“Giving of Yourself: Live Kidney Donation” – with Aviva Breda
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Dr. Fox: Welcome to today’s episode of “Healthful Woman,” a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OB-GYN and maternal-fetal medicine specialist practicing in New York City. At “Healthful Woman” I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness. All right, we’re here with Aviva Breda to talk about kidney donation. Aviva, how are you doing? Welcome.
Aviva: I’m great. Thank you so much for having me. This is so exciting. And I’m thrilled to be here.
Dr. Fox: Yeah. So, thanks for coming on the podcast, we appreciate it. Yeah, we’ve been going back and forth for a little bit of time about this as a really interesting topic, sort of, half of it on the medical side and half of it just, sort of, on the, you know, human interest side of it. Because it’s such a fascinating topic about live organ donation, obviously, because you’re quite alive sitting across from me and you donated a kidney.
Aviva: Yes, I did. I did. I donated my kidney on May 21st of 2019.
Dr. Fox: Fantastic.
Aviva: Yeah, it’s been such an incredible experience, and something that I really didn’t even know was a possibility. I didn’t know that you could be alive and
donate your organs. I mean, not all of them, but some of them, at least.
Dr. Fox: Excellent. So, just to take us back to the beginning of this story. So, you know, you had the donation in 2019. But give me your background. So, where are you from? Where did you grow up? You know, from birth to 2019, give me the synopsis.
Aviva: Okay, I’ll try to make it brief. I grew up in Fair Lawn, New Jersey. I went to, you know, the local schools and got married in 2001. And married my high school sweetheart, we’ve been together for a long time. We live in Teaneck, New Jersey. We have three kids, a 16-year-old boy, a 13-year-old boy, and an eight-year-old girl. So, at the time, my husband is an accountant and he works in the city. He has not been in the city for quite some time. But in theory, he works in the city, he was working in the city very long hours. I worked, actually, for a while as a preschool teacher, I did that for six years. And then when my youngest was born, I decided to stay home and be home with her. So, I did that. And then when she was about 4, really in full-time school, I decided to start my own business where I do personal shopping and I do a bit of event consulting and design consulting. So, I work for myself, which had a huge…that was a huge plus for me in terms of that. But so I was pretty much in the house with some outside forays.
Dr. Fox: Got it. And so, how did the idea of donating a kidney even come about?
Aviva: So, it’s actually a really interesting story. Like I mentioned earlier, I really didn’t even know that you could donate a kidney whilst being alive and remaining alive afterwards. There was, at the time, a very prominent rabbi in the community, Rabbi Adler needed a kidney. And there started to be a lot of information going around and posts on Facebook and things like that. And one of his sons donated his kidney to him. And I thought, oh, okay, that makes sense, you know, I guess if you can then, you know, your kid, your mother, your father, something like that, that made perfect sense to me. Then I started to hear more about this organization called Renewal. And what Renewal does is they facilitate the matching between donors and recipients.
Dr. Fox: Who don’t know each other?
Aviva: No, totally not. There are cases, obviously, when it’s a directed donation to a family member, or if you, you know, know that someone needs it, you can call them and say, “I’d like to donate specifically to this person.” But on the whole, they take people who are willing to donate and match them with people who need. They have a registry, and the benefit of going through an organization like Renewal is that I believe that UNOS organ donation registry, the wait for a kidney is close to seven years. And typically, that’s not even a live kidney. So, the research, and I’m sure you can expand on this, but the research that I’ve heard shows that a live kidney is just a much more effective organ. It works right away, it has a much longer shelf life, you know, it’s just a better option. So, Renewal really tries to find people who are willing to donate or who want to donate their kidneys and match them with the recipients who need them.
Dr. Fox: Right., because UNOS is really for people who unfortunately are, you know, passing away, and have their organ donor card. It’s not meant for people to call UNOS and say, “Hey, I wanna just donate a kidney randomly to somebody.”
Aviva: Right. Exactly, exactly. So, Renewal was involved in that donation and, you know, facilitating that even though it was directed within the family. So, they started to do these awareness events. And they started to try to spread the word really among the Teaneck community because, you know, Rabbi Adler was such a well-known person they felt, you know, this would be a great place to just spread some awareness. So, that’s really where I first heard about it. They had a humongous event. It was in 2017. I don’t know, there must have been close to 1,000 people in attendance, which is, like, you know, mind-boggling now, but it was a huge event. And they made it, you know, as a way to honor people who had donated kidneys in the past in the community, which was much more of like a quiet, not a secret, but it just, it wasn’t…I don’t know, or maybe I just didn’t know but it just wasn’t really so talked about.
And so, they made this beautiful event. And my husband and I are friends with Rabbi Adler’s son and daughter-in-law. And they reached out to us and they said, “Could you man one of the tables during the event?” They were gonna offer swabbing at the event for anyone who was interested. So, you know, we said, sure, we have no idea what that entails. But okay, we’ll sit at a table, sure. So, we did, and that night, I swabbed. I didn’t really know what I was getting into. But I said, “Okay, I’m here, I’ll swab the inside of my cheek, seems harmless.” And I had swabbed in the past for bone marrow, which is an entirely different registry. And so do both if you’re interested. But so I decided to swab.
And that night, I remember so clearly, they had on stage, they brought up a donor and a recipient who had never met, and they were meeting for the first time on stage. And it was just unreal. I mean, to see, not just the effect on the actual recipient, but her husband, her family, everyone who’s there. I mean, she saved the world, she saved the whole family just by donating her kidney, and to see her stand up there and be 100% fine and very much alive, you know, was so inspiring. And the thing she said that I’ll never forget is, “God gives us a gift of an extra kidney and it’s not ours to keep, but it’s ours to share.” And I had no idea, I really had no idea. I didn’t know that you had two kidneys but you really only need one to function completely fully at 100%, you know, capacity. So that stuck with me.
And I remember a day or two after the event, they were inundated with swabs. I mean, it was such an inspirational event that they couldn’t even process the amount of swabs that they got because it would have put them into bankruptcy. I mean, it costs so much money to process each swab so they were making calls. And someone from Renewal, someone who I’ve since become very close with, Irie [SP] called and she has a beautiful South African accent. And, you know, and I panicked immediately, I was like, “Oh my god, are you kidding me? You found someone already? All I did was swab the inside of my cheek.” And she said, “No, no, you know, we’re just calling to follow up with all the people who swabbed to see, you know, how serious, where their interests are.” And I said, “You know, okay, sure, send me some information.” So, she did. And it took me about two years until I actually called them back and said, “Okay, now I’m ready.”
Dr. Fox: And what happened in those two years that made you, or that solidified…obviously, the seeds were planted at that time. But what was it? Is it just time, or was an event, or what was it?
Aviva: It’s funny, the whole time, I really had it very…I wouldn’t even say it was in the back of my mind. It was very much in the forefront of my mind the whole time. And I kept saying to my husband, you know, “I’m gonna do it, I’m gonna do it. I’m really gonna do it.” And I think probably after a year-and-a-half, he turned to me and he said, “Okay, so do it,” you know, like, almost like I was threatening him all that time. And I did. And I called, I actually sent an email. Very, you know, unassuming, “Oh, I was just thinking about it, maybe it’s the right time.” And within 20 minutes, someone from Renewal called me back and, you know, they said, “We don’t take this lightly. If someone’s interested, you know, unfortunately, there are people waiting. So, if it’s something you’re thinking about, you know, we wanna give you all the information.”
And what was so interesting was that two years, almost two years later, they didn’t have my swab. My swab wasn’t viable anymore. So, he was so lovely, Rabbi Steinmetz from Renewal, and he said to me, “I’m gonna send you the kit, no obligations, nothing, you know, no expectations. I’m sending you the kit, if you decide to send it back, we’ll be happy to get it. If not, you know, no problem, no hard feelings. Lovely to talk to you.”
Dr. Fox: Right. They must toe a difficult line between trying to convince people to do it, but not trying to get someone to sign up, but then regrets it or backs out the last minute because it’s hard for them, I imagine.
Aviva: They have to be so careful. There is no pressure, no coercion, nothing. So much so that actually, I’ve spoken now numerous times at some of their awareness events. And every time, at the end, there’s a Q&A and someone will, you know, ask, “Okay, I can’t donate a kidney but let me give you money. Let me help the organization.” And 100% they will not take a penny from anyone who is affiliated with a recipient until the transplant is completed because there can’t be any ambiguity in terms of things like that. And they are so supportive. Every single time you speak to someone at Renewal throughout the entire process, they say to you, “Do you wanna proceed? Are you sure you wanna proceed?” You know, it’s an extremely difficult line because as the donor, even having expressed that you might want to donate, you almost feel this sense of…you feel like you’ve already committed and how could you say no?
When I went for my first physical, you know, my initial day of testing, and I met with a nephrologist and, you know, he just said to me, “Okay, you know, once you go through all the screenings and everything, you’ll decide when to do the transplant.” And I said to him, like, “Are you kidding me? Like, there’s somebody dying. What do you mean I’ll decide?” And he said, you know, it’s not like that. It’s not like someone needs a heart tonight or…you know. Like, unfortunately, people, you know, linger on dialysis for a long time and Renewal is extremely, extremely careful about making sure that everything is 100% in order for the donor and everything is 100% in the donor’s hands.
Dr. Fox: Right. Did you have any…obviously, you were thinking about it and you decided, but did you have any specific fears about doing it that either you had but got answered very quickly, or things that always lingered up until the day you did it but didn’t really want to talk about it, or anything like that?
Aviva: Truthfully, I really didn’t. There’s a book. It’s called “The Kidney Donor’s Journey,” 100 questions, you know, you’d wanna ask or you’re afraid to ask something like that. It’s written by Rabbi Ari Sytner, who lives in the Teaneck-Bergenfield community and he is a donor. So, I read through that book cover to cover. I really didn’t have any fears. For me, I was at a point in my life where I was, you know, pretty confident I was done having kids. So, the issue of pregnancy afterward, I wasn’t concerned about that. In terms of other health questions, you know, everything that I read about, heard about, talked about with people from the Renewal community and just doctors that I had met with, there really wasn’t any downside. I mean, they told me I would have to switch from Advil to Tylenol, which to me was terrifying because I relied on Advil. I thought Tylenol was just like, you know, candy, but I have since gotten used to Tylenol, and it’s okay. But really, other than that, there really wasn’t anything I was concerned about.
One thing that did come up, actually, it didn’t even come up for me, but it’s come up since, questions that I’ve gotten from other people, if you give it away now, what if? Like, what if your husband needs it or your mother or your kid or something? What if? And, truthfully, I really didn’t even think about it at the time, it just wasn’t…I don’t know, for some reason, it didn’t come up. But I just feel so strongly that someone else would step up. I mean just by saving mine, first of all, I might not be the right match, and there’s so many things that could go into it, it just didn’t feel like it was a reason not to do it.
Another interesting thing that came up was when I went in to meet with…not only, you don’t only meet with doctors, and you know, the surgeon, nephrologist, and things like that, you also meet with the transplant coordinator, and a psychologist and a psychiatrist and all of those people to make sure that you’re in the right, you know, mental space to do something like this. And one of the things that they asked was, well, what if it doesn’t work? You know, what if it fails? Or what if God forbid, the patient doesn’t come…the recipient doesn’t come through? You know.
Dr. Fox: It’s a good question. I didn’t think about that.
Aviva: You know, that was a really hard one. Because it’s almost like, you know, I wasted my shot, you know, this was my chance to do something. But I just, I don’t know, even after hearing that, you know, I wasn’t discouraged. I just felt like if that’s what it would be then…but thank God it didn’t. And, you know, it’s a scary thing. That part is definitely a scary thing to think about how would you feel if. But how could you make that decision? You know, I felt so strongly I was giving my kidney more to God to get to the right person than…maybe I would have felt differently if it was directed, and I knew where it was going, and I felt strongly about, you know, the health of the person, you know, specifically, but I just felt like it was out of my hands.
Dr. Fox: Right. At no time in this process did you know who it’d be going to, right?
Aviva: Absolutely not.
Dr. Fox: Right. That’s how it runs?
Aviva: Yeah, the only thing that I knew was that he was a man in his 60s and he had 2 kids, and that was it. That’s all the information…
Dr. Fox: And he could have been from anywhere in the world, right?
Aviva: Yeah, 100%, they fly people in, they bring people, for sure. And I knew he was registered at Cornell because that’s where I was having all of my appointments. So, yeah, it could have been anyone from anywhere, and you don’t know anything. And what’s really, really special about Renewal is that no one on the recipient side knows either. They didn’t know that I was testing and that I was his preliminary match. They did not know…
Dr. Fox: But they did know that it’s, like, in the works so to speak. Because you don’t want to let them down if it doesn’t happen, or you back out or something like that.
Aviva: Exactly. And they only find out…I’ve since gotten to hear the incredible story of how my recipient found out about his…that he was getting his transplant. Last year, I was able to be in Israel, and my recipient’s sister lives in Israel, and I was able to meet her and meet her daughter and it was really wonderful. And she told me that their parents are buried in Israel, and my recipient, his name is Ahmose, hadn’t been able to be in Israel for years. He couldn’t go and visit them there at the cemetery and be there with the sister and there was something that he felt very strongly about doing but because he was on dialysis and he was tied to the machines and the medications, he just couldn’t travel like that.
Dr. Fox: Right, just logistically it wasn’t an option.
Aviva: Absolutely. And she actually told me that they had finally decided, I think it was in March…March, April, May, maybe April, that, like, it was enough. You know, it was time they were going to figure it out and they had been through tons of different agencies and organizations to get all the medications he would need to have him set up on dialysis when he got to Israel. And he had finally booked a ticket, and they were on the phone and he got a call waiting. And the call that came in was from Renewal to tell them that the transplant was scheduled for two weeks from that day. So, it’s just so so incredible.
Dr. Fox: Yeah. What about your family, your friends, maybe more than your immediate family, so a little bit extended, when you told them, was the reaction like, “Oh, my God, you’re awesome, this is great,” or, “You’re out of your mind, what are you doing,” or I assume everything in between?
Aviva: I actually kept the whole thing completely quiet. I felt like this was a huge something I was going to do for me, it was something that I felt strongly about. And I feel like sometimes when you put something out, there’s a lot of pressure, and I didn’t want any undue pressure on myself. You know, I knew I wasn’t gonna back out. I felt pretty strongly about that. But I just didn’t want any…you know, there could be complications, things could come up, and I just didn’t want it. The only people who knew…I told my husband, obviously.
Dr. Fox: Well, no, not obviously.
Aviva: Well, I did tell my husband. You know, it’s funny that you say that…
Dr. Fox: Who knows. For all I know, my wife’s given away half her liver, you know. Maybe she didn’t tell me. I don’t know.
Aviva: It’s funny that you say that. There’s an entire group of Hasidim from, I believe, mostly New Square who donate kidneys without anyone knowing. Their spouses, nothing. I mean, they go on a business trip. But anyway, so my husband knew, my parents knew because I actually asked my parents for their blessing, I don’t wanna say permission. But I felt pretty strongly that if my parents were dead set against it…
Dr. Fox: They gave you two kidneys.
Aviva: Exactly, that I wasn’t gonna go through with it. And thank God that was…my mother was a little more of a hurdle than my father. But they did give me their full support. So, they knew. I told my sisters, probably the end of March. The whole thing started probably January, beginning of January, and the transplant was in May. So, I didn’t tell my sisters until March, and that was it.
Dr. Fox: What did they think about this?
Aviva: Everyone was really, really supportive. I think there was a lot of like, “Oh, my God, she’s out of her mind.” But they kept that more to themselves. But they were really, really supportive of it. I think they all just felt like, wow, that’s an incredible…
Dr. Fox: They didn’t expect to hear that.
Aviva: Exactly. It was definitely a surprise.
Dr. Fox: What about afterwards then when everyone found out? You know, what were the responses? At some point, people found out. I mean, you’re talking on a podcast, I assume somebody knows.
Aviva: Absolutely. The morning of the surgery, in the Uber at 5:00 in the morning, there was a select group of people who I felt I wanted to make sure they heard it for me. So, I sent a text, a very like, “This is what’s happening and I wanted to make sure you heard it from me.” The response was overwhelmingly positive. I didn’t speak to anyone that morning but the texts that I got back, except for one who…
Dr. Fox: “Turn around.”
Aviva: No, I mean, it was still extremely positive. It was just, like, “I’m not sure how I feel about this,” you know, which I think was part of the reason that I wanted to wait. You know, I just didn’t know that I could handle all of that pushback or even just questioning, like,I just…
Dr. Fox: Yeah, just makes the whole process longer, I guess. I don’t know, do most people, sort of, do it the way you did, keep it quiet until or do most people…I mean, what’s your experience just in this world?
Aviva: So, it’s really a big mix. Some people are, like, you know, posting on their Facebook accounts, 10-day countdown or, you know, whatever, and other people are just, some people are even more quiet than I was, you know. Renewal likes to do on the morning of the transplant and, you know, unfortunately, with everything going on and not being able to be in the hospitals with the patients now, it’s a lot harder. But the way that it was, you know, there’s a coordinator, your donation coordinator who meets you in the hospital that morning. And what they typically do is they’ll do a short video of the donor right before surgery just, you know, talking about what’s going on, and then they match it up with a short video of the recipient. And they put that out while you’re in surgery so that people can, you know, pray for you, have you in mind. And a lot of people found out that way, from my video, which was, kind of, my intention because at that point it was, like, out of my hands. I was already in…
Dr. Fox: You’re under anesthesia.
Aviva: Exactly. Like, say what you want to say it’s all over. But there’s definitely a mix, there’s definitely a mix. For me, actually, I told my two older kids probably a week before, and I didn’t tell my daughter who was 6 at the time until the night before.
Dr. Fox: Right. And so, before we get to the day of, what is the process leading up to you…you know, from that call where you said, “I’m interested.” And, you know, you mentioned you’re at a doctor, what actually happens, sort of, step by step?
Aviva: Sure. So, the first step is swabbing. It’s a cheek swab on the four quadrants of your mouth. You mail that back in, it takes about three to four weeks for them to process the swab, have everything tested. And then they…
Dr. Fox: That’s just DNA testing, basically.
Aviva: Yeah. You know, I wish I could tell you that I knew what they’re looking for. I know you need to be a blood type match and something called maybe HLA.
Dr. Fox: Yeah, it’s basically how they match people for organs or anything like that. It’s a DNA test, essentially.
Aviva: So, they do that. And then once they find your preliminary match, they’ll call you and say, you know, “Okay, you know, if you’d like to proceed, we have a preliminary match who is registered at…” They work mostly with the hospitals in New York City, Hackensack, Northwell as well, and Cornell, I believe, Mount Sinai, and NYU I know for sure.
Dr. Fox: And they mean that Renewal has access to the database of people looking for kidneys and their genetic information, or they just send this to the hospital say, “Hey, here’s the option, these are our people. Does anyone match?”
Aviva: Renewal has their own database of people. And these people are registered with one of the hospitals that Renewal works with. So, I don’t know exactly how that…
Dr. Fox: Like, who holds onto the spreadsheet? Okay, that’s fine.
Aviva: I don’t know exactly that part, but I know that that’s where they have relationships with the surgeons and the transplant teams and all of that, and they had access essentially to those…
Dr. Fox: Okay. So, they tell you there’s a preliminary match, and then phase two.
Aviva: Exactly. Phase two is then you are contacted by the hospital where your preliminary recipient is registered. They set up a full day of testing, you know, they joke that it’s like the million-dollar physical. If you ever want to get a really great physical, just offer to donate your kidney. So, it consists of a 24-hour urine collection, you know, before the appointment, they took probably more blood than I thought I had in my body. And then you are examined by a nephrologist. You meet with a psychologist, a transplant coordinator, and also get an EKG and a chest x-ray. Does that makes sense?
Dr. Fox: Yeah, I guess so. And all of this, obviously, you’re not paying for anything. This is all part of the plan.
Aviva: The donor never even takes out an insurance card. It’s, like, a bizarre experience. Every expense is covered by the recipient’s insurance and it’s really, it’s a full, full, full day. You do all of those things, you spend the day at the hospital, and Renewal sends a…in my case, and I hope that they’re still able to do this now, they send your transplant coordinator to sit with you. I mean, he treated me like a celebrity, [inaudible 00:22:27] my coat, brought me snacks and coffee, and it’s phenomenal. So, that was that. I went home. And they tell you again that the transplant board then has to meet about two weeks later. And from that day, I was like, I was so anxious. I was like, oh my god, what if they don’t take me? What if I messed up? What if something is wrong?
Dr. Fox: You failed. That’s bad news.
Aviva: It’s crazy. There are so many stories of people whose lives have been saved from that.
Dr. Fox: Because they find some illness or something, yeah.
Aviva: Something that they’ve never expected. And most of those people have gone on to be able to donate later in life once they’ve resolved whatever happened. So, after that, once you’re approved by the transplant board, which feels like…it felt like winning the lottery, it was such an exciting day, they ask you, “Okay…”
Dr. Fox: It’s amazing that it’s an exciting day to find out you’re allowed to give up a kidney.
Aviva: You know, it’s the mindset that I was in from the time that I actually decided, like, okay, I’m really gonna do this until it happened, like, it was like, I think I’m still there now, you know, just emotionally has changed my life so, so, so much. So, they approved me, I was thrilled. And then they said to me, “Okay, give us a call when you wanna schedule the transplant,” just like that. And I said, “What do you mean? Like, let’s do it.”
Dr. Fox: Whenever you’re ready.
Aviva: You know, so they said, it really has to work for your schedule. It’s really all about making it as easy as possible for the donor.
Dr. Fox: Right. Because you have to take off X amount of work and, you know, all those things afterwards.
Aviva: Yeah, you have to…you know, they wanna make sure that it’s gonna work best for you. So, you know, I looked through my calendar, and I said, okay, it’s after Passover, that’s a good time. Before my parents go back to Florida, that’s a good time. Maybe they’ll be around to help with the kids. And I said, let’s do it on a Tuesday so hopefully, I’ll be home for the weekend. So, we scheduled for May 21st, and that was it.
Dr. Fox: How long were you in the hospital afterwards?
Aviva: Typically…I don’t wanna give kidney donation a bad name. Kidney donors are typically in the hospital for two nights.
Dr. Fox: Say it’s on Tuesday, go home Thursday.
Aviva: Exactly. And that is really, really typically how it goes. I’ve actually met numerous donors who have gone home after one night.
Dr. Fox: And the incision’s very small, they do mostly laparoscopic, right?
Aviva: So, the surgeon that I had at Cornell, his name his Dr. del Pezzo, and he is…Typically, you have three incisions like an in, out, and something else, I don’t know. But I only have one. One very small incision by my bellybutton and I actually asked him if he could use my C-section scar but he told me it was nowhere near where he needed to go.
Dr. Fox: Right. Now he’s taking out your bladder.
Aviva: Yeah, exactly. So, yeah, a very small incision at my bellybutton, but because it’s laparoscopic and they have to fill you with air, it caused some problems for me afterward so I ended up in the hospital for five days, but not…it could have been from any surgery. It had nothing to do with the fact that it was a kidney.
Dr. Fox: Right. It wasn’t a kidney complication.
Aviva: Not at all. It was just, the anesthesia was just taking its very sweet time to pass through and it just made me uncomfortable, and it just made things a little slower.
Dr. Fox: Okay, so you have a nice room overlooking the East River Manhattan for five nights.
Aviva: Private room. I mean, beautiful. They treat you like a queen. You know, they roll out the red carpet for donors there.
Dr. Fox: Right. Okay, so typically two days, you stayed a few extra days, you go home, and then how long are you basically, sort of, confined to home or recovering and, you know, with all those…?
Aviva: So again, typically, they say, you know, you’ll be out of work two to four weeks. Luckily, I work for myself, so I gave myself a lot more time. The first week or two that I was home, you know, the big accomplishment was walking up the block, then it was walking around the block, you know, without needing a nap or anything. It’s just, you know, the surgery just takes a toll on your body.
Dr. Fox: Sure.
Aviva: So, that’s all it really was. I really didn’t have any other issues. Everything else worked really fine. I used a heating pad for comfort. You know, I had some shoulder pain that’s caused from the trap tear, I believe. I remember they warned me that they once had someone who thought they were having a heart attack but it was just the…
Dr. Fox: When air gets caught under your diaphragm, the nerve actually, like, the right shoulder typically hurt. It’s a weird thing but people know that after, like, a laparoscopy that happens, it’s a known complication…not complication, side effect, I guess.
Aviva: Exactly. So, that happened. But that was really it. And I would say, for me, because I took it very slow, I waited a little bit longer to drive, and then I was back to exercising at 10 weeks.
Dr. Fox: Yeah. Did they give you any long-term follow-up saying, “Oh, because you did this you have to see the nephrologist every year,” or this, or they just said whatever, see your regular doctor?
Aviva: The only follow-ups are the surgeon, you see a surgeon like two weeks after, four weeks after just to check on the incision. And then the hospital follows up at six months and a year and, I believe, at two years just bloodwork checks, all your levels, make sure everything’s good. And other than that, you’re really set with your doctor. I actually thought I was gonna get a nephrologist but there’s really no need.
Dr. Fox: Right. I mean, if you’re well, you’re well.
Dr. Fox: And then when did you ultimately learn who the recipient was, and then meet the recipient, if you did.
Aviva: I did. So, I learned actually the day…The day of my surgery, my husband and I were in the waiting room and Renewal had told us they’re very careful about keeping the donors and recipients apart in the hospital. The only part that they can’t control is the surgical waiting room. And we saw a family there while we were waiting to go in and a man who looked to be in his 60s with his wife and 2 kids. And we were like, okay, that’s him. That’s definitely…
Dr. Fox: With a sign that says, like, “I am on dialysis,” okay, got it.
Aviva: So, we were sure that that’s who he was.
Dr. Fox: But he would have no idea, obviously.
Dr. Fox: Right. You’re just someone in the waiting room, yeah.
Aviva: Yeah, but the joke was on us, it was not him. He was actually there for a completely different procedure.
Dr. Fox: It was someone else. Sorry. Okay.
Aviva: So, my husband found out who the recipient was. Not him, but his sister who we ended up meeting in Israel, she was there the day of the surgery. His wife wasn’t able to be there with him. And so, my husband ended up meeting her during the surgery in the waiting room.
Dr. Fox: Coincidentally?
Aviva: The coordinator from Renewal was sitting there and his sister, my recipient’s sister was by herself, and he felt like she might need a little bit of comfort. And so, my mother was there. So he asked, you know, would you like to meet her, and he facilitated that. I only found out my recipient, probably late than that night after I woke up when I watched the video. So, I got to see him on the video.
Dr. Fox: And is he in the same surgical floor as you afterwards? Like, you can just walk down the hallway and have coffee together?
Aviva: You could, people have. People have even been wheeled into recovery next to each other, you know, but we did not meet in the hospital at all. I believe he actually might have left the hospital before I did. But that’s okay. It’s okay. And…
Dr. Fox: Feel a little guilty about that. I’m going home, my donor’s still here.
Aviva: I don’t know that we even corresponded until seven months later, we actually met…similar to the story I described earlier, we met…
Dr. Fox: At an event.
Aviva: …at an event on stage.
Dr. Fox: Is that typical? Is that how it usually happens? Because it sounds like a huge selling point for Renewal. They’re like, these events are awesome. It’s like bringing the soldier home from Iraq and meeting the kid at a football game and it’s just unbelievable, everyone cries.
Aviva: It’s extremely emotional. Typically they do orchestrate some sort of dinner, like, some…but usually, it’s much smaller, whatever. They’ll save some of these sometimes for…They had asked me actually in September, I kind of got a little itchy, like, “Okay, I’d like to meet him if he’s interested,” obviously, it’s everyone’s own discretion. And they asked me, “If your recipient agrees, would you mind waiting? Like, we have something in mind, would you mind waiting?” And I said, “If he agrees, then I’ll agree, you know, whatever he wants.”
Dr. Fox: Are there a lot of recipients who don’t wanna meet the donor because they’ll feel, like, beholden to them? Does it happen a lot?
Aviva: It actually happens more that the donors don’t wanna meet the recipients.
Dr. Fox: The donors don’t want…
Aviva: I found.
Dr. Fox: Really? For what reason?
Aviva: I think it’s because it’s uncomfortable. I mean, it’s like, you know, they wanna say thank you, but…
Dr. Fox: Right, you didn’t do it for that reason, I get it.
Aviva: And not only that. It’s like, they feel like saying thank you is never enough. So, it’s like, thank you and, thank you and, thank you and…It’s like there’s no way to, you know…
Dr. Fox: I understand. It’s almost like you don’t wanna make the recipient feel uncomfortable. And you don’t wanna, like…yeah, that makes a lot of sense. And listen, people who do this are obviously very giving people, right, it’s not just a random person off the street, it’s they’re people who have made a conscious decision to give to someone they don’t know because they think it’s the right thing to do. So, I would imagine that group of people is also very sensitive to the feelings of the recipient and not making them feel uncomfortable about this, which is nice.
Aviva: Right. I mean, it’s also, you know, some people don’t want to know what’s going on after.
Dr. Fox: I get it.
Aviva: You know, like, how are they living their life? Are they…
Dr. Fox: Like a stock ticker.
Aviva: You know, like…exactly.
Dr. Fox: My kidney is up. My kidney is down this week.
Aviva: Right. Yeah. So, I think that that definitely plays a part. But we did get to meet and it was very, very emotional and very beautiful. It was exactly like you described, one of those, you know, soldier coming home from war type moments. It was incredible and now, you know, we shared our first kidneyversary. Unfortunately, it was during COVID so we couldn’t do anything. I was hoping to have some sort of dinner or something but, you know, we send each other cards and texts, and every once a while he’ll send me a funny story, or whatever, just some updates, and now we’re friends on Facebook, so I get to see part of his life. And yeah, it’s been just an incredible, incredible experience.
Dr. Fox: And then you’ve obviously…you said you’ve spoken about this before and this isn’t your first time being on a podcast or…Is that something that Renewal asks you to do? Is it something you just…since it was such a positive experience for you, you feel compelled to tell your story, to give others, you know, just a sense of what it’s like if they wanna consider it? Or what’s your reasoning behind all this?
Aviva: It’s a little bit of both, actually. Right after I donated, I automatically felt, like, a shift. I don’t know how to explain it. It’s something that most donors say, and when I heard people say it before that donated, I thought they were absolutely bonkers. When you look back at the process, you know, our only regret is that we can’t do it again. It’s a one-and-done, you know, there’s no more. So, I just felt like if I could give a piece of that to anyone else, you know, how incredible that would be. I think it was about seven weeks, six or seven weeks after my donation, I got a phone call from Irie at Renewal asking me, she said, “You know, I know it’s so last minute, the donor we had who was gonna speak at this, they had an event somewhere near here on the Upper East Side, for some reason, they couldn’t come. Would you mind coming and just telling the people about your experience?” And I was like, “Tonight? Like, that’s crazy.” And I said, “Okay, fine.” And I whipped something up quickly, and after that first time, it was like, “Okay, that’s it. I have to keep doing this, you know, this is incredible.”
So, I just feel like because I didn’t know, there’s still so many people who don’t know. Renewal gives you, like, a little swag bag after you donate. One of the perks. And in it is a bumper sticker and it says, “You’re following a live kidney donor.” And for your family, they give one, you know, “Proud family of a live kidney donor.” And I never put bumper stickers on my car. I don’t care what my kid did, he’s not getting a bumper sticker on my car. But this one is on my car. And I mean, I’m so careful with it when I go to car washes, I take it off first. You know, I wanna make sure…
Dr. Fox: It’s like a magnet, you mean?
Aviva: Yeah, exactly. And it just makes me so happy to share with other people that it’s something anyone can do, essentially. You know, you don’t need to be a certain…I don’t know, I can’t be a heart surgeon, I can’t be…you know, but this was just something that I could do. And I remember driving one time and someone kept honking at me. And I was like, what, like, leave me alone, and as she drove by me, she just gave me a thumbs up, you know.
Dr. Fox: It’s nice. Yeah, it’s just something really…it’s really special.
Aviva: Do you know anyone who’s donated a kidney subsequently because of one of your talks?
Aviva: I do. Yeah. I do.
Dr. Fox: That must be pretty cool.
Aviva: It is. My husband and I used to joke that we should, like, do a shot of whiskey or scotch each time. Yeah, I do. And I actually know of two people who were able to get kidneys. I spoke, you know, on their recipient’s behalf and they got kidneys as results of the events.
Dr. Fox: Wow. Does Renewal have, like, a program where donors who are considering it and want to talk to other donors either in person or anonymously that they can do that? I assume most people who donate are happy to provide that.
Aviva: Absolutely. Yeah. I’ve spoken to numerous people and one of the…you know, Renewal aside, and Renewal is a humongous part of my life now, but one of…A really special thing I got to do once was a friend of mine had a colleague who was donating to her father completely, you know, separate from all of this. Just, you know, a colleague who works in a public school and he said to me, “She’s so nervous, and she’s gonna do it anyway because it’s her father, but she is so nervous. Could she just maybe talk to you?” And I got to talk to her, and I cried with her, and it was incredible. And still, I mean, this is probably close to a year ago, and I still check in with her from time to time to see how she’s doing and how her father’s doing and just to be able to share with someone, you know, going through an experience like that, it’s unbelievable, it’s just such a beautiful thing.
And Renewal has this really special…we have a WhatsApp chat called, you know, Donors, and we just get to share, like, in a community of people where I never would have met any of these women before. And they also do…before COVID when it was easier to get into hospitals, I used to go and visit donors, you know, the day or two after their surgery, and just, you know, sit with them and say, you know, “I’ve been here, I’ve been where you are, and it’s gonna be okay.” Because the first, you know, day or two after surgery can be unpleasant.
Dr. Fox: “I’ve been where you are for five days, actually.”
Aviva: I don’t always tell that part of the story, but they really just…I’m such a part of the community now. It’s such an incredible community of people who really, really are longing to do something more, you know. And it’s a joke that we have, but it’s so unfortunate, if only they could figure out a way to take both of the kidneys.
Dr. Fox: Wow, it’s amazing. I want to ask you one last question before we wrap up here, this amazing story. Looking back over the past, I guess, you know, two-and-a-half, two years, what have you learned from this either about yourself or about life in general, or people? I imagine there’s a lot that you’ve learned.
Aviva: Absolutely. I would say the most glaringly…the thing that stands out the most is that there are just so many good people out there in the world, there just are. People are inherently good, and they just want to help. A lot of times, they just need to know that they can and that certain things are even possibilities. You know, so many times we’ll do these big events with, you know, hundreds of people now on Zoom, and it’s not even about who’s there, it’s about the people who have in them this, like, spark of wanting to do something, not knowing what that right thing is. And then they hear about, you know, kidney donation, for example, and then it just sparks in them that they can do something. And I’ve just been so privileged to meet so many of these people who are just so willing to give. People are good, people are good, and they just want to do what they can. And, you know, even though this is not the right thing for everyone, and I totally understand that it’s not, you know, there are so many things that people can give and they want to give, they just need to know that they can.
Dr. Fox: Wow, that’s amazing. Aviva, thank you so much for coming and talking about your story. The organization is renewal.org if you’re interested, and I think that I also twisted your arm and coming back and talking about, way back when, your own birth story. Not related to your kidneys, just in general. So, we’re gonna have you on again, but thank you so much.
Aviva: Thank you for having me. This has been really wonderful.
Dr. Fox: Thank you for listening to the “Healthful Woman” podcast. To learn more about our podcast, please visit our website at www.healthfulwoman.com, that’s healthfulwoman.com. If you have any questions about this podcast or any other topic you would like us to address, please feel free to email us at firstname.lastname@example.org. Have a great day. The information discussed in “Healthful Woman” is intended for educational uses only, it does not replace medical care from your physician. “Healthful Woman” is meant to expand your knowledge of women’s health and does not replace ongoing care from your regular physician or gynecologist. We encourage you to speak with your doctor about specific diagnoses and treatment options for an effective treatment plan.