Interview: How do kidney transplants work? | Alexander H. Toledo

0:01This is TED Health, a podcast from the TED Audio Collective, and I'm your host Dr. Shoshana Ungerleider. As a physician, I've seen patients whose lives were completely transformed by an organ transplant. For example, a kidney transplant can help people move past needing exhausting dialysis sessions to getting a second chance at living fully. But I've also seen the other side. Patients waiting, hoping, and sometimes running out of time because there simply aren't enough donor organs. Organ transplants are one of the greatest medical success stories, but the need far outweighs the supply. So how did we get here and what can we do about it?

0:47In this TED-Ed lesson, educator Alexander H. Toledo takes us inside the world of organ transplantation, from early experiments to cutting-edge innovations that could change the future of medicine. And then stick around after the talk for my conversation with heart transplant recipient, Leilani Graham. But before we dive in, a quick break to hear from our sponsors.

1:19And now, your TED-Ed lesson of the day. In the 1930s, doctors began experimenting with a procedure long thought to be medically impossible, an organ transplant. Many pioneering surgeons focused on the kidney, taking a healthy one from a living or recently deceased person and transplanting it into a patient dying from kidney failure. But these early surgeries faced a major problem. Patients' immune systems would quickly recognize the new kidney as a foreign object and start to destroy it. Few patients survived past the first few days. Then, in 1954, Joseph Murray attempted a type of kidney swap that no doctor had tried before.

2:04The surgery was a success, and the patient would go on to live the next 8 years with the transplanted organ thanks to one key factor. It came from his identical twin. 70 years later, upwards of 100 ,000 kidneys are transplanted annually in the U.S. alone. So how does this surgery work today? Kidneys are true workhorses. These fist-sized organs filter the equivalent of an entire bathtub's worth of blood each day. In addition to removing this waste and extra fluid through urine, the kidneys also regulate the production of red blood cells, vitamin D, and other hormones. Certain medical conditions can prompt the kidneys to work overtime, leading to gradual deterioration.

2:53For example, in diabetes, higher blood sugar concentrations can trigger increased kidney filtration, swelling, and inflammation. High blood pressure can constrict and damage the organ's delicate blood vessels. Over time, people can lose complete function of their kidneys and must rely on a treatment called dialysis to survive. Yet dialysis is time-consuming and fraught with serious medical complications. A kidney transplant offers a more permanent solution, with a dramatically improved quality of life. Once a patient is approved for the surgery, the search for a suitable organ begins. Historically, the biggest barrier was finding a donor whose immune system makeup closely resembled that of the patient's, like an identical twin, as to reduce the risk of organ rejection.

3:44But today, thanks to medical advances, a patient's family member, friend, or even a stranger can donate one of their kidneys. New drug therapies can effectively suppress a patient's immune response before and long after the transplant, meaning that patients and donor pairs no longer must be perfect matches. Still, the closer the match, the better. So another option is a paired organ exchange, where two or more incompatible donor and patient pairs are matched up, allowing each patient to receive a more compatible kidney from the other pair. Once an organ is found, the surgery itself is straightforward.

4:25First, the living donor's kidney is removed using minimally invasive and often robotic techniques. As for the transplant patient, an incision is made in their lower abdomen and the donor organ is implanted. The new kidney's artery and vein are connected to the recipients to create blood flow, and its ureter is attached to the patient's bladder. The failed kidneys are typically left in place, allowing them to continue to aid in filtration. After surgery, a patient is closely monitored for the next several days to ensure the new kidney starts filtering their blood and subsequently producing urine on its own.

5:04This new kidney typically lasts between 12 to 20 years. Some people will have multiple kidney transplants in their lifetime, meaning at some point they may have 4 or even 5 kidneys in their bodies. As for donors, most leave the hospital the next day and can resume normal activity within a few weeks. While all surgeries carry risks, most donors go on to lead normal, healthy lives, facing no or relatively few complications related to living with a single kidney. But not all patients will have a willing, living donor. In the U.S. alone, around 90 ,000 patients sit on the national waiting list to be matched with a kidney from a deceased donor.

5:46While many people register as organ donors, only 0.3 % will lose their lives in circumstances that allow for organ donation. Due to this organ shortage, about 17 patients die every day waiting for a new kidney. Thankfully, doctors continue to push against the limits of what's possible, exploring new treatments and the potential of lab-grown, 3D-printed, and even artificial kidneys.

6:17That was Alexander H. Toledo for TED-Ed. Leilani Graham is a writer and a healthcare consultant based in California. She's survived four cardiac arrests and then a heart transplant. And this journey has shaped her perspective on life and healthcare. Leilani's used her experiences to educate and advocate for people facing similar struggles. Her personal trials inspired her unique approach to improving the healthcare system, particularly in the realm of organ transplantation. Leilani's consulting work includes organizations like Medtronic, Verily Life Sciences, and the American Heart Association, and she's now pursuing further training as a child life specialist at the University of California, San Francisco, as well as a master's in practical ethics at Oxford University.

7:06Leilani, thank you so much for joining me today. Happy to be here. So can you take us back to when you first learned that you needed a heart transplant? And what were those early conversations like? Yeah, so those early conversations were definitely difficult. I had been living with heart disease for 10 years, and I really just expected to live with it for the rest of my life. To then be told that I was dying and needed another heart to live, it took a long time to sink in, honestly. And it wasn't until, you know, far after the surgery until I actually held my own heart in my hands after the transplant.

7:43That's when it really sunk in. Oh my goodness. And how old were you at this point? I was 23 when I was told I needed the transplant and I was 24 when I had it. Wow. So you get the call that a donor heart's available emotionally. How does someone prepare for that kind of surgery? Yeah, it definitely requires a certain amount of coordination. Logistically, for me, it was a bit of a problem because we were about three hours away from the hospital. I was lucky enough to be able to wait outpatient. I was healthy enough for that. But my dad was literally tending a bonfire that day. So we had to put out the fire first up in the Sierras and then just drive.

8:23And all I can really remember is the sun was going down over the valley as we made our way back to the Bay Area. And all I could really think about was just getting there, just going to the hospital. Wow. So you've described the transplant as not the miracle maybe that you expected. What were some of the hardest aspects of the recovery and the whole experience that surprised you the most? I would say the two hardest parts about recovery were probably the physical complications and the lack of preparedness. The relevant cardiac teams didn't really do enough to teach me about all the things that would be coming out of my body following the transplant.

9:02I mean, at one point or another, I had nine chest tubes, two ECMO cannulas, a high flow nasal cannula, SWAN GANS, all these different IV lines. And I felt like a science experiment or a voodoo doll. And everyone was telling me, like, don't move. Just whatever you do, don't move. I think it was unfortunate because before the transplant, I'd been hearing only, you know, I would feel so much better afterwards. It would be different to have a heart that was working properly. But because of all the complications and partly because of the selection of the heart, I had to learn to walk again, to use my lungs again, to swallow safely.

9:40I just, because I experienced unexpected graft failure, which is when the heart doesn't work immediately after it's put in. And I required life support. Being on ECMO, it wasn't something that was anticipated, but it's also definitely not without precedent in heart transplant. So I feel like even if all those physical complications were to happen again, if I had been more adequately prepared for those possibilities, for how I would look and physically feel afterward, I think I could have mitigated some significant trauma. Wow. I didn't realize that you had so many complications after surgery. Tell us what ECMO is and what it's like to have that happening.

10:23Essentially, it's sort of like a heart-lung bypass, but bedside. It is oxygenating your blood for you. So kind of the quirky things are you don't have a pulse on it because it's essentially working for you. It's pretty terrifying to be on it and to be conscious because you are having this machine essentially do your essential life functions and you need to lie very still. at least the way it was cannulated for me. It regulates your temperature, everything. It felt like I was incredibly reliant on this thing keeping me alive. Well, you were, right? Yeah, absolutely. And for how long were you on this life support?

11:02I was on it for about a day when they realized that it wasn't hooked up properly and I was bleeding internally. So then I needed to go back in for another open heart and was on it for a total of 10 days. and so it took days weeks maybe even months for you to learn how to walk again and get life back I think many people assume that life after transplant is just a return to normal what did normal look like then and what does it look like for you now yeah I'm so glad you asked that because there's so much awareness about donating organs but there's not much discussed about life after a transplant.

11:42My normal then included probably close to 40 pills a day. Now I'm on closer to 25, which is still quite a lot for someone in their early 30s. Unfortunately, one of the complications of the anti-rejection medicines is that I have a heightened risk of cancer and infection and overall just a likely shortened lifespan. Now I can already hear some of the people saying like, but you lived, you were lucky enough to get an organ. I think both things can be true because that is life. You can have the good and the bad. The good is that for many years now, I haven't been worrying if I can make it up a hill or a flight of stairs.

12:18I can go to workout classes for the first time in my life. I now live in San Francisco, which is a very hilly city. You know, I got to live long enough to meet my nephews and pursue a graduate degree. I mean, it's life. It just comes with a certain amount of extra responsibility. I think it's really beautiful and incredible how you frame this idea about living and taking the good with the bad, because I think that's true for all of us, right? When it comes to physical and mental health, how do you think medical teams can do a better job of what we call patient-centered recovery? I really wish I'd been able to talk with more transplant patients, particularly young ones.

13:01I mean, there's so few of us, right? I kept asking my teams for this, but I do think that HIPAA kind of creates a lot of barriers for clinicians to connect us. And post-transplant, fortunately, I found an incredible camaraderie with people on Instagram. And I now am part of several social media groups of young people who've had transplants and share notes, lift each other up, support each other when we're hospitalized. And so I think if I had learned more about what the process would look like afterwards, I would have felt more like a partner in my care. A lot of that care is very regimented immediately post-transplant, and it sort of felt like I was a participant being shunted between appointments and tests, and it wasn't really about me, Leilani, the person.

13:44I also think that therapy and consults with the psychology and the palliative care team should be inherent to the process. In my case, it felt like the medical teams would wait until I was already feeling anxiety or having ICU delirium, and that's when they would consult. Those relationships could have been established during the listing process, even before the transplant, so that we could establish some rapport. Then I would know what signs of distress to look out for, because the repeated theme in the hospital was that it felt like, okay, there's a possibility some chaotic thing might happen, but we're always going to triage it instead of try to do a little more prevention.

14:21And isn't that sort of how healthcare is in general, right? Like we really should be doing so much more to prevent as opposed to just reacting. And so following up on that, you've talked about the need for patient-centered goal setting. Can you give an example of how this would have helped you post-transplant? I had very severe steroid-induced diabetes. And I kept being told by both the endocrine teams and the transplant teams, Neither of those things is really going to go away until the steroids come off. And I discussed with my teams after the fact that we could have mitigated this with a dose calculated to my size instead of what is common standard dosage in transplant, no matter how big you are, what your BMI is, or what your normal levels of cortisol is in your body.

15:07And we could have also ramped down the titration schedule faster. It proved to be really overly toxic to my body in a lot of ways. I kept getting the line of like, well, it saved your life. And it's like, well, but it's caused all these other steroid-related diseases too. Even today, clinical trials are suggesting that prednisone therapy can be significantly reduced in patients with strong antibody matches. I'm not a doctor myself, but I do feel like bringing some of that to the table and having those personalized medicine, patient-centric conversations, improve rapport, improve compliance, which is sort of a dirty word in healthcare for patients, but really just make it so that we're bought into our own care.

15:48Yeah. And I mean, talking about quality of life is so important. It's one thing to just say, okay, now you have more years of life to live, but like, what will that life be like? What is it like for you is so important. Absolutely. And so you're currently training to be a child life specialist, one of my favorite fields. Tell us what this is and how your own medical experiences maybe inspired you to go into this field. So in short, a child life specialist is kind of like a teacher in the hospital. We often introduce ourselves saying we're here to educate children, siblings, and even parents on what might be unfamiliar.

16:27Our goal is to try to make the hospital environment as comfortable and healing as possible. So that might involve preparing a child for a procedure by using developmentally appropriate language or developing a coping plan for a child who's afraid of needles. It can often involve memory making or legacy building for children who might be at the end of life. The spectrum is very large. I chose to go into the field because I had all this firsthand experiential knowledge that was just sitting inside me. It was emotionally powerful. It was meaningful. But it wasn't something I could just casually bring up with friends at drinks.

17:04It felt like, okay, I have all this knowledge and I want to make it useful. I loved working with kids and I felt like I could really make a difference in how they process their hospital experience, particularly because I myself felt underprepared. Maybe I can help patients and families to feel more prepared for what they're about to go through. And what a gift that you have decided to pursue this. I think it's going to change so many lives. One is that I wish we had this for adults. Oh, 100%. Yes. So I'm grateful that you're doing this. I want to come back to organ donation. We know it's life-saving and an emotionally complex topic for people.

17:47How has your personal experience with transplantation and medical trauma shaped your approach to conversations with people who may not fully understand the process? That is a great question because it's something that I admittedly struggle with. I had a really rough experience, but in telling my story, I never want to dissuade someone from becoming or staying a committed organ donor. Of those who want to be donors, a very small percentage actually might meet that criteria at the time of their death. So in other words, we have too few people signed up to donate in general, and too few of those who do sign up can eventually be organ donors.

18:29So it's really important to me to impress upon people that I still feel fully supportive of organ donation. But like I said, in my case, there were liberties taken that I didn't consent to. So that's part of the trauma that I will lifelong be working through. So when someone asks me if I'm finally living the life I dreamed of, or am I just so grateful to be here? I sometimes struggle with the fact that I can't give them the overjoyed response that they're expecting. What systemic changes do you think are most urgently needed in the organ transplant world and around patient care? There's a lot of change that's needed in the organ transplant world.

19:06There are those who posit that the organ shortage is not nearly as dire as it seems, but just that useful organs go wasted because of the non-patient-centric priorities of both the organ procurement organizations and the hospitals. There's a lot of surgical incentives that don't necessarily match with doing what's right for each individual patient. Others suggest that the newer systems and the newer listing symptoms, particularly for hearts, because that's what I'm most familiar with, do encourage the bad word in transplant, which is gaming of the system to artificially inflate someone's place on the list by doing more interventions than they necessarily need.

19:45There was a recent New York Times article that didn't necessarily cover enough of the just allocation issues, but was talking about people skipping the line. So I think, you know, there's a great threat to maintaining people's trust in organ donation. You know, with the current administration, I very much worry about how public health continues to be threatened as well. No clear answer from me on that one, but there are a lot of things that need change. Yeah. Leilani, what would you say to someone who's hesitant about registering as an organ donor? Well, I think that the saying goes that without the organ donor, there is no story.

20:23And that is absolutely true across the board. I mean, even for me with all the physical complications, the emotional turmoil that I experienced, neither the bad nor the good would be possible without the transplant. And I encourage everyone to be an organ donor because, A, I know firsthand that medical professionals will do everything they can to save your life first. That is one of the biggest myths in organ donation. and so I want to you know to tackle that right off the bat but B you know if they cannot for some reason save your life and you meet the criteria to be a donor you're going to be able to save a lot of other people and improve the lives of a lot of others as well so it really is you know the gift of life there is no better way to put that and I think a lot of families that I've talked to post-transplant donor families have said that it's given the loss of their loved one and meaning that they get to live on in somebody else.

21:17That's beautiful. So if you could leave our audience with one piece of advice about health or maybe advocating for yourself in medical settings, what would that be? You know, you know your body better than anyone else. And if something is wrong, just don't stop pushing for a diagnosis. You know, I've seen people go years and years without a specific medical condition listed. And so you might encounter that disbelief or the gaslighting or the misdiagnosis. But really the crucial thing to hang on to is that you're trying to advocate for a better quality of life at the end of the day. And so sometimes, you know, in the U.S.

21:53health system, that does require a true diagnosis to get insurance for that treatment. And it always does help to bring in your own documentation, whether that's showing a timeline of how your illness has progressed, research that you've found as to what makes you think it's something specific and even anecdotes of friends who have been through a similar process. I mean, find your community first. That's absolutely helpful. But in the face of the unknown, I would say you can always advocate to make any situation more comfortable or easier to cope with and frankly, just more human. Such good advice.

22:31Thank you, Leilani. I am so grateful to you for all the work that you're doing and for being willing to share so much of yourself and your story with the public to just help other people. It's incredible. Well, my pleasure. Thank you so much for having me on. It's totally an honor. And that's it for today's episode. Thank you so much for listening. TED Health is part of the TED Audio Collective. This episode was produced by me, Dr. Shoshana Ungerleiter, and Jess Shane, edited by Alejandra Salazar, and fact-checked by Vanessa Garcia-Woodworth. Special thanks to Maria Lages, Farrah Degrunge, Daniela Balareso, Constanza Gallardo, Tansika Sang-Marnivong, and Roxanne Hilash.

23:15If you enjoyed today's episode, rate and review the show on your favorite platform. It helps other people to find us. And I'd really love to hear your feedback. Send me a message on Instagram at ShoshanaMD.