surgery SIG webinars. The first webinar last week, I know we had some technical issues, so there were no live attendees, but people were able to hopefully watch our recording was the introduction to sort of building a living donor program from the hepatology and surgical perspective, more of a didactic sort of lecture with questions. Today's webinar hopefully will be a little bit more fun, a little more back and forth. And now that we have an audience, hopefully more interactive questions. Discussing today sort of, you know, the case of a donor recipient and getting different perspectives on living donation from an accomplished surgeon and then a former donor and recipient. So briefly introduction, I'm David Goldberg. I'm a transplant hepatologist at the University of Miami. On my bottom at least is Dr. Ben Samstein, who is a transplant surgeon at New York Presbyterian, while Cornell, but also Columbia is, I believe, the director of their living donor program was also the first surgery fellow I interacted with as a resident at Columbia. And then we have Deb Bandaruk and Kim Shatt. Deb, I mean, you can't tell, which is always a good thing. Who is the donor and who is the recipient? Deb was the recipient. She was my patient when I was faculty at the University of Pennsylvania, and Kim was her donor. We're going to sort of discuss their case very briefly, then use it as a springboard to discuss living donation. So Deb obviously can feel free to interrupt me at any point in time. But Deb had primary sclerosing cholangitis that she had been diagnosed with for several years and ended up in 2012 having a right hepatectomy because it was a concern for an indeterminate stricture and they couldn't rule out whether or not it was cholangia carcinoma. And because of the concern, she had a right hepatectomy. Thankfully, it was not cholangia carcinoma. She then switched her care in 2016 and started to see me at the University of Pennsylvania. And during the course of, you know, the year I followed her, had multiple admissions for bacterial cholangitis. She would have bacterial cholangitis, never thankfully had to go to the intensive care unit or be on pressers, but was obviously quite sick. But despite all that, rarely had a MELD score that went above 20 and was sort of living with a MELD score in the high teens, not able to get exception points in the policy. So we discussed living donation. She'd had a friend come forward who ruled out due to anatomy. And then Kim was able to be her donor in January of 2017. So Ben, one of the things I guess, you know, is unique is that Deb had a right hepatectomy. So she only had a big left lobe. And, you know, when she was being evaluated to be a recipient, the question came up of, you know, someone's getting a living donor or their concerns about whether they've had surgery in the past, issues in terms of size and even sort of lobe specificity and sort of what your thoughts are in a case that maybe isn't sort of a straightforward, you know, virgin abdomen thing, things like that. So, well, thank you. And thank you for inviting me to participate. You know, in, and I'll let Deb and Kim talk about their experience, but I think that from a medical perspective, the story that they are sharing is one that is unfortunately too common, someone who's really impacted by their liver disease. And yet we have a treatment that is a treatment that is difficult to access. And I think it's something that we're, those of us who take care of patients with liver disease are constant and any end stage organ disease are frustrated by because, you know, transplant in many ways is unique in the aspect where we know what a good treatment would be. And yet we cannot offer it to people. I tell, say all the time, you know, being on the wait list is not a treatment that that's a pathway to getting treatment, but it itself is not a treatment. Hepatology care is a treatment and transplant are treatments. Being on the wait list is, can be very, feel very frustrating. And, you know, I think that living donation represents a really good pathway to getting the treatment that you need. And so in her case in Kim's case, you know, I'm sorry, Deb's case, you know, really so living donation has often been done in more straightforward cases but as we now have, so the first living donor liver transplant in the United States was performed in 1997. And we now have more than 25 years of experience. We're doing routinely more complex cases, i.e. people who have had previous surgery. And so I think including re-transplants when necessary. So I think that more and more programs are developing comfort with the technical kind of requirements for living donation. But certainly it's still, the goal is to offer it. I think it goal is to offer it earlier, but we should also be including people who have had previous surgery. So then I guess to that, and then we'll get to Deb and Kim. I know in the last webinar, there was, you know, sort of Dr. Humar was saying he doesn't necessarily see, you know, contraindications that there were in the past, a MELD score, acute liver failure. So from your perspective, are there really sort of any absolute contraindications for living donation for someone who obviously is a transplant candidate? Like does, can someone be too sick or anything in your mind that, you know, right off the bat would make someone not a candidate for a living donor? So the biggest issues for why someone wouldn't be a living donor relate to vasculature. So someone who, for example, has an extensive clot in their porta mesenteric circulation might be a, certainly a relative contraindication because we have to think about how to build flow into the new liver. So that's one. And then there are cases where you want to make sure in what's called status one, where someone might have strong access to a deceased donor that you have the opportunity to work up a living donor in a safe way without, you know, kind of expediting the workup so much that there's a loss of some of the safety mechanisms. So, you know, we'll, some, frequently for status ones, we, because most programs in the United States are now able to get deceased donation within 72 hours, that may be a reasonable pathway or a situation in which living donation might not be emphasized. So thank you. That's great. So Deb, you know, obviously it was several years ago, but, you know, if you can recall, you know, when we would talk and say you need a transplant, but your score's not high enough, you have to find a living, healthy person to give you part of your organ. What was that like from your perspective? Because I think as physicians, we tell people go find a living donor, but we don't, we've never sat in their shoes and what it's like to actually think about having to ask a friend or a loved one to, to have that. Well, for me, I was super lucky because I had a few people who stepped up to be donors, even though I did try to talk them out of it. I mean, it's not something you expect somebody to do for you, but I do remember thinking that I'll just wait. I'll just wait for a deceased organ because I didn't know any better. So I just would think that that would be okay, but I would never have asked anybody, nor would I have known how to ask anybody to, to do such a thing. I was open about being sick and I, everyone knew it, but the thought of actually confronting somebody and asking them, can you be a donor? I don't think I could have ever done that unless maybe I had some, I don't know, assistance on how to, how to go about doing it, but I never did have to do that. I think that highlights one of the most important aspects. And one of the most challenging for many of us is sharing our own vulnerabilities and including our, our, our sickness or weaknesses. I think for many people, they have a lot of hesitation to talk about their health, much as we might not want to talk about our incomes or, you know, kind of other challenges we're having in life. And I think one of the things that people do have to deal with when they are looking for a living donation, living donor is they have to, they have to be willing to talk about the fact that they have a need. And so even though, Deb, you didn't have to, you know, kind of ask people, you, you did what for many people is the hardest part, which is sharing your, that you were sick. And that, that can be very hard. I don't think there's any great tools, except to say that I hope in some ways in our, in our culture and in our community, there is more acceptance overall that we're all not, you know, kind of Navy SEALs ready to, you know, attack at any point, but we all have disabilities and vulnerabilities and that that makes us human and, and, and, and that we should accept that that's okay. And then if we're able to share that, then people, you know, make people will often step forward and say, I want to help in many different situations. And certainly in people who have, who are suffering from end-stage organ disease, but begins with the recipients being willing to, to share that. Cause there's no way that someone will ever step forward if, if the need is unidentified. And that's what I think this webinar is talking about that need throughout the entire country as well as individual cases. I think for Deb, obviously, you know, having had PSC and being jaundice, it was, it was hard to hide, you know, some people's diseases where they don't have that physical manifestation and people can't see it. They're not going to know, but you mentioned that they knew about living donation, but you didn't mention it. How exactly do you recall like your, you know, Kim and others, did they just look up options for transplant or how did they know that living donation was an option to even come forward? I don't know if you remember Deb or Kim, how that came about. I feel like it was presented as an option during the initial conversation of transplant, the different types of transplant. I think, I think I remember also being told that it was better to have a living donor. I think so in terms of timing. Right. And right again, I think that's obviously, you know, we were discussing, you know, with the merging data for, you know, different pump technologies for deceased donors, you know, the organ itself sort of pound for pound may not necessarily be significantly better. I think the issues are obviously getting transplanted when you're not sick and frail and decompensated. I think, you know, people with primary sclerosing, cholangitis, there is potentially that, you know, that added benefit. So, Kim, I guess, and again, I think also one of the things you bring up is that you hear about it at, you know, when at the evaluation, which is, you know, a thing for patients as well, because not all centers do living donors. And I think, you know, as a community, we need to make everyone aware of the options because every center does things differently. You may see one be seen at one center and they don't do a living donor, but you need to be aware of it. Now, Kim, though, like tell us in your words, like what it was like to be a donor, to be evaluated and like go through it. And like, did your husband, did your friends try and tell you, talk you out of it or. No, I was lucky. My family and my husband were fully supportive. I think like anytime you have someone in your life that you love, that needs help, I think everybody rallies around. The evaluation process was extensive and lengthy, and we had our friend who was worked up first, sort of went through the entire process. So, it felt in the moment, like it was taking forever. Every step required a meeting and folks on your end to evaluate and determine whether or not we could go to the next step. And that felt like it took forever, but in hindsight, truly, it was a pretty quick process. So, Ben, Oren Fix has asked the question, which was going to be my next one. I'm not sure if you could see it, but he said beyond being uncomfortable asking friends or family to consider donation, how do you counsel patients to respond when friends or family offer to be a donor? Many patients say they would not allow it, but may not consider the perspective of a loved one who could save their life. So, how do you talk to the potential recipients, Ben, about who they have a donor and they're like, I don't want them to do it? Yeah. I always think we say it's easier to give than receive. I think that's really, I don't mean to be dismissive about giving, but I think it is hard to receive a gift. It requires, and that's true whether it's money or time or an organ, it requires a willingness to talk about and accept your own vulnerability. I have several ways in which I approach this issue. One is I tell so often several scenarios where a recipient does not want a child to donate to them. And as a parent, I can tell you that you can't get the memory of your child as an infant or as a small toddler out of your head, and you can constantly view them as a child. I remember if I might share a little story, I asked one of my trainees once who was in the operating room with me doing a donor surgery. And she was at this point in her career where she had not had children, but was beginning to prepare for children. And she said to me, well, I would never let any of my children donate. And I said, well, if your parents were sick, would you donate? She said, well, of course I would. And I said, well, your parents raised a very determined and knowledgeable daughter. Wouldn't you want that for your own children? She said, well, I guess I would want my children to be determined and knowledgeable. And that's the type of children my parents raised. And I said, yes, at some point our children are not just their potential, but what they actually do. And so I encourage people to accept that their children or their loved ones are not just about what they could become. My 22-year-old daughter is not likely to become a major league baseball player anymore, despite what my wishes are. And if we had a family member who was suffering from end-stage organ disease, I would want her to be the type of person who would step forward and actually do the effort that is organ donation. Because at some point your family is not just what they say they could do, but when confronted with a situation, what will they actually do? And to allow our children to do that, or families, or cousins, or nieces, or brothers, or even parents. And so that's one thing I say to them, is allow yourself to think about your loved ones as what they actually do, not just what they say they could do if in this situation. And then the other scenario I say is I've also been in a situation where someone, I had another scenario where I was confronted with a daughter came in with her mom. And her mom had stage four breast cancer and said, no, I'm sorry. The scenario was, it was a mom with two daughters, one who had stage four breast cancer and the other who wanted to be a donor. And the mom said, well, I don't want to let her only daughter who is healthy donate. And the sister who was healthy would say, I would do anything if I could save my sister, but I cannot give an organ in stage four breast cancer. That's not a treatment. So let me help the person who I can help. And it was a very intense, because we were talking about illness within the family. It was very intense, but for the parent who was struggling with a daughter suffering from breast cancer, to suddenly see that her other daughter, her healthy daughter, wanted to use the power to cure in a way that she couldn't for cancer was a powerful anecdote and story to me about our own ability to use our bodies to cure. And so that's what I, those are stories I often tell. The softer side of Ben. So get back to Debbie, give me a sec, but Ben, one other question that comes up. So for those who don't have a ready donor, they don't have a child, a parent, and now with sort of this non-directed donation, do you give you or your center give recipients like a script of what to give or help them post it? I know when I was the medical director of living donor, I had helped develop a craft, like an email for patients to send where they wouldn't ask for help, but they would say, this is an option, but what do you do now, especially with social media from the center perspective and helping recipients find donors? Yeah. So this is a real, a really important kind of concept about thinking about what is your community. I think oftentimes people start with their immediate family. I don't have a donor because I don't have children or I don't have donor because my brother's sick. And so kind of a lot of people think very quickly about only their immediate family. And the reality is that most of us have a much more substantial communities. We might have coworkers who are lifelong friends who we think of almost like immediate family. We might have go to participate in a church or a synagogue or a mosque where we go every week or several times a week and we come in contact with the same people. And so, but they're not necessarily gonna know that you have a need unless you share that. So I think one of the things that's really important is and each community might be a little differently. There's some communities which are Facebook communities or website communities, but each community is a little bit different in terms of how they communicate. There might be a mom's group or kind of. And so it starts with sharing that I have, what I tell people is often start with just sharing that you have a disease and that the doctors have recommended a transplant. And if you start there, it usually evokes a lot of questions. Wow, what is the condition? And, oh, I heard there's a long wait list. Can you tell me a little bit about, more about what the wait is like? And that kind of can lead to information about living donation. So some of it can be connecting with your community that way and the other can be using technology like micro sites or websites to just share a little bit of your information. And usually involves if you are interested in learning more, then you can contact the center where the person is listed or getting care. And they, so at our center and many centers, we get queries all the time from potential donors asking more information. What's the evaluation like? What's the testing like? What's the surgery like? How long do I have to take off of work? You know, how can I, how do I prepare my family for this situation? Perfect segue. So Debs, I mean, for Kim. So we tell patients, oh, you can go back to work after X period of time. And oftentimes people rush back. So tell us from your perspective, what was your recovery like in terms of getting back to work? What did you do right or in retrospect? What would you tell other donors or doctors, counseling donors, what to do or not to do? I went back in four weeks. And your job just for the audience. I'm a nurse practitioner. I would, in hindsight, I should have taken longer than I did. It was a bit tricky in terms of working out the details of coverage. I had to use a little bit of vacation time upfront, which I know Dr. Goldberg will get to. Yeah, so I would say, I would counsel people going through this to take at least six weeks. I think that the policy where I'm employed now has changed in that I believe that people are covered for six weeks without question. And I think that had that been available to me at the time, I certainly would have taken advantage of that. But the flip side to that is that workup and the lead up to this transplant felt really long. And I feel like we were all collectively in a rush to get back to normal life. And we may have rushed that a little bit. So bringing it up, for those of us on the webinar to contact your local, your Congress person or Senator, because the Living Donor Protection Act is still not finalized. FMLA technically does not apply because these are not considered, these are considered elective procedures and many employers don't give paid leave at all. And I think, we were discussing earlier, Ben, the types of professions that people are who are donors and who are non-directed. And I think it is an issue. Now, why do you think that you rushed it back too far? Like physically you were tired or what was the issue? Because we tell people you can get back to work four to six weeks, but we've obviously not experienced it ourselves. Yeah, I think fatigue was a little bit, I think that your abdomen is still fully, it's still recovering, right? So I think the nature of my job is a lot of walking. I work with kids and adults. So I think it's physical in ways that I didn't anticipate. Like if had you asked me prior to going into this, I would have said that the physicality of my job was minimal but in hindsight, when you have an abdomen that's healing, it was much more than I anticipated it to be. Ben, what do you tell donors about returning to work? How much time do you tell them they need off? So I tell them that you need four to eight weeks off. And it really depends on what your job is and whether or not you can do it part-time and how important it is your absence from work. I generally tell people plan longer and if you have to go back, it's easier to tell an employer I'm ready to go back than to tell somebody I need more time. If your coworkers have not prepared for a longer absence and suddenly are asked to continue covering for you, I think that's always more challenging than when they prepared to take more time off to cover you for longer. And then, you know, are happy that you're able to return. I think that, you know, different jobs, you know, I try to tell people kind of what you just talked about. What are the parts of your job that are really modifiable? Because full recovery might take three or four months before you're a hundred percent, before you feel like before donation. So you can do some of the work. You can, you know, if you're 90 or 95% back, you might feel like you can work, but you might not be able to run a, you know, if you're typically can run three miles in, you know, 25 minutes, you're not necessarily gonna feel like you can do that type of level of exercise for months. You know, there are lots of people with really physical jobs in which the physicality cannot be, you know, they're not sitting at a desk completely. So walking, you know, being a firefighter, a policeman or a surgeon or any of those types of things, you probably can't stop 75% of the way through an operation and say, I'm tired, my belly hurts, I'm gonna stop. And so I use that example that, you know, really err on the side of length. I think what, you know, you and Kim are talking about is that many policies are set up for other types of donation. Many policies think about organ donation in terms of kidney donation, and that tends to be a recovery in two to four weeks. And so four weeks of protection for a kidney donor, most people do feel largely recovered at the end of four weeks. Now, living donation, liver donation is typically in the six to eight week. And so policies are often designed around kidney donation or even bone marrow donation and not around liver donation. And so sometimes policies actually do patients a disservice by, you know, kind of saying, well, you have four weeks off when really they needed six to eight weeks. So I know when we had our little, we met before we talk about, you know, there's that need to obviously for both on the patient side and the team side to have the donor recipient aspects separated and, you know, not always knowing where things are, the progression, but we don't obviously, you know, understand your perspective. I guess, Deb and Kim, each of you can maybe sort of tell us what you were saying on the webinar, on the Zoom we had last month about what it was like not necessarily knowing, and I guess more so really for Deb, knowing what was going on with the donor, where they were in the process and what that's like, because obviously we have to keep things separate, but, you know, we could also learn from people like you about ways we could at least maybe keep that communication open a little bit more. Yeah, that part of it was very frustrating for us because I didn't really understand that we needed to be kept separate. So Kim would go in for appointments and she would get to whatever the next stage may be, and her and I were in constant talk. I mean, she would leave an appointment and we would be talking and I would know, but I would know from her, I wasn't learning anything from the hospital. So being in the dark was sort of a letdown on a lot of the procedures, especially towards the end when basically they told Kim that she was approved, and then they sort of told her when the transplant was going to be, or asked her when she was available for the transplant, and I didn't even know that it was happening. So that was definitely a letdown. Ben, maybe you could explain sort of why that happens and sort of ways that we can maybe make it a little bit better for recipients, if possible. Yeah, it's a challenge because, I mean, we start with, we're required and it's important to give the donor the protection of their own health and privacy. So for example, if a donor decided that donation wasn't right for them, either because of a medical situation or they've just made the decision that it's not right for them and their family at this time, we have to start with privacy of the donor and not, so we have to start with the assumption that the donor doesn't want the medical team to share any information to the recipient about their own health history. You know, I've had donors, we've gone on to find cancers. The donor viewed themselves as healthy and really wasn't prepared for the reality that they might find a condition. And as we just talked about, sharing your own vulnerability can be very, very challenging. For many people with liver disease, they've had the opportunity to be sick for years and to understand their own illness. For a donor who stepped forward and said, oh, I'm ready to donate part of my organ and I'm so healthy, coming to their own illness may be very challenging. And then, donors may also find that this isn't something they're ready to do. And we have to give donors that space to interpret all the information. So I think that that is very challenging. At our own program, we basically tell the recipients that someone has come forward to start the evaluation. And then there is a period of radio silence during the evaluation process. And different donors have different capacity for getting the process done quickly. So there are times when the donor has a lot of work schedule issues that make it very difficult to take four or five days or three days off completely and go for all the tests. We also give the donors space to work out their schedule. So I think this is a challenge in terms of how we communicate to the recipients. Then once the donor's approved, it's true, we also tell the donor first. We tell the donor you've been approved and we'd like to start scheduling when would you like to do this? And then the donor says, well, the summer's better. And we might give some feedback like the recipient, I cannot guarantee the recipient can wait until the summer. I mean, now it's June, but imagine it was January. And so we communicate with the donors, but donors have their own families and issues. And so we try to be respectful of that as a kind of first and foremost is being respectful of the donor's privacy and health issues. So I agree with you that it is, people are not coming to us as a dyad, meaning two people in which the donor and recipient are like, how can we expedite this process? It is a separate process. And that leads to challenges of information where the recipient is getting the, and even in husbands and wives, partners, children in the same family, it can be challenging. And we, so I share with you that kind of like, how can we make it better? It's not a perfect process and we start from protecting the donor's information. Then I guess, as it relates to telling the recipient, how do you, because I know every center does a little differently. Do you inform the recipient's hepatologist of the status? I know oftentimes I'd have the recipient's hepatologist ask me and I wouldn't say always because of that donor protection and they may potentially tell the recipients. What do you do in terms of internal communication? So we have a, we do have a specific process. So, and our process grew out of, so we had a donor a few years, now almost a decade ago, who was approved for donation and she was informed of the approval and we told the recipient and 24 hours after she had been told that she had cleared, she changed her mind. And we had already told the recipient that the donor was cleared and we were gonna begin scheduling surgery. And fortunately, they had a very good relationship and the recipient tolerated that information quite well. He unfortunately ended up dying without a transplant and we supported the donor through that process, but that led us to change our process where we basically told the donor that they were approved and then our processes, we require the donor to sit with that information and call us back to tell us they're ready to go forward. So we, and we changed it for all donors. So we went, we used to basically, you're approved, we have our meeting on Tuesday and Wednesday we would call both parties and say, all right, we're ready to schedule. And we changed it so that Wednesday we basically tell the donors, we tell the donors and then we expect them to call us back after they've been approved, separate from that phone call and say, I'm ready to go forward, let's schedule and tell the recipient. And then, then we call the recipient, hepatologist and surgeon and say, both sides are ready to move forward. And I think that's also one thing that I think the patients don't always realize is the recipient hepatologist is treated the same way. They're disconnected. So I know oftentimes, you know, in Deb's case, because she was my patient, someone else was seeing Kim and I didn't know when they discussed Kim, I would leave the room. So I think we don't necessarily convey that to the patients as well, that it's not just you that doesn't know everything, it's the recipient doctor as well. And so one of the things that we do now is we also tell the hepatologist, we have an approved donor, the recipient is aware and are there any therapies that we need to consider? So for example, you know, if a recipient needs, you know, some sort of medical therapy or workup that hasn't been done in the, you know, a few years ago, we used to have patients who had hepatitis C and we would treat them before the donation. And that would take, you know, eight to 12 weeks of therapy before the transplant. So we had to coordinate and we intentionally, just as you said, David, left the recipient hepatologist so that the recipient hepatologist couldn't be a source of information for the recipient. We really kept those processes and continue to keep those processes separate until everything's approved. So Ben, we have another question from Oren and thank you, Oren, for asking this question. So he asked for you, Ben, so do you have a minimum MELD to consider living donation and how do you convey to referring providers about the appropriate timing to refer potential living donor patients? And then if they're referring someone, you know, with a very low MELD, a MELD of six, and, you know, living donors likely their only option, do you require that they come in with a donor or because of non-directed donation? Like how does that work in terms of communicating to referring providers? Yeah, so that's a great question. So the short answer is we have no MELD requirement. I mean, you know, what I talk to every patient about is what is the risk and benefit of transplant? You know, do you have evidence of decompensate, you know, if liver disease, for example, as opposed to cancer is driving you towards transplant, you know, but other patients, for example, many patients with PSC have a very low MELD score in between infections and concerns about cholangiocarcinoma is a perfect example of where their score is not just about how sick their liver is, but how it's impacting their life. I mean, Deb had to have surgery. She had a right hypotectomy. She had multiple infections. I mean, Deb, you can tell us, but it sounds like those are things that really impacted the quality of your life. So we don't go simply by, the way I think about it, David, is that MELD is a system for allocating deceased donor organs. It's not a system designed to determine the quality of your life or your indication for transplant. And when we use it inappropriately like that, we disadvantage patients. We came up with a system that is for allocation. So patients who have high volume ascites, patients who have pleuritis, patients who have encephalopathy, none of those things are measured in the MELD score. And they really impact patient quality of life. Concerns about cancer really impact patient's quality of life, but they're not in the MELD score because we couldn't figure out a way to standardize it across centers. And so I really de-emphasize MELD as a tool for determining who's an appropriate candidate for transplant. Each patient really has their own, a patient who has encephalopathy, who is a teacher and has fatigue, may be unable to function in the way that they want. The quality of their life is not interpreted in the MELD score. So I really de-emphasize MELD. In terms of, so therefore what follows from that is we certainly don't require a certain MELD or a donor. A part of our job as physicians is to educate patients in their way to accessing and risk-benefit ratio. So if your MELD isn't high, let's say your MELD is 10, but you have encephalopathy or ascites, you might derive a great deal of benefit in terms of quality of life and life expectancy from liver transplant, even if your insurance company doesn't think so. Right, so a link is being posted in the chat. Runners World did a story on Devin Kim who became running partners after. But in the article, Deb, you actually said about Kim, for somebody to say, I'm going to randomly give you a piece of my liver and have a huge scar, it's a lot. So Kim, as a donor, did that concern you at all, having a big scar on you? And then maybe Ben can talk to talk about what they do with laparoscopic because having seen Ben's handiwork and donors, they don't have necessarily that big scar. Was that, it's not a vain thing concerning to you at all? I can't say that it was, it really wasn't a concern for me. I should probably add an asterisk that I have five brothers, so scars are reviewed a little bit differently growing up in my house. Yeah, it wasn't, I was more concerned about, obviously, Deb's life at that point. Did it affect your running? Did your times get slower forever? No, it did not, it did not affect it. I mean, that's a question a lot of people have is, are there going to be any long-term consequences? The scars can sometimes, if someone was a runner and that was something that they, was really important to their self-identity, running whatever time that they do, you know, that can be a concern and getting back to that can take time. And so, you know, I think it's an important question that a lot of people have. You know, today in our society, physicality is something that a lot of people use as their kind of self-identity. You know, we have, you know, also donors who lift heavy weights and they're, you know, males who, or women who really, you know, their ability to lift certain weights are the way in which they self-identify as one of their strengths. So we talk about that. Now, Ben, so speaking of scars, so laparoscopic, are all of the donors you do laparoscopic? How do you, if not, how do you decide sort of what are the benefits? Yeah. So I'll just talk about a kind of the standard operations for liver donors, what is done throughout the United States. And then we can talk a little bit about, you know, kind of some center variations. So the most common operation is probably what's called a reverse L or a J incision in which the incision comes down and then veers to the right. Okay. So the J or reverse L. This is the liver sits under our ribs. Really, we think of it being in the abdomen, but really where the liver sits is most of it is under our ribs with only a small portion coming out into what I consider the abdomen. And so those are the kind of most common incision. That's the most common incision. For some programs, we'll use a longer midline incision to go from the breastbone down past the belly button, typically used for left lobes or the left side of the abdomen. And so that's kind of from the breastbone down to the belly button and sometimes extended a little bit further. That's another common incision. And then a transplant incision can be also used for donors. And that can be an incision across the belly and up and down or across the ribs. We also use, so at our program, we use a laparoscopic incision. So we basically make five small incisions the size of the tip of my finger. And in the upper abdomen and the liver, we also have to make an incision to take it out, but we do it usually in a C-section area just above the pubis. And basically what I would call either a bikini line or a C-section incision. And it has to be big enough to get the portion of liver out because we have to sew it into the recipient, but we do that for about 80% of our donors. Okay. So again, Deb and Kim, please feel free to come in. But I guess, Kim, you obviously were donating to a friend. I'm just curious what your perspective, we're now doing what we call non-related living donation or non-directed donation. Is this something you could have ever thought about doing, just giving to a friend? Is this something you could have ever thought about doing, just knowing what you went through to a random person? I can't imagine it, to be honest with you. It's in the media and the news a lot more now, non-directed donation. And I think about that often. And for me, I was obviously driven to give to someone I love. I think that doing that same act for someone that you don't know is an entirely different, it's another level. Can you talk a little bit, can I ask a question? Yeah, of course. So Deb and Kim, might you describe your relationship after donation? Did it, were there any awkward times or did it just get stronger? Or how did you guys, you know, Deb, how did you feel about the donation and your relationship with Kim? If Kim was like, I don't know if she was your best friend or she was your second best friend and then she became your best friend, you know, like how did that change after donation? And what was it like for you both, you know, because that can be, you know, what I often tell people is that a lot of times people were prepared for the emotion, excuse me, the surgical pain, but it was the emotions about the donation that on both sides that they sometimes feel they weren't fully prepared for. For me, I definitely told her on numerous occasions that she did not need to do this, that I wanted her to actually not do it because I couldn't, I just couldn't wrap my mind around the whole, what she was doing for me and like, how do you repay somebody for that? How do you repay somebody for saving your life? Like I literally would not be here without her. So that in the beginning was super hard for me. I find it much easier now because we are so close. She's definitely up here now in the friendship circle. She's not at the bottom anymore. No, but we've become sisters. Our families are all family. Like her mom is my mom, her brothers are my brothers. It's just, it's how we think now, absolutely. So it's definitely brought us closer. And I, yeah, I still get choked up thinking about it. And I'm thinking about her doing this for me and how, you know, you still, I'll still never stop thinking how can I ever pay her for this? So, yeah. So Kim, how can she bring the ladies to tears? She's like, well, all right. She's making me run a marathon this year. Yes, she's making me run a marathon. That's how I'm repaying. Well, speaking of repaying though, Ben, so the question in the chat. So obviously, you know, not all places do, you know, the non-directed donation and just, you know, people always, I will say hit the term, you know, when people say altruistic, because everyone is altruistic if you're being a donor. But for non-directed donors, how do you keep the donor recipient separate? And the question was, how do you prevent or ensure that there's no sort of covert, you know, money under the table? Yeah, so that's a good question. I mean, you know, basically we do a couple of different things. One is we directly ask that question of both the donor and the recipient, but really focusing on the donor. Is there, are you receiving financial gain? We tell people, we emphasize that it is federal law that you cannot buy or sell organs and that it is prosecutable by five years of time. So it's a serious, you know, it's something we, I think all living donor programs take seriously. So we start with that and then we, you know, investigate and talk to the donors about what is their motivation? If their motivation's about, you know, is it their own internal process? I want to give because, you know, we accept a lot of volunteerism in the United States. I think volunteerism is part of our culture and our society. And I think for many doctors and many people, they struggle with the idea of American volunteerism. So, you know, 77% of the firefighters in the United States are volunteer firefighters. That is how we staff fire departments in the United States. We have auxiliary policemen. We have our entire armed forces are as a voluntary process. We have 1.4 million people who serve in the American armed forces. Almost all, actually all of them are volunteers. So American volunteerism is part of our culture and we don't, and so I think it's okay to accept volunteerism. So I start with that idea. And if you look at non-directed donation in how it started in most programs is that, and just again, taking back, so going back to, so running a marathon. The first time, you know, somebody said to me, oh, you know, you could run a marathon. I thought, oh, you're crazy. You know, and if you ask a lot of people about whether it's donating an organ or running a marathon, they all think anybody who would do that to themselves is crazy. But the reality is, as both Kim and Deb know, long distance running, improving what your body can do is incredibly empowering. And people feel empowered by the gift of using their body to save somebody else. So I think culturally, we as physicians need to get away from the idea that donors are, that this is predominantly, you know, something we need to worry about. We need to ensure donor safety, but we also need to help facilitate people who are empowered to help other people. So Ben, a question- I'm sure there was another question, but I'll just- The question was asked about living, so following living donors. So I know UNOS regulatory says you have to follow them at six, 12, and 24 months. I know we would re-image all donors at three months. Do you re-image all donors post donation? And how long do you follow them? And I guess, along with that, given that the recipient's insurance doesn't pay for those follow-ups necessarily, does your center cover them or do you require the donors have health insurance? So several questions in there. Right, so- Imaging, how long do you follow them, and then insurance? So we follow donors at two weeks, four weeks, six weeks, three months, six months, one year, and then annually for five years. That's our program policy. Our program pays for anything not covered by the recipient's insurance. We basically require all donors to have health insurance because we fundamentally believe that it's important that they have access to coverage for things that we might find during their workup. We do imaging at three months and then at one year, but we almost never find anything at one year that we would react to. Livers regenerate quite quickly. Even if you're donating 69% of your liver, so you're left with 31% of your liver, on average at three months, your liver has more than doubled in size and often tripled in size. And by a year, your liver is on average back to 95% of what you had before donation. And just like with Deb and Kim, you couldn't tell who was the donor and who was the recipient, but I suspect you couldn't tell much from looking at their MRIs, who was the donor and who was the recipient. They would both have normal sized livers. I think the insurance thing comes up and I think it's part of the reason why, again, Ben and I both believe healthcare is a right and not a privilege, but it is obviously an issue in states without necessarily Medicaid expansion or things like that, because we do find things in donors and that could affect insurance and whatnot. That's why we do require them because even if the recipient's insurance covers the initial workup, if you then find some condition, it doesn't cover it anymore, which is why we do require that. Like I said, we've had donors in whom we've found cancers and now we've put them, everybody in a kind of a difficult spot if the donor didn't have insurance, where we now have diagnosed the cancer and yet, so they're no longer eligible to be a donor. And yet if they didn't have insurance, they wouldn't be able to necessarily have treatment. And so it's part of our process. So when you get back, just, I was looking back to some old slides I had from a talk I gave. So Kim's liver before donation was estimated volume was 1,696 and post donation at three months, we went to three months. Kim's, I guess, liver that regrew was 1,295 and Deb's was 1,261. So Kim had the slightly bigger liver. But now I guess, so Kim, you're now six years out. Do you feel anything? People ask about long-term and I think it's different in kidneys where kidney donors have one kidney the rest of your life. How do you feel now a year out or six years out? Yeah, I feel great. I don't have any, never really had any complications or side effects from the donation at all. So I did get a message. So the witching hour is up. You know, we wanna thank everyone. I don't know if you have any final thoughts, Deb, Kim or Ben. I mean, I think this is fantastic. This is obviously available on, it'll be on the website, but any final thoughts sort of for anyone thinking about living donation or being a living donor? Yeah. If not, that's fine. Everybody should look into it. Be aware of it. I also think, you know, really there's a lot there's a lot of the American Liver Foundation, UNOS, as well as your local transplant center can provide you with more information. It's important to reach out to a variety of different sources. There is a living donor on the AST. There's also information on the American Society of Transplantation did a entire handbook for donors to find out more information about being a living donor. So that's a good source. Okay. Well, thank you everyone. This was fantastic. Thank you, Ben, for taking time. Thank you, Deb and Kim, for all you do. Thank you, David. Enjoy. All right. Okay.

liver transplant

living donor liver transplantation

evaluation process

recovery period

physical activities

emotions

MELD score requirement

non-directed donation

post-donation follow-up

health insurance