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
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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.
One Kidney Donation & LGBTQ+ Community
Speaker 1Welcome 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 2Well , some of us have one kidney Samantha .
Speaker 1Okay , 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 2Yeah , can we agree on that ? One working one is enough . I think that's what we should change our title to .
Speaker 1That'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 2Thank 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 1Yes , she is Very high distinction , and I'm not surprised by it , given how much she does for us .
Speaker 2She's amazing and we have our newest guest , jonathan Calixto . Did I say that right , jonathan ? Yes , perfect , thank you .
Speaker 1See , we're already assuming we're getting stuff wrong .
Speaker 2No , 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 2My 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 2So 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 3Yeah 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 3And 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 3And 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 1Well , I know we're we're releasing this at a different date , but that date is coming up , so congratulations , Thank you .
Speaker 2So 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 3Yeah , 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 3Right , 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 2So can you go into a little bit of why you thought being a queer would would would affect you being a donor ?
Speaker 3yeah , 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 1Well , 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 2And I can talk a lot , so it keeps me quiet Same .
Double Guest Kidney Donation Exchange
Speaker 1OK , 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 4Yeah , 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 4My 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 1If 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 4When people are like oh , you're a triplet , Wow , what's that like ?
Speaker 2And I'm like I don't know One of three .
Speaker 4That'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 4Luckily , 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 4So 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 1Yeah , 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 4Yes , 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 4So , 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 4It 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 1But 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 4Yes . So the good news is you cannot offend me , because if you care about me , nobody can offend all the listeners .
Speaker 1That's right , you can't do that . Oh , definitely , we only have like 12 to begin with . Definitely A million .
Speaker 2What happened ? We had a million , like last week , we dropped oh my gosh .
Speaker 4Yes , you definitely can offend others , it's all .
Speaker 1Mimi's mom Just repeat listening .
Speaker 4That's right .
Speaker 2Hello Mimi's mom .
Speaker 4Yeah , 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 1She 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 4There'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 1I think Ronnie's the only one nervous mid-competition . That's right , and we love each other too .
Speaker 4So 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 .
Kidney Donation and LGBTQ+ Discrimination
Speaker 4I 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 4So Mimi and Jonathan before we get off your donation story topic .
Speaker 2Was 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 3Q 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 3You 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 3But 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 4I 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 1So I always say that none of them got tested . And today , okay , yes .
Speaker 4None 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 1That'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 4But 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 1So 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 4Yes . 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 4Actually 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 4But 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 4Yeah , 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 3That'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 4But 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 1Yeah , and I believe that you had another relative going through the process and they were not asked even remotely close to those questions .
Speaker 4Yeah , 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 .
Representation and Friction in LGBTQ+ Healthcare
Speaker 1Jonathan , you have a very specific look on your face . Would you like to respond ? Yeah ?
Speaker 3Jonathan's going to get him , I know . Give me an address , give me a location . Please drop a pin .
Speaker 4I did not use names .
Speaker 2He's going to send Mike to go stalk that guy . That's what's going to happen , yeah .
Speaker 1And you know what Mike's good at it . He probably could find out who it is .
Speaker 2And I'm from Queens , New York , so I know people .
Speaker 3You 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 3I 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 3You 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 1Absolutely , 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 3Yeah , 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 2we 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 .
LGBTQ+ Inclusion in Kidney Donation
Speaker 2The FDA only changed this rule in 2023 . So I'm hoping that this is a typo .
Speaker 3I 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 1Yes , yeah , literally not even a year .
Speaker 2I'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 1We're trying to keep this for anyone to listen to , but I think it goes to .
Speaker 2You 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 3And 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 4I 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 4I 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 4I 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 2Well 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 4Wouldn't that be great ?
Speaker 3I think you could kick Cody's butt .
Speaker 4Probably more , because it just keeps getting better and better . But again , that's a conversation for another time .
Speaker 1I would love to watch you beat Cody .
Speaker 3If you need a host , there would be popcorn .
Speaker 4Oh 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 2I 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 1So 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 4But you know what ?
Speaker 1it'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 3I would definitely say I mean obviously , as someone who comes from , like , the marketing communication space .
Speaker 3I 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 4That's a great point .
Speaker 2Well , 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 4No , 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 2I read your mind .
Speaker 4Yeah , 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 2That'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 2You 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 1despite the fact that Mike and I both drive Volvos , we are not sponsored by Volvo .
Speaker 2It 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 1I did . Oh , that's not trademarked , is it ?
Speaker 4Oh , 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 4We'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
Kidney Donation Impact and LGBTQ+ Representation
Speaker 4after 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 3Yeah , 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 3So , 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 1They 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 3I 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 4So 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 1That 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 2Once 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 4wait , 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 2And 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 1Oh 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 4I 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 3Yeah , 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 2I think that's a great question , samantha , because transplant as a whole is in the dark ages .
Speaker 1So you know , I got , I got transplanted in the dark ages . Mike , this , this is the renaissance , it's really it's bad .
Speaker 2You 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 1Yeah , 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 1So 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 2You 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 1Mimi has to work for her daughter games checks .
Speaker 2I 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 1capabilities . They don't even let me go in front of a transplant center without supervision .
Speaker 2That'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 4would 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 2Jonathan .
Speaker 3Yeah , 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 3You 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 4Hi Jonathan , send me . We're best friends already . I , we're best friends already , so it's awesome
Gratitude for Kidney Donation Advocates
Speaker 4.
Speaker 2Well , 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 1All right .
Speaker 1So , 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 1You 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 2Cue 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 .