Episode 65: Living Kidney Donation with Amanda Nicastro

Episode 65: Living Kidney Donation with Amanda Nicastro


Amanda Nicastro is a writer and actor based in NYC. In 2014, her sister Brenna needed a new kidney. While Amanda wasn’t a match, she was able to find an exchange program that allowed her to donate a kidney for someone in need, and for Brenna to receive a kidney that met her body’s needs. While Amanda isn’t the most comfortable with the idea of being a “hero” — a title often bandied about in response to her “sacrifice” — she decided to use this overwhelmingly positive response to her actions to call attention to the importance of organ donation…while also hilariously sharing the ins and outs of the kidney donation journey (such as: carrying a cooler full of her own pee through the NYC subway). She wrote the award-winning solo show I’m Just Kidneying, which takes a whimsical look at the process of living kidney donation and “pokes holes into the idea of what it takes to be ‘hero material’.” The show has toured extensively in the US, and even recently at the Edinburgh Festival Fringe. As AM New York says, “She may have donated a kidney to a stranger, but Amanda Nicastro still has her funny bone.”



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Lauren: All right guys, thank you so much for joining us. I am here today with Amanda Nicastro. Amanda is a writer and actor of an award-winning show that actually went to the Edinburgh Festival Fringe recently, called I'm Just Kidneying, which she's going to tell us all about. Because she is the loved one of somebody with an invisible illness. So Amanda, thank you so much for joining us.

Amanda: Thank you for having me!

Lauren: It’s totally a pleasure. It's so great to finally meet you. Amanda is the wife of a very good friend of mine from New York. So this is just such a pleasure to actually properly meet you and chat. So let's start from the very beginning. When and how did you first realize that your loved one, in this case your sister, was sick? What was going on that brought you guys to this point where you were helping her out?

Amanda: She was diagnosed when she was in the fourth grade. So the events surrounding her diagnosis are, at this point, a little fuzzy for me. I don't exactly remember what prompted my parents to be like, “No, something's wrong.” She was diagnosed with nephrotic syndrome, in the fourth grade, which they later re-diagnosed as FSGS, focal segmental glomerulosclerosis.

Lauren: That doesn’t sound confusing at all!

Amanda: Big long name … and basically, it attacks the filtration systems in the kidney and, for lack of more medical explanation terminology, It turns the filtration system, basically, into the scar tissue — and the kidneys can't do that part of their job. But yeah, I most vividly remember the time after her diagnosis. I don't remember this, but my mom had told me this story … it was one of the times where they had come back from meeting her nephrologist, and they started to talk about … in the event she would need a kidney transplant.

Because with FSGS, it's not a matter of if your kidneys fail, it's a matter of when they fail.

Lauren: They were talking about replacing the whole kidney and not just the valves?

Amanda: Yeah, a whole total kidney transplant. When you have a disease that affects the kidneys you're born with, they don't take those out. When she got a kidney transplant the first time around — she's had two — they just put the new one in. They put it in like a pocket in your pelvis in the front. Then the two that are left, the body kind of reabsorbs them once they stop working.

Lauren: Wow!

Amanda: The way it was described to me is that they eventually become like the size of a walnut.

Lauren: Wow. And they just stay in there?

Amanda: I doubt there's much of them left at this point. Her original kidneys stopped working a long time ago, and the way it was explained to us is, the body kind of breaks down tissue that's dead … for lack of a better word or, not being used.

Lauren: And absorbs it, as you've said. So is this a situation where she would constantly need to have transplants? I know you said that she's had two transplants. But does it mean that the two that she's had transplanted will eventually be reabsorbed by the body, and she'll need new ones again?

Amanda: They don't know. Her disease … typically when you get a transplant, it can go into remission. Sometimes it doesn't. For my sister, when she got her first transplant, she got a kidney from our dad. And it did recur. She got nine years out of the first kidney. And then her and I are not blood type matches.

But I was able to donate for her via a paired kidney exchange.

Lauren: What does that mean?

Amanda: We were matched with another donor and another recipient, and we basically swapped kidneys … like Hot Potato Kidney Swap! (laughs)

Lauren: Wow!

Amanda: We actually did wind up meeting them later; it was a husband and wife. I gave my kidney to his wife because I matched her, and then he gave his kidney to my sister because they matched each other.

Lauren: So this is a system that exists?

Amanda: They do long, long, long, big chain sometimes, yeah.

Lauren: Wow. That's amazing. And where did these people live?

Amanda: They actually live in North Carolina.

Lauren: Wow. You guys are in New York, or you're in New York. Where's your sister?

Amanda: I’m in New York. My sister is also in North Carolina.

Lauren: Okay. So the bottom line here is that your sister got a kidney from your dad, and then you donated a kidney. So you're a loved one who has participated to the point of donating a kidney — whether it went directly to your sister or not. She got a kidney through the exchange. So how did her FSGS affect your relationship and your day-to-day as you were growing up, up to the point of donation?

Amanda: When we were kids and growing up, before, I want to say before the first transplant, I feel like we had a very normal sister relationship. We're five years apart. So there was a chunk of time where I hit puberty, and she was still very much a kid, and I was, like, “Leave me alone.” And she was, like, “Why doesn’t she want to play with me?” It was kind of like that until I graduated from high school, and I think we started getting closer, because she was older now and in her teens, and then also when I wasn't a match … I got tested the first time around, and I remember being, like, “I'm going to do this.” Growing up with her and this diagnosis, and watching her have to do things like low sodium diet and taking medication every day at the same time, I was like, “No, I want to do this for her.” And then I wasn't a match, and that …

Lauren: … was a blow.

Amanda: It was really hard for me, and I think we started getting a more closer relationship at that point. I remember going on weekend trips to go visit her. She went to the University of North Carolina Asheville, so I would go spend the weekend with her. And I definitely think post-donation, we have a better relationship for it. They recommend eight weeks, because you're not allowed to lift anything heavier than 10 pounds for eight weeks. And I took the whole eight weeks off, and we basically spent that summer that we both had our surgeries together bonding, bingeing Netflix. It affected our relationship positively.

I would give anything for her to have two normal working kidneys that she was born with.

We have a really good relationship.

Lauren: And how long ago was it that you donated the kidney?

Amanda: I donated five years ago. So she's gotten five years. And to your earlier question, we don't know. Right now, she’s still good. The FSGS actually recurred after her second transplant. But they did a treatment option where they filtered some kind of protein out of her blood. They put a port in her chest and it's sent it back into remission. So it's not affecting the newest kidney anymore. And as far as I know, she's still good. In fact, the last time I talked with her, she had been told she could do her blood work every other month, instead of every month. And I remember when she used to have to do it every week. So that's a huge deal for chronic kidney patients.

Lauren: Yeah, absolutely. It sounds like you guys are really close, and this has only brought you closer. But did you ever at any point feel like you were making sacrifices for her, or anything that sort of made you feel negative about the experience? Or that the experience was unjust for her?

Amanda: Well, I definitely felt like things were unjust for her. There were periods before her first transplant where she was on certain medications that would make her gain a lot of weight, steroids that caused a lot of hair growth. And that was during her teen years.

Lauren: Which are awkward enough.

Amanda: Yeah, they’re awkward enough. You don't need extra awkward. I remember one of her favorite foods as a kid was potato chips, and when you're on a low sodium diet, you can't have those. We had that relationship where I would definitely tease her about some things, but I never teased her about any of those. Because I was, like, no, that's off limits. I would say something like, “Brenna, I’ve already had five glasses of water today. How many glasses have you had?" She’d be, like, “Shut up.” She's supposed to drink tons of water. But I wouldn't poke fun about the other things.

“Unjust”, as you said, was definitely the right term.

Lauren: Yeah, but it sounds like you never felt like you were sacrificing anything. And obviously the thought of donating your kidney … it was a given to you.

Amanda: Yeah, no, I've never felt like I've had to sacrifice anything. Even though I did, literally, give up a kidney! (laughs)

Lauren: (laughs) So, you did technically sacrifice something!

Amanda: Honestly, if I ever viewed anything as a sacrifice, I probably would have done it anyway.

Lauren: Because she's your sister and you love her.

Amanda: Yeah.

Lauren: So, okay, why don't you tell everyone about the show that you created about this experience. It's called I'm just Kidneying … which is such a cute title. Because obviously this is a part of how your support of your sister has turned into advocacy on a larger scale. So tell us about the show, and about the work that you're doing to raise awareness for kidney diseases and donations.

Amanda: It's a one-woman show.

It's an hour long, and I like to describe it to people as: It’s like a sketch show and a storytelling show had a baby.

So it cuts back and forth between flashbacks to that summer the transplant took place, and then more narrative storytelling monologues where I do interact. There's no interaction. There's no audience participation. But the fourth wall comes down. I have to tell people that because people get very much, like, “Oh, audience participation?!”

Lauren: People freak out about audience participation, yeah!

Amanda: And it pretty much follows the story of the evaluation process of donating a kidney. And how I do not feel comfortable with the label ‘hero’ — because when you tell people you donated a kidney … Via doing the show, I've met so many other living kidney donors, and most of them will tell you the same thing: It's just really awkward for people to come up to you and be, like, “Oh my God, you made such a sacrifice!” For most of the living donors I know, either they knew the person they were donating to or for. Or, they have a very personal reason for why they wanted to do it. In their mind, it's more of like a civil duty; it’s something you do to help other people. It's the same as you would do if you were going to donate to a charity at the end of the year or volunteer for Habitat for Humanity or something. It's your way of giving back to others who need something. When I first started writing the show, I did not have such an idea of advocacy in mind. I was really just jotting down the funny things that would happen. When you donate a kidney, you have to do a 24-hour urine collection. And you have to keep it cold. So I packed my urine sample in my jug in a cooler, because it had to be cold. I don't own a car in New York. I did most of my evaluation testing remotely. And so I went on the subway with my little cooler of pee. And this guy, this creep guy, comes up … because you know, guys will take any opportunity to talk to a woman out in public who would prefer to be left alone. And so he comes up to me, and he’s, like … he didn't ask specifically what was in the cooler, but he would say things like, “Are you going on a picnic? Is it your lunch? Are you going to the beach?” In real life, I shuffled away from the creepozoid and made my way. But I was on the train and I was thinking, like, wow, that would be a really funny scene if I was, like, “You want to know what’s in the cooler? It’s a cooler of my own pee.” And now I'm the weird one on the subway platform.

So, I just started writing down all of these funny anecdotes and thoughts about the process.

The first rendition of the show was really just like a 30-minute sketch show, that went from comedy scene to comedy scene. It always did culminate at the end of the show, with, “You know, my sister is the one who deals with this illness that people don't always know that she has. She's the real hero. She's the one that has to take pills every day. She's the one that has to get her blood tested and all that stuff. She's the one you should be heaping praise upon, not me. All I did was binge Netflix for eight weeks, and then I went back to my life as normal. Nothing about my life has changed.” It was later on that I added larger parts. Like I have friends who live in Texas whose father passed away not too long ago. Because he was on dialysis so long, it took such a toll on his body and other aspects of his health: he took a turn for the worse. He was no longer an eligible candidate for transplant. It happens to some people; you've got active and you've got inactive members who are waiting for organs. The inactive people will never be cleared for surgery, for whatever reason in their personal medical history. And when he was given that news, at some point he decided that the quality of his life was no longer what it should be. And he made the decision to stop doing dialysis, and they put him in hospice care. Most people don't realize that dialysis is sometimes the most sh**y thing for people to go through. My sister, thankfully, has never had to go on dialysis. By the time her kidneys reached a point where she needed a transplant, she had two living donors who stepped up — so she's never had to do that. But she might, you know. So I've incorporated other stories like that. In the US, every 10 minutes someone is added to the organ donor waitlist. Not just kidneys; that’s a statistic for everything. But that's every 10 minutes somebody has been told: “You need an organ transplant.”

Lauren: Aside from the fact that that's no joke, the wait periods for these organs can sometimes be very long.

Amanda: Years.

Lauren: Yes, years. If, as you say, you even end up getting the organ in time, right. So, you've taken the show around the world, you've taken it around the country, and you've taken it over to Edinburgh. Obviously, you're receiving awards for it and getting notice. And as part of what you're doing with the show, you're also doing some awareness-raising about organ donation, aren't you.

Amanda: Yeah, I work closely sometimes with LiveOnNY. They have DMV drives. They have Legislation Education Day where we all go up to Albany — staff members and other volunteers, and other people who had transplants, or donor family members — people who made the decision that when their loved one passed on, they said it would be something that they would want. So we all bus up together, and we talk to our representatives about organ donation legislation. I remember talking about a bill that would have designated organ transplant vehicles’ emergency status — because they don't have that.

Lauren: Wow, that's unbelievable.

Amanda: They take normal transportation when they're transporting an organ.

Lauren: And they're expected it will be okay by the time they get there.

That's really unreal to me. The whole concept of keeping an organ alive for that period of time is one thing. But then, on a bumpy road on a truck going across the country, and all that kind of thing is … wow.

Amanda: I’ve seen the pods that they put the kidneys in, and they're pretty cool.

They definitely look like something out of a science fiction movie.

That keeps them alive.

Lauren: I mean, I guess they're hooking them up to pretend tubes and


Amanda: I’m not sure how the contraption works.

Lauren: Obviously it works, because your sister’s living with a kidney now, that she wasn't born with. So, given your experience, and your experience with the legislature and also within the healthcare system, are there ways in which our system is really working for patients … and ways in which it really needs improvement from what you can see?

Amanda: One of the ways I think that it's working is that support for organ donation awareness is pretty bipartisan. It's amazing to me, because I feel like we're living in those kinds of times where nothing is bipartisan right now.

Lauren: That’s really true.

Amanda: Yeah. So I guess the foundation for the support is there. And it's very nice that end stage renal disease patients can be covered by Medicare, even if they're not 65.

Lauren: That’s amazing.

Amanda: Yeah. And then I feel like our scientific and medical community has made great strides. Where I feel like it's failing, especially considering Medicare, is they'll pay for dialysis, they'll pay for transplant … they will only pay for anti- rejection drugs for three years post-transplant.

Lauren: Which may not be enough for some people?

Amanda: It’s not going to be enough for some people.

There are people who have lost jobs and lost health insurance, and said, “How am I going to keep my kidney? I can’t afford these drugs.”

And in the long run, it's more economical to cover the drugs than for someone to lose a transplanted kidney, go back on dialysis, or have another transplant. Because Medicare will pay for those again, if they have to go through the cycle over again.

Lauren: It's very interesting you bring this up, because I feel like this is a discussion that I have with guests on the show across the board. It's not just about organ donation, but that if we invested more in preventive care, we would actually save a lot more money. And that's the thing that's broken about the system.

Amanda: Yeah. Just by talking to other other donors, I have learned that all transplant centers are not created equal. I don't know if it was because it was a pilot program. I donated at the Carolinas Medical Center in Charlotte, North Carolina. When I donated five years ago, it was actually a pilot program. It was new for the hospital. And I felt like my transplant coordinator and the nurses who worked in the center, and nephrologists that I talked to, everyone was very hands-on. And they even, at some point right before we went into surgery, were, like, “A lot of times, some living donors feel like, post-surgery, the focus is on the recipient. We just want you to know we're here if you need us.” And that made sense to me!

Lauren: That’s amazing. That's a lot of support.

Amanda: Yeah, but I have found through talking to other people, that some people have not had that support. They’ll go to a lab to get their lab work done, and the lab will be, like, “I don’t know how to process this, insurance wise.” And they couldn’t get a response from their transplant coordinator, so they would have to pay for it out-of-pocket and then hopefully get reimbursed later. It's just, they're not all created equal.

And I wonder, isn't there a way that we could make this level of care more standardized and more uniform?

Lauren: Yeah. Sort of centralize that, in a way as well. And what about media representation, too? Are you finding that there is enough, that maybe it needs to change when it comes to invisible illness?

Amanda: I don't think that there's enough. I can't tell you how many times I've been watching a TV show and someone has made a joke about selling a kidney — or taking a kidney — and I've been, like, argh! Why is that always the trope?!

Lauren: Well, isn't that the urban legend thing, that people go to Eastern Europe or something, and they’re partying, and then next thing they wake up in a bath full of ice cubes and they've had organs removed, right!

Amanda: And that is not true. I mean, there is a very serious problem internationally about illegal organ harvesting. But that's happening to very poor people in other countries who are being taken advantage of — not tourists. I don't know if you saw a show on Netflix called Chambers; it was a big to-do in the organ donation community. I saw many organizations put it out on their social media that Netflix was not being responsible. Because I think it furthered … there’s another urban legend that if you get the organ, you take on characteristics of that person. I think in the story she got a heart from a murderer and she started becoming a murderer, or whatever.

Lauren: Yes, I believe that's the case.

Amanda: There's already enough, like you said, mythology around donation. People don't think that you can have an open casket funeral; you can if you want to be a registered organ donor. You can have an open casket funeral. They can still do that. There needs to be more positive, better …

Lauren: Positive representation, as you said. I mean, that's where your show begins to fill a gap, right? It's the first of hopefully many more things of its ilk that will help people change their opinion about organ donation. And it's interesting that you bring up that show Chambers on Netflix, because I've talked to a few other people on the show about other programming, original Netflix programming, that has been controversial as well within the disability community, the invisible illness community. Shows like Afflicted, and most recently, Diagnosis. It’s fascinating to me that the point of view that a network like that seems to be taking — even though they support so many of us with chronic illness when we sit for those eight weeks bingeing shows! Or, when we deal with fatigue and can't get out of bed — but the very least we can do is watch a show on Netflix. In one way they're really supportive of those of us who are going through these processes, but on another level, they're creating this original programming that's actually not necessarily painting this community in a good light. And not really giving people positive stories that reinforce the idea of helping others, and seeking the correct diagnosis and things like that. Very fascinating to me. We're comin’ down hard on Netflix, even though we love them!

Amanda: We love Netflix! Do they still do the thing where they ask you if you're still watching?

Lauren: Yes, they do.

Amanda: That hasn't happened in a while. Netflix has just learned, oh, no, she's here. She loves us. Not that account. We don't need to ask that account anymore.

I will say, when there are positive representations, I'm very happy with them.

I don't remember … a syndicated show on one of the major networks, where a family had decided to re-gift their loved one’s organs when they passed. They did a shot of what they call an “honor walk”, which is apparently something that does happen in some hospitals. I think this incident was based on a true story. And I was, like, that's great. That's wonderful. Generally when you do see representations of organ donation or kidney disease in the media, it's very focused heavily on the transplant. Which is good; if it's a positive representation, that's great because then you can inspire people and give them a more realistic view of the reality of organ donation. But I feel like there's a not a lot of focus from somebody like my sister's point of view — where you see someone, a character, going to do dialysis if they have to do that, or having to take those medications. Or, I remember when my sisters … we had the same high school chemistry teacher. His name was Mr. Candy. And he was a good teacher, but he was a very hard and strict teacher. His classroom was his classroom. It was his rules. Things like, you couldn't leave to go to the bathroom if your lab wasn't finished or whatever. I remember my mom marched into that classroom and said, when my sister has to go, “You need to let her go. If she needs to sit down, you need to let her sit down — because she is a chronic kidney patient. And if she says she needs that, she needs it.” And Mr., Candy was, like, “Yes, ma’am, Mrs. Nicastro!” I feel like there are other things we see in the media that deal with some illnesses. But I don't know if I've seen that.

Lauren: The patient perspective really.

Amanda: Yeah. You only ever see them when it gets to the very end, where they need the transplant. And will their long lost father give it to them? Or will their strange twin sister give it to them?

Lauren: Yeah, it's absolutely true, actually. And it's what you say about that idea of this hero trope, right. The person who makes the donation becomes the hero, and yet the person who's living with this illness day to day is never the one who gets the hero status — even though they're still waking up and getting through. It's really interesting. But that's again, where addressing it directly with shows like I’m Just Kidneying could really help people change their perspective. I know that you're working towards certain legislative things and working with LiveOnNY. With the improvements that need to happen within the healthcare system, can you see specific ways — aside from standardizing care in these kidney care centers, or going and fighting for particular legislation to pass, or not pass as the case may be — are there particular ways in which you can see this shifting, and this whole narrative shifting, within the larger scope of the healthcare system?

Amanda: Two things.

I think that we need to do a better job at educating the public.

I think you'll see that change longer down the line, because people just don't know. If you ask them, “Do you support transplantation?”, they’re, like, “Yeah, people want to live, they should live.” That's good. That's noble. But they don't know anything beyond that. I remember I volunteered to go help a school out in Queens with a unit they were doing on organ donation. It was part of the biology science class.

Lauren: That’s very cool. That'd be a very progressive teacher, I would imagine.

Amanda: I was, like, why aren’t all middle schools or high schools doing a chapter on this? And then maybe incorporating it with a civics or ethics class? Why is this not happening? And then second, I hate to bring this up … but the recent executive order about kidney health, even coming from an administration that I shall not name, I actually think that it is a right step in the right direction. Because one of the big things about it is trying to remove barriers for living donors. I didn't really know this until recently; I recently did some work with an organization called WaitListZero. And one of the co-founders, Josh Morrison, he was, like,”Yeah, even if everyone was a registered organ donor, our supply would still fall short. We still need living donors to step up.” So, when we live in a country that doesn't do wage reimbursement, doesn't help with childcare, doesn't help with eldercare … if the pre-existing clause went away tomorrow, if the ACA was demolished, I could be considered to have a pre-existing condition from several private health insurance companies. Even though there is nothing wrong with me, and I was deemed medically healthy enough to have elective surgery and remove an organ from my body. They could deny me coverage or charge me more, based on this laparoscopic nephrectomy that I had. So, we definitely need to remove the barriers for that.

Lauren: I think those are all really salient points. That's the thing, if people are listening and they want to get involved in helping change this story, the thing to do is to volunteer with various organizations like the ones you've mentioned, and work toward legislation. It all seems to come down to politics, that we need to actually vote for the right people in order to get the right policies in motion. And so at the most basic level, the way we create that change is by voting for the people who are going to actually create it, right.

Amanda: Yeah.

Lauren: So, one of the last questions I wanted to ask you is about privilege … while we're talking about politics! I'm wondering if privilege, or a lack thereof, has played a role in any part of your experience with organ donation, between your sister’s medical history and your own … whether it's being a woman, being a white woman, whatever it is … have you ever come across any kind of experiences that have made you go, “Gee, someone would have listened to me more … or they would have listened to me less … if … “

Amanda: I don't know that I've had many people who would have listened to me more. I'm a pretty loud, vocal person.

But I am very cognizant of the fact that I think my experience does come with a heavy dose of privilege.

I think because I come from a very upper middle class family background, and I'm white, I never even thought about missing eight weeks from work. Even if my employer hadn't said, “Yeah, your job’s going to be here when you get back,” my parents … I wasn't married at the time, but I was dating my husband at the time, and I knew he and his family all love me and they were also there for me, and my grandparents at the time were still alive. I had a support system in place; all of those people were financially sound enough that I never even thought about it. And I've met people who had to think about that, who were, like, "Oh, I wouldn't be able to take that much time off work.” And I've heard stories of people who were fired because they got back to work and they were laid off, and that was the reason.

Lauren: That doesn't surprise me. You hear these stories all the time.

Amanda: I never thought about this until we met two friends who do a podcast called Comic Book Junto. It’s a really cool podcast. It combines comic books and philosophy. Octavius and Adam are two friends, and Octavius went through renal failure and he needed a kidney, and Adam donated for him. Octavius is black and Adam is white. And the conversations that I listened to them, about how information is spread through white communities and black communities — it’s not equal. African-American communities do not have the same access to healthcare and information. All those systematic barriers are in place. And I never thought about that before. I was like, oh, you're right. And then in terms of organ donation, it’s sad because, statistically, the African-American population has higher rates of kidney disease.

Lauren: That's really interesting. And it's a really fair point, isn't it? We hear this story over and over again, that we know that African-American communities are always given less information. There's just less support for them medically, in particular. So it's really important that we speak out about these things, so that hopefully that can change in the future.

Amanda: And I think a very valid sense of distrust of the medical community community has come out of people taking advantage of the African-American community in terms of medical advancements. I didn't think about that either until we were all together one night, talking about those things. I was like, “Oh, you're right, totally right.”

Lauren: Yeah, absolutely. So can you tell everyone where they can find you?

Amanda: You can find me on my website. I’mJustKidneying.com.  And my Twitter handle is @TheLastAmanda. And my Instagram is @I’mJustKidneying.

Lauren: Well, Amanda, it's been such a pleasure talking to you. Thank you so much for joining us.

Amanda: Thank you for having me!


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