What We Don't Know When We Check the Box
The system behind the gift of an organ
It’s easy to check the organ donor box on your driver’s license without thinking too much about how organs are treated and routed to people who need them. NYT investigative reporter Brian Rosenthal thoroughly examined the system. His complicated findings have led to congressional inquiry and meaningful progress. This is a conversation about where the system fell short, what his reporting changed, and what still needs work.
Outside of politics, Sarah is turning 45 today and has a project to celebrate this milestone that will take her up to age 50.
Topics Discussed
How the organ transplant system actually works (it’s not really a list)
Why doctors can refuse organs offered to their patients — and patients are never told
What federal pressure on organ procurement organizations produced in Kentucky
How the priority list was being bypassed 20% of the time — and why time pressure wasn’t actually the reason
Wealthy foreign nationals getting faster organ access at certain U.S. hospitals
What’s changed since Brian’s reporting and what reforms are now in place
The future of organ donation: animal organs, AI matching, printed organs
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Episode Resources
Federal investigation into organ donation safety and the Kentucky OPO (New York Times)
How organ procurement organizations bypass the transplant waiting list (New York Times)
How paired organ donation works through the National Kidney Registry (New York Times)
Wealthy foreign nationals receiving organ transplants at U.S. hospitals (New York Times)
Episode Transcript
[00:00:00] Sarah: This is Sarah Stewart Holland.
[00:00:13] Beth: This is Beth Silvers. You’re listening to Pantsuit Politics. Today we are talking with Brian Rosenthal, an investigative reporter at The New York Times who has written some blockbuster pieces on organ donation. Organ donation has been on our list for a long time. It’s layered, it’s personal, the stakes are high, the resources are constrained, the process is opaque. So we are very happy that Brian is here to help us understand where the system has come up short and what’s improving.
[00:00:38] Sarah: I was obsessed with these pieces, and I stalked Brian until we got him on our show. That’s what happened.
[00:00:43] Beth: And we waited a long time because Brian was on parental leave. We’re so happy for him. Congratulations to Brian and his family. It was worth the wait.
[00:00:48] Sarah: It was.
[00:00:48] Beth: And I hope that you all learn as much from this conversation as we did. And then Outside of Politics, happy birthday, Sarah. We are celebrating the big 45.
[00:00:57] Sarah: It’s the big 45. I want to tell you about my birthday project. I got a birthday project that’s going to take me to 50, Beth, and I want to tell everybody about it Outside of Politics.
[00:01:08] Beth: Okay. I’m ready.
[00:01:09] Sarah: Before we dive in, our one and only live show of the year is happening in Minneapolis on August 29th. We’re about a month away, and we want you to be there. Even if you can’t be there, our virtual tickets let you watch live or catch it later. Right now, when you buy one virtual ticket, you can get a second at half price. So grab one for a friend, and you can discuss it together over snacks or during a walk. All the details are in the show notes. Brian, welcome to Pantsuit Politics.
[00:01:50] Brian Rosenthal: Thanks for having me.
[00:01:51] Sarah: I have a personal question first. How the hell did you end up with the organ beat at The New York Times?
[00:01:59] Brian Rosenthal: I’m an investigative reporter which means I don’t have a specific beat normally. I just roam around and look for interesting topics that should be investigated. So I’ve done investigations on all kinds of topics. In this case, interestingly enough the idea actually came from I was attending a wedding several years ago and a friend of a friend who happened to also be attending the wedding got to talking with me and I mentioned that I was a reporter at The New York Times and they said here’s what you should look into, it is the organ transplant system. They worked at a hospital and I started looking into it and found that indeed there were a lot of important and interesting things to look into.
[00:02:48] Sarah: How many times does somebody say that to you as a New York Times reporter, though, that it doesn’t go anywhere?
[00:02:55] Brian Rosenthal: A lot.
[00:02:56] Sarah: I don’t know if you’re taking suggestions because I’ll have some for you at the end of this show.
[00:03:00] Brian Rosenthal: I will take them. And I always say tell us your ideas. Tell us what your hunch is. Like, whenever people are upset about something not being covered, I always say have you told a journalist about it? We’re not mind readers. We can’t just come up with this ourselves. People have to tell us about it.
[00:03:19] Beth: I love that. So when you say that you started to look into it, what’s that process like? I kept reading your work thinking, where do you begin with this?
[00:03:27] Brian Rosenthal: Yeah. Whenever I dive into a topic like this, the first thing I want to do is read everything that’s already been written. And obviously, I will look in The New York Times at all the stories that have been written about organ donation, organ transplant over the decades really. But then I’ll also look at other news organizations. In this case, The Washington Post had done a lot of coverage in recent years, as had ProPublica. So looking at other news organizations, and for something like this, there are a lot of scientific studies too. And so trying to read the scientific studies, the reports that have been produced by the government that’s always step one and that can take days or weeks even just to get through that. Then my next step is always just to have general conversations with people in the community, the agency, the industry, whatever it is I’m investigating, and just asking them what are the big issues, what do they think has not received enough coverage what should I be keeping in mind? That process can take weeks too.
[00:04:32] Sarah: Yeah.
[00:04:32] Brian Rosenthal: It’s a lot of time just getting up to speed.
[00:04:36] Beth: The community, the agency, the industry seems like a helpful series of words because reading about this, I kept thinking, “What? What is this system?” So can you tell us, for those of us who’ve really not done anything but check the box on our driver’s license, how you think of what this system is?
[00:04:55] Brian Rosenthal: I had no idea how it worked at all. I kind of thought that if you need a transplant, your doctor gets you on the list. That’s the one thing I thought I knew is that there’s a list. And I thought that if you’re number 1,000 on the list nationwide and tomorrow you’ll be number 999 and you just wait your turn, and there’s some overarching entity that doles this out. And it’s really not like that at all actually. When you need a transplant, you do get on a registry. But it’s not a list,. In the sense that there is no waiting list where you know when it will be your turn. What happens is that people die every day. Actually, a very small minority of them are actually able to donate their organs just physically because of the way that they die. Most people in this country thankfully die because of old age because of something that happens to them and they are not really in a place where their organs would be beneficial to other people. So you’re really thinking about tragedies, people in a car accident or people with a gunshot wound or people with drug overdose. There are more examples but for the most part. And so when that happens, if they are a registered donor or if their family authorizes because I always say you don’t have to be a registered donor to donate your organs. Even if you are not a registered donor, if you die in a way in which your organs will be suitable, they are still going to ask your family if you want to donate. Registering kind of guarantees, it means they don’t even have to talk to your family. But even if you’re not registered they will still talk to your family and ask. And so if you’re either registered or your family authorizes it, that organ then is considered available. And so it is then going to be matched. And the way that it gets matched is it is based on the region that it’s in. So every state has its own organ procurement organization that handles the organs that become available in its state. Some states have multiple but basically have multiple procurement organizations.
[00:07:10] But basically, it’s one per state, and they’re in charge of finding the best match for that organ. And you need somebody who’s actually has the same blood type, is around the same size, is around, the same type of conditions to be a match. And then it’s based on the priority. And the powers that be in the organ transplant system have decided on priority, and it actually varies based on the organ. For some organs, it is based on how long you’ve been waiting. Other organs, it actually doesn’t matter how long you’ve been waiting, it’s how sick you are. But there is an algorithm that determines the priority order, and so the organ procurement organization in that state will determine the patients that not only are a match but are the highest priority. And then there is another aspect of this-- sorry for being so long-winded with your simple question-- but once the organ procurement organization identifies the patient who is a match, who’s the highest priority, their doctor then has to accept that organ. And it turns out that doctors are very choosy.
[00:08:21] Sarah: You want a choosy doctor.
[00:08:25] Brian Rosenthal: Yes, you do. But you don’t want an overly choosy doctor. There have been studies that have found that people who have died waiting for an organ have actually been offered hundreds of organs and their doctors were too choosy. I don’t recall the exact average, so hundreds as an average might be overstated. But there are many organs offered to people who end up dying waiting because their doctor feels that it’s not a perfect match. And by the way, patients never find out about that. Once the offer is made to their doctor, if they say no the doctor doesn’t have to tell the patient. But anyway, just to finish that, the organ procurement organization offers it to the doctor for the first patient on the list. The doctor may very well say no, and then they will go to the second priority person on the list. They may say no, and it could go quite a ways down the list.
[00:09:21] Sarah: So I know the federal government started grading these organ procurement organizations, and what were they trying to fix when they did that, and what did it actually produce as far as incentives?
[00:09:36] Brian Rosenthal: Yeah, so one of the things that policymakers realized several years ago is that as a community, we are not donating as many organs as we should. And I say it like that because basically there are people who are dying in a way that would facilitate organ donation that could be tapped for their organs and we’re just not getting to them. I mentioned earlier that if you’re not registered, the organ procurement organization, OPO for short, will still talk to your family and try to get you to donate your organs. They have to actually know that you’ve died and they have to then make the effort to go talk to your family, and they have to be persuasive enough to convince your family to donate their organs. And so the government was concerned that the OPOs were not being very effective at getting people to donate their organs, essentially. And so they wanted to put pressure on the OPOs to increase the amount of organs that they were recovering and to ultimately facilitate more transplants.
[00:10:49] Sarah: Whatever could go wrong, Brian?
[00:10:53] Brian Rosenthal: Yeah. And to be fair, the policy has been, I would say, successful in many ways. The number of transplants that have taken place in the country in the last few years has gone up significantly, and some of that I think is due to some problems that I’ll talk about in a second. But another piece of that which I saw with my own eyes when I was doing this reporting, and I was going in the field tagging along with the OPOs, going into transplant surgeries, I heard from hospitals over and over again that a decade ago they never heard from the OPO, and so they had people who died whose organs were viable, but they just didn’t hear from them. And these days the OPOs are much more proactive. They are monitoring what’s going on. They have people stationed in the hospitals. They are coordinating much better with the hospitals and ultimately getting more organs. And that is great. That’s saving lives. But as you referenced, we did find in our reporting that there is also some over-aggressiveness going on from the OPOs in terms of trying to get organs from people who may not be ready to donate their organs.
[00:12:09] Sarah: They are not dead yet, Brian. Just say it. They’re not dead yet.
[00:12:13] Beth: We both live in Kentucky. So that was a chilling story for us.
[00:12:17] Sarah: We Live in Kentucky. That features prominently in your reporting.
[00:12:20] Brian Rosenthal: Yeah, I try not to try not to sensationalize things too much, but yeah there was a federal investigation that found that in Kentucky specifically there were dozens of cases of patients who were showing signs that they may have some brain activity, and the organ donation effort went forward nonetheless. And it’s pretty well documented that the OPO, which again is under pressure to increase transplants, was really driving that. Even though legally the organ donation team is not supposed to have anything to do with end-of-life care. They’re only supposed to come in after the person has already been declared dead or declared that they have no chance of recovering. Legally, they’re not supposed to be involved at all, it was documented in a federal investigation, and we found in our reporting too that these OPOs are pressuring the hospitals to try to get as many organs as they can.
[00:13:35] Beth: So you have this effort to get more organs into the system You also have this time pressure around getting those organs to patients who are waiting as quickly as possible. And it seems like the reform efforts collided with that time pressure in your reporting. Can you tell us about how what we think of as capital T and L, the list, started to mean less?
[00:14:04] Brian Rosenthal: Yeah. That’s the other piece of it is not just how they’re getting organs, but how they’re distributing them. Because as I mentioned, there is an allocation system that is in place, and it can take time. There are times when the person who recovers the organ is offering that organ out to dozens of doctors, and all the doctors say, “Eh, the donor is a little older. The donor has some test results that I’m a little concerned about. I don’t want to take the risk.” And according to the process that’s in place, you’re supposed to just call down the list and go through everybody. But what the OPOs decided is that was taking too long. And so instead of calling the doctor for the first patient, calling the doctor for the second patient, and going down the list, they said, “You know what would make this a lot easier, is if we just knew that there were some doctors out there who are really aggressive, who are always going to say yes to an organ, who for whatever reason we have a relationship with, maybe I went to medical school with them or whatever. They’re a good guy and, they’ll give me an answer quickly. They’ll probably say yes. Instead of going down the list, why don’t we just call them and say, ‘Hey you’re a good doctor. Here’s an organ that’s available. Not only should you take it for your first patient on the list, but actually with this type of an offer, you can give it to any of your patients. Any patient that’s at your hospital, feel free to take this organ.’” It’s called an open offer. And in this context of needing to do more transplants because of the pressure from the government, those open offers have just skyrocketed to the point where during our reporting we found that about 20% of the time instead of going down the list, they would skip over people and just hand it to a doctor that they had a relationship with or that they thought was aggressive.
[00:16:08] And I think it’s important to note because you mentioned the time pressure, when an organ becomes available and is taken out of somebody’s body, there is a deadline for when it can be donated. An organ is only going to stay viable for so long. And for hearts, that’s only a few hours. For kidney, they can actually keep it going for up to 48 hours now with new technology. But hearts and lungs, livers to some extent, there’s a real time pressure. And so when we did this reporting, we asked about all these open offers. That would always be cited as a reason for why they did so many of these open offers, skipping, ignoring the priority list. They would say that the organ is deteriorating, we just don’t have enough time. But we actually obtained data showing exactly when the organs were taken out of the body and when these open offers were given, and we found that the vast majority of the time, they did have time. Time was not running out. They would do these open offers in some cases before the organ had even been taken out of the body. And or it maybe was a kidney and had only been out of the body for a couple hours. And so that explanation just didn’t really hold water. It seemed that the real reason is that they were just expediting trying to get these organs placed because of the pressure from the government.
[00:17:33] Sarah: Let’s talk about incentives and the response from the government because your reporting led to a lot of people-- I am one of them because I lived in Kentucky. I was about to renew my license. I was like, “I’m not doing this. I’m not checking this box. I don’t want these organ procurement people around the corner.” Now, I told my family, “I’m happy to donate my organs should they come and talk to you.” But what did you think when all this came out and the response to the piece and people were responding this way?
[00:18:01] Brian Rosenthal: Yeah.
[00:18:02] Sarah: It had to be really intense.
[00:18:04] Brian Rosenthal: Yeah. It was really intense. And I think that my first thought and the thing I always want to emphasize is that organ donation is a beautiful gift and it does save tens of thousands of lives every year. A lot of us know people who have been saved because of that. And so we don’t want to discourage that from happening. It gives me no joy to see people reading our reporting and then removing themselves from the list. That’s not our goal at all. But at the same time, as a journalist, our job is to tell the truth about what we find. And we cannot look away from problems. And in fact, it’s doing a disservice to the donors, the recipients, the hardworking doctors in the system, everybody if we are ignoring problems. And so I think our goal has always been to spotlight problems and hopefully that will lead to positive change. Hopefully, that is what’s happening.
[00:19:16] Sarah: Yeah. Have you seen some investigations and stuff since that you’re really encouraged by? Because I think you’re right. The best thing for organ donation is to have a system people trust.
[00:19:24] Brian Rosenthal: Yeah, absolutely. And trust is not gained by shoving problems under the rug. It’s by acknowledging problems and making improvements. And by the way, the other piece of it is organ donation is such a beautiful gift and sacrifice. We owe it to the donors to make sure this process is run with integrity, and that the priority is given to people that need the organs. And so I just think that’s all just really important. As far as reform, yes, thankfully there have been reforms that have followed our work. There have been a lot of reforms that have come into place. So on the donor safety side of things, the government has put together a task force to write new rules for the organ-- the type of organ donation that we talked about when people were being pursued too early. And those safety regulations have now been drafted and they should be in place soon. The government also closed down one of the organ procurement organizations that we mentioned that had been part of these problems. They have ordered reforms at Kentucky the Kentucky OPO specifically.
[00:20:40] Sarah: Good to know.
[00:20:42] Brian Rosenthal: And so, yeah, you should have more confidence today in the Kentucky OPO than you did several months ago. They were doing things like, for example, that they have to check whether somebody is gaining consciousness every two hours when somebody is being considered for organ donation. Not a requirement before. It was just not something they had to look at. There also is a process in place where anybody involved in the organ donation any doctor, any nurse, even any family member who has concerns can pause the process and say, “Slow down. We want somebody else to take a look at this.” And so those types of reforms are coming into place on the donor safety side. On the other side, in terms of the allocation, it’s actually been even more encouraging. The biggest thing that’s happened is that the OPOs responded to our reporting by sharply curtailing how often they do this. I mentioned earlier that the OPOs were skipping the list 20% of the time when we wrote our story over a year ago now. Today that number is down to 9%.
[00:21:57] Sarah: Wow.
[00:21:57] Brian Rosenthal: And so yeah, it’s been cut in half.
[00:22:00] Sarah: Because you also reported on the, like, wealthy foreign nationals, but I want to get into, like, how they were playing a part in those lists as well.
[00:22:08] Brian Rosenthal: Sure. Yeah that’s another piece.
[00:22:10] Sarah: That’s a whole other big piece of this puzzle.
[00:22:13] Brian Rosenthal: Yeah. So but for just generally, skipping the list, it has been sharply reduced. There have been new regulations from the government that have come in about telling OPOs that they cannot do this and requiring more transparency about their offer process and when they’re making offers of organs to patients. And the most encouraging thing on that is, remember we talked about how the OPOs had said that they were doing this because they were on a clock, and that If they didn’t do this the organ was going to not be able to be used by anybody. It was going to have to be thrown out. So the really encouraging statistic is that they have sharply cut how often they skip the list, and yet there’s been no increase in organs not being used. And so that was something that was a fear, and it has not happened. So yeah, a lot of different reforms on a lot of different pieces.
[00:23:14] Beth: That’s great. Why don’t you tell us about the--
[00:23:15] Brian Rosenthal: Do you want to talk about the foreign nationals?
[00:23:17] Beth: Yes.
[00:23:18] Brian Rosenthal: Yeah. So this was another piece that we did and I think it’s right to talk about it separately because unlike the two big pieces that we did about donor safety and about skipping the waiting list, those were stories that were about the system overall nationwide that were affecting everybody. The story about foreign nationals is really a story about a few hospitals, and so it’s not as much of a systemic problem. But it is quite interesting. Basically, there are a few hospitals in the country who have figured out that a way that they can make a lot of money is by doing transplants for wealthy people coming over from other countries in need of an organ. And this is concerning to ethics experts.
[00:24:17] Sarah: Back to that institutional trust problem.
[00:24:20] Brian Rosenthal: Yeah, the big concern is we don’t have enough organs to go around. There are 100,000 people waiting for organs in the US right now. And thousands of them die without getting an organ. And so the idea that we would take this precious commodity which thousands and thousands of people desperately need, and we would give it to a wealthy person from another country coming over, who by the way, is doing nothing to support our donor pool. It’d be one thing if we had some agreement with another country that we would get their organs, and they could get our transplants, right? Or people talk about illegal immigration and whether undocumented immigrants should get organ transplants in the US. In that case, undocumented immigrants can get transplants in most parts of the US, but they also donate their organs. Because they live here. And there have been studies that have shown that they actually donate their organs at a higher rate than they get organs. So the phenomenon that I’m talking about is a much bigger ethical issue than that because the people that are getting organs are not contributing to the organ pool. And at these hospitals, these people are coming over and getting organs. And our reporting showed that compared to Americans, they get their organs faster. They are more likely to get an organ.
[00:25:49] Sarah: I don’t like this, Brian. I don’t like it. Makes me mad.
[00:25:52] Brian Rosenthal: They are also more likely to get an exception, it’s called a priority, that gives them increased ability to get an organ. And so yeah, that is taking place at several hospitals in the US.
[00:26:05] Sarah: What’s the overlap between those people and the open offer aggressive doctors? That’s what I want to know.
[00:26:10] Brian Rosenthal: Yeah.
[00:26:11] Sarah: I bet it’s pretty high.
[00:26:12] Brian Rosenthal: There were definitely cases that we found that the hospital will get an open offer and use it to give an organ to a foreign national. But I do just want to be clear, we did not find that it was an enormous number. And that for the most part, what we found was that patients that were coming over from other countries were getting some exception or some advantage to give them priority. So they actually didn’t even need the open offer because they were getting some priority already in the system.
[00:26:59] Beth: I think it’s helpful to hear about this even though it’s less widespread, just as you consider the concept of fairness around something that is such a scarce resource where the stakes are so high. Because every system is going to have an element of incentives and relationships, and the math of saving lives I can imagine being pretty difficult not to express sympathy for hospital administrators who might be making those choices. But I can see a world where I tell myself if I get this heart to this person and that gets me a new cancer wing or something, I can just see because of the layers of complexity that people trying to take care of others in the United States face, and the way in which in your reporting there is a sense when you’re talking about a horrible instance of a child who gets passed over, and at the end of it everybody goes, “Oh, it sucks. This is our system.” And you think who’s responsible for this? I appreciate that you highlighted a lot of different dimensions without giving us an easy answer to that question.
[00:28:11] Brian Rosenthal: Yeah, it would almost be easier if there was one villain to point to.
[00:28:15] Sarah: Yeah.
[00:28:16] Brian Rosenthal: Yeah.
[00:28:16] Sarah: This reporting led to a congressional inquiry, right?
[00:28:19] Brian Rosenthal: Yeah, it did.
[00:28:21] Sarah: And what were they looking at? Congress loves to find an easy villain. Surely they went on the look for one.
[00:28:26] Brian Rosenthal: So on the foreign nationals specifically, they are investigating those hospitals. They have not published their reports yet I should say. So we’ll see. In that case, I do think it’s a little clearer. We’re talking about some hospitals that have made a financial decision. In our article, we actually talked to the person who founded the international program at one of these hospitals, Montefiore in New York City. And she was very blunt with us. She said, “Hey, this is a way that we can make money.” She said they had brought in tens of millions of dollars through this. And she did make the point like other people did that, yeah, this brings in money for the hospital, and then we can do good for other people, right? Which is an argument that’s made.
[00:29:14] Sarah: It is an argument. Maybe not the strongest one.
[00:29:18] Brian Rosenthal: But yeah, there are a lot of different people involved in the process. Just generally, organ donation is unique in medicine. We don’t have another type of healthcare that is based on the gifts of other people. And so you have to respect that, but it also adds some complexity because there are the donor hospitals and the recipient hospitals and the coordinators and the regulators and all kinds of different people involved with all kinds of different incentives. And it does make it very challenging to identify the people who are doing problematic things and why they’re doing it.
[00:29:57] Beth: Do you have a sense of where this field is going? You mentioned technology prolonging the time that a kidney can be out of a body before it’s donated to someone new. Are we getting closer to being able to use animal organs or printed organs or what’s our path forward here?
[00:30:18] Brian Rosenthal: Yeah, good question. And it’s actually a question that I have studied a little less because I’ve been focused on the state of the system today. I think it is absolutely true that at some point in the future we will be able to use animal organs, use printed organs, keep organs viable for much longer. I think there’s also a lot of potential that people are excited about using AI for or other technologies to make the matching more efficient, to find better matches quickly. I think that is all going to be true. The question is how long will it take? How many people will die in the meantime? Is it something that happens this decade or this century, right? And I don’t have the answer to that. I think people in the field don’t have the answer to that either. Thankfully, I do think that it is a bit of a-- stories like the ones we wrote will probably hopefully not be written 100 years from now thankfully. But that is something to consider. The other thing to consider is I mentioned there are 100,000 people on the waiting list. There are actually many more people who need organs who have not been able to get onto the waiting list. And as you can imagine, this disproportionately affects lower income people without access to healthcare. You can’t even get onto the list. And so we are going to have the ability to have a lot more organs, but we’re also going to need a lot more organs. And the news isn’t all good on that front when we think about the actual need that exists.
[00:31:59] Sarah: What are you working on next, Brian? You going to stay on this beat? Do you want to give us a sneak peek?
[00:32:08] Brian Rosenthal: I don’t know.
[00:32:09] Sarah: Taking tips. I forgot.
[00:32:11] Brian Rosenthal: Yeah, exactly. This is the part where you share what you think I should write about.
[00:32:15] Sarah: We are both obsessed with ed tech. We hate it. There’s a lot of things happening in the public school system that deserve a spotlight for sure, particularly when it comes to the software. I think people get focused on the cell phones in schools, and they forget about the software that all the children are using every day.
[00:32:37] Brian Rosenthal: Yeah.
[00:32:38] Sarah: What about yours, Beth? What’s your tip?
[00:32:40] Beth: I was thinking exactly the same thing, the contracts for that software, the way that within one school district they might be paying for multiple licenses for that software, the way that software has become baked into curriculum standards. Teachers don’t have any choice about how to use the software, the privacy around that software. There’s a lot on my list about the software.
[00:33:01] Sarah: State Legislation requiring the software. We got his attention.
[00:33:05] Brian Rosenthal: I may need to follow up with you about that.
[00:33:07] Sarah: Yeah. He leaned forward. I think we got something.
[00:33:10] Brian Rosenthal: I don’t know how much detail to go into here, but I do think that’s interesting.
[00:33:14] Sarah: Yeah. We’re here for you, Brian.
[00:33:16] Beth: Absolutely.
[00:33:17] Brian Rosenthal: Thank you.
[00:33:17] Beth: Thank you so much for talking with us.
[00:33:20] Brian Rosenthal: Thank you. I appreciate it.
[00:33:22] Sarah: Thank you.
[00:33:37] Beth: Okay, Sarah, it’s your birthday
[00:33:39] Sarah: It’s my birthday.
[00:33:41] Beth: Because I am a 45-year-old as well, I hear 50 Cent in the background.
[00:33:45] Sarah: Yep.
[00:33:47] Beth: Tell us about your project.
[00:33:48] Sarah: Okay. So I’ve been thinking a lot about 50. I don’t like the 5s, for the record. I have a strong aversion to 25. That was my worst one. I really didn’t like 25. But 35 I was more neutral on. 45 I feel fine about, but I’m like it just feels like it’s a big deal because then you’re on the other side, and you’re getting closer to the next decade than a previous decade. Do you see what I’m saying? I
[00:34:14] Beth: I did not appreciate 45 rolling around for me. I relate to what you’re saying.
[00:34:18] Sarah: You see what I’m saying? We’re getting close to 50. So I was like I’ll just do what I always do. I’ll turn it into a project. So here’s my plan. For every year on the way to 50, I’m going to take a decade of my life. So like 45 will be zero to 10, 46, 10 to 20, 47, 20 to 30. See where I’m going here? And in that year I’m going to do something fun. So I think for zero to 10 I have this like truly-- You know how just some photos become a part of you? There’s just this picture, this moment just lives in your head, and it’s a part of your life story. I have this incredible picture from the very first slumber party I ever had at seven or eight, and I want to recreate it with my friends. And I want to go through all of my childhood memorabilia, all my stuff I have, find a way to put it all together, put it all in one place, maybe put it in a scrapbook. I have this vision of the sequel to Terms of Endearment, the name of which I can’t remember, where Shirley MacLaine gets in this closet with all her stuff and she makes a book for every year of her life, like a big pretty scrapbook.
[00:35:26] It’s the only thing I remember from that movie. But I’m going to do that for zero to 10. I haven’t decided how I’m going to put it all together, but I want to work through all the stuff I’ve got. I’ve got memorabilia and photos and stuff kind of all over the house for all these phases of my life, and I want to organize it. So I’ve kind of started. I took most of it from my closet and from this other cabinet, and I divided it into bins per 10 years. So I’ll pull out the 10-year bin from 45 to 46, and work my way through it slowly. That’s my plan.
[00:35:54] Beth: And so the goal for each decade is to choose one photo to recreate or to...
[00:36:01] Sarah: I just have a plan for zero to 10. I might do a photo. I might not. Maybe I’ll look somebody up from that time period that I haven’t talked to in a long time that was really influential.
[00:36:09] Beth: So it’s more like excavating that particular decade. Okay.
[00:36:11] Sarah: Yes. I’m excavating, I’m organizing, I’m reviewing.
[00:36:16] Beth: Okay. I’m following now.
[00:36:17] Sarah: That’s what I’m doing. That’s my plan.
[00:36:20] Beth: Okay.
[00:36:20] Sarah: I got a lot of time. I got all year for every 10 years. Because if you try to do this all at once, it’s too much and it’s overwhelming. So I figure why don’t I break it down so by the time I turn 50 I’ll have it all together.
[00:36:31] Beth: Are you going to give yourself like a deadline? By your next birthday this will be done or--
[00:36:36] Sarah: Yeah, by my next birthday I need to be done with everything from zero to 10.
[00:36:40] Beth: Zero to 10. And is there a time of year where you’re going to focus on it? Because I could see myself, like, having a good intention and letting it languish.
[00:36:48] Sarah: What I’m going to do is I’m going to pull a bin out and put it in my office. I don’t like junk in my office, so the motivation will be to clear the bin and get it out of my office. I don’t necessarily need a deadline. I think it’ll probably push me to do it when I have some time. Which I should have plenty of since I just opened a new business and we have a full-time job, and I have three kids. It’s fine. I’ll find the time. Don’t worry about it.
[00:37:08] Beth: It’s so funny that you say that because I have been thinking a lot about I have a million ideas right now.
[00:37:15] Sarah: Yes.
[00:37:15] Beth: But I also keep hearing this little voice in my head that goes, “Enough right now. You’re not...” I think there is maybe some kind of energy at this stage of life where you start to feel like you’re running out of time, and you do have a bunch of ideas, and I feel like some wise part of me keeps going, “ You got plenty. It’s okay. It’s alright.”
[00:37:35] Sarah: I don’t feel like I’m running out of time. I’m going to live to be 115 years old. I’m planning on being a supercentenarian, Beth. That’s my goal. Yeah.
[00:37:42] Beth: You’re going to make Pantsuit Politics until you’re 115.
[00:37:44] Sarah: Yeah, I did say I wanted to do it till I die. Okay, so maybe not that long.
[00:37:47] I think a good old-fashioned 90. What do you think? Do you think we could do it till we’re 90?
[00:37:51] Beth: To make Pantsuit Politics until we’re 90? No, ma’am.
[00:37:54] Sarah: Next best offer, 80. [ laughs]. Your face.
[00:38:02] Beth: Listen, if you find a spry 70-year-old who wants to jump in with you, you go for it, and I will be in the audience cheering you both on.
[00:38:13] Sarah: So that’s my plan. That’s my on my way to 50 plan. But probably we should make plans for our 50th birthday too. Just saying.
[00:38:20] Beth: That’s a good point that you make. The other thing that came to mind for me as you were saying this, when you said a photo that is your iconic photo of a time in your life, I instantly saw this photo that I’ve looked at 10 million times in one of those old books with the sticky paper where you put the actual printed photos, and it is of me sitting in Santa’s lap in kindergarten, but I didn’t know that Santa was my dad when the photo was taken. So I could just see it. I know what I’m wearing in the photo. I know how I’m sitting in the photo. That photo is seared into my memory. But what a 1981 baby’s thing, right? This time when everybody was printing the photos and putting them in the books, and you would look at them over and over. I don’t know that it’ll be like that for my kids.
[00:39:01] Sarah: Yeah, I don’t know. I print photos. I definitely have photos from our vacations and stuff out, so I hope they do. And I think I’m a little bit thinking about this through the eyes of what will they want to keep, what will be interesting to them. I want to get some of the Ancestry photos that I have so it’s not just this envelope of old people, and they’re like, “Who the hell is this? What do I care?” I’m trying to get that kind of organized as well.
[00:39:25] Beth: I look forward to seeing the book of Sarah when it’s completed. Yes. I think that’s exciting.
[00:39:28] Sarah: I’ll sell copies. Don’t worry.
[00:39:31] Beth: Happy birthday. I hope you enjoy it.
[00:39:33] Sarah: Thank you.
[00:39:33] Beth: Thank you, Brian, for spending time with us. Thanks to all of you for listening. We’ll be back with you with a new episode this Friday. Until then, have the best week available to you.
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As the partner of someone on the list... thank you for doing this episode. I have so many thoughts and so much I can share if anyone is interested <3
This was a tough listen for me. I work in kidney transplant (my opinions here are my own and not that of my employer). I am very familiar with all of this reporting, as you might imagine. I write this fully acknowledging that of course I am biased. Does this system need reform? Yes. Are many of these problems a result of government regulation that has been thrust upon organ transplant? Also yes. Have the many good actors in the transplant community been calling attention to these issues and asking for change for a long time? Very much yes.
I have been thinking all day about what to write here. I could explain the challenge of finding the right kidney for the right patient, and why one organ may be good for one patient and not another, and that unless you have done this for many years, those choices may be called into question. That the flip side of passing on a kidney for someone can be taking a kidney that doesn't end up working well, or not at all, and how hard it is to know what will happen in the future when you have to make a decision in minutes with whatever data on the donor they happen to have. And our program is held accountable for not taking enough organs, but also accountable if the organs we take do not perform well, so we have to make sure we are walking that tightrope exactly right or we end up being flagged as a center. And also most of these decisions are made at night, on weekends, during holidays, birthdays, etc. My kids have heard me talk over organ offers so many times they could probably do it themselves.
I want listeners to know that this is a flawed system with deeply caring people that are doing their best within it. I have yet to meet a transplant surgeon, physician, nurse, procurement team, etc. that wishes harm upon a recipient, donor, or donor family. Sadly, they probably exist, but I think they are infinitely more rare than you might think after hearing this reporting.
I do think that the reduction out-of-sequence offers (the "skipped" patients he refers to) is a good thing, and was needed. I do worry about people removing organ donation from their drivers licenses, and I was devastated to learn that you had done so, Sarah. I am glad you made your wishes known to your family, but unfortunately most people won't. I worry that deceased organ donation is going to continue to fall (there is already a pretty strong signal that it is happening already). I understand where the lack of trust is coming from, but there is a lot of nuance here that gets missed in a news article.
Happy Birthday, Sarah!