S01 Episode 1: The Patients

If you find yourself bewildered by this moment where there's so much reason for despair and so much reason to hope all at the same time, let me say I hear you. I'm Ezra Klein from New York Times Opinion, host of the Ezra Klein Show. And for me, the best way to beat back that bewildered feeling is to talk it out with the people who have ideas and frameworks for making sense of it. There is going to be plenty to talk about. You can find the Ezra Klein show wherever you want to.

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The women are seeking fertility treatment for a variety of reasons. They've had a couple miscarriages and they're pushing forty. They don't have fallopian tubes, or they need sperm. One woman has a diagnosis that's like a metaphor from feminist sci fi a uterus with a single horn like a unicorn. All of them wind up at the fertility clinic at Yale University.

A couple of the women choose this clinic because they work at Yale, and that's what the Yale health plan covers. Others go to Yale on the recommendation of their doctors. But in Connecticut, you don't even really need the recommendation. Yale Medicine. It's a blue chip medical brand. You know, Yale's just a huge name and you just think anything that has anything to do with Yale is gonna be, you know, the best of the best.

It's really not close to our house. It's not where I would have gone. But we figured, you know, another doctor from another hospital said this is the best you can get. Um and you want, of course you want that. To some of the women, the clinic seems to live up to its billing. They like their doctors, feel cared for by them. That man is an angel, one of the women tells me. He is by far the best doctor I have ever had.

Others are not happy at the clinic from the start. It's things like feeling like a number or issues with communication. There's a lot to communicate. You don't know how hard fertility treatment is until you get into it. And once you start it in one place, it can be difficult to go somewhere else. So they talk themselves into staying. That's the first thing they go against their instincts and talk themselves into.

The women drive to the clinic before work in the morning for blood draws, and then wait for the afternoon email from their nurse team. You really have to trust your nurse team, one of the women tells me. At this point she did. The nurse team gives instructions. and the women give themselves shots. These shots contain hormones to stimulate the body to produce eggs. A side effect is emotional volatility.

The wind is making me cry, one of the women says. But the thing is, you have to stay calm. Don't get stressed. It's so stressful trying not to get stressed. One woman uses a fertility meditation app called Expectful. She does her guided meditation on the beach. The app plays the sound of waves while the real waves heave in the background. It's absurd, but so much of this is absurd, including the money. There's all kinds of stuff that's not covered no matter what insurance you have.

Meanwhile, your ovaries enlarge, and you get so bloated that your abdomen feels like bricks.

And then finally, you get to the day you've been waiting for. The day of the first egg retrieval. Which is what it sounds like. The eggs are removed from the body and then fertilized or frozen, depending on what you're doing. How many eggs am I going to get? That is the big question. The more eggs you get, the better your chance of a healthy embryo, a viable pregnancy, a child.

The day of the retrieval, the women arrive at the clinic. They check in on different mornings and different months and calendar years. None of them are here on the same day, but they will come out of the day with the same story. Laura arrives for her retrieval on a weekday morning in january twenty twenty. She checks in and changes into a gown.

Two months ago, Laura was diagnosed with breast cancer. A double mastectomy followed, then an infection and additional surgeries. As soon as she freezes her eggs, she's going to start treatment. It's a lot. Laura is trying to put all of that to the side, and just focus on the procedure ahead.

I was excited, like trying, you know, trying to stay positive and just and I was just like having been through so much just the month prior, I was like, this is gonna be easy because I had been through so many surgeries and procedures. I was just like You know, it's I know what this is like. I know what it's like to be under anesthesia or something and be given medication so you don't feel things.

The egg retrieval is a surgical procedure. A long needle is inserted into the vagina, then pierced through the vaginal wall, and up into the ovary. Laura has been told in advance what drugs she will be getting during the procedure. Two drugs, fentanyl and another one m mydolizam or zolam. And I believe that one's to induce sleepiness.

Together these two drugs offer what's often called moderate sedation. Basically the fentanyl takes away pain, and the midazoline relaxes you. Some people get drowsy with this combination, others remain alert. The use of fentanyl surprises some of the women. One of them, a public defender, has seen a lot of clients messed up by fentanyl, and for a second she's worried. Another woman, Katie, a neuroscientist at Yale, feels a spark of interest.

And in fact, you know, just being someone who studies addiction and studies some opioid use disorder and as a curious person, I remember the morning of thinking like, Okay, this will be interesting. I've never tried fentanyl before. Um and I so I expected to go in and have twilight anesthesia, you know, not full anesthesia, but not feel anything.

The women complete the last steps before the procedure. Get an IV, go over some papers. If their partners came back with them, now their partners say goodbye. And then it is time. The women tell what happens next. I walked myself into the procedure room because you get rolled out afterwards, but you don't have any medication in you. You're just kind of hooked up to the IV. And um I walked into there and you you know, you get into the t on the chair or table, whatever they call it. And

That's from there. They said you're not gonna feel anything and they ki you know, they explained everything that was gonna happen. They started the procedure and, you know, I was just sort of taken by surprise, not expecting the excruciating pain. Um and just letting them know that, you know, I d I don't think the pain medication is is doing anything. Um, you know, I can it really feels like you're stabbing the needle. I felt everything.

It's literally your most intimate parts of your body. They're using these long needles. And there's also a screen. So I can watch what they're doing. And I I couldn't. I had to try and look away because literally each needle appears. You feel. As we were moving along, it was my blood pressure started going up. I was sweating profusely and telling them, you know, I was just in in too much pain that they had to stop. At that point, I remember them giving me.

more pain more of the pain medication and me saying I'm it's not making you know it's not making a difference. I you know, a nurse coming over and uh putting a wet towel on my head and another nurse holding my hand and them comforting me and and saying, you know, you're gonna be okay. was at my the top of my body, kind of at my shoulders, wiping the tears away and helping me kind of hold my breath to keep myself still so that the doctors didn't slip with the needle.

um and just telling me that I was going to be okay, that I was gonna get through it. And up until that moment I'm so excited, like, oh I have twenty-four follicles, like this is great, like I'm gonna have a great egg retrieval. And then you're like, oh my god, I wish there was only one. Like Everything was counting on that retrieval. And that and that's how it feels.

the weight of, you know, your world. M my partner and I, she's counting on me to be able to get through this and to have this successful retrieval. And all I'm feeling is oh my god I needed to stop. Is this worth it?

You know you're the stirrups and, you know, you're supposed to be laying on the table, but I remember tightening up and and just trying to relax my body so that they could do what they needed to do'cause I was so tense that like my bottom was almost off of the table. I remember like thrusting my hips up, actually thrusting my hips up saying I feel everything like And n like nobody believed me. And it's just like

I don't know. But what are you gonna do? I you know, I wanted the procedure done. I just let it happen and I was like, I'm awake. So Knowing you know, I was stone cold sober and awake. And I remember I I the egg retrieval, you know, they kind of do them one by one or like. Yeah. And so you have moments in between. To say like what the fuck is going on. Fine. I I do remember I swore I was using curse words because it was just so painful. You know I don't I No, you just have to get through it.

this moment. and really like looking in confusion. You know, I'm giving you the most I can legally give you. She said that that's the maximum that she's allowed to give me, so she couldn't give me anything else. At one point they did say that I had maxed out. I couldn't have any more fentanyl or versette. And I was like

How is this possible? How is that even like how am I feeling this? How do people go through this? I can feel that. Like I could feel the k I I don't even know how to describe that. Like you can just feel them inside of their, you know, as a woman, we've all been through things, you know, with those kind of doctors and stuff. But like this is just a pain. It's like hard to even explain what it felt like. It's it's this is hard to do, but could you describe the pain that you felt?

Oh gosh. Um I f it felt like someone was like ripping something from the inside of your body. Which is What they were doing. Yeah. That's what it felt like. Yeah. Yeah. Yeah. Uh, I'm sorry. Um But but I I remember almost immediately thinking, um or almost daydreaming in that moment that like the attending nurse had uh one tube going from my IV into my arm and another tube going from my IV into her pocket. Like it occurred to me almost immediately that the nurse was stealing the fentanyl.

Uh And I remember telling my friends, you know, after the procedure, uh my friends who were aware of what I was going through but who are also colleagues at Yale in addiction research, I remember telling them, like, the nurse is stealing the fentanyl.

uh because it seems so obvious to me. I mean fentanyl is the most diverted drug in medical settings. It's like a now major driver of the opioid crisis. And it was just really easy to imagine that someone with access to, you know, poorly controlled fentanyl would be abusing it. Um It I I uh that's so fascinating that that's the image that raised itself up for you because it is so evocative. Like like what Because it is so evocative. And also because it was true.

A nurse at the clinic was stealing fentanyl. Not Katie's nurse, not the tube in the pocket. But a nurse at the clinic was stealing fentanyl and replacing it with saline. She did so undetected for months. Which meant patients weren't getting fentanyl in their IVs. They were getting salt water instead. Drug adoption. Addicted former nurse is sentenced for a crime that caused unbearable pain to dozens of women. The nurse stole drugs and then replaced them with saline solutions.

It happened at a top-rated center of Philly. Horrible story about the extremes a fertility nurse struggling with drug addiction took to get her fixed. Yeah. A federal investigation determined that as many as 200 patients may have been victims of this substitution over five months in 2020. Lawyers for some of the patients believe the real number is higher, and this went on for longer.

I've talked to a dozen patients who believe they were victims of this. Eleven of them are plaintiffs in a lawsuit against Yale, and their lawyers were present when we spoke.

When I started doing these interviews, I was struck by the echoes in these women's stories. To me it sounded like a chorus of women saying, Something is wrong here again and again. The patients wondered how the clinic could have failed to detect this. And the conversations I was having made me wonder that too. And then I began talking to other people, staffers who'd been there, and I learned about what went on behind the scenes.

The staffers I spoke to were horrified by what the patients had experienced. They were grappling with their own questions about how this had happened, about what had gone amiss. The patients didn't know why they were in pain. Their doctors didn't know either. And in the absence of information about the true cause of the pain, people came up with stories to explain it. The patients constructed stories about why they felt pain. Staffers at the clinic came up with theories too.

Eventually the nurse would tell her own story about the pain, which would launch a whole new set of stories. The ones her friends and family would have The one that would get argued in court. The one Yale would tell. And all of these stories revealed something about women's pain. How it's tolerated, interpreted, accounted for. That's the metric by which success is measured. with a live birth. From Serial Productions and the New York Times, I'm Susan Burton, and this is the return.

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When the retrieval is over, the women are wheeled out to the recovery room. And one of the first things that happens is that they try to come up with an explanation for their pain. They put you into the recovery room and that's where you meet with whoever you were with. And I just remember that's when I had my phone back and I was texting my sister in law because she was my confidant for all of this, having been through that. And um And she was just replying like, Oh my God, how could you

What do you mean you felt everything? And I'm like, I and I was just like, you know, just explaining to her. I'm like, I don't know what's wrong. Like so and I even one of the texts I said, I said, I think I'm immune to fentanyl because like I was like, I don't think it works on me. I'm not sensitive to fentanyl is a common theory.

And I remember when the procedure was done, you know, my family sort of, you know, we have a family text that's ongoing. And I just remember texting them that, you know, it's hard to believe. that we have a a fentanyl epidemic where people are addicted because it did nothing for me. Not all of the women were alert during their procedures. Some were more deeply sedated. They were so out of it during the retrieval that they don't really remember it, or only kind of.

The pain hits when they come too. It was bad instantly, and it shouldn't really be bad instantly. Like you shouldn't wake up and be in like horrific, like nightmarish pain. But I woke up and I was I mean like it felt like someone had been inside me and like Me. Yeah, if it was like a gutted feeling, it was like someone had been inside me, scraped me hollow. It was In a way it is more confusing for the wake-up later patients. They're not matching each stab of pain to the needle on the skirt.

It hurts a lot, but it's less explicable. And because of that, scarier. You know, your mind just goes to the worst possible places.

Am I bleeding, you know, and am I bleeding internally? Is this it like a pain is normally a pain is a sign is protective, right? It tells you something's wrong. There's a lot of uncertainty in the recovery room, an elevated blood pressure, a nurse running around to get ginger ale, a doctor coming by to say there are fewer eggs than we expected. Are you sure you only want us to fertilize half of them?

It's all just very overwhelming, and on top of it, some of the women feel like they're being rushed out of the clinic. Julia is one of them. I remember vomiting. They were giving me some some fluids. I was Um very uncomfortable. Um, there was no way I could walk. They put me in a wheelchair and wheeled me out. And I just I just I just had this feeling like this is not this is not right.

Julia is thirty one years old, and already a college professor. This morning when her husband drove to the clinic, she'd been frantic. There was work on a bridge near their house, and they got stuck. There's only a short window to retrieve the eggs before you ovulate them, and Julia was worried she would miss it. When she arrived at the clinic, she felt a huge relief, like we made it, both we made it on time, and we made it to this day. Now she's feeling something she never expected.

At home, she goes upstairs and gets into bed. I fell asleep for a little while and then I woke up and I was nervous. I had a we had a babysitter here, uh, watching my daughter. And I just, you know, you wake up, you're like, oh my God, I who's with my kid? I need to um and I walked a a few steps. excruciating, I would say. Um and I turned to go back to lay down in my bed again. And I pa I mean, I don't remember this, but I I blacked out or passed out. Um

And I woke up on the floor. Um, uh, and my my f my I kind of busted my lip open. Julia calls the clinic, and they tell her that she should go to the ER. She's in so much pain that she can't bend enough to get into a car. An ambulance is called, and when Julia gets to the hospital, they check her out. The retrieval is a safe procedure, but things can go wrong. Your ovary can strangulate, a major artery can get punctured. But none of the obvious things are wrong, and nobody can explain what is.

Back home over the weekend, Julia calls the on call doctor at the clinic multiple times. by Sunday I sort of got the sense I was annoying him. Julia keeps waiting for a call from her official doctor. By Tuesday she still hasn't heard from him. it was impossible for me to understand how he hadn't called me by this point, but I called his office on Tuesday, uh, basically you know, saying, I need to talk to you. Um, I wrote I wrote down what he said and I've I've kept this note.

Since that time. He said he was not alarmed, but perplexed and surprised uh at my experience. Um those words r I guess ring pretty hollow, uh, now, right? Um knowing that there was a pattern of of many women who had extreme, inexplicable uh pain after the egg retrieval. What did you make of that language, like at the in the moment, perplexed and surprised? Um I mean I I j I j I I felt crazy. I mean, I I I felt Uh I mean you're a by this point I'm asking myself like

Am I being difficult? I'm am I I mean am I I mean you just qu you just question your your sense of self, like your your ability to uh assess your situation. rationally, which is very disconcerting when that happens. at least at the end of the day you have that, right? uh it you go you you start thinking about your whole life, right? Like I'm a pretty high energy person. Like I take care of a toddler. I have a PhD. I have a job. Like I I

run marathons in my free time. Like I'm I'm not, you know, like you have all these parts of your life that make you feel like that give you this sense of like who you are and then I just felt like like they were uh uh treating me like I was like n nuts, you know, for for for still, you know, uh being in pain and just uh having a r what I would call a d a difficult time. You know, I just left the office Uh I mean crying, you know, um I just felt like

Like nobody nobody cares. That's the way I would describe how I felt in the days after. Like nobody gives a crap, um, that

In the days after the retrieval, other patients live out versions of the same story. They also call the clinic. They ask, is this normal? They say, the Tylenol isn't helping. At home, they're laid up on the couch. They can't pick up their toddler. They wonder if they really should have scheduled themselves for a shift the next day. Not all staffers at the clinic are dismissive. But even when they respond with concern, there aren't any real answers.

Some of these conversations take place days after the procedure, like at follow ups to talk about next steps. You didn't really talk to the office until day five or day six. which is when I found out that none of the eggs had survived. Um, none were healthy enough to go to testing. Um, and we had to talk about moving forward. Yeah. And um that's when I really expressed my sort of shock that the procedure was as painful as it was.

And talked about, you know, if there were other pain management protocols that could be considered at that point. Um and I was told in that, you know, that was the best pain medication that was was available and my doctor prescribed me um an anxiety medication to take before the next procedure. And I remember saying to my husband, you know, I think it's strange because I'm not anxious about a medical procedure. Yeah. You know, it was the pain. It was severe pain, not anxiety about going into it.

Yeah. The next time that I saw my doctor, he asked me how the procedure went and I said it was really, really painful. And he was kind of like a little bit a little bit concerned, but then he just didn't say anything after that. So I was like, Okay, I guess and I this was my first time doing it, so I didn't know any better. So I was like, Oh okay, I guess it's supposed Other women are talking about what happened with family and friends.

So at that point I had talked to um a couple of family members who had done Retrievals. I felt even worse. Yeah. There's nothing like feeling shame. from like another female and it unintentional too. You know like that that just seems weird because, you know, I was wheeled back there and joked with the staff and then fell asleep and and woke up and was fine. And that seemed to be the general consensus between procedures at at different clinics that oh yeah.

But I didn't feel anything, it was really no big deal. Like the shots ahead of time were way worse than the actual procedure. And I started shutting down after hearing those stories that this was on me. Like I something wasn't right with my tolerance and my ability to handle this. The women are already settling on their stories about what happened to them. I'm immune to fentanyl. It's my fault. It's supposed to be painful. The clinic tells patients that they may experience mild disorder.

But now some of them have recalibrated their expectations, including Lynn, who will have eight retrievals at the clinic. All of them will cause her excruciating pain. You know, again, you hear about IVF and how how tough of a of a process it is mentally and physically. And you know, I I just thought This is what I have to do, this is what I have to do. This is what women go through.

Heel declined to offer information about how reports of pain were addressed at the clinic or to answer any other questions. Episode one of the retrievals continues after the break. This is Sarah Koenig, host of the Serial Podcast. If you're already hooked on this show, then maybe I don't need to say anything else here except if you want to hear the rest of it, subscribe to the New York Times. The end.

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Of the twelve patients I spoke to, most are white. The one black woman in the group was often the only black woman in the clinic waiting room. Everyone in the group identified as a woman. While a couple of them were pursuing pregnancy for the first time as they neared forty, most did not fit that stereotype. Most were married to men, one to a woman. That patient would provide the eggs, and her wife would carry the pregnancy.

Her wife presents as more stereotypically masculine, doesn't wear women's clothing, and at first family members were like Are you sure you want to do it this way? Yes, they were sure. Yeah. One was doing this on her own. Another left her boyfriend part way through the business. And then fell in love with the new. One was born in Iran and came to the US as a refugee. One had what she described as a horrible childhood. She essentially had to raise herself.

Another longed to have a second baby, because she was so close to all of her siblings. One had type one diabetes and was used to everyone always attributing all medical issues to oh it's your diabetes. All of them worked. A special ed teacher, an accountant at a maritime front. and a lecturer at Yale, in the Department of American Studies. Her name is Leia. Her scholarship encompasses a variety of subjects.

Exile and migration, she's the patient who came to the US as a refugee from Iran. And gender. From the beginning of her treatment, Leia located her experience within a context of assumptions about women patients. That they are unreliable narrators of their own symptoms. That they are anxious, exaggerated.

But I remember the first time I went in there to get ready for the ultrasound, there was blood on the floor um from a previous person's ultrasound. And I I have to tell you, it was as ominous as signs fucking come. And I just remember me and Nevid was with me, I think. What's happening with me? Or I subsequent Oh no, he couldn't go inside. He was waiting in the car. My husband was waiting in the car.

I was just shaking. I was like this isn't good. I mean it was like It was like you you walk in and I was like There's blood? You guys left blood over? ¿What is going on? What's going on here? Did you did you say anything to like did you say that? Here's the thing, and this is where it begins: is you are treated like a hysterical woman. from the second you walk in there. So you already know and like as a you know, like a person who I like I I study this stuff, I teach this stuff and

You're there and you're like, oh this is this is this is actually what's happening right now. Here comes like Freud's patient, the hysterical woman who's childless and angry and hormonal and terrified and bitchy and mean. And we're g that's how we're gonna treat her. Hysteria comes from the Greek word for uterus. Ancient explanations for it involved an empty unit. A woman was hysterical because her uterus was not full.

unanchored, the uterus roved through the body, which was what made women sick and crazy. To fix hysteria, you really needed to fill that uterus up. Like, so with the blood, I remember being like, There's blood on the floor, you know? I was really upset, and they're like, Okay, okay. I mean it's you know, I I it it w turned right back on me, and I remember one of the nurses was like, Okay, well you can calm down you know, I was told to calm down and

I mean and then when they're doing the ultrasounds of course they someone's doing a transvaginal ultrasound. So There's literally like this stick that's inside of you and they're moving it around and if you cringe, oh okay, it'll just be like another it's just another second. It's just okay, just be patient. So you're constantly over emphasizing or over dramatizing what's happening. It's not that big of a deal. Leia felt like her doctor wasn't listening to her.

She also didn't trust her assigned nurse. Then came Leia's first retrieval. She felt her pain wasn't taken seriously by anyone. She says they all blew her off.

Leo wasn't happy with her treatment, but she decided to continue. Here I was. I saw it. I felt it. I was alarmed by it. But I kept going because I wanted to have a baby. Leia asked for a new doctor. He oversaw her next cycle, and soon she went in for another retrieval. R right after you're in that room, the anesthesiologist came up to me and she said, You know what? You Waking up. You are waking up. We had to give you some more meds. You know, you are waking up.

So again, you, your body, you were nervous, you were sh agitated, you burdened us, your kind of uncontrollable body put us in a position where we actually had to give you more drugs. You you you were waking up, so we had to give you more fentanyl. And I was like Oh. But again. To them, to them, I'm this woman who's already like on edge. I l already left a doctor because I didn't like the doctor. So the the other physicians and the other nurses all know this about me.

I'm a kind of already unruly, perhaps entitled Overly kind of needy. who's just really angry that she doesn't have a baby. There's a balance you have to strike as a woman patient. You have to complain just the right amount to be taken seriously, but not so much that you seem shrill. Still, your pain is more likely to be underestimated than men's. Black women are more likely to have their pain ignored, no matter what they do. All of this we know from the literature and also from life.

In my life I've been the kind of patient where if I've ever spoken up, I felt like I need to be obsequious later to protect myself. That is what I felt I needed to perform. Leia knew she'd need to perform a whole range of things in order to get help. Stern, docile, smart, stupid, agreeable. And now, on a gurney in the recovery room, Leia became an observer. She would remember what was happening.

She would write about this one day. She tuned into the language, into the emphasis that to her seemed so interesting and fucked up, into the syntax that seemed to place the blame on her body. But at the same time, Leia had also internalized the narrative that her body was to blame. Her body was inadequate, deficient. That was why she was here. Her body had had miscarriages. Her body didn't make enough eggs. Her body couldn't cooperate long enough to get through a critical procedure.

Oh God, my body. Like here here it goes again. Not only can I not like have a baby, I also can't even like just lay still with the right amount of fentanyl. In this moment, and throughout her treatment, Leia was simultaneously the writer saying I can name what's happening here, and the patient saying, How could I have let this happen?

Other women occupied their own versions of this position. Their professional identities offered them one kind of story about these events. Their identities as patients directed them to another. Several of them had an area of expertise that was directly applicable here. In a way that is kind of uncanny. For example, there are multiple patients who work in healthcare, including one who's designed systems for the safe storage of medications. There's a nurse anesthetist.

She thought that anesthesia was the one part of fertility treatment she wouldn't have to worry about. And of course there's the addiction researcher, Katie, who had the prophetic fantasy. What's unique about you is that it not only did you know something was wrong, you knew exactly what was wrong. I did. Yet still you constructed like this other narrative. To explain it. Like other patients, Katie had expertise that gave her knowledge.

But she and others pushed that knowledge aside. They decided not to know what they knew in order to keep going. I wanted Katie to lay out the path to that cognitive dissonance. I wanted her to explain exactly how she got from one story to the other.

I mean uh you know, I as I've told you, like I came out of that procedure and I immediately I remember immediately texting my friends who are also colleagues in addiction research at Yale, like the nurse is stealing the fentanyl. It seemed it's just seemed so obvious.

Um, but then, you know, then you you sort of come out of the sh I remember just coming out of the shock and and recovering from the procedure and things just go on. You know, I um N no one is a addressing the fact that I was sober during the procedure. And I I remember violently shaking in recovery from like the shock. I don't know that that's related to having the procedure with or without fentanyl, but but that's how my body responded. Um

And my nurse was there and I remember her saying, I think something like, I think it's I think it was so painful because we got so many eggs. And so it's just sort of this like f positive kind of false narrative about what had happened. And so then, you know, I think I coped by coming up with an alternate explanation, which was that I do remember waking up during my

having my wisdom teeth being pulled when I was a kid to the nurse saying, Shit, shit and then, you know, giving me more drugs, putting me back under. So, you know, it the other explanation for me was that maybe I'm not sensitive to certain opiates. You know, and I I remember also that kind of became my narrative with, you know, my friends and colleagues kind of remember me sort of switching to that narrative and saying, like, well, maybe you're you're not sensitive to fentanyl, so

I started to kind of tell m just tell myself a story about my pain, just try to understand you know, it's it's a way of just understanding my experience. Um and thinking, yeah, maybe this is what happened. The story becomes a way not only to explain pain, but to cope with it. A way to not only make sense of the pain, but to manage it, to tamp it down, get through it. And this way, the story becomes the medicine that the patients weren't given.

The women gear up for second, third retrievals. They change their diets. They cut chemicals out of their home. They read the books the nurses recommend. Or they get ready for embryo transfers. They make reservations at a hotel in town so that they won't have to drive home over a bumpy road. Despite these efforts, some of the women miscarry.

One woman wakes up about ten days after her embryo transfer with some spotting. Don't think anything of that yet, a nurse reassures her. But the pregnancy test comes back negative. 'When do you think you might want to get started again? Her doctor asks her at a virtual follow up appointment. I am not ready, the patient says. She closes the telehealth, and that's the last time she talks to the doctor.

She never goes back to that clinic. She stopped fertility treatment and doesn't know when or if she will ever resume it. She never wants to go through an egg retrieval again. Fertility treatment doesn't always result in a baby. It's not just giving yourself shots that's hard. It's the cycle of hope and loss. It just clobbers you. And the longer you stay in it, the more the drugs mess with your head. It's called the Clomed Crazies for a reason, one of the women tells us.

And the money, always the money. If your insurance covers it. It probably only covers a few cycles. There's so much pressure on each one. Once you have to pay out of pocket, you're talking maybe fifteen K for one cycle, and that's the low end. Some of the women are keeping their treatment secret. One of them can't even tell her own mother. It's hard. It's hard to begin with, even without this extra layer that's been added on to this now. The pain and the fear of more of it.

The first time I went in clueless, thinking you're not gonna feel a thing. So I think this the second time I had a lot more anxiety. Laura doesn't get as many eggs as she hoped for the first time around. It's urgent that she start cancer treatment, and the doctors accelerate her cycle. Her second retrieval is scheduled for barely more than two weeks after her first. That morning, Laura's mother drives her to the clinic and sits in the waiting room, while Laura goes back for the procedure.

And I was shocked. I was shocked again that it was the same situation. I'm thrusting my hips and telling these people like why to wake speaking to them? And I was just like, I feel everything you're doing. And that was when I did I remember actually saying to them, I could drive myself home right now. I'm that alert. In the recovery room, Laura gets her phone back, and just like last time, texts her sister in law. Then she sees her mom. She tells them both how much pain she's in.

So my sister in law right away was like, Oh my god, I cannot believe you felt that again. But my mom, you know, she just felt she just it it was it's hard because, you know, she had seen me go through so much as it was with the cancer, you know, any mother who has to live watching their daughter go through that. Um and then for me to tell her, you know, this was supposed to be a special moment because we're preserving my fertility and I'm sorry. And bird like see that. It hurts her.

To see me in pain, you know. You know, and I was just like, Well, thank God I think this was the last time I had to do that, you know. So What did the two of you do like the rest of that day? Did she drive you home?

Yeah, she drove me home and she stayed with me, um, because she had already been staying with me a lot, you know, during the day, um, you know, after my surgeries,'cause I couldn't even at that point I still wasn't allowed to lift more than five pounds. So'cause I was still recovering. um from the other surgeries. So um yeah, she was with me and, you know, baby lunch and comforted me. And just, you know, we were like, okay, so now we just Go back to waiting and you know, hoping we get.

a good number and, you know, I just moved on from it because I faced many more surgeries that year as well. So, you know, I kind of had to just switch back into, you know, survival mode, like, okay, well now we just battle the next thing. So In the other surgeries you had, like cancer related surgeries, like what were your experiences of pain like?

It's it's actually interesting that you bring that up because when I did have my double massectomy, I was hospitalized um I think I was in for a day or two days and Um, strangely enough, the nurse the night nurse forgot to give me morphine. So I actually was awake and in pain the entire night and

I have a gluten allergy, so they couldn't feed me anything'cause the kitchen was closed. So I spent the entire night like vomiting because they couldn't they were gift trying to give me like Percocets or something. And so I I know what pain feels like. I've you know, I've Whatever.

And the next morning the doctor goes, I don't understand why she didn't give it to you. It was on the order and I had a really young nurse. Whatever. This is completely unrelated to that. But, you know, I know what pain feels like. I've been through it. Um And then we're going to be able to do

When I was hospitalized at Christmas, that's funny that like it that you bring that up because my sister in law actually had pointed out. She goes, Do you remember when you kept telling me you were immune to fentanyl? She goes, when I did a search on my phone, I guess you can she's really savvy, you can type in um like fentanyl in text messages and it'll bring up every conversation. She goes, I actually found one from when you were hospitalized at Christmas.

saying that you were on fentanyl and y I guess she had sent me a picture of her Christmas tree and I had made a comment like, Oh my God, did your house burn down? And She was just like and and she was like, What are you talking about? And I said, I don't know. The nurse just gave me fentanyl. And so she goes, Look, Laura, so it does work on you. Like you know, and this was a month prior and I did that didn't even dawn on me. Like, oh my god. So Yeah.

But when it came time for the other thing I was just like, oh, it must not work on me. Because you know, I just felt like nobody had heard what I was saying, so it just didn't exist. It was in my head, you know. So yeah, so I I don't know, I was I foolish because I didn't like dispute it more. Maybe not. I don't, I don't know. But like I just I believe them, you trust them.

Some of the women get pregnant, others are still trying. was still showing up at that clinic for blood draws when they opened their mailboxes in december twenty twenty. Christmas was on a Friday of twenty twenty. And the mail arrived. on Thursday, it was Christmas Eve. And I was busy and I just thought I'm just not I'm not gonna go get the mail. Uh and I waited until uh Monday, the twenty eighth. And, you know, it was a nice day. I went outside, I got the mail. You know I got this letter.

So we got this letter in the mail. It's not Yale envelope, I'm assuming it's a bill. Bill's never stopped coming with IVF. What you get so much when you work at Yale also you just get like Yale And so you're like, oh, okay, whatever. It was like this thin thing, and I was like, oh, they changed locations or something. It's like this is not important. And instead of just setting it aside, I happened to open it. And I was furious.

Um and it says, Dear Kathleen Garrison, I'm writing you I'm writing to you in my role as director of Yale Reproductive Endocrinology and Infertility to let you know that we have learned of an event that may have involved your care. You know, That they've become aware. That the the nurse was switching out the fentanyl with the saline.

A few weeks ago we learned that on multiple occasions, a Yale Fertility Center nurse replaced fentanyl, a routinely used narcotic medication, with a normal salt solution, saline. As a result, some patients may have received saline instead of the intended narcotic medication during the While there's no reason to believe that this event has had any negative effect on your health or the outcome of the care that you received, we believe that you should be in. Stupid comment in the letter.

There was no harm done. I I don't know if Hall was home or I called him. And I was like bullshit, no harm done. Don't send me a letter and tell me. you know outcomes were affected by this. I know my outcomes were affected by this. I know instant went through. But Yale wasn't gonna help me. They didn't think it was a problem. You know, that it was the...

Honestly, I think it was one of the most disrespectful ways they probably could have notified any of us that it had happened. That, you know, oh Do we have And you're fine. No biggie. Go about your day. Yeah again, no one reached out to talk with us or to See what we experienced as patients. The my only communication about it was through the letter. Um, and that's still to this day. And yet in addition to fury, there's also vindication.

When they learn the news, however they learn it, The women text their twin sister, or run inside to their husband. Or weep in their kitchen. It it was mind blowing. I immediately called my mother, I immediately called my sister-in-law, and I'm like Ugh like I don't know, something it just hit like it all makes sense now. sense. It was almost a relief. A a relief to know like I'm not crazy. There's nothing Opioids or you know, where you know my body's wrong and doesn't react to medicine.

And, but it also shows how much they ignored. my pleas for help and like saying like you like no I nobody believed me. And Sense it was like relief. You know, knowing that what I felt was real.

But there's more. The letter continues. The law enforcement investigation and our own review have found no reason to believe that you are exposed to an injured. Even so, we can appreciate that you may want a further reassurance and if you wish, we will arrange for for a group of bloodborne infections. And I was like You know, those words, not alarmed but perplexed and surprised, came back to me, right? And you just Like uh so completely let down.

uh by this institution that's supposed to make you feel safe and and I mean t I mean keep keep you safe, right? A s an institution that's supposed to keep you safe, right? That was gone. But maybe the most remarkable thing about the letter is the way it addresses pain. It seems to be saying, you did not feel what you felt.

I also want to assure you that the Fertility Center routinely uses a combination of pain medications during procedures. We closely monitor patients for signs of discomfort during every procedure and adjust medications or add medications as needed. In this way we can be confident that our patients stay comfortable even if one medication is not working. Well, I don't believe that accurately describes my experience. Um and then it goes on to say if you have Here so you can call.

The women put the letter on the counter in shock. For months they've been constructing their own stories about what happened to them. Now they have Yale's stories. Which is that this is barely a story at all. The questions the patients have been asking all along have a new focus. You know, w as soon as I received that letter, it's like How does this happen, you know, and how does it happen? Uh yeah. Uh you know, a a hospital system with such a great reputation. How did it happen for so long?

So many things had to go wrong, you know. for this to happen as long as it did. entire facility let this happen. Who trained them? This was okay. Okay. I get sent home when I You know I get packages in the Needle containers. Strict instructions and This crazy protocol. That I'm expected to do at home. Are there punctuals? I'm like, did I really spend more time? Yeah. How could this happen at Yale? You know why why was it? The women wonder about the system that failed them.

But there's something very intimate and human that they are wondering about too. We were notified that it was a nurse. We didn't have the name of the nurse. in that original letter. of racing through your mind like well which nurse because you build such a strong relationship You see them so often. You trust them and you know, build a relationship and so you're thinking You're showing up, you know, and okay, who's not here anymore? Who's gone? just trying to figure out.

The patients know what happened. They're about to find out who did it. That's next. The Retrievals is produced by me and Laura Starchesky. Laura edited the series with editing and producing help from Julie Snyder. Additional editing by Miki Meek, Katie Mingle, and Ira Glass. Research and fact checking by Ben Phalan and K. Music Supervision, Sound Design, and Mixing by Phoebe Wang. With production Mm-hmm. Original music by C. Supervising producer for cereal production.

At the New York Times, our standards editor is Susan Wesling. Legal Review by Dana Green. Art direction from Pablo Delcon. Producing help from Jeffrey Miranda, Kelly Doe, Renan Barelli, Desiree Ebequois, and Anisha Money. Sam Dolnik is the Assistant Managing Editor. Special thanks to doctor Marcel Cedars, Calvin Hawker, Lisa Scherman. Kylie Silver and Dr. Maggie Smith. Yeah.