Episode 89: Liver Transplant, Purpose, & Activism w/ Journalist Kendall Ciesemier

Episode 89: Liver Transplant, Purpose, & Activism w/ Journalist Kendall Ciesemier


Kendall Ciesemier is the executive producer of multimedia for the ACLU. A multi-award-winning reporter, producer, writer, and social entrepreneur, she founded Kids Caring 4 Kids — an organization that empowers young people and helps provide access to clean water, healthcare, food, and education to children living in Zambia, Kenya, and South Africa — at the age of 11. While attending Georgetown University, she co-founded OWN IT, a national women’s initiative that empowers and inspires college-age women by providing access to 21st-century female leaders through summits focused on said leadership, diversity, accessibility, and feminism. Kendall came to prominence as a journalist through her work with digital news company Mic. Her interview with Alice Marie Johnson, a woman serving life in prison without parole for a first-time nonviolent drug offense, went viral and caught Kim Kardashian West’s eye. Kardashian West then successfully lobbied President Trump to grant Johnson clemency — and Kendall produced a series of reported pieces alongside the effort, catapulting the story to make international headlines and result in real-world impact. She has also worked at The New York Times and CBS This Morning, and is the co-host of podcast That That Don’t Kill Me. Most prominently, she has been honored as the 2014 Glamour Magazine College Woman of the Year, a Chicagoan of the Year by Chicago Magazine, Zeitgeist Young Mind by Google, and one of Youth Service America’s Top 25 Most Powerful and Influential Young People. She’s given a TED Talk, rubbed shoulders with Hoda Kotb and Kathie Lee Gifford on the TODAY Show, and even been sandwiched between President Clinton and Oprah on her eponymous show. All this…and she’s also survived two liver transplants. Here, we turn the mic toward Kendall to hear her story: how she was diagnosed with chronic liver disease as a child, the organ donation process, and how she maintains her health to this day. Her story is one of triumph against the odds — and she knows it. Tune in to learn more about this incredible woman!



Kendall Ciesemier ACLU New York Times OWN IT Kids Caring 4 Kids TED Talk Uninvisible Pod Lauren Freedman

Lauren: Okay guys, thank you so much for joining us. I am here today with Kendall Ciesemier. She’s a journalist and co-host of That That Don't Kill Me, which is a podcast which is also about disability, and she is a transplant recipient. So she's going to tell us all about her journey. Kendall, thank you so much for joining us today.

Kendall: Thanks for having me.

Lauren: Yes. It's wonderful to speak to you. We're in the middle of this Coronavirus pandemic, which is …

Kendall: What an interesting time!

Lauren: Well, I mean, it's particularly interesting because you're one of the people who started socially isolating a little bit sooner than others — which I think was probably a smart move on your part. We've been chatting about that before we decided to start our interview, but I'm sure we'll get into some of that, particularly with protection for yourself because of the immunosuppressants that you have to stay on. But why don't we start at the very beginning for you. Can you tell us when and how you first realized something was going on? And what part of your body this was affecting … and then what steps you've since taken to take control over your health?

Kendall: Sure. So, long story! (laughs)

Lauren: It’s a fascinating story.

Kendall: I will cut it down.

Lauren: You do what you want to do, girl! (laughs)

Kendall: So, I was born with … well, it’s debatable if I was born with it. They don't necessarily know if it's congenital or not, but I use “born with” colloquially because I was diagnosed with a pediatric liver disease when I was eight weeks old. And that's typically when the disease that I was diagnosed with — biliary atresia — is diagnosed, around that old. And I had my first surgery at that age as well, in the hopes of buying time. At the time, they were truly trying not to do any transplants on babies. I was born in '92. So, you know, I think everything has progressed so much and now they definitely do transplants on babies.

Lauren: That’s so interesting, because, also, those organs are going to grow over time, too.

Kendall: Yeah, well, babies get portions and so do kids in general. The liver is a very, very big organ in your body, but even as an 11-year-old — which is when I ended up getting two liver transplants — I got a portion of an adult liver.

Because livers grow back, and they grow back appropriately to your body size.

Lauren: It’s sort of like cutting off a lizard's tail.

Kendall: Yeah, it's really interesting. 

Lauren: It’s fascinating. I did not know that about livers!

Kendall:  Yeah, so, whereas with lungs or a heart, you have to have a donor that's the appropriate size … livers, that's not necessary. So, interesting. And so yeah, I had that surgery when I was two months old. I had another surgery when I was four years old, from another kind of complication from that original surgery. And then I had two liver transplants when I was 11. They were pretty much back to back, five weeks apart. The first was a living donor from my dad. The second was from a deceased donor. Like I said, five weeks later, I got an aneurysm of the major artery that feeds into the liver, and that necessitated the second transplant. I mean, my medical history is crazy. It's so long.

Lauren: That’s what we’re here for!

Kendall: I would say there's been a lot of ups and downs, but I haven't ever had a time in my life when I didn't really have to think about my health. That was always a thing. Even when I was very little, I knew that there was something that was different about me, than my brother, than other kids I knew. I had scars on my stomach. That was a very clear, visible indicator. As if the doctors’ appointments were not enough. I think I always knew. Obviously when I was little, I did what my parents told me to do. And then, I think as I've gotten older, I’ve taken on more of that responsibility for myself. And that looks like a lot of different things. I'm coming up on 16 years post-transplant, which is quite something. And I think this liver likes me. I think I like it. So I think we’re, hopefully, gonna stay together for a while.

Lauren: And this was a full liver transplant, this one, when you had the one right after your dad’s donation?

Kendall: They were both partial donations or partial sections. When I was 11, the donor liver was from a 24-year-old man, so that wouldn't have fit in my 11-year-old body.

I also have a very weird thing where my abdominal organs are flipped.

It's called abdominal situs inversus, and it's actually something that they can tell on an advanced ultrasound before you're born.

Lauren: Wow. So you were born, and your parents knew.

Kendall: Yeah, they knew that there was a wide variety of conditions that it could correlate to. There's also another kind of variation of that, where your heart is on the other side, on the incorrect side. My heart’s on the correct side, but it's my abdominal organs that are flipped.

Lauren: And does that affect the surgeries, and the death rates?

Kendall: It affects it all because the anatomy is just all a little bit different. And they're not flipped up and down. It's left and right. 

Lauren: It’s a lateral flip, yeah.

Kendall: My liver’s on my left side, your liver’s on your right side; my spleen’s on my right side, your spleen’s on your left side. Most people don't even know where these organs are in their body.

Lauren: That’s also true!

Kendall: I do! When I was in the hospital, having my transplants, etc., etc., all throughout my growing up, there would be new residents … they'd come in and they wake you up and they start touching your stomach and stuff. And they would always get this really nervous look on their face. Because they were looking on the wrong side.

And I was, like, "Should have read the chart, dude.”

And they’d be, like, “Oh, okay."

Lauren: Didn’t want to alarm you, but … gotcha.

Kendall: I’d be, like, “It’s not my fault, bro.”

Lauren: Doesn’t that go to show that these practitioners need to read the chart before they go into that room palpating the patient.

Kendall: There’s plenty of lessons that I've taught many a fellow or resident.

Lauren: But that small action has so much to do with the way in which you administer your bedside care. Your bedside manner could be so affected by not knowing all the information you need to know before you go in to see a patient. And why not make it easier for everyone and not waste time by just glancing over the chart. No big deal. That's why it's there.

Kendall: For me, it's like a little bit of hazing. I just kind of like to mess them up a little.

Lauren: (laughs) To rib them a little, yeah.

Kendall: Yeah. especially because a lot of doctors come in with a lot of ego, and I'm like a teenager at this point, just kind of, like … okay … I know a lot more than you do, bro.

Lauren: Which is actually probably true, given your experiences. 

Kendall: Oh, it's absolutely true.

Lauren: You weren't like one of those teenagers who thinks that they're invincible and knows everything. You definitely knew more about yourself.

Kendall: Yes, I really knew more about my health care than any doctor that I would meet.

Lauren: Absolutely. So you've now had how many total transplants and surgeries?

Kendall: ...

I’ve had two transplants, and I guess if you count the transplants, six major liver surgeries.

Lauren: You say major liver surgeries. What else has happened?

Kendall: Oh, people qualify things as surgeries that I just don't qualify as surgery. I used to have a tube in my liver that I got changed out every six weeks under general anesthesia, for 11 years. That I would not qualify as a surgery. It's a procedure.

Lauren: But it's still invasive, no?

Kendall: Sure, it's invasive, but it's not like a big massive incision. I guess, technically, your wisdom teeth extraction is a surgery?

Lauren: I count that.

Kendall: So I don't know.

Lauren: What about this tube that was in your liver?

Kendall: It was a surgical complication from my second transplant, where my bile ducts basically kind of narrowed and collapsed, creating a stricture, an impediment for bile to flow throughout your liver. And when that happens, you form what they call liver stones — which are different from kidney stones. You can't shoot them out with a gun in the bathtub; they have to fish them out with some kind of interventional radiology procedure. Your liver has bile ducts and that carries bile; bile is the the thing that your liver produces to absorb nutrients and to digest your food. And what happens is, your bile ducts basically look like a tipped-over tree. They have all these little branches, and the main kind of trunk of my bile duct in my liver basically had this collapse. So there was this slowing of bile that couldn't move through. And then it would get stuck. And because your liver is attached to your gut, your colon, there's a lot of bacteria and it's a dirty tract. So, bacteria would then brew and kind of breed into the liver, and then I would get this liver infection really quickly. And that liver infection would turn into a blood infection, which is also known as sepsis. And that would happen in a matter of four to five hours. So, from nothing to sepsis very, very quickly. And that can happen at any time. And so, I had a tube. Kind of like a stent in your heart, but in livers, you can't place a permanent stent because bile is a sticky substance and bile will clog up the tube that's keeping your bile duct open … hence making the tube totally insufficient for what it's trying to do, which is to keep everything open. And so I'd have to get the tube changed out and then they’d place a new tube. It came out of my body. I would keep it capped for the most part, until the night before I would have to hook it up to a bag and flush it with basically this human Drano solution to try to keep that open. I mean, it was a lot to deal with, for sure.

Lauren: How old were you when this was happening, 11?

Kendall: From 11 to 22, 23.

Lauren:  That's a lot to be taking on in terms of daily maintenance and pretty catastrophic potential consequences.

Kendall: Yes. I would say I would get a couple of liver infections a year, even with changing it out every six weeks. If I went beyond six weeks, the tube would get clogged and then I’d have an infection. But sometimes even six weeks was too long a time, and I would get these liver infections. That kind of progressively, I would say, got worse. Eventually I was going to need a third transplant if they couldn't surgically fix it. They had tried to surgically fix it the summer before my eighth grade year, so a couple of years into this whole charade; it was a 13-hour surgery, and it was unsuccessful about four months later. And so, at that point, they were, like, “You’re going to have to live with this tube and have these procedures every six weeks, until your body no longer tolerates it, and then you're going to need a third transplant.” So, fast forward all of these years … I was having a lot of problems, and I wanted to go do an internship in New York City.

I was a junior in college, and I was about to leave the next day for my internship in New York. And I was just having so many problems.

The tube just kept on getting clogged. And then I had a procedure, and the next day it got clogged again, and so they were just thinking that potentially this solution wasn't working anymore. They weren't sure if this was the end of the road, if I was going to need to be listed again, all of those things. And so I just said, “Okay, I'm going to go to New York. Just tell me which hospital to go to when everything falls apart.”

Lauren: That’s very brave. There are so many people who live with the consequences of chronic illness whose worlds become smaller. It sounds like your reaction was to go, "I'm going to go wherever I can. I'm going to live my life.”

Kendall: Sure. Well, I'd already been away for college. I went to college in DC; I'm from Chicago. So I'd already experienced the late-in-the-night issue where I had to either go to the ER at Georgetown where I went to school, or fly home and my parents would pick me up from the airport and we’d go straight to the ER.

Lauren: Right. So hospitals didn't freak you out. You were just sort of like, if I end up in one, I end up in one.

Kendall: Yeah, and tell me who I should call — because it’s good to know someone. So I go to New York and I meet with the doctor team at Columbia. They say, “Oh my gosh, I can't believe you've had this problem for five years. That's heroic.” And I’m, like, “No, no, sir. I've had this issue for 10 years.” And they say, “Oh. Well, that's insane.”

Lauren: So it went from heroism to insanity. Great!

Kendall: I know, it's insane! (laughs)

Lauren: “Don’t worry, I live in this body, and I'm aware.”

Kendall: Yeah. And so they said, "Well, we have this really amazing surgeon and I hate to meddle, but maybe you should get some scans and see what he thinks.” Because I told him that they tried to do surgery, and it didn't work. And they said, “Well, you know, not everyone's equal.”

Lauren: And I mean, being in New York City — one of the places with the best hospitals in the world. So your likelihood of throwing a stone and hitting an excellent specialist is higher probably.

Kendall: Yeah. And so I did that. I got the scans, and I actually ended up making it through my whole internship with no problems — which was great.

And my parents, when they came out to pick me up, we went and met with the surgeon, and he said, “I think I can fix your problem.” Which were just not words I ever expected to hear.

Lauren: Yeah, of course, after a decade-plus living with this issue. At a certain point you sort of succumb to it, don’t you.

Kendall: Especially after the surgery that was supposed to fix it didn't work. That was kind of like, okay, well, I guess it can't be fixed. So anyway, long story short, a year later, I made the decision to have the surgery, after I graduated from college. I moved out to New York with my parents for a period of time, and had this surgery, and haven't had a problem since.

Lauren: That's incredible. So this was to fix the actual ducts, to process the bile. 

Kendall: Yeah, they like basically splayed my liver open and fixed it all. 

Lauren: That's got to be a very time-intensive and labor-intensive surgery, I imagine, too.

Kendall: It was less time-intensive than my other surgeries, prior. I think it was around six hours, versus a transplant’s like 13.

Lauren: So at any point along this journey, did the idea of mortality hit you? That this could be affecting my life expectancy … who knows what could happen at the turn of a dime?

Kendall: Yeah, I think life expectancy and mortality, all those things … when I had an aneurysm of the hepatic artery, that was a 98% mortality rate. It happens in 0.1% of post-transplant patients, or something. It’s ridiculously rare, and it's ridiculously deadly. And so I think that was probably the time where it was, like, oh, it’s very clear that this could not go … And I was also unconscious. I had no idea what was happening. I just woke up from an induced coma a couple of weeks later, and was, like, oh, what happened to me?? Okay, got it. I need a second transplant? Oh, that sucks because I just did this.

Lauren: Meanwhile, you've been asleep for two weeks and probably your parents had been fretting beyond belief. I can't even imagine what they must have gone through.

Kendall: Yeah. I think for many years, I didn't have a whole, very clear picture of what that whole period was like. And then I would say that the other time was with the situation with the surgical complication, where I actually did get really pretty aggressive sepsis and had 50 over 20 blood pressure in the ICU, and they were taking me in to immediately try to stabilize me. And that was the time I was very aware of what was happening.

And I very much felt like, oh, I think I'm dying.

Lauren: You were an adult. This was in your 20s. 

Kendall: No, this was when they'd found this surgical complication with my second transplant.

Lauren: Oh, you were still a kid! This was at a very young age, facing this idea of, am I going to wake up from this surgery?

Kendall: Yes. I think my whole life has always felt a little bit unsure, and a little bit unclear. Honestly, I don't think about it that much. I don't think about how long I have, or what my mortality rate looks like, or what my life expense expectancy is. I really don't focus on that at all. I think I kind of came into this world basically thinking that I had not enough time, and being quite the over-compensator for that reason. And I think that has instilled a boldness within me. I think when you have your biggest fear attached to you at all times — and in my case, I had this literal tube inside of me at all times, and that was the biggest fear I had for my entire adolescence and growing up — I think that makes you go, okay, well, honestly … all these other little things, like this test or this boy or this thing I want to achieve or accomplish … it all just feels so much less. It makes you feel less afraid.

Lauren:  Well, less important or less stressful.

Kendall:  Yeah, I think it just puts it in perspective. Like, what's the worst thing that could happen?

I know what the worst thing that could happen is! It could happen at any moment, and I have no control over it.

And the worst thing that could happen is not that I fall flat on my face and embarrass myself in front of all these people, or by doing this thing that I really want to do. I really think that in, a lot of ways, that was a huge advantage to me. 

Lauren: Yes, absolutely. Well, to be so young and so successful in what you've done as well. I mean, that's rare and very exciting, too. I just think it's so exceptional that you've been through all of this and you're still here kickin’! Did you have mental health support along the way to sort of guide you through that? Or was that sort of innate with you?

Kendall: I would say no. Honestly, I think everyone copes with these things differently. And for me, I think I just was kind of the ‘put your head down and get through it’ kind of person. I started therapy for the first time in my life six months ago.

Lauren: Oh, my God! That’s amazing to me!

Kendall: I’m not saying that's a good thing. But I wasn't able to, I think, deal with it on a daily basis — and also talk about it, and look at it, and confront my pain, and all those things — at the same time.

Lauren: You prioritized.

Kendall: I just didn't want it to interrupt my life anymore than it absolutely had to! And I just wanted to get back to gunning for it. Honestly, I think that it's a personality thing. It's like what you're born with, and I think for me, that was like the way I saw it had to be.

Lauren: Like, your default is ambition or drive.

Kendall: Sure. And I think there's plenty of ways that that can be a bad thing, too, right. You can hide; everyone can hide in something. You can hide in addiction. Other people hide in accomplishment. That's me.

Lauren: You’re being pretty honest about that right now, so …

Kendall: But I think now I have the space and the health to go back and look at some of those things and say, yes, this still impacts me. Yes, this is still a difficult situation. You know, it's very difficult for me to feel like I have a fever, because a fever is what would trigger me needing to be in the ER, potentially, with sepsis, right? So to feel like I have a fever or a low-level thing, I can sense it really quickly in my body, and I am very well trained to be hyper-aware and vigilant about that.

Lauren: And hyper-responsive, too. 

Kendall: Yeah. So that I think, is that necessary … is that not necessary … and then letting yourself believe that you're okay.

Lauren:  And where you are living with a constant low level state of anxiety, too.

Kendall:  Yeah. I go, oh, well, I think I'm okay now. But then I go, well, what if I'm not okay??

Lauren: This is where therapy will help, I think! (laughs)

Kendall: Yeah.

You don't want to be stupid, and you don't want to be ignoring something that is real.

But I think there are psychosomatic things that can come into play as well.  I think I couldn't deal with the mental aspect of it when I was in it, because I was just triaging the immediate problem. 

Lauren: You have to just live. You have to survive; that was the number one priority.

Kendall: I never got my tonsils out, even though they’re massive, because there was just always way too many other problems to take care of. So I think in that sense it's like Maslow's hierarchy; you’ve got to take care of the most important thing first. And if that's really intense for a really long time, you might not get to the other things.

Lauren: But it also sounds like grace under pressure to me, and I think to a lot of other people listening. Because a lot of people's default is not to get it done; for a lot of people, it's fight or flight. And it sounds like rather than just going into fight-or-flight, you go into solution-based. Which is probably why you're also such a good journalist. 

Kendall: Well, I think it's almost something where I was raised in this situation, and so it's almost that normalcy feels really hard and weird and difficult for me. I think that's a lot of the reason I’m attracted to a career in journalism or anything that's a little bit urgent or stressful, because I'm really good at operating in that zone.

Lauren: Yes, absolutely. You're not as good at sitting still and waiting for something to happen. You're much better at taking action. You mentioned earlier that your dad was one of your first donors. And it sounds like your parents have been very involved in your health journey as well. And I'm wondering whether they acted as advocates for you, and whether that was something that was obvious to you, and how that's affected your relationship with them. A big question! I got lots of big questions, girl!

Kendall: Yes, my parents have always been incredibly involved with my health. We've been through a lot, the three of us. I have a brother, too; he's an older brother. But I would say that for a lot of it, obviously, it was me and my parents, and I think we've been through a lot together — our whole family, for sure. And yeah, I think they were always incredible advocates. Especially my mom is totally a warrior. Like, don't cross mama bear kind of thing.

And I think they taught me in a lot of ways how to fight for myself, in those contexts, growing up.

Now I think the interesting dynamic is what happens when you grow up and you grow independent and all those things … and I think, in a lot of ways, it's just been a really natural process of growing up and me taking on more responsibility for my own health as I get older.

Lauren: Well, you only know what you know. It's not like you can compare it to any other experience.

Kendall: Sure, yeah. And I think I probably have a closer relationship with my parents than other people my age do, maybe. Or a different kind of relationship, because of the nature of what my life has looked like. But now it really does feel like I take care of all my medical stuff. And mostly by myself. I mean, pretty much always by myself.

Lauren: Yeah. So you've been able to grow into independence through this. 

Kendall: Absolutely. 

Lauren: And it's wonderful that this experience has made you guys closer, because there's a lot of stress involved in watching your child suffer. And the fact that they've been able to cultivate a close relationship with you and seemingly not stress you out about the mortality from early on, you know.

Kendall: My mom’s definitely a worrier. How could you not be, I guess? 

Lauren: A worrier and a warrior.

Kendall: Yeah, that's exactly right. But I don't think that they were ever too cautious with me. They were really supportive of basically whatever I wanted to do. I ran cross country not even a year after my liver transplant. And I was lasted almost every single race! 

Lauren: But the point is that you're doing it!

Kendall: I was always dead last. There were a couple of other girls from other teams who were also slow. But I was always, like, “Well, you didn't have a transplant so I don’t know what your excuse is!” (laughs)

Lauren: I think that's fair enough!

Kendall: ...

 My dad would come run most of the race with me, alongside me. They never said, “No, you can't do that.”

Maybe if I was a guy and I was trying to play football, they'd be, like, “Okay, maybe another sport.”

Lauren: A little rough, yeah.

Kendall: But they were always really supportive. And they mostly just let me be as bold as I wanted to be.

Lauren: So what's a typical day looking like for you now? Are you finding that you have to be aware of your surroundings and managing symptoms, or managing potential triggers, especially because you're on immunosuppressants as well.

Kendall: Not typically. I mean, the Corona time is a little weird. 

Lauren: It’s a strange times for us all, yeah.

Kendall: I mean, I'm definitely socially isolating, distancing, all of those things right now. But in a normal context, I would say no.

Lauren: You’re just like everyone else. 

Kendall: I take a decent amount of meds in the morning and at night, that kind of thing. And I also don't drink because I've had two liver transplants, and alcohol and livers don't really mix. I might have not even a glass of something at some point. But it's very rare. I never buy alcohol because I don't drink it all. Sometimes if my friends have wine, I may have a little bit and then give it to them.

Lauren: That just sounds sensible. 

Kendall: I do plenty of … I’ll have a couple of sips because I like the taste, and then I'll give it to you, you know, that kind of thing. But I don't drink really. So I would say that's the biggest kind of difference. 

Lauren: But there are also so many people, so many adults, who don't drink. I find that socially speaking, it's not an odd thing to say, “I don't drink.” No one really judges you for it anymore. 

Kendall: Ohh …

Lauren: Do you get judged? Do you get peer pressured?

Kendall: I don’t know if that’s really true … 

Lauren: Oh, interesting! Maybe that happens in your 30s.

Kendall: I think as you get older, it definitely gets better.

Lauren: Yeah, because more people realize they have problems.

Kendall: Right. In college, it was really intense with the drinking situation. 

Lauren: That’s fair enough. 

Kendall: And I think, post-grad a little bit. But it’s gotten way, way better. Now, it doesn't seem like a huge deal. But I still definitely get the “Oh! You don’t drink?!”  I talk about this a lot, actually.

It's almost like, when you don't drink, it makes people self-conscious of their own relationship with alcohol.

And they immediately get uncomfortable, like, “Oh, oh, yeah. Should I not drink??”  I don't care if you’re drinking!

Lauren: Maybe you need to go to therapy and work that out.

Kendall: It’s like, when they don’t drink, they get uncomfortable. 

Lauren: It says more about other people. 

Kendall: Yeah, and it makes them reflect on their own relationship with it.

Lauren: That’s very interesting. Well, speaking about reflecting on relationships, I'm also wondering … because you mentioned this physician who came in and didn't read your chart and was looking for your liver and couldn't find it …This is a great example of someone who didn't get it, right. But I'm wondering if you've been in situations where you've been confronted and had to justify to people what was going on with you. Whether it was justifying why you weren't drinking, or having to justify to perhaps a clinician who didn't really understand the whole picture. Have you had experiences like that, where you've had to explain why it was invisible?

Kendall: I’ve been pretty lucky on that front, in general. I think people have mostly believed me. I think, yes, there's always been that weird burden of knowing that your life is really different from everyone else's lives around you. And having them not know. I'm not going to bring it up unless it's absolutely necessary. Or if it comes up, it comes up. I don't really care to bring it up. It's not a big deal to me, but also, I'm not gonna just be, like, “Hi, my name is Kendall. I've had two liver transplants.” 

Lauren: Oh, you don't introduce yourself that way??

Kendall: No, I don’t, I really don’t. So yeah, I think in that way … there’s privilege in that, too, right?

Lauren: Well, the next thing I was going to ask you about was privilege.

Kendall:  I can slide through and not have anyone know there’s anything wrong. I've had small instances with doctors not giving me certain antibiotics for a sinus infection, because they don’t think I'm sick enough, or whatever.

But mostly, honestly, once you get your doctors and once you find the right people, then it's so much easier. Because they just have a relationship with you. You're kind of like a frequent flyer. 

Lauren: I like that, frequent flyer! 

Kendall: I had one OB/GYN … this was in New York, when I was looking for new doctors … and she was looking at my chart … she came in and she said, “Wow, you look so good!” And I was, like, “Excuse me??” And she was, like, “Well, I just read your chart and I expected you to look way worse.”

Lauren: Why would you say that?? That's just rude!

Kendall: She said, “You look so healthy. And amazing!”

Lauren: “You’re glowing!”

Kendall:  Yeah, I thought it was so weird, and so deeply uncomfortable — and I never went back. 

Lauren: Yeah, good on you. 

Kendall: I just thought it was so inappropriate for her to be commenting on my physical appearance.

Lauren: That’s entirely inappropriate. She's there for one reason, and it is not your whole appearance.

Kendall: ...

 I should look worse to you??

I don't know. I'm confused. 

Lauren: Well, it’s like a preconceived judgment on someone, isn’t it.

Kendall: Yeah, that kind of thing. But mostly I’ve been pretty lucky. People typically, I think, with the things that I deal with, big organ problems … I think people are pretty much like, “Oh, oh, okay!”

Lauren: They treat you with kid gloves. Yeah, that's a lot.

Kendall: Yeah. And getting accommodations in college, I had to go up to every professor at the beginning of the semester and tell them what my deal was. And I would say that most people, minus a couple, believed me and really decided that they wanted to be on my side. Now, I think I implemented a few tactics in order to make sure that happened. I learned how to be good at this, to get what I need. But I think mostly I've been pretty lucky that people have taken it seriously.

Lauren: Can you see any of that experience having been different if you presented differently? Like, perhaps if you were a woman of color?

Kendall:  Oh, sure. Absolutely. I mean, all of the factors, right? I think also I got a lot of really good care because my parents are really smart, and really …

Lauren: Educated, and so they have access.

Kendall: Really educated. I've always had health insurance and I've always had good health insurance. My dad didn't change jobs when I was younger, because we had really good health insurance. This was before pre-existing conditions and that kind of thing. He could have been denied coverage based on me, had that been a thing when he changed insurance companies. So they definitely made decisions in order to make sure that that was the case. And they were able to make those decisions.

So I had, 100%, a lot of legs up.

Lauren: Yeah, but it's important to also acknowledge that, isn't it? Because that’s how we begin to fill the gaps for people who need lifting up in those situations, too.

Kendall: Yeah. And they took my family really seriously. Because my parents were, like, “Well, we're gonna write down every single thing you say. We're going to know exactly what you're talking about. And we're going to ask you hard questions." And they sometimes didn't like that, but at least they respected it. 

Lauren: That’s very good advice for caregivers, I think, too. So, has your experience turned into advocacy on a larger scale? Can you walk us through any of the work that you've been doing as an advocate to raise awareness?

Kendall: Sure. When I was younger, I was interested in being an advocate for other kinds of causes. And so I started a nonprofit when I was undergoing two liver transplants, to inspire and empower young people to help provide basic human needs for children living in sub-Saharan Africa. That was during the height of the AIDS epidemic. It was something I saw on TV that really inspired and gave me a lot of purpose — that I was fighting for something that was much bigger than myself, and that I had a positive reason to keep fighting and stay alive. 

Lauren: And tell us the name of that organization, too.

Kendall: It’s called Kids Caring 4 Kids. It’s now actually run by a larger organization as its kids’ branch, which is really nice because I don't have to run the day-to-day operations. It’s still in use and still helpful to people, which, after 12 years of running it, was really my hope that it could just be helpful in some way to someone. So I'm really happy with that. It was a huge part of my life growing up; it's not as much a part of my life anymore.

I would say that a lot of my work aligns with advocacy and activism.

Lauren: You were a huge part in breaking a very big story that's influencing not only the news, but also everyone's social media feed right now. I'm talking about the whole tie-in with Kim K. As you say, you've gone into journalism, and so much of what you're advocating for others … this has shown up time and time again in the work you've done.

Kendall: So I was working at this digital media company called Mic; it later got bought in a fire sale, and yada yada yada. RIP. But when I was working there, it was really exciting. And I interviewed this woman who was in federal prison serving a life-without-parole sentence for a first-time non-violent drug offense. She was 61 years old at the time, had been in there for 21 years. And ‘without parole’ means no opportunity to ever get out. It's like locking someone up and throwing away the key. That's just not right! I interviewed her via Skype from federal prison in Aliceville, Alabama, where she was being held. Her name is Alice Mary Johnson. Her story went viral once we published it, and Kim Kardashian saw it and then tweeted it and shared it — and then a month later decided to get involved in her case. And then, throughout the early half of the year of 2018, I followed Kim and Alice's story, Kim's journey to try to get Alice out of prison through lobbying President Trump for Alice's clemency. He eventually granted her clemency on June 6 of 2018.

Lauren: That’s incredible! 

Kendall: Yeah, it was amazing. And I got to be there. I got to tell her son and her grandson. And then her daughter called me. I was in Mississippi with them. And then we drove down three hours to the prison to pick up Alice. And it was just the most unbelievable experience, one of the craziest experiences of my life, for sure. 

Lauren: Because we're in an age where stories like that can go viral and good can be done en masse.

Kendall: And on the back of that they passed the First Step Act, which is the first piece of bipartisan criminal justice legislation in the last 25 years. And that has freed up a lot of other people. Kim is trying to become a lawyer now. She’s also gotten clemency for, I believe, 17 other people at this point. 

Lauren: That’s incredible. It's a great way to use your celebrity, isn’t it.

Kendall:  It really is. Now I work at the American Civil Liberties Union (ACLU). We work on a variety of issues, and I tell stories about the work we do. And so I think in a lot of ways, I feel like that's a huge part of my life, being involved in advocating for other kinds of causes. And I think as far as the medical piece, or my own stuff that hits home for me, the podcast was a first envoy into starting to talk about those things. I'm really unabashed about putting, in my bios in any kind of professional context like Twitter, Instagram, that kind of thing, that says that I've had an organ transplant, you know, the whole hashtag organ donor. Because I think it's important that people know, and I've become pretty open and clear in putting it out there.

I think it's really important that people know that people like me are only able to live this life because of the generosity of others, and because of other families making a really hard decision in a really terrible time.

And I think that's a small piece of advocacy or activism. And I'm just beginning to get my footing around … I did a piece about the organ transplant system when I was at The New York Times, and we did an opinion video talking about how messed up the organ distribution transplant system is, and how the bureaucracies and the organizations that are in charge of procuring organs are actually really not doing a good job, and there's no oversight. We have the opportunity to recover so many more organs than we are; there's an organ shortage and so that that was a really great opportunity to do that piece. Trump did change a rule within HHS policy about a month after the piece came out. 

Lauren: This is proof that one voice can make a difference and can be heard.

Kendall: Yeah, I think I've always felt that way. Even when Oprah said on this episode that I watched when I was 11 highlighting the AIDS epidemic in South Africa … she said, $10 buys a uniform for a kid to go to school. And I thought, well, I have $10 and all of my friends have $10. And if we put all of our $10s together, we can make a huge difference. It was so, so, so simple to me. I think that we, sometimes, as adults, really get clouded by a lot of our cynicism. And I think it's important to go back to the beginning to when you're a kid and you see something is very simple — like $10 can help someone. Okay, I'm going to give $10 and I'm going to convince all my friends to do it, too. I like to try to remind myself that that's where everything started for me — believing that one small action could make a huge difference and could turn into something much bigger than I imagined. I think that was something that I really saw happen and be true in my life. And so I still try to remind my adult self about that.

Lauren: Yeah, I think that's really beautifully said. And I think you also have that experience of living despite the odds, that can fuel that kind of fire as well. Which more listeners should be inspired by. So, I want to ask you one last massive question before we get on to the fun part. I'm wondering about your take on the healthcare system. We touched on this a little bit when discussing the way in which organ transplants and these lists are working. But in what ways are you seeing our healthcare system working for patients? And in what ways can you actively see change that should actually improve the system?

Kendall: Well, I think no one should go bankrupt or be robbed by their need for medical care. No one should not be covered in some way. I don't begin to understand the intricacies of health care policy and insurance and whether or not it makes sense for the American system to be Medicare for all, or not. I think it's really easy to whittle down those things to slogans, like ‘Medicare for all’, and to be kind of rah-rah about it. I think that it’s easy and nice. 

Lauren: But it's not that simple. 

Kendall: It makes us feel good. But I don’t necessarily know … again, I just don't know, right? I just don't know if it's that simple. And it's that easy. And if people actually would really like that.

Lauren: Or how easy it would be to just dismantle the system we have now.

Kendall: Right, and what it would look like. It’s going to be paid for in some way. What does that look like?

You know, I don't know if it is great that the government tells you what you can or cannot have. Currently, insurance companies do that; we don't love it.

I don't know if the government would be better. Especially because I do fear a little bit of standardization of, “This is the rule … based on these people.” I've always been the exception to the rule in my medical history, so I think that is a little bit concerning.

Lauren: That’s very well observed.

Kendall: I think for people who are heavy users of the medical system, the idea that the waitlists would be really long, and that kind of thing, is a little bit weird and eerie. I don't know. I think ultimately, what would potentially happen is that there would be another private system that would be implemented on top of a public system — that then would only be accessible to the extremely wealthy people anyway.

Lauren: Does that mean that maybe it comes down to actually changing the way in which we view economics in the country? Rather than overhauling the healthcare system, maybe we need to overhaul our financial system.

Kendall: I just think everyone should be covered. That's the first thing we should absolutely do. And we should do that tomorrow. The Medicaid gap … I did a story on this … in North Carolina, you don't qualify for Medicaid unless you're an individual person making under $19,000 a year. 

Lauren: That’s unbelievable. 

Kendall: And then you don't qualify for Obamacare subsidies, I think, unless you make $35,000 to $40,000 a year.

Lauren: And that’s a huge gap in there.

Kendall: That’s a huge gap in there. And even with Obamacare subsidies, it's unbelievably expensive for those people who are at the bottom of the Obamacare subsidy range. And so I think what it ends up doing is discouraging people from making money or improving their life because they’re, like, well, I don’t want to make more money, because right now, I get my healthcare for free. Once I make more money, I'm going to have to spend all of my money on my health care. We can't have a system that does that; that doesn't make any sense for anyone. So starting with solving those problems first, I think would be the right first thing. I'm not saying that I don't agree with Medicare for all; I just don't know. I just don't know if it's as simple as we sometimes make it out to be.

Lauren: Yes. I think that's probably very true, yeah.

Kendall: But the affordability thing …

Lauren: That’s the first thing.

Kendall: That’s the clearest issue. Also, more for women!

Lauren: Yes, also covering more women's health care.

Kendall: Listen to their problems. Don't think they're making it up.

Lauren: Believe women, period. So here's the fun bit. I like to end my interviews with a couple of Top Three Lists. And the first top three list is tips. I'm wondering if you've got top three tips for people who are in this world of chronic invisible illness? What would you recommend to patients, maybe even caregivers, maybe people who are on the organ donor waiting list? What would you say to these people? 

Kendall: The first tip that came to mind is for people who are looking at colleges, I think, get in touch with the Office of Accessible Education, the Office of Academic Resources — whatever the school calls it. There’s always an office that is in charge of accommodations. And I think having a really honest conversation after you get accepted to a school, or even before you apply, with those people. It's not going to impact your standing. It's not going to impact your application. It's important to know what's available to you and what's not available to you. And each school can really make up their own rules, because it's not like K through 12 education, especially if you’re in K through 12 education in public school.

There are laws that really protect you, IEPs and 504s and those kinds of things.

Lauren: A lot of people don't know about those, so it's good you're mentioning them.

Kendall: Yes, those are available to you if you’re in K thru 12 education in public school; those are legal things that you can set up with your school system. But in college, it's just the whole wild west, and every college can treat it differently. And obviously through the ADA, they have to provide reasonable accommodation. But however they perceive that is totally different. I had a university that I really wanted to attend say that my K through 12 education was a right and this was a privilege. This is when I asked about things like flexibility around attendance, around the date that I would take my final exam — what if I got sick? Or what if I couldn't finish all my coursework by the end of the semester, could I get an incomplete? 

Lauren: And they were not having it, it sounds like.

Kendall: No. And this is one of the best institutions in the country.

Lauren: That’s pretty terrible.

Kendall: And it's a total shame. They could accommodate something that was really clear, like, if you are dealing with hearing issues, or if you're blind — things that seem static and predictable in that way. But they could not accommodate uncertainty. And the thing is, I think you have to be really, really honest with yourself and say, is this a good situation for me? If this is the situation, they're not going to change it just for you. So is this a situation that I can thrive in. And being honest with yourself and saying … actually no, I'm gonna go to this other school because they're way better at this than you are. 

Lauren: You ended up in a place that worked for you obviously.

Kendall: I did. Yeah, I really did. I am grateful that I had all of those conversations, though.

Lauren: Yes, absolutely. So that's tip number one

Kendall: Tip number two … don't believe the doctor is always right. You can question them, and they're not gods.

I think certain generations ago, doctors were gods. They're not gods.

They don't know anything. I mean, they know a lot, obviously. They go to school, they train.

Lauren: They know some stuff! But they don't necessarily know everyone's stuff.

Kendall: But medicine is an art. It's not a science. It really is an art form, and they're guessing a lot. Its a lot of guesstimations.

Lauren: It’s all still experimentation.

Kendall: Yeah, it is. It really is. And I think in that way you have to question. You know yourself better than anyone else does. Trust yourself. Question them. 

Lauren: I love that. 

Kendall: And then my last thing … man … don't call yourself out. 

Lauren: Give yourself credit?

Kendall: You can do hard things. But you can also do normal things. I think oftentimes — and this goes for all different kinds of people, not just people with chronic illnesses — we can kind of just assume that we're not going to be good, or we're not going to be the best. So we take ourselves out of the equation and isolate ourselves. Or, don't engage in something because we're afraid we might “fail”. All of those things. And I think, to me, life is just so much better if you let yourself participate. Because truly, only your pride is at stake — and you can control your pride. When I was absolutely dead last in my cross country races, I just was, like, oh my gosh, well someone had to be last.

And also, now everyone's done so they can clap for me when I come in! 

Lauren: That’s great! 

Kendall: I have the biggest cheering squad.

Lauren: Yes, you do. 

Kendall: It would have been so much more sad for me to stay home and not be on cross country with all of my friends, and to isolate myself from that experience — because I knew I wasn't going to be good. And because it was going to clearly make me feel like, oh, well, my illness is making me less than in this situation. That's the truth. But I think sometimes you surprise yourself and you're better than you think you are. And then also, can’t you just do something for the enjoyment of it? No one really cares if you’re last … only you care.

Lauren: Also that life is here to be lived.

Kendall: Right! Yes. Don’t count yourself out. Put yourself in the game. Don’t let your pride get in the way of enjoying your life and being a part of something. 

Lauren: I think that's really beautiful. So here's the really fun Top Three List. Top three things that give you unbridled joy …

Kendall: Oh, awesome! That’s great.

Lauren: This is sort of related to what you were just talking about. You may have had to make these lifestyle changes … , you don't drink … and you're aware of social distancing when you need to be, etc. But the top three joyful things in your life. They may be guilty pleasures, they could be secret indulgences, comfort activities. Three things on that list that you would never compromise on because they just feed you so much joy.

Kendall: Well, I think the list changes a lot. And I've had various lists, I'm sure. But my current list right now … I love Cheetos.

Lauren: Crunchy or puffed?

Kendall: I’m kind of agnostic about it. I like them both.

Lauren: Oh my God, you're a monster! (laughs)

Kendall: I know! I like them both! I really like these fancy ones from Whole Foods …

Lauren: Oh, I didn't even know they had fancy ones. Are they Whole Foods brand?

Kendall: They’re some kind of brand like Barbara's something or other. They’re not the puffy ones, they’re the crispier ones.

Lauren: That crispy crunch!

Kendall:  I know. And the generic Cheeto brand. I love them too, and I like crunchy and puffed.

Lauren: Whenever I go to a gas station, I’m, like, is it Cheetos time??

Kendall: I understand that, because whenever I go to an airport, it’s Cheetos time. Which does not go bode well for the fingers! Honestly, it’s not super sanitary. And I would not recommend it in a Corona crisis.

Lauren: (laughs) Not right now! Maybe in a few months.

Kendall: You can eat Cheetos in the privacy of your own home.

Lauren: Yes, you can!

Kendall: So Cheetos is one of the first things that come to mind. Cheesy, free form television.

Lauren:  I thought you were going for another cheese. I was, like, okay, so we're going to be talking about cheese now. Cheesy TV, however.

Kendall: Yeah, I like cheese in all varieties. Cheesy free form television. So right now I'm loving The Bold Type. 

Lauren: Oh my God, I love that show!

Kendall: I love The Bold Type!

Lauren: It’s so good!

Kendall: When I started this new job at the ACLU … I don't even know how it came up … but my co-worker who sits right next to me, we chat about a lot of things. One of the things I said to her was, “Do you watch The Bold Type?” And she goes, “I'm sorry. I’m a millennial in the media world in New York City. Of course I watch The Bold Type!”

Lauren: That’s very good to hear because I want that show to have many seasons. It is the show we need right now.

Kendall: It’s so good! So, I like that show. I also like Good Trouble.

Lauren: I also love that! Those are my two favorites!! I never watched The Fosters, but I love Good Trouble.

Kendall: Same. We are a very marketable demographic, that’s all I’ve got to say.

Lauren: Yes, but there's a decade between you and I — and we both like it.

Kendall: That just means it’s good television.

Lauren: It's good television. But I'm also an elder millennial. So there you go!

Kendall: Yeah. You're part of it, though. I'm a younger millennial. 

Lauren: You’re one of the baby millennials!

Kendall: Yeah, I think I'm on the edge. Edge-ish. I'm safely four years in the millennial category.

Lauren: Yes, just. All right. So cheesy TV, and Cheetos.

Kendall: Okay, let's see if I can keep to the theme. What else? I really like the Bon Appetit Test Kitchen videos on YouTube.

Lauren: Ooh, I love that. No one has recommended those, and that’s perfect watching in quarantine.

Kendall: It’s so good. There’s so many. The whole cast, you get to know them. Also, I really like … she’s not a Bon Appetit person, she's kind of her own thing. She’s a contributor though. And The New York Times cooking. Her name is Alison Roman. I'm kind of obsessed with her. I mean,  I make the cookies, make the stew, make the dip, make all the things.

Lauren: Oh, that sounds amazing.

Kendall: Yeah, we had an Alison Roman party where everyone made an Alison Roman dish. She has two cookbooks, and then a bunch of viral recipes. And it was a great time.

Lauren: That sounds awesome. Was that when you were at The Times?

Kendall: No, this was a month ago. It was pre-Corona, post-The Times.

Lauren: Your zest for life is very real to me! You’ve reminded me of all my favorite snacks right now, that I'm not going to go to the grocery store to buy!

Kendall: I know. I’m hungry!

Lauren: I know. I should have locked myself in with some Cheetos. I messed this up!

Kendall: I can have dinner after this. You maybe have like an hour, I don't know?

Lauren: I’m ready to eat. I have a weird eating schedule because I get up late. So I’m, like, I'm ready for dinner. I'm gonna go cook myself a pork loin. It's gonna be beautiful.

Kendall: Amazing.

Lauren: Well, Kendall, it has been such a pleasure chatting with you today. Can you tell our listeners where they can find you on social media?

Kendall: You can find me on all the social things, mostly Twitter and Instagram. On Twitter, I'm @KCiesemier. I'm sure you'll find it. And on Instagram, I’m my full name, @KendallCiesemier. 

Lauren: Is there anything else you'd like to share before we sign off?

Kendall: No, thank you so much for having me. This was such a joy! 

Lauren: It was such a great conversation. I'm so glad we got to meet, and we were connected by the lovely Sneha Dave. Another wonderful advocate in this community. 

Kendall: You’ve had a lot of good guests. 

Lauren: Look, I'm very fortunate.

Kendall: Stay tuned for more, right?

Lauren: Exactly. Stay tuned for more, kids! Especially for your quarantine pleasure! Boy, oh boy, do I want those Cheetos. Well, Kendall, thank you so much. It's been so great chatting with you, and I hope we get to chat again soon.

Kendall: Thank you so much for having me.


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