation, which is the crossover between donation and the LGBTQ plus community. Now I am going to go ahead and preface this episode by saying that Mike and I are not the most well-versed in this subject. That's, first of all, what we have guests for. But, second of all, the reason I'm saying that is because it can be a touchy subject, and Mike and I are not here to try and offend what we're probably going to get stuff wrong, so we apologize in advance. We just are here to try and get the conversation rolling.
Speaker 2:Thank you for apologizing in advance, samantha, because I probably will get things wrong and sometimes I often offend. So we ask all of our Especially me, that is not true. We ask all of our donor guests to share their donation story, and we have two amazing people that we're going to be talking to today Mimi Mahan, who, samantha, as of course you know, she's our first double guest.
Speaker 1:Yes, she is Very high distinction, and I'm not surprised by it, given how much she does for us.
Speaker 2:She's amazing and we have our newest guest, jonathan Calixto. Did I say that right, jonathan? Yes, perfect, thank you.
Speaker 1:See, we're already assuming we're getting stuff wrong.
Speaker 2:No, I checked. I didn't want to. You know, I wanted to make sure I said his name as best as possible. So you know, we always like our donors to share their stories and I am chivalrous. But Mimi, you've been on before and you've got to introduce yourself before. So you're going to go second today and we're going to introduce Jonathan first. But before I read his amazing bio, I think it's important to identify or tell everybody how I came across Jonathan. So I've talked about this before Now. I came across Jonathan so I've talked about this before.
Speaker 2:My wife is a living liver donor and she donated at Mount Sinai and she got invited to a donor event and I was at the event. They were celebrating all the liver donors, kidney donors, and this wonderful young man told this story and I don't want to give any of it away because I want him to be able to share it. And I was just so moved that as soon as he was done, samantha, I kind of stalked him and I was chasing him around this. I'm not surprised. I figured you wouldn't. You have a tendency, yeah, so I. And then you know, as my wife always says, I'm not usually very patient and I'll just like excuse me and I handed him my business card and I said listen, you know we do a podcast at the NKR and I said I think you would just be an awesome person to to speak with and you know, if you think you'd want to do that, you know, please reach out to me. And he didn't think I was some crazy New Yorker, you know, just at all rushing him and he actually contacted me.
Speaker 2:So Jonathan has over eight years of experience in public relations, influencer, marketing and communications. In 2022, he decided to fully venture into his passion for journalism and currently is a multimedia journalist and host at BronxNet TV and freelancing for outlets like Bella Magazine and as an assignment desk editor at News 12. He's also using everything that he has learned to inspire others through his podcast. Look at this. He could probably teach me a thing or two. Inspire your inner boss, whether it is work on the camera or behind the scenes. Jonathan's mission is to add his own touch of representation, something he didn't see growing up, to show other queer Latin individuals that they can be seen in any industry. On top of all that and I don't even know how you had time to donate your kidney you are a living kidney donor, so I'm not sure how you got that into your schedule. Yeah, team no sleep over here. Team no sleep. So do you want to share your donation story with us?
Speaker 3:Yeah Well, first off, thank you so much. I'm so happy that you stalked me and here we are today filming an episode, so it works out sometimes I'm kidding, but no, but thank you so much for having me. Yeah, so my donation story I donated to my dad and for like over 10 years really, like my family and I were seeing my dad's situation with kidney failure, so it was something that we were aware of that he was going through, but I like to say it was like an internal battle. It was things that we couldn't really see, aside from him going to the doctor, often getting sick sometimes. See aside from him going to the doctor, often getting sick, sometimes, um, what seemed like a cold or whatnot and going to the hospital numerous times. But it was just these small instances. And then in uh, 2021 is when he got really sick and we thought it was either like a cold or like a stomach, uh, flu bug, something, and we took him to the hospital and he ended up staying there for like about over two weeks, and so that was the first time that he stayed in the hospital for over a long period of time and during that time, really our lives, and especially his, changed. And that was the first time that I say and I always think about it as in like, the battle now became something external that we could see. Finally, during those two weeks in the hospital he started he had to go on disability from work because he knew the doctors had told him like his life would change. He would probably not be able to go to work anymore. He started dialysis three times a week. So as someone who just he was not prepared in a sense for that just emotionally, mentally, it definitely hit him hard. And after he got out of the hospital we started to notice him losing weight. His energy was super, super low all the time, especially with doing the dialysis three times a week, and so a lot of the things just changed.
Speaker 3:And it wasn't until one of the doctor's appointments now after him getting out of the hospital that we went in and we found out that a potential kidney donor like that could be an option to save his life and just give him another look at a longer and more fulfilling life. And that started the conversation with my sibling and I. So I have a younger brother and immediately, once we heard that it could be an option, we both were in the room? I don't know, but as latinos, we all travel in pack and we were all there at his first appointment my mom, my brother and I just you know being like, okay, what does he need? What? Translating as well? Uh.
Speaker 3:And when we heard this could be an option, we both said yes, we wanted to do it. Um, as the oldest, I was just like let me go in first and see if it could be an option, but there was a lot of hesitation with also being queer. So it was like, yes, but will this hold me back? Is this possible? So, after almost two years of testing and you know something that people don't know as well, as someone who, when you're going through that process as well, your insurance is very important, and he had issues with his insurance. So we had to a year after going through exams and everything had to switch to a new hospital and start all over at Mount Sinai, where we were able to do the surgery. But all those different factors took about two years and then, finally, in March 29th of 2023, last year, I was able to be a kidney donor for my dad and it's definitely changed his life.
Speaker 1:Well, I know we're we're releasing this at a different date, but that date is coming up, so congratulations, Thank you.
Speaker 2:So two, two things. One, you know you, you kind of glossed over it and that's one of the things that moved me when I heard your story originally. So you, you know you mentioned that you being queer gave you some reservations. So, before you know, you mentioned that, uh, uh, you being queer, um, gave you some reservations. So before we go into that, uh, this is probably where the potential offend part comes in, but I'm being serious. So I always remembered, uh, growing up, if you refer to someone as queer, that was offensive, calling someone a queer person. So, and I heard you and honestly, that's what struck, because I saw you up on that stage and you identified yourself as a queer Latino man and I was like, oh, I didn't know that that word was appropriate. So can you help people like me understand that? Is that a word that just someone from the LGBTQ community should use, or is that OK to refer to someone as queer versus gay? I hope you don't mind answering that question.
Speaker 3:Yeah, and I will definitely speak from my own experience. I think everyone has obviously their own boundaries, their own even pronouns and things that are just out of respect for them. I think for me, when I was in college, I definitely learning about the history of the LGBTQ plus community, certain words as well that were used back then and how that word has evolved. For me it has been more so, especially over the last few years a word of ownership and something that we've reclaimed back, just as a way to show like empowerment and that it is encompassing of our whole community.
Speaker 3:Right, so it's, it's just another form or way of saying LGBTQ plus. So I know it's been used sometimes as a way to when people can't say all the different letters. You know, it's just a queer kind of general word, but I definitely I always ask someone how they feel about their word and if that is of comfort, I know, as a person who is part of the community, definitely feel comfortable using it, but I also know it also within my community it is a conversation we still have. So I always say I appreciate that it's better to ask them. Yeah.
Speaker 2:So can you go into a little bit of why you thought being a queer would would would affect you being a donor?
Speaker 3:yeah, so for me, it was mainly that, I think, being someone who is part of the community, I've always been, or just have always felt, like the other. Uh, and this goes all the way back, obviously, from growing up and you know, just dealing with kind of coming to terms with who I am and then there's one vivid memory in college where I wasn't allowed to donate blood because I was gay, and at the time there was obviously rules and whatnot, and so that first, that kind of scenario stuck with me almost 10 years later and here I was in a hospital, still asking if I was allowed to be a part of this process because I am gay, you know, so yeah, so things like that stuck with me forever, and so those were the initial things I went back to when I was at a hospital, asking if I could be potentially someone who can help my dad. It was all these things that I had gone through, where I was always meant to feel like the other. Wow.
Speaker 1:Well, not to jump the gun here, but I think this would be a great point to bring in our other guest because the stories are very similar and I'd love to have you two actually discuss a little bit again to keep Mike and I from offending the entire community.
Speaker 2:And I can talk a lot, so it keeps me quiet Same.
Speaker 1:OK, so welcome to Mimi, who, as we said, is now our first double guest. Again, not surprised, she's Mimi. We love her and we need her desperately because she's so epic and really does push kidney donation and tried us to get as many people informed as humanly possible. So Mimi owns her own gym, she is a living kidney donor, she is a member of the LGBTQ community and, jonathan, I am one of those people who always trips over the letters. So I thank you for defining queer for me. That might be very helpful in the future. But so, as I said, mimi is a part of your community and it's one of the reasons I asked her here, but also because her donation story was influenced by that fact and I will not spoil that story. But, mimi, would you like to go ahead and jump in on this one?
Speaker 4:Yeah, so I think well, first of all, thank you for having me two times. I guess the first one wasn't too bad of an episode, but I'm excited to be back and I will say that I have listened to every single episode and I thoroughly enjoy them and members of my gym community listen, my mom always listens and we like to talk about the episodes and they're just so educational, informative as well, and a little humor in there never hurts. So educational and informative as well, and a little humor in there never hurts. So I appreciate you two very much and all that the NKR has done for me and my family, and I just love it, thank you. So, with that being said, I donated to well on behalf of my mother. I did not donate directly to her as part of the paired exchange program but, jonathan, listening to your story, it was actually very similar.
Speaker 4:My mom also became sick. It all happened a lot faster, but there wasn't anything, like you said, on the outside. It was just, you know, seemed like a little cold that escalated into something more and escalated into something more and finally she was actually found in her bathroom on the floor and she was septic. So she had to be rushed to the hospital and we believe that the sepsis is what initially hurt her kidneys and then, as she was recovering from that, she actually had a cardiac arrest at a restaurant with me and my siblings, so I am a triplet. I think Samantha shared that detail, but that is If not. We covered it in another episode.
Speaker 1:If not, yeah, triplet, whatever, everybody's just going to have to keep up with all of the episodes so they know what's going on right, just like Mimi and her gym. Yes.
Speaker 4:When people are like oh, you're a triplet, Wow, what's that like?
Speaker 2:And I'm like I don't know One of three.
Speaker 4:That's what you say it's what it is. So, with me and my sister, who is a nurse, actually did CPR on my mom and saved her life, and so you know we went through that. She got better. It was absolutely a miracle, and the only problem was that she was in kidney failure, and it's funny because back then that was a big problem, but now it's really just a small forward. I'm like that's fixable. You know, at the time, though, we knew we knew no one that was going through that. This was eight years ago, so we didn't know anyone that was going through that.
Speaker 4:Luckily, again, my sister just being a healthcare professional, she was an incredible resource for our family. That's another thing that we try to advocate as a family is having someone that can just translate, you know and have a better understanding of what's going on. I've seen many other people you know go through illness, and if you don't have someone that can help you through the process, that's really challenging. It can be like an entirely different language in itself. So we got through that, and then eventually, the conversation came about, a kidney transplant being a possibility, and again, we knew nothing about that, but my sister was like, yes, that's what needs to happen.
Speaker 4:So actually I was tested right away, but I was not a good match for my mom. So some other relatives stepped up, which was amazing Friends of the family. She was very fortunate to have several people step up, but they just kept getting denied for their own health reasons and ultimately I'll never forget the day that I called my transplant coordinator and said I know it's going to be me, so why do we keep pushing this down the road? But at the time and I think Samantha can correct me if I'm wrong, but I think the exchange program, as we called it back then, was kind of newer seven, eight years ago. It wasn't their first thought.
Speaker 1:Yeah, we were about half our age, so we were definitely smaller. Now our operations center, which I believe Mimi has seen, it was one guy with six monitors. It wasn't the state-of-the-art situation we had here. It was Larry, but yeah, it was much more fledgling. We were really just starting to design that voucher program back in 2014, 2015. It was really just in infancy, so around the time Mimi would have been donating, it was definitely not as much part of the conversation in healthcare.
Speaker 4:Yes, so they were just a little hesitant. I think maybe they had only done one at Christ Hospital. Again, I don't know if I have those stats perfect, but it was something that I just the longer we kept kicking the can down the road, I just didn't understand why we were waiting anymore. So they said, let's go. And then it was about six months from that conversation to being able to have our surgeries, which we were able to have on the same day, which I thought that was also just typical. And Mike one time was like oh, that's cool that you had them on the same day. And I was like doesn't everyone? So there's always not when there's a voucher.
Speaker 4:So, it's always evolving, though, and back then we'll dive into, as Jonathan said, not really having anyone that looked like you growing up potentially. I think that's what I heard you say and I feel the same way, and it's kind of funny because there's a parallel there with living kidney donation. I had no one. I was like souring the Internet trying to find someone that was a kidney donor. I couldn't find anyone. I remember I finally found a doctor that I think somehow I found a doctor that maybe did CrossFit and I was like you lift weights, are you okay? And I think he like wrote me back and said it's all fine.
Speaker 4:It was really short, you know, so I just couldn't really find much, and now it blows my mind at how much, how many resources and how much information is out there for living donors Thanks to the work that people like Michael and Samantha and then KR. So it's really incredible. I don't take that for granted at all and yeah, I just I think it's amazing. There's a lot of education that still needs to happen about the voucher program and the paired exchange program, because I still think people think they only can have a kidney if it's a direct match. So that's for another topic, but yeah, that's my story, don't worry, it's on the list.
Speaker 1:But so, mimi, I'm going to dive into the potential for offending and I'm just going to ask you to, you know, give a little of your, you know, lgbtq community aspect of yourself.
Speaker 4:Yes. So the good news is you cannot offend me, because if you care about me, nobody can offend all the listeners.
Speaker 1:That's right, you can't do that. Oh, definitely, we only have like 12 to begin with. Definitely A million.
Speaker 2:What happened? We had a million, like last week, we dropped oh my gosh.
Speaker 4:Yes, you definitely can offend others, it's all.
Speaker 1:Mimi's mom Just repeat listening.
Speaker 4:That's right.
Speaker 2:Hello Mimi's mom.
Speaker 4:Yeah, hi mom, I hope you're listening, hi mom. Yeah, hi mom, I hope you're listening, hi, mimi's mom. So, like I said, the reason I want to say that you can't offend me, samantha, is because if you care about me and I know you're coming from a good place, you can say whatever you want, as long as you don't mean to hurt me, and then I will educate you and my mom will laugh, because that happens to my mom our whole life.
Speaker 1:She will be laughing right now because maybe she'll and here's the thing Mimi's arms are very large, so when she educates you, you know there's a little, oh my gosh I feel like I'm always.
Speaker 4:There's some intimidation going on too, you don't know how many people want to say, oh, mimi, could beat you up. I don't beat people up, I mean bring in for the hug. You know this. Now maybe, like mid competition, you should be a little nervous, but other than that, no, I'm a hugger, not a fighter, all day long.
Speaker 1:I think Ronnie's the only one nervous mid-competition. That's right, and we love each other too.
Speaker 4:So it's all good you do. But with that being said, I yeah, you can't offend me I most prefer the term gay. But actually what's interesting is my wife, ashley and I. We have two children Jonathan. We have a two and a half year old and an eight month old and cutest human beings. They're my world. Yes, you'll have to follow me on social media so you can see some adorable pictures of Nico and Luca are their names, and what's funny is Ashley and I both have always really not preferred to be given much of a title. So call me my name and that's probably the best bet for you and that will work. So that's just kind of how we are. I think that it's really important to listen to how other people identify themselves. If I identify myself as a gay woman, if I identify myself with female pronouns, that's what you should go with, and when in doubt, I would say, just use people's names. That's a good start.
Speaker 4:So Mimi and Jonathan before we get off your donation story topic.
Speaker 2:Was there ever a point where either and this is a question could go? It goes to either one of you where you just thought like I can't do this or I'm not going to do this, and I know it's? You know, both of you one, jonathan, directly you were donating to a parent, and Mimi, you were donating on behalf of, but did that ever come across your mind, either because of the whole process or because you know of being part of the LBGTQ plus community? Jonathan, you want to go first?
Speaker 3:Q plus community. Jonathan, you want to go first? Yeah, I would say for myself there wasn't a hesitation in regards to I just I knew I wanted to do it for my dad and like to help him and obviously there was a. There's a relationship there, you know, so that it could be different per each case. I think for me it was just more the outside fears of everything else.
Speaker 3:You know, I'm someone who had never had major surgery. You know, again, the whole aspect of being someone Latino and queer and going through this process. What did it mean for me? What would it mean, sir and specific? You know, samples and testing that I had to do just because I was and identified as part of this community. So those were my fears, because I was and identified as part of this community. So those were my fears.
Speaker 3:But I knew and it's it's so weird when I've also tried to explain it to friends and peers, it was, and even to my parents, when we talked about doing this and you know, obviously, as my parents, they were like no, we can find another option, we can wait, he can be on the list, it's fine, Right, and it was this thing of. I had never been so sure of something in my life as I wanted to be that for my dad. But I also had to deal with that if we tested and I wasn't a match, what would happen, you know? Or if we went through a certain process and then it got to the surgery day and something out of our control happened, and then you know it didn't get to happen, and how would that make my dad feel? So all those different things I was dealing with and that was that conflict of balance emotionally. What about you, mimi?
Speaker 4:I never had any reservations. I think that a lot of donors say they just feel like some sort of calling to do it and I definitely felt that strongly. I will say I do joke with my siblings because not only am I a triplet, I have two older brothers and I feel like they none of them got tested.
Speaker 1:So I always say that none of them got tested. And today, okay, yes.
Speaker 4:None of them got tested and my sister was pregnant at the time and then kind of threw out it. She has three children, so that's okay, she did her job and she totally would do it too. I just know she would. But my brothers I'm like, do they think only females can donate? So that's my joke with them.
Speaker 1:That's so with them. What I will say is females are actually more inclined to donate than males. That is true. It is part of the statistics. That is true. That's interesting.
Speaker 4:But yes, I never had any reservations. I felt really strongly about wanting to do it and honestly, I think I just went into it all very naive because I wasn't really worried about the surgery or the outcome. I was just worried about helping my mom, and I would deal with that later.
Speaker 1:So so maybe you and I have known each other for a while and while we don't talk nearly enough, we do talk. You know occasionally as just as friends, and I know from those discussions that part of your donation journey was impacted by your sexuality, because you were given pushback, in fact because of it. Would you be willing to share that?
Speaker 4:Yes. So when I had my initial screening done and I had a meeting with the social worker, this was again about eight years ago in Cincinnati I wasn't living in the area at the time, I was living in Cleveland, which I was working at, oberlin College, which is a very liberal, progressive college, and I had come back into town to do all my testing through Christ Hospital. And when I met with this person that was one of his questions he asked me about my sexual orientation and I thought that was semi-confusing because I thought what does that have to do with donating a kidney? You know, did you ask me that because I look gay or I have short hair? You know? I just felt a little bit I don't know singled out for a question that to me had no relevance on anything. So when I answered the question with, well, I'm in a relationship with a woman at the moment, and he said, okay, well, it sounds like having children is not in the cards for you, and he just moved along and I just couldn't believe it. But I also thought, well, maybe that's what's happening here. This guy has no idea what he's talking about, but I was eye on the prize. I just was worried about donating my kidney to my mom. So I literally just put it aside, continued on, you know, told I.
Speaker 4:Actually I can't remember if my triplet brother, chris, would have been in the room. It seems like he was, but I don't know if that was allowed. So maybe he was just waiting on me and I told him the story. But he was pretty mad and I told him I was like, don't worry about it, let's just keep moving forward, we can deal with that later.
Speaker 4:But I did deal with it later. So after I had my surgery and I was recovering, still in the hospital I think I was only there for a day or two I actually asked to speak with my transplant coordinator in person and I just told her what happened and that it was a long time ago. But it really upset me and at the end of the day, it really wasn't about me, it's about future donors or you know, people that are interested in donating their kidney and making sure that they have all the resources that anyone else would have. Because that was just an incredibly ignorant thing to say and and just not, you know, not an assumption that he should have made, and obviously not true since you have two children.
Speaker 4:Yeah, so I do have two children and my wife did carry them, but, as Samantha knows, foreshadowing, hopefully, maybe one day I'd like to carry one as well.
Speaker 3:That's a scary thought that's a different topic, but we're all hoped for A little me Junior running around at the donor games would be pretty fun to see.
Speaker 4:But yeah, I just thought that that was crazy that he dismissed me like that. I still can't believe it, honestly, when I share the story.
Speaker 1:Yeah, and I believe that you had another relative going through the process and they were not asked even remotely close to those questions.
Speaker 4:Yeah, you're right, it was a friend of the family that you know it was. I don't think she had children at the time. She was married to a man and I don't know if what questions he exactly asked her, because I obviously wasn't there, but my sister shared with me that this friend you know was told oh yeah, you can have children. It might be a little higher risk pregnancy just because you have one kidney and I know monitoring blood pressure. But it sounds like they had a little bit more of a conversation where you know it just wasn't in the cards for me.
Speaker 1:Jonathan, you have a very specific look on your face. Would you like to respond? Yeah?
Speaker 3:Jonathan's going to get him, I know. Give me an address, give me a location. Please drop a pin.
Speaker 4:I did not use names.
Speaker 2:He's going to send Mike to go stalk that guy. That's what's going to happen, yeah.
Speaker 1:And you know what Mike's good at it. He probably could find out who it is.
Speaker 2:And I'm from Queens, New York, so I know people.
Speaker 3:You know, Jonathan, I wanted to ask you how beneficial do you think it is for people in the LGBTQ plus community to see themselves in people like you and Mimi being living donors.
Speaker 3:I say I think, especially when it comes to being a living donor in general, it's important for us to see ourselves, whether it is through testimonials of other people, like Mimi, of situations that happened you were saying, like about eight years ago or so.
Speaker 3:You know how much things have changed even since then, you know, and what things are we dealing with now. I think that it starts a conversation, especially for us who are going through it or have been through it, and one thing that I think representation and seeing ourselves in this especially is important is because, as grownups and as we get older, I think it's easy for us to research and find communities and people that look like us or that relate to us, especially in our orientation in our community. But as younger people, you know people who are growing up, they, if they don't see that they don't and they don't have access to research, that that stays with them forever, you know, and so I think it's important for them to be able to see people who look like them, who have gone through things like this and that are talking about it because it'll start conversations from very young.
Speaker 1:Absolutely, and I I would just like to get your opinion on where do you think the the friction point comes from between the medical world and the the community Is it? Is it from those those decades old rules where you know gay men weren't allowed to, you know, give blood unless they like, abstain from sex for six months? Or is it from you know other instances where you know they they felt that the medical community wasn't being up front with them? Where do you think the the friction point comes from?
Speaker 3:Yeah, I would say from for me specifically, I think back to, yes, all those rules back then that we had, you know, and how it was, because I even remember back to that, like donating blood story, what that happened in college. I just remember there also like there being a sign specifically saying that you know people who are gay or whatnot we had to speak to a coordinator, or that you know there was other alternatives for us, but it was more so of directing us to another person to speak to to then tell us, no, you know, it wasn't that, that it was like, oh, we were going to be talked to and probably be able to donate blood down the line, you know. So I think all those different rules and the marketing behind it that really pushed it was, yeah, what is like shocking to me.
Speaker 2:we have a bunch of great researchers that help us out. What is like shocking to me. We have a bunch of great researchers that help us out. The FDA only changed this rule in 2023. So I'm hoping that this is a typo.
Speaker 3:I guess I don't think it is no, yeah, and it was a huge thing 2023, that was like. Last year, yeah, a few months ago.
Speaker 1:Yes, yeah, literally not even a year.
Speaker 2:I'm not being like theatrical, I'm like shocked by that. I read that and I was saddened, like perplexed, and a bunch of other words I probably can't pronounce.
Speaker 1:We're trying to keep this for anyone to listen to, but I think it goes to.
Speaker 2:You know, I'm not part of that community, so I don't know all the things that are going on with the community. And to see that in, only in 2023, a rule that was, you know, banning, you know, gay men from donating blood unless they abstain from sex for a certain period of time, that is just mind blowing to me. I just can't. I can't even believe that that policy was, was, was in place. It's just I don't know crazy.
Speaker 3:And even when I read the whole part about being abstinent for six months, like I don't. I don't know why and I maybe it was my lack of research even back then when I was in college, but for me it was a plain no just because you're gay, you can't donate blood. So it wasn't even that explanation of, oh, you have to do, you know, abstain from sex for six months or all these different things. So I think that in itself those rules, those kind of limitations, sometimes that creates a culture of us then feeling like the other in all different spaces, not just in the medical space, but then feeling like we have to tippy toe around every single thing.
Speaker 4:I love that Jonathan says like, feeling like the other. I definitely that resonates with me. I think I most often feel like we're moving towards a good place in the world where we can just be seen as people, just who we are. Like I'm Mimi, you're Jonathan, you know it's not like we have to be in some certain box or bubble. And again, I know I can only speak for my experiences and myself. But I know being in a same-sex marriage having two children, like we always just want to be seen as a family. We don't want to be seen as that specific type of family, you know, that's just really something that's on my mind a lot and thinking about having this conversation today.
Speaker 4:I was fortunate growing up. The other thing I think about is not just your sexuality but just gender. I think that's another part of it and that's another conversation. But for me, growing up with siblings, we my sister and I so many years ago we played on teams with mostly boys and I thought about it and my parents thankfully they didn't use phrases like tomboy or girly girl. Thankfully, because I, you know, people still use those terms and that's again just like putting you in a box Like I.
Speaker 4:I see parts about me that are masculine and parts about me that are feminine. And you know, because I have muscle, samantha, I'm not going to beat you up. You know it's like I think that you know I don't want to just be, you know, be seen as a certain way. I think that we're all way more complex and just should be seen as us and I'm lucky that I had parents that didn't put me in a box and I'm appreciative of that all these years later and at the end of the day, I didn't want to be the best girl on the boys team, I wanted to be the best on the team and I think that's you know how I still live my life.
Speaker 2:Well you are the strongest person in the gym, that is for sure. My are Certainly our gym, my goal is to compete against the guide owners.
Speaker 4:Wouldn't that be great?
Speaker 3:I think you could kick Cody's butt.
Speaker 4:Probably more, because it just keeps getting better and better. But again, that's a conversation for another time.
Speaker 1:I would love to watch you beat Cody.
Speaker 3:If you need a host, there would be popcorn.
Speaker 4:Oh yeah, Jonathan, I'm'm gonna get you in on this again. We'll talk later. He's actually you're pretty local Jonathan so yeah, I just can't compete.
Speaker 2:I know my strengths and it's not that well, jonathan, I am present at all of the donor games, championships. I don't compete either, I just talk.
Speaker 1:So he just walks around with a microphone. We don't entirely know what he does. I'll be more than happy to get another microphone, and then you and I can uh host I would just like to say he's not the one that would be ordering another mic, another microphone. That would be me.
Speaker 4:But you know what?
Speaker 1:it's fine, he can pretend I said we we do have fun, jonathan, and I hope you can make it to the championship or or an event wherever it's at definitely so what, um, you know, going back to what you were saying, what's something that, um, you know the medical community or or just people in general can, can do to support, you know, your community? Uh, in, in getting them, you know, more comfortable with the idea of donating a kidney, or even just, you know, think about it. Feel free to either of you jump in so I don't have to say Bueller.
Speaker 3:I would definitely say I mean obviously, as someone who comes from, like, the marketing communication space.
Speaker 3:I think just seeing more branding of these stories that are out there, you know, I, I think especially I don't know if this has happened for other people, but since becoming a kidney donor, I'm just so much more aware of the banners, the signs, even on the train where I was like oh wow, like they are actually promoting, like being a donor and saving someone's lives. You know, it was like a big painting on a building in the city that I was. You know, I'm just so much more aware of that and I think, especially for the LGBTQ plus community, we need to be able to now see ourselves in those stories. I think also these conversations are great because when I was going, even through it just about a year or two ago, I wish I would have had a Mimi, you know, or someone that Mount Sinai or my hospital would have been able to direct me to a person who was a part of the community. So I think even having a database of that is great to be able to talk to people as well.
Speaker 4:That's a great point.
Speaker 2:Well, hold on me. So I just wanted to touch base on that. The National Kidney Registry has a program called Donor Connect and we have the National Kidney Donation Organization, national Kidney Foundation, and we even have our own internal microsite donor mentors, and the great thing is that we have a donor for everybody, right? So if you're a female who hasn't had a child yet but wants to talk to a donor who had a child after donation, we have that. We've had people who are part of the LGBTQ community ask to speak to a donor who was part of that community, we have access to that community. Asked to speak to a donor who was part of that community, we have access to that. So, just to hit on what you're saying, I think it is important for donors in general you know whoever they are to have someone to talk to about their experience, to see you know what things might come up and you know what's going through their mind. Sorry, mimi, I didn't mean to cut you off.
Speaker 4:No, that's you actually. That's perfect, because that was going to be. My point is how do we get people that are interested in donating connected to other people that look like them? And you just said exactly how we do that, so I think it's just important that we-.
Speaker 2:I read your mind.
Speaker 4:Yeah, we need to get that out there even more. I know you all do years ago, so before you had all these great resources available to folks. But, yeah, just continue to have the conversations.
Speaker 2:That's one of the reasons why Samantha and I, you know, were sort of passionate about this podcast, and I don't know if we said it yet, but we usually say we're trying to normalize, you know, living kitty donation. And you know, with each episode, you know we hope it does one day reach millions of people. But you know you got to keep plugging away. It's not, uh, it's not just this podcast or it's not just the thing we're putting out on Facebook or you know, linkedin or Instagram or X or whatever or these other things that we we have going on. Um, you know, we all have to do our part and keep spreading awareness, because I honestly just think most people don't know about being a living kidney donor. It doesn't even.
Speaker 2:You know, like Jonathan said, you know you now, all of a sudden, all these billboards. You know my wife and I were looking at a car. We wanted to get a Volvo. I never even, I don't think I even knew what a Volvo was. And next thing, you know I can't drive without seeing a Volvo, right, because now it's like planted in your mind. So we've got to find a way to get living kidney donation the seeds planted in all the minds of the 200 million plus people over the age of 21 in the United States, so hopefully they'll come to the NKR and donate to us, Just to have a general public service announcement.
Speaker 1:despite the fact that Mike and I both drive Volvos, we are not sponsored by Volvo.
Speaker 2:It is a nice car, though You're just going to send me a car, not just a coffee mug. You get a car, Mimi. You get a car, Jonathan. I'm just joking.
Speaker 1:I did. Oh, that's not trademarked, is it?
Speaker 4:Oh, shoot Oprah's going to sue me now. I think another big thing that needs to be shared is and I hope you experienced this, jonathan. I'd be curious if you've experienced that already is I feel my life has been enhanced a million times over by donating. I remember having a conversation with my dad not too long ago where he said what a beautiful story to take something that was so hard on our family and make it into something that is just. It's in all of my life. I mean, I do the donor games.
Speaker 4:We're hosting a competition, a regional event, for the National Kidney Registry in July at my gym. I mean it's just really spilling into my day to day and I love it and I love the people I've met. I've met some of the best people. I've heard some of the best stories. I've been influenced with regards to just like my own fitness, nutrition, lifestyle through other kidney donors, it's just like by having conversations about how they handle themselves after donation. So again, it's just brought so much to my life and I think it's not only that. It won't negatively impact you. I think we're starting to take that a step further. I know Samantha Garrett said there was a quote in I don't know some press release recently about the donor games, that not only is donating a kidney not negatively impacting your life, it, in time, can actually enhance your life in ways that you never could imagine, and that's something that I strongly feel. So I think that's the message and I'm just curious, jonathan, if you've experienced that.
Speaker 3:Yeah, I want to say I just got a little emotional when you were saying that because I think you know, coming up on one year of having gone through it, I have seen those changes and I think you know a lot of times you talk about the physical things that you know, healing and those kind of things but I think I don't know, I've just in this one year, I've felt so much more empowered and you know, and and being able to feel like I can stand up and fight for my dad as well, who continues to go through life changes and things as he is healing as well.
Speaker 3:So, and so just to hear you say that, that it makes me excited for what I have to look forward to as well, you know, as the years go by, of what I can do with this new type of enhanced kind of feeling. So, yeah, I do think definitely have felt more empowered. I've also, as someone who is a journalist I usually tell other people's story and for, in some way, in some capacity, this has also allowed me to open up a little bit more about my own journey in hopes of helping other people, you know, and inspiring other young people, especially that, just as I mentioned earlier about just being able to see themselves in any space and being, especially, a living donor. You can be a hero for someone else and I hope that you know queer people. They know that they have that ability to be that for someone and I hope that you know queer people.
Speaker 1:They know that they have that ability to be that for someone. So, in terms of representation, something we kind of left out in this episode is members of the LGBTQ community who are recipients, and obviously you two are not. You are the other side of the coin, as it were, but have you interacted with anyone who is in that situation?
Speaker 3:I personally have not to be honest. No, I haven't, yeah, and I don't think it's something that has come up in the immediate combo.
Speaker 4:So maybe someone could be, but I haven't, for say, come up with, yeah, I have not either, and it's funny because I think oftentimes I feel like I am the first person to do a lot of things and I don't set out to be that way, but it seems like that kind of happens. So hopefully, you know, after today, Jonathan and I meet numerous kidney donors and recipients who are part of the queer community. That would be, that would be fantastic.
Speaker 1:That sounds like Mike. You need to go find some people in your stalking pastimes so that we can have them on the on this episode about this as well.
Speaker 2:Once we end this podcast, I will hit the streets and start stalking immediately so I'm picturing a really bad scenario, though, because my are you a kidney donor and are you gay?
Speaker 4:wait, is that what I'm supposed to say? Do I ask if they're lgbtq first, and then when they say yes, do you have two kidneys? They say yes.
Speaker 2:And then I'm going to be in trouble. Then I go like come, come into my office here in Babylon, New York, Get the melon baller and the chloroform.
Speaker 1:Oh boy. So I asked you both what you know can be done to support your community into getting this out and whatnot. What do you think you know that people in your community who have donated kidney can do to influence the medical community, because you know they also, as evidenced by Mimi's story uh, you know, could use some, some, some help as well.
Speaker 4:I think it's just education. I mean, when I met with that social worker I just couldn't believe that he didn't. Did he think that a same sex couple cannot have children, Like I again I didn't have. I didn't ask him any questions because I just wanted to leave the room, but that it's just making sure that they're educated.
Speaker 3:Yeah, and I think being able to see also that partnership right, whether it's with organizations that are part of the community, that are local to those locations, to the hospitals, I think it would be nice to be able to see that there is a relationship there and that there is there steps being taken to strengthen that relationship and to bring awareness as well.
Speaker 2:I think that's a great question, samantha, because transplant as a whole is in the dark ages.
Speaker 1:So you know, I got, I got transplanted in the dark ages. Mike, this, this is the renaissance, it's really it's bad.
Speaker 2:You know, like still today. You know, just to use one example, you know if you're donating directly, you know Jonathan only had to see a social worker, but if you're going to be a good Samaritan, non-directed donor, you have to see a psychologist because you must be crazy. So there's still things within the transplant medical community that go on or that are just decades and decades and decades old. So it's sad to hear about, you know Mimi's experience, but it's not very surprising since the, you know the industry as a whole is still set way back into the Renaissance. I think you said Samantha.
Speaker 1:Yeah, I, you know, every, every month, part of story or five nice stories of local whatever gives to local whatever, and it's like oh, the local high school football coach and the librarian whatever. And they're great, feel-good stories. I'm sure, jonathan, you've had to do a couple of those in your career as well, but it's finally starting to change. I've noticed where you know they'll interview these people and they'll say they used to say, oh, yeah, well, I didn't think I'd get somebody, because you know I'm an O blood type or I needed an O, and you know everybody mentions their blood type and it drives me nuts because, as proof by Mimi, you really don't have to match at all, you don't have to be a good match, you just have to be willing and able and you can go through this voucher program.
Speaker 1:So this time around, when I got these articles, there was of course one story where the recipient was like well, I didn't think anybody was going to donate for me or could, because I was an O and I needed an O. And it was like oh God, are you kidding me? How is this still the conversation? But later on in that list there were a couple other stories where they were like no, we just needed somebody who was able to, and they, you know, they matched this person. I was able to get a kidney because of this, and it was all these voucher stories and I feel like that's kind of where we are, where we're kind of finally seeing that flip over into the Renaissance. I mean, it's still not the modern age, but I think we are finally starting to see that growth. But, mike, you deal with the hospitals more, so maybe you're seeing a little bit more of the old school.
Speaker 2:You know, in general I am a glass half full kind of guy, so I am optimistic that we're going to make change, and I think the NKR is is at the forefront of that, without a doubt. I don't think the you know, the number of living kidney donors in the United States would be where it's at without the National Kidney Registry. I'm I'm paid by them because I work for them. But I would say this, you know Jonathan and Mimi aren't, though. No, they're not, but I truly believe that.
Speaker 1:Mimi has to work for her daughter games checks.
Speaker 2:I believe that before June of 2022 when I started, and I still believe it now. And if you know, samantha and her dad ever choose to fire me, I'll still believe it afterwards. So I think the National Kidney Registry is Wait. Since when did I get firing?
Speaker 1:capabilities. They don't even let me go in front of a transplant center without supervision.
Speaker 2:That's true. Well, just one day maybe, you know, your dad takes a day off and he's like Samantha, you have the helm, and then you're like get rid of that guy, Michael, right away, first thing I'm going to do. Okay, so this involves my father going nuts Good to know. Okay, but I do think we're making strides for sure. So, as usual, I know that there's so much more that we could talk about today, both policy and science wise, including the HOPE Act of 2013,. Cutting edge transplant science related to hepatitis C, and so much more. But as we commemorate Pride Month, I want to bring it back to our two amazing living donors, jonathan and Mimi. I love to say that we have millions of listeners because, if I keep saying it, I think one day it will be true, and I have that one friend, dan, on the train. But I always like to ask is there anything that we haven't covered that you'd like to say?
Speaker 4:would like to say we covered it all, but I will say, just with Samantha's last topic about people still not understanding that you do not have to be a direct match, that's just really very real. People still say that to me about other friends or loved ones that they know that need a kidney transplant and they still try to tell me that that person needs to find a direct match. I'm like, wait, you're talking to me, I'm telling you I did not donate directly to my mom, so I'm an example, and they still, you know, just kind of gloss over it. So I think, just continuing to provide education, I'm so fortunate for everything that you both do and that the donor games and the National Kidney Registry all do collectively. And, like Jonathan said, I just want to be an example to others for so many reasons, and obviously we're on for a specific reason today and I'm very proud of who I am and I didn't have many people to look up to as a child and so I just want to be that person for others now.
Speaker 2:Jonathan.
Speaker 3:Yeah, I would say that I think a lot of times in media we see that the stories that are highlighted is just a donation story, and I think what's beautiful about this opportunity is that we get to see the life afterwards as well, that we get to talk about.
Speaker 3:You know, the story doesn't just stop there at the donation or surgery day as well. So I do encourage people to just be able to one obviously, hear our stories and hopefully feel empowered by it, but also to follow up if you have questions and to just continue the conversation, because I'm sure, just like Mimi, I know I'm seeing my dad and his progress now and because it's such a personal situation that we are in, obviously, that I donated to my dad. So you know the story continues and just thank you for the opportunity to be here and even introducing me to Mimi. Now I have someone else who is queer, who's part of the community, who donated, and that's just. It's so exciting to be able to say like, oh my God, there's someone else who has done it and yeah, Jonathan, she said gay woman, not queer.
Speaker 4:Hi Jonathan, send me. We're best friends already. I, we're best friends already, so it's awesome.
Speaker 2:Well, before Samantha says our final goodbyes, I honestly, truly, from the bottom of my heart, I want to say thank you to both of you. I admire both of you and I look up to both of you. So thank you for you know, for agreeing to come on and talking to us.
Speaker 1:All right.
Speaker 1:So, Jonathan, Mimi, on behalf of One is Enough and the National Kidney Registry, I want to thank you both for being with us and sharing your stories today, and you know, being as vocal as you are in all of the communities that you are a part of, Because it's not just you know the one, the LGBT community, I mean CrossFit marketing.
Speaker 1:You know Northeast, Midwest, et cetera and obviously, the living donation community, With support of individuals like you, that we will continue to raise awareness about the need for living kidney donation and the need for meaningful and accurate information about becoming a living kidney donor. I also want to thank everyone who is downloading and listening to our podcast. If anyone listening has been inspired to consider donation or at least spread the word about living donation, we greatly appreciate that. It really validates our efforts on this podcast. It's the reason that we are doing this podcast is to help literally anyone and everyone who needs a kidney get back to being that healthy person, and anybody and everyone who wants to donate a kidney to help someone get back to being a full, awesome, epic human being, regardless of literally anything else in their life that might define them. If you're looking for more information on living kidney donation, or you'd like to start the process of being screened as a potential donor, or you need some resources as a recipient. Please visit kidneyregistryorg.
Speaker 2:Cue the music. You can learn more about the podcast by visiting kidneyregistryorg slash one. 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.