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- [00:00]
Susan Burton
You're listening to an iHeart podcast.
- [00:05]
Khalilah Holt
ChatGPT plus is free for college students now through May. That means you have no limits on how many ways you can prompt ChatGPT to help you through the worst part of the school year. I spoke with producer and college graduate Khalilah Holt. Yeah, you can create any image you can think of in any style. Quick, give me an image.
- [00:24]
Katie
Sylvia Plath Jinks Stand up Comedy Ding.
- [00:28]
Khalilah Holt
Sylvia Plath Happy at last. Thanks to ChatGPT. ChatGPT plus free for college students through May. Restrictions apply.
- [00:37]
Laura
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- [01:23]
Khalilah Holt
Hi heavyweight listeners. While the team is busy working on next week's special episode, we don't want you flipping podcast stations. So we're bringing you something from our friends at Serial and the New York Times. It's an episode from the podcast the Retrievals that we've been eager to share. It's about these women who went to the Yale Fertility center for a procedure called an egg retrieval. For months, patient after patient complained that they were experiencing excruciating pain during the procedure. Like the anesthesia they were given didn't work at all. But time after time, these women were essentially brushed off until finally everyone found out what was really going on. It's a gripping story that goes to places you completely will not expect, places that are both deeply personal and also point to larger structural failures in the world of healthcare. Susan Burton, the reporter of the story, does an incredible job delicately guiding you through shifting sympathies and the complexities of the case. We've got episode one for you, but I'm sure, like me, you're going to want to tear through the entire series. The Retrievals Episode one Coming up right after the break.
- [02:30]
Susan Burton
The women are Seeking fertility treatment for a variety of reasons. They've had a couple miscarriages and they're pushing 40. 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.
- [03:08]
Katie
You know, Yale's just a huge name, and you just think anything that has anything to do with Yale is going.
- [03:13]
Susan Burton
To be, you know, the best of the best.
- [03:15]
Julia
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, and you want, of course you want that.
- [03:29]
Susan Burton
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've 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 in 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 2020. 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.
- [06:23]
Laura
I was excited, like, 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 going to be easy because I had been through so many surgeries and procedures. I was just like, you know, 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.
- [06:45]
Susan Burton
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.
- [06:58]
Laura
Two drugs, fentanyl and another one midalazam or xolam. And I believe that one's to induce sleepiness.
- [07:06]
Susan Burton
Together, these two drugs offer what's often called moderate sedation. Basically, the fentanyl takes away pain and the midazolam 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.
- [07:34]
Katie
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. And I. So I expected to go in and have twilight anesthesia, you know, not full anesthesia, but not feel anything.
- [07:54]
Susan Burton
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.
- [08:09]
Laura
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 pole. And I walked into there, and you get on the chair or table, whatever they call it. And that's. From there, they said, you're not gonna feel anything. And they, you know, they explained everything that was gonna happen.
- [08:29]
Leah
They started the procedure and, you know, I was just sort of taken by surprise, not expecting the excruciating pain and just letting them know that, you know, I don't think the pain medication is doing anything. You know, it really feels like you're stabbing the needle.
- [08:53]
I
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 couldn't. I had to try and look away because literally each needle pierce you feel.
- [09:13]
Leah
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 too much pain, that they had to stop at that point. I remember them giving me more. More of the pain medication and me saying, it's not making, you know, it's not making a difference. You know, a nurse coming over and putting a wet towel on my head and another nurse holding my hand and them comforting me and saying, you know, you're going to be okay.
- [09:47]
I
The nurse who. She was at 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 and just telling me that I was going to be okay, that I was going to get through it. And up until that moment, I'm so excited, like, oh, I have 24 follicles. Like, this is great. I'm going to have a great egg. Retriev. And then you're like, oh, my God, I wish there was only one. Like, everything was counting on that retrieval. And that's how it feels like the whole. The way of, you know, your world. 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?
- [10:46]
Leah
And, you know, your feet are in the stirrups, and, you know, you're supposed to be laying on the table, but I remember tightening up and just trying to relax my body so that they could do what they needed to do because I was so tense that, like, my bottom was almost off of the table.
- [11:04]
Laura
I remember, like, thrusting my hips up, actually thrusting my hips up, saying, I feel everything, like. And, like, nobody believed me. And it's just like, I don't know, but what are you gonna do? You know, I wanted the procedure done. I just let it happen. And I was like, I'm awake. So.
- [11:30]
Katie
Knowing. You know, I was stone cold sober and awake. And I remember the egg retrieval. You know, they kind of do them one by one or like, a couple at a time. You know, my impression. And so you have moments in between pain to say, like, what the fuck is going on?
- [11:47]
Laura
I do remember. I think I swore I was using curse words because it was just so painful, you know?
- [11:54]
Leah
I don't know if I can do this any longer.
- [11:57]
Laura
You know, you just have to get through it. It's going to be over before you know it.
- [12:00]
Susan Burton
Okay? This is going to be over eventually.
- [12:01]
Leah
You can do this. You can do this.
- [12:03]
I
Want this moment to be over.
- [12:05]
Leah
Get through it. Get through it.
- [12:10]
Katie
I remember yelling or kind of making like, ah. And. And really, like, looking in confusion at my nurse, the attending nurse, and her saying, you know, I'm giving you the most I can legally give you.
- [12:22]
Susan Burton
She said that that's the maximum that she's allowed to give me, so she couldn't give me anything else.
- [12:27]
Leah
I'm almost certain that at one point they said that they had given me all of the pain medication that they could give me.
- [12:33]
I
At one point, they did say that I had maxed out. I couldn't have any more Fentanyl or Verset. And I was like, how is this possible?
- [12:40]
Laura
How does that even. Like, how am I feeling this?
- [12:42]
I
How do people go through this?
- [12:44]
Laura
I can feel that. Like, I could feel the. I don't even know how to describe that. Like, you can just feel them inside of there. 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.
- [13:04]
Susan Burton
It's. It's. This is hard to do. But could you describe the pain that you felt?
- [13:10]
Katie
Oh, gosh. I. It felt like someone was like ripping something from the inside of your body.
- [13:22]
Susan Burton
Yeah. Which is what they were doing.
- [13:26]
Katie
That's what it felt like.
- [13:28]
Susan Burton
Yeah, yeah, yeah. I'm sorry.
- [13:32]
Katie
But I remember almost immediately thinking, or almost daydreaming in that moment, that the attending nurse had 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. And I remember telling my friends after the procedure, 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. 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.
- [14:24]
Susan Burton
That's so fascinating that that's the image that raised itself up for you. Because it is so evocative. 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.
- [14:56]
Laura
Drug 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. Connecticut nurse admits that she swapped out anesthesia drugs for salt water, causing excruciating pain to women during infertility treatments.
- [15:15]
Susan Burton
It happened at a top rated center affiliated with a horrible story about the.
- [15:19]
Julia
Extremes a fertility nurse struggling with drug.
- [15:21]
Leah
Addiction took to get her fix.
- [15:25]
Susan Burton
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 come up with, 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, or minimized. In fertility treatment, you evaluate the outcomes by whether you wind up with a baby. That's the metric by which success is measured. It all went well if you leave with a live birth. The outcomes here are a lot more complicated. For everyone from Serial Productions and the New York Times. Hi, I'm Susan Burton and this is the Retrievals. This is episode one, the Patience. 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.
- [18:14]
Laura
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 she was just replying like, oh my God, how could you? What do you mean? You felt everything? And I'm like. 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.
- [18:45]
Susan Burton
I'm not sensitive to fentanyl, is a common theory.
- [18:49]
Leah
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 fentanyl epidemic where people are addicted because it did nothing for me.
- [19:12]
Susan Burton
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 to.
- [19:26]
Leah
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, gutted me. Yeah, it was like a gutted feeling. It was like someone had been inside me, scraped me hollow. It was burning.
- [19:49]
Susan Burton
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 screen. It hurts a lot, but it's less explicable. And because of that, scarier.
- [20:03]
Laura
You know, your mind just goes to.
- [20:05]
Katie
The worst possible places.
- [20:06]
Laura
You know, I'm thinking, am I bleeding?
- [20:10]
Katie
You know, am I bleeding internally?
- [20:12]
Laura
Is this like a pain is. Normally a pain is a sign is protective.
- [20:17]
Katie
Right. It tells you something's wrong.
- [20:19]
Susan Burton
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.
- [20:41]
Julia
I remember vomiting. They were giving me some fluids. I was very uncomfortable. There was no way I could walk. They put me in a wheelchair and wheeled me out, and I just had this feeling like, this is not right.
- [21:02]
Susan Burton
Julia is 31 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.
- [21:37]
Julia
I fell asleep for a little while, and then I woke up and I was nervous. I had a. We had a babysitter here watching my daughter. And I just. You know, you wake up, you're like, oh, my God, who's with my kid? I need to. And I walked a few steps to try and go down the stairs, and I Realized I really had gone too far from the bed by this point. The pain was excruciating, I would say. And I turned to go back to lay down in my bed again, and I, I mean, I don't remember this, but I, I blacked out or passed out, and I woke up on the.
- [22:20]
Laura
Floor.
- [22:22]
Julia
And my, my, my. I kind of busted my lip open.
- [22:28]
Susan Burton
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.
- [23:01]
Julia
By Sunday, I sort of got the sense I was annoying him.
- [23:05]
Susan Burton
Julia keeps waiting for a call from her official doctor. By Tuesday, she still hasn't heard from him.
- [23:11]
Julia
It was impossible for me to understand how he hadn't called me by this point. But I called his office on Tuesday, basically, you know, saying, I need to talk to you. I wrote down what he said, and I've kept this note since that time. He said he was not alarmed, but perplexed and surprised at my experience. Those words, I guess, ring pretty hollow now, right? Knowing that there was a pattern of many women who had extreme, inexplicable pain after the egg retrieval.
- [23:55]
Susan Burton
What did you make of that language? Like, at the, in the moment, perplexed and surprised?
- [24:05]
Julia
It was. I mean, I guess I felt crazy. I mean, I felt. I mean, you're. By this point, I'm asking myself, like, am I being difficult? Am I. I mean, am I. I mean, you just, you just question your, your sense of self. Like your, your ability to assess your situation rationally, which is very disconcerting when that happens because at least at the end of the day, you have that right. 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 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 treating me like I was like, nuts, you know, for still, you know, being in pain and just Having a. What I would call a difficult time. You know, I just left the office, I mean, crying. You know, 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 that. That this was so hard for me.
- [25:51]
Susan Burton
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 said, schedule 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.
- [26:33]
Leah
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. None were healthy enough to go to testing, and we had to talk about moving forward. And that's when I really expressed my sort of shock that the procedure was as painful as it was and talked about if there were other pain management protocols that could be considered at that point.
- [27:09]
Susan Burton
And.
- [27:11]
Leah
I was told that, you know, that was the best pain medication that was available. And my doctor prescribed me 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. You know, it was the pain. It was severe pain, not anxiety about going into it.
- [27:45]
Susan Burton
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 concerned. But then he just didn't say anything after that. So I was like, okay, I guess. And 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 to be painful. Other women are talking about what happened with family and friends.
- [28:10]
I
So at that point, I had talked to a couple of family members who had done retrievals, and I felt even worse. There's nothing like feeling shame from, like, another female and unintentional too, you know, like, hmm, that just seems weird because, you know, I was wheeled back there and joked with the staff and then fell asleep and woke up and was fine. And that seemed to be the general consensus between procedures at different clinics that, oh, yeah, I was kind of alert, but I Didn't feel anything. It was really no big deal. Like, the shots ahead of time were way worse from 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.
- [29:18]
Susan Burton
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 discomfort, 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.
- [29:44]
Leah
You know, again, you hear about IVF and how tough 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, and sort of just thought, this is what women go through.
- [30:14]
Susan Burton
Yale 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. Of the 12 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 40, 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. One was doing this on her own at 41, after the end of a long relationship. Another left her boyfriend partway through the process and then fell in love with the new guy at the office. One was born in Iran and came to the US as a refugee. Another grew up in Jamaica. 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 1 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 firm, and a lecturer at Yale in the Department of American Studies. Her name is Leah. 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, Leah located her Experience within a context of assumptions about women patients, that they are unreliable narrators of their own symptoms, that they are anxious, exaggerating.
- [32:21]
Leah
But I remember the first time I went in there to get ready for the ultrasound, There was blood on the floor 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 Navid was with me. I think, was Navid 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. It was like you. You walk in and I was like, there's blood. You guys left blood over. What is going on here?
- [32:59]
Susan Burton
Did you. Did you say anything to, like, did you say that?
- [33:01]
Leah
But 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, like, I study this stuff, I teach this stuff, and you're there and you're like, oh, 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 that's how we're gonna treat her.
- [33:43]
Susan Burton
Hysteria comes from the Greek word for uterus. Ancient explanations for it involve an empty uterus. 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.
- [34:06]
Leah
I remember being like, there's blood on the floor. You know, I was really upset. And they're like, okay, okay.
- [34:12]
I
I mean, it's.
- [34:12]
Leah
You know, I. It 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.
- [34:47]
Susan Burton
Leah felt like her doctor wasn't listening to her. She Also didn't trust her assigned nurse. Then came Leah's first retrieval. She felt her pain, wasn't taken seriously by anyone. She says they all blew her off. Leah wasn't happy with her treatment, but she decided to continue.
- [35:04]
Leah
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.
- [35:14]
Susan Burton
Leah asked for a new doctor. He oversaw her next cycle. And soon she went in for another retrieval.
- [35:22]
Leah
Right after you're in that room, the anesthesiologist came up to me, and she said, you know what?
- [35:28]
Susan Burton
You.
- [35:28]
Leah
You are waking up. You were waking up. We had to give you some more meds, you know, you were waking up. So again, you. Your body, you were nervous, you were agitated. You burdened us. Your kind of uncontrollable body put us in a position where we actually had to give you more drugs.
- [35:51]
Susan Burton
You. You.
- [35:51]
Leah
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 already left the doctor because I didn't like the doctor. So 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 woman who's just really angry that she doesn't have a baby.
- [36:31]
Susan Burton
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. Lea 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, Lea 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.
- [37:52]
Leah
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.
- [38:06]
Susan Burton
In this moment and throughout her treatment, Leah 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 the 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 not only did you know something was wrong, you knew exactly what was wrong.
- [39:08]
Katie
I did.
- [39:10]
Susan Burton
Yet still you constructed, like, this other narrative to explain it.
- [39:15]
Katie
Yes.
- [39:16]
Susan Burton
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.
- [39:37]
Katie
I mean, you know, 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 just seemed so obvious. But then, you know, then you sort of come out of the. I remember just coming out of the shock and recovering from the procedure, and things just go on, you know, I. No one is addressing the fact that I was sober during the procedure. And 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 that's how my body responded. And my nurse was. And I remember her saying, I think something like. I think it was so painful because we got so many eggs. And so it was just sort of this, like, 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, the other explanation for me was that maybe I'm not sensitive to certain opiates, you know, And 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 not sensitive to fentanyl. So I started to kind of tell, just tell myself a story about my pain, just try to understand, you know, it's a way of just understanding my experience and thinking, yeah, maybe this is what happened.
- [41:30]
Susan Burton
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 10 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 stops fertility treatment and doesn't know when or if she will ever resume it. She never wants to go through an egg retrieval. 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 Clomid crazies for a reason, one of the women tells me. And the money. Always the money. If your insurance covers this, 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 15k 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 onto this now, the pain and the fear of more of it.
- [43:59]
Laura
The first time I went in clueless, thinking, you're not going to feel a thing. So I think this. The second time I had a lot more anxiety.
- [44:07]
Susan Burton
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.
- [44:28]
Laura
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 do we keep 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.
- [44:45]
Susan Burton
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.
- [44:55]
Laura
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.
- [45:01]
Susan Burton
It was.
- [45:02]
Laura
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, and then for me to tell her, you know, this was supposed to be a special moment because we're preserving my fragility and I'm sorry, and for, 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.
- [45:39]
Susan Burton
What did the two of you do like, the rest of that day? Did she drive you home?
- [45:43]
Laura
Yeah, she drove me home and she stayed with me because she had already been staying with me a lot, you know, during the day, you know, after my surgeries, because I couldn't even at that point, I still wasn't allowed to lift more than five pounds.
- [45:56]
Susan Burton
So.
- [45:57]
Laura
Because I was still recovering from the other surgeries. So, yeah, she was with me and, you know, paid me 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, now we just battle the next thing. So.
- [46:29]
Susan Burton
In the other surgeries you had like cancer related surgeries. Like, what were your experiences of pain? Like?
- [46:38]
Laura
It's actually interesting that you bring that up because when I did have my double mastectomy, I was hospitalized. I think I was in for a day or two days, and strangely enough, 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 because the kitchen was closed. So I spent the entire night like vomiting because they couldn't. They were trying to give me like Percocets or something. And so I know what pain feels like, 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 in the order. And I had a really young nurse. Whatever. This is completely unrelated to that. But I know what pain feels like. I've been through it. And then when I was hospitalized at Christmas, that's funny 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 she's really savvy. You can type in 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 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 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, oh, wow, you know, and this was a month prior. And I didn't. 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, 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.
- [48:41]
Susan Burton
Months pass. Some of the women get pregnant. Others are still trying. Some of them are still showing up at that clinic for blood draws when they open their mailboxes in December 2020.
- [48:55]
Julia
Christmas was on a Friday of 2020, 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 today. And I waited until Monday, the 28th, and, you know, it was a nice day. I went outside, I got the mail, and, you know, I got this letter.
- [49:24]
I
So I got this letter in the mail. It's nothing fancy.
- [49:28]
Susan Burton
It's.
- [49:30]
I
Yale envelope. I'm assuming it's a bill. Bills never stop coming with ivf.
- [49:36]
Leah
You get so much when you work at Yale also. You just get, like, Yale emblazoned mail. And so you're like, oh, okay, whatever. It was like this thin thing, and I was like, oh. They, you know, changed locations or something. It's like, this is not important.
- [49:55]
I
And instead of just setting it aside, I happened to open it, and I was furious.
- [50:04]
Katie
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.
- [50:15]
Julia
You know that they've become aware that the nurse was switching out the fentanyl with the saline.
- [50:23]
Katie
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, in some medication vials. As a result, some patients may have received saline instead of the intended narcotic medication during their procedures. While there's no reason to be 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 informed.
- [50:54]
I
They make this stupid comment in the letter that there was no harm done from this happening. And I don't know if Hal was home or. I called her and I was like, bullshit. No harm done.
- [51:14]
Leah
Don't send me a letter and tell me that we're confident no one's, you know, outcomes were affected by this. I know my outcomes were affected by this. I know what I experienced and went.
- [51:26]
I
Through, but Yale wasn't going to help me. They didn't think there was harm. They didn't think it was a problem. You know, that it was the most. 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, we had this little breach and you're fine, no biggie. Go about your day.
- [51:48]
Leah
Again, no one reached out to talk with us or to see what we experienced as patients. My only communication about it was through the letter, and that's still to this day.
- [52:03]
Susan Burton
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.
- [52:17]
Laura
It was mind blowing. I immediately called my mother, I immediately called my sister in law, and I'm like, oh, like, I don't know, something had just hit, like, it all makes sense now.
- [52:26]
Leah
And it was like, okay, it all makes sense. It was almost a relief. A relief to know, like, you know, I'm not crazy, there's nothing wrong with my body. I don't have something like blocking opioids or, you know, where, you know, my body is wrong and doesn't react to medicine and.
- [52:48]
Laura
But it also shows how much they ignored my pleas for help and, like, saying, like, like, no, nobody believed me. And so in a sense, it was like, relief, you know, just knowing that what I felt was real.
- [53:08]
Susan Burton
But there's more. The letter continues.
- [53:12]
Katie
The law enforcement investigation and our own review have found no reason to believe that you were exposed to an infection due to this event. Even so, we can appreciate that you may want further reassurance. And if you wish, we will arrange for you to be tested for a group of bloodborne infections at no charge.
- [53:29]
Julia
And I was like, what the fuck? You know, those words, not alarmed, but perplexed and surprised came back to me, right? And you just feel like so completely let down by this institution that's supposed to make you feel safe. And I mean, I mean, keep. Keep you safe, right? An institution that's supposed to keep you safe. Right. That was gone.
- [54:03]
Susan Burton
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.
- [54:13]
Katie
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. And then it goes on to say, if you have any questions or want a blood test, you know, here's who you can call.
- [54:45]
Susan Burton
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 story, which is that this is barely a story at all. The questions the patients have been asking all along have a new focus.
- [55:02]
Leah
You know, as soon as I receive that letter, it's like, how does this happen? You know, and how does it happen at Yale? You know, a hospital system with such a great reputation, and 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.
- [55:26]
I
How does an entire facility let this happen? Who trained them? Who thought that this was a. Okay, I get sent home with, you know, I get packages in the mail with sharp needle containers and strict instructions and alcohol swabs and this crazy protocol that I'm expected to do at home. They make you double check things. You know, are there puncture marks? And I'm like, did I really spend more time following directions at home for hormone shots? But, like, where were they?
- [56:03]
Katie
I think my immediate reaction was, you know, how could this happen at Yale? Like, why wasn't there a better system in place to prevent it or detect it when it was happening and respond, you know, why wasn't our pain?
- [56:14]
Susan Burton
Listened to the women wonder about the system that failed them, but there's something very intimate and human that they are wondering about, too.
- [56:24]
Leah
We were notified that. That it was a nurse. We didn't have the name of the nurse in that original letter. And so it's sort of, you know, racing through your mind, like, well, which nurse? Because you build such a strong relationship with these people and you see them so often and you trust them and, you know, build a relationship. And so you're thinking like, well, which nurse could this have been? And then you're. You're showing up, you know, and, okay, who's not here anymore? Who's gone? And just trying to figure out who it was.
- [57:03]
Susan Burton
The patients know what happened. They're about to find out who did it. That's next.
- [57:19]
Khalilah Holt
That was episode one of the Retrievals. You can listen to the whole series on Spotify or wherever you get your podcasts. And we'll be back with a new episode of Heavyweight next week.
- [57:49]
Susan Burton
The Retrievals is produced by me and Laura Starcheski. Laura edited the series with editing and producing help from Julie Snyder. Additional editing by Meeki Meek, Katie Mingle, and Ira Glass. Research and fact checking by Ben Phelan and Caitlin Love. Music supervision, sound design and mixing by Phoebe Wang with production help from Michelle Navarro. Original music by Kala Pallone and music mixing by Thomas Poli Inde Chubu is the supervising producer for Serial Productions at the New York Times. Our Standards editor is Susan Wessling, Legal Review by Dana Green art direction from Pablo Delcon producing help from Jeffrey Miranda, Kelly Doe, Renan Borelli, Desiree Eboqua and in Manisha Muni. Sam Dolnick is the Assistant Managing Editor. Special thanks to Dr. Marcel Cedars, Calvin Hawker, Lisa Schumann, Kylie Silver and Dr. Maggie Smith. The Retrievals is a production of Serial Productions and the New York Times.
- [58:58]
Khalilah Holt
ChatGPT plus is free for College students now through May. That means you have no limits on how many ways you can prompt ChatGPT to help you through the worst part of the school year. I spoke with producer and college graduate Khalilah Holt. Yeah, you can create any image you can think of in any style. Quick, give me an image.
- [59:17]
Katie
Sylvia Plath Jinx Stand Up Comedy Ding.
- [59:21]
Khalilah Holt
Sylvia Plath Happy at last. Thanks to ChatGPT ChatGPT plus free for college students through May. Restrictions apply Men if you're ready to.
- [59:31]
Laura
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- [60:15]
Susan Burton
You're listening to an iHeart podcast.