Short Wave - When Your Body Rejects The Kidney It Needs

Episode Date: May 24, 2023

In February 2021, pandemic restrictions were just starting to ease in Hawaii, and Leila Mirhaydari was finally able to see her kidney doctor. Transplanted organs need diligent care, and Leila had been looking after her donated kidney all on her own for a year. So a lot was riding on that first batch of lab results. "Immediately, all my levels were just out of whack and I knew that I was in rejection," she says. "I've had to work through a lot of emotional pain, of feeling like I failed my donor. Like, why couldn't I hold on to this kidney?"On today's episode, editor Gabriel Spitzer walks us through Leila's journey — from spending her late 20s on dialysis, to being saved by a gift and ultimately, to the search for another donated kidney. Learn more about living donation from the United Network for Organ Sharing. See pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences.NPR Privacy Policy

You're listening to Shortwave from NPR. Hi, Shortwavers. Emily Kwong here with editor Gabriel Spitzer. Hello. Hey, Emily. Okay, so you're going to introduce it to someone. Yes, yeah. This is a fellow Seattle area person. I first talked to her about eight years ago.

Her name is Leila Mirjadari. She was in her late 20s at the time. And one day she woke up and found that her vision had gone kind of wonky. So she went to get it checked out. The physician came in, sat down quietly, and told me that my kidneys had failed, that I had, you know, maybe about 5% left. I didn't know if I was going to live to see tomorrow or I was an organ failure. Oh, wow. Yeah.

And when your kidneys fail, you're like your body's no longer filtering the waste products out of your blood, and so your blood itself can become toxic. And for Layla, this actually caused bleeding in her eyes. It sounds like a really scary thing for her. And when you talk to her eight years ago, you said she was in her late 20s? I mean, that's really young to go through something like this. Yeah, this is like not a normal thing for a healthy young adult to go into organ failure. For Layla, they think what started it might have been like about with the flu that went really sideways. Because her kidneys weren't filtering her blood, she had to go on what's called dialysis.

First, she went to a special center several times a week, and then she did it on our own at home. And so she'd have to use like a special machine to pump saline solution into her abdomen. So I did it every day, eight hours a night. I would have to tuck up to my machine. While you're sleeping? Yes, or try to sleep is what I always told people. You know, you can feel the pressure of fluid being put in and out of your stomach. Is it cold?

It isn't because the machine had a warmer. But if it was ever cold, you could instantly feel it. You would cramp and it would be very uncomfortable. But I would normally have a warm. around two liters in my abdomen, you know, at a time. You know, sometimes I would feel like I would look, you know, like six months pregnant, but it would just be all fluid that would be in my stomach. How long did she have to do dialysis? Almost three years through, you know, prime young adulthood, unfortunately. And the only way to get off dialysis permanently for most people is to get an organ

transplant. So Layla went on this whole exhausting search for an organ and then this waiting game. and then finally she found a living donor. So at the end of this year's long surge, she went to the hospital to receive a kidney. I remember getting wheeled into the operating room and I had this like cheesy smile on my face. And the anesthesiologist is like, are you okay? And I was like, yeah, when I wake up, I'm going to have this kidney.

And he's like, okay, but breathe. And the surgery was really successful because when she woke up, the kidney was in there. I've fondly named it the Hulk because it's very big and works wonderfully. My donor was a good-sized guy, so he had a nice big healthy kidney. And it's funny because it's in the front. So I feel it. Oh, you can feel it with your hand?

Oh, yeah. Get out. Yeah. Yeah. Wow. So do you, I mean, do you unconsciously kind of touch it? Or do you, do you, when you're thinking about it, do you reach down a little bit? Yeah, both.

And sometimes I just kind of hold it and you say thank you. I mean, to get this kidney is such a gift. And then also, she doesn't have to be on dialysis anymore. and using that machine every night. Exactly. And she was able to stop dialysis pretty much immediately. So this conversation with Layla was back in 2014. And then just a few months ago, I heard from Layla again.

Oh. What she told me was that after eight years with the Hulk, her body had begun rejecting the new kidney. And now she's on a hunt for another transplant. So today on the show, why our bodies sometimes reject a life-saving organ? And Layla's quest to find another one. You're listening to Shortwave from NPR. So Gabriel, tell us more about Layla.

It sounds like her body started to reject the kidney and she called you to talk about it. Yeah. So what happened was she had been living in Hawaii, which was working in a restaurant. She was like living her best life. And then the pandemic hit and everything shut down. So I lost my job and I went on unemployment.

And like, I'm sure millions of people in the U.S., Our health insurance is tied to our employer. And I have to take my immunosuppressants every day. There is no option, unfortunately. And I came into some pretty big barriers on how I could even just afford my medications. Oh, my goodness. Yeah. I mean, she couldn't even get her labs checked because she couldn't get into see her kidney doctor.

So she was just like flying blind. And so I made the very big mistake of trying to elongate my medications because I couldn't afford them. Okay. So she started rationing them because she didn't have the job or the health insurance to get more. Yeah, exactly. She just needed to make them last longer. She's on a few different meds, including tachrolimus. And the idea is that they suppressed her immune system so her body doesn't attack the transplant. And she just had to stretch them a little longer. It was me shortening the tachrolimus. I think it ended up taking three twice a day instead of four twice a day. So, I mean, it was... That's it.

That's it. And unfortunately, that kind of put me in the trajectory where I am now, where my immune system became too strong and started attacking the kidney. And once your immune system has that blueprint, it's so difficult to try to wipe that slate. What happened? Yeah. Well, after about a year, she was able to get work again in early 2021, and her health insurance kicked back in.

And so she went to her doctor as soon as she could. Immediately all my levels were just out of whack and knew that I was in rejection. Oh, man. So, yes, let's talk about this. What does it mean when your body, when your immune system starts rejecting a transplanted kidney? All right. So when you get an organ transplant from another person, you have to kind of fool your body into thinking it's your own tissue. So recipients take these medications to tamp down their immune systems.

otherwise all your immune cells will attack the organ because it's not you, right? So foreign cells, whether it's like a bacteria that's infected you or cells from your donor because they put that person's organ in your body, have these signature molecules on the cell surface and immune cells can read them. This is if you want our human barcode and it allows us to differentiate self from non-self. This is Nicolai Lika. I'm a kidney transplant specialist at University of Washington Medical Center in Seattle. I also serve as the medical director of the kidney transplant program.

And he says the immune system uses a few different weapons. Antibodies gum up the cellular works and recruit more defenses. T cells can latch on to the foreign cells and inject these noxious little enzymes. And once our immune cells read that foreign barcode, the damage starts. Many times we think about it as if you want a snowball effect. It's always going to be potentially recognizable by the immune system. Our immunosuppression keeps that snowball from practically not moving. But if the immunosuppression is too low or someone doesn't have access or stops taking their medications,

that snowball starts all of a sudden to roll faster and becomes bigger. In other words, that will lead to a clinical rejection. Yeah. And unfortunately, once the organ is damaged, you usually can't restore the lost function. Okay, so given what has happened in the year since this event, I mean, where does this leave, Leila? Well, she is now officially back on the waiting list for another transplant. Great news. I recently just was placed active on the UNO's list through the United Network of Organ Sharing, which is a very big leap and something that I was mentally having some blocks on moving forward with, feeling like the guilt, the shame of rejecting and. not knowing if I'm ready to get back in the game and do this all over again, you know,

go through the search, try to find someone, is there hope? I probably will be back on dialysis within the coming months, but I'm doing everything I can to keep my kidney. Yeah. Wow. I mean, it just sounds absolutely arduous to start this all over again, to look for a kidney. And you can hear how much she's trying to stay strong because she knows that this is what she has to do, even if it feels horrible, have to do it all all over again. Yeah, you can definitely get the mixed feelings. And I think it takes a huge mental toll on people, you know, the uncertainty and it's just exhausting. And, Emily, there's, I mean, more than 100,000 people in the U.S. are on the wait list for an organ transplant, mostly for kidneys.

And unfortunately, about 17 people die every day waiting for a donated organ in the United States. Yeah. And, I mean, this piece you're bringing. us about how the lack of adequate immunosuppression medication kind of put her in this situation, what do you think about that? Well, I mean, it's been awful for her to have all this sort of come down to like not having enough money. And it's been a huge problem for transplant recipients all over for years and years. But here's like one little ray of light here, Emily, because there's a new law that makes Medicare pay for those immunosuppressive medications for the entire life of a transplanted

organ. So it kind of solves the problem. Yeah. The only thing is that it passed in December of 2020, so like a year into Layla's Odyssey here. So anyone who's in need of immunosuppressants will be able to receive them regardless of their insurance status. I mean, that's both amazing and frustrating as hell, right? I mean, good timing, guys. I know. I've only could have just made it, you know, a few more years, but it does bring me comfort knowing that, you know, Whatever I'm going through, hopefully no one else will have to experience that. Gabriel, thank you so much for talking to Layla again so we could hear about what she's going through. And what, it sounds like, hundreds of thousands of other people go through in their search for the organs that their bodies need to thrive.

You are so welcome, Emily. And, you know, if people are interested in learning more about living organ donation, you can contact your local transplant center. Or you can get information from the United Network for organ sharing. we will post a link to that in our show notes. This episode was reported by the incredible Gabriel Spitzer, who has moved on from our team to work with the global health and development team as an editor on their goats and soda blog. Gabriel, we love working with you.

This episode was produced by Liz Metzger, and it was edited by our managing producer Rebecca Ramirez. It was fact-checked by Zazil Davis Vasquez. Our audio engineer was Gilly Moon. Beth Donovan is our senior director. of programming, and Anya Grundman is our senior vice president of programming. I'm Emily Kwong. Thanks for listening to Shortwave from NPR.