Disability and Progress-October 10, 2024-Organ Transplants

[00:00:00] Speaker A: KPI. [00:00:58] Speaker B: And greetings and thank you for joining disability and progress, where we bring you insights into ideas about and discussions on disability topics. If you want to be a part of our email list, you can email [email protected]. that's disabilityandprogressamjasmin.com dot. Charlene Dahl is my pr research person. Hello, Charlene. [00:01:21] Speaker A: Good evening, everyone in this beautiful fall day. [00:01:25] Speaker B: Hey, you're dating us. And Erin is my podcaster. And thank you, Erin. And tonight we are speaking with, we're talking about organ transplants. And we're speaking with Doctor Humphrey, Bill. Good evening. Doctor Humphrey Bill. [00:01:44] Speaker A: Good evening. Thank you so much for having me. [00:01:46] Speaker B: Doctor Humphrey Ville is an associate professor at the University of Minnesota Medical School and she's also an organ transplant surgeon with M Health Fairview. Excellent. So I was really excited to do this show because I am such a strong believer in blood donation and organ donation and things like that. Some of the, sometimes when I'm talking in groups about stuff, I think people get sick of hearing that from me. But I just feel like I personally have benefited from, you know, donations of things, and so many people have donated or have benefited from it and they probably don't even realize it. And I just feel like if nobody did it, where would we be? So I'm so glad that you are giving us your time to be on here. So can you just start out by talking a little bit about what organ donation is and why it's so important? [00:02:50] Speaker A: Yeah. So I'm so excited to speak with you about this. I am very passionate about organ donation and just helping people through this way. And it's just such a life changing experience for so many people and so many of my patients. So, I mean, organ donation in the broadest sense is when somebody decides to donate one of their organs to someone that has organ failure. So that may be whether they passed away or whether they are still living. And if some of your listeners don't know, you can donate organs when you are alive as well. And so that in the broadest sense of the term, that's exactly what organ donation is. [00:03:39] Speaker B: So, yeah, and I know there's organs that you can donate when you're deceased and there's organs you can donate when you're alive. So could you kind of go through the different organs that you can donate when you're alive so people can realize that, hey, this person was generous enough to donate this. [00:04:04] Speaker A: Yeah. So the most common organ right now that people donate when they're still alive is a kidney. It's very normal to live a normal life with one kidney after donating, after being found to be a suitable donor, obviously. And people go on to live normal lives and normal lifespans. So that's the most common and probably the easiest organ to donate as of now. But people also donate half their liver as well for people that are in liver failure. And the. The really cool thing about donating your liver is it's kind of like, you know, when you cut a lizard's tail. [00:04:47] Speaker B: Off, it goes big, grows back. [00:04:48] Speaker A: Right. So the liver actually regenerates itself and grows back, and so the donor will end up with a completely whole liver after it regenerates. That is so cool, isn't it? Yeah. I gave a talk to a yemenite, a couple of an earth science class, and, you know, I got to the part where people donate liver and it grows back, and that just set off a flurry of questions, and they were just floored by it. It was. It was pretty cool to see their excitement. [00:05:22] Speaker B: Right. [00:05:23] Speaker A: But so those are the two most common things to donate, especially in the abdominal cavity. At the University of Minnesota, we dabbled a little bit in living donor pancreas transplant as well. Oh, so that's a little bit more controversial. Controversial, but has been done. Single lung donation has been done as well. So a person donating a single lung to another person. [00:05:49] Speaker B: So I want to stop you there real quick, because how well can somebody live on one lung? [00:05:55] Speaker A: Yeah, it's not my area of expertise. So my transplant expertise is below the diaphragm in the abdominal cavity. But given the appropriate selection process and just selecting out the right patients for it, donors in general live a normal life. We are very, very careful with who we take organs out of, no matter what organ we're talking about. And we, to the best of our ability, ensure that those donors will have a normal life and won't be impacted by donating that organ. [00:06:32] Speaker B: Who's eligible to donate? [00:06:34] Speaker A: Oh, so glad you asked that, because most of the time, people have preconceived notions and misconceptions about who can donate and what kind of health problems they can have and still be able to donate. And even other physicians have just preconceived and, quite honestly, incorrect information about who can donate and what constitutes an appropriate donor. I always like telling people that people of all ages and all medical histories should consider being a deceased donor. So that means, you know, signing on the. When they get their license to be a donor. Because even if you're not an organ, donor. You can be a tissue donor. Cornea donor. People donate their valves, skin, tendons, ligaments, all sorts ligaments. [00:07:36] Speaker B: I have four friends in me. I'm not just salmon anymore. I'm salmon friends because I have four ligaments that were donated to me. [00:07:44] Speaker A: Yep. [00:07:45] Speaker B: And so I have my own personalities. If I get out of line, I just blame it on my friends here that are my knees. [00:07:55] Speaker A: I like that excuse. Yeah. Thank you. So, I mean, I think it's really important to realize that even if you feel like you're not in the best of health, there is 100% a chance that you could still help somebody else. And by becoming an organ donor and a tissue donor, you can still help somebody even if you feel you're not in the greatest health condition. [00:08:19] Speaker B: I'll go through this again, but can you, for anybody who needs to drop out earlier, whatever happens, can you tell us how to sign up to be an organ donor? [00:08:29] Speaker A: Yeah, it's actually, we try to make it as easy as possible. Obviously, the easiest thing to do is when you are at a license center or renewing your license is just to check the box and make sure that you're designated to be an organ donor on your license. And that's 100% the easiest way. But obviously, we try to make it easy in other ways because you only have to renew your license every so often. So registerme.org is a way that you can register to be an organ donor. Our organ procurement organization in our area called Life Source, you can go to their website, and you can also go to donatelifemidwest.org and sign up there. There's just a lot of easy ways to do it. And even you just, like, talk into your phone and say, hey, how do I become an organ donor? There'll be multiple ways that you can get your name on that registry. [00:09:30] Speaker B: I'm wondering, surely there must be some medical conditions that would prevent someone from being an organ donor. What might those be? [00:09:41] Speaker A: To be honest, there really is very little that prevents people from at least donating something. Right. There can be some communicable diseases that may be, you know, ebola. [00:09:56] Speaker B: Ebola, I couldn't resist. [00:09:58] Speaker A: Right. Or mad cow. [00:09:59] Speaker B: Right, right. [00:10:00] Speaker A: Babies, you know, but I mean, those, again, those are things that we screen for that we would screen you out for. And so it's always important if you're interested in potentially donating an organ or tissue or whatever, that you just designate yourself on your license. And then we, not me in particular, but the organ procurement organization takes care of the rest in making sure that those organs are safe to donate. [00:10:33] Speaker B: How many lives could one organ donor save? [00:10:36] Speaker A: Oh, so glad you asked that. So just through tissue and eye donation, up to 75 people can receive tissues and ligaments and corneas and things like that from just one donor, from organ donation. If a donor were able to donate all of their organs, they can save up to eight people for one donor. [00:11:03] Speaker B: That's pretty cool. [00:11:04] Speaker A: Yeah. [00:11:04] Speaker B: And we have had a show on an I donation, by the way. So we're all about improvement of life and, you know, as much as you can. [00:11:15] Speaker A: Yeah, that's really near and dear to my heart as well. My mother has had four cornea transplants now. [00:11:22] Speaker B: Oh, wow. [00:11:23] Speaker A: So she's, you know, she's. Unfortunately, she does have some visual deficits and she's still working on it, but she's on her fourth cornea transplant now, thanks to the kindness of donors. So it's touched my life as well. [00:11:38] Speaker B: So I think some people think, well, I have a disability, I can't be an organ donor. But that's simply not true. Right. What are some of the misconceptions about that? [00:11:46] Speaker A: Yeah, absolutely not. You know, maybe if, you know, for instance, your corneas aren't good, you can't be a cornea donor. You know what I mean? But there's so many things that people can donate that, and you can't have that much wrong with you that you can't donate anything. Right. So, I mean, it's. There's, you know, if people are in kidney failure already, obviously we wouldn't want to take their kidneys, but their liver may be just fine, their lungs may be just fine, you know? So just because one organ system is maybe not working appropriately or a person, I can't even really think of a disability where I'd say absolutely not. It's just not. There's just so much that people can donate that there's something that even people with disabilities could donate. [00:12:43] Speaker B: So let's talk a little bit about how the organ donation process works for the donor and their family. [00:12:51] Speaker A: Yeah, I think this is super important because there are a lot of misconceptions around organ donation. I think there's a lot of. I mean, back when transplant first started, sometimes transplant surgeons were looked at as grave robbers, and I have to tell you the story. So I was all excited. I was going to go get my license. I was 16 years old, and I walk up and I wanted to check the box to become an organ donor. And my mom said, absolutely not. And I was like, what? I said, why not? And she's like, well, they don't try to save you if you are designated as an organ donor. I've heard that, too, in my lifetime. Oh, my goodness. It could not be farther from the truth. Number one, organ donation doesn't even come into a thought process. And the people involved in kind of helping that happen aren't even in the hospital. When you come into the hospital, that's not. It's not even a thought. When you come into the hospital in trouble or whatever, no one's. I trained in trauma as well. I never searched anyone for their license to see if they were an organ donor before I took care of them. You know what I mean? Right. But it is a common misconception. And so I really want to reiterate that once the whole process of talking to people about donating organs in deceased donors doesn't happen until way into somebody's hospital course, where the doctors and the family are starting to feel like, wow, there isn't a chance for recovery, or the patient has been declared brain dead. None of any of that happens until way far into the process and all the medical care possible is given before we ever even think about organ donation. And I'm assuming you mean by. I'm assuming you're asking about deceased donor donation. Once a physician and the family have a conversation that they feel that the patient isn't going to survive or they feel that the patient is brain dead, they will then bring in our organ procurement organization. The one that we work with here in Minnesota is called lifesource. They're a great organization, and they really help to facilitate organ donation. They're kind of the liaison. They go in and they help the family decide whether organ donation is appropriate and really try to make sure that as many organs as possible get placed. [00:16:04] Speaker B: Can you be too old to donate organs? [00:16:07] Speaker A: No, not at all. You know, obviously, it stands to reason that as people age, our bodies get worn out, right? Maybe our organs don't work as well, or we become. We get health ailments that we. That may affect our organs, but just, I mean, let's not be ageist here, you know, I mean, just because someone's older doesn't mean that their organs aren't transplantable, that they don't work, or that they can't help somebody. So that's one of the biggest misconceptions, especially in living donation. A lot of my recipients, my patients that are trying to find kidneys, get kidneys. They'll come in and say, oh, my nephrologist told me that this person was too old to donate, and it's just not true. There is no age limit. I don't like putting any kind of limitations on it because you'd be surprised at how many people can actually donate and who really is a donor and you'd be surprised at who we say, you know what? That's not a good idea. [00:17:26] Speaker B: And so what should one do if their doctor says something like that? Like what would be an appropriate thing for that person to, you know, to do after that besides a second opinion? [00:17:40] Speaker A: Yeah. Well, you know, I think what's important is that anybody who is going through organ failure, like chronic kidney disease or liver disease, they really should get plugged in with a transplant center. That's where you're really going to get the information. You should always, yes, they're physicians, but they didn't train specifically in transplant. And it doesn't make them bad physicians at all. It just isn't their area of expertise. And so what I always encourage people to do is listen to the experts as far as who's an appropriate donor, who isn't an appropriate donor, how to move forward, you know? So I think it's just important to make sure that they keep their mind open. [00:18:31] Speaker B: And so what happens if I say, you know, I'd like to help somebody who is having trouble with their liver. I've got a pretty healthy liver and I want to donate. What would somebody who was a living donor do? [00:18:47] Speaker A: Yeah. So typically, and again, it kind of depends on the organ, a little bit of, but typically what happened is the recipient, the person that is in need, would be evaluated by the transplant center, and then we would talk to them about living donation, and then we would give them the information about how to talk to people about living donation and how they would get that process started for us. I mean, we have a website that people go to. It's called mhealth dot donorscreen.org dot. They go on and they fill out a short health questionnaire and fill out the information about their recipient. And that's what gets them plugged in and gets the process started. So we try to make it as easy as possible. [00:19:37] Speaker B: Doctor Humphrey? Bill, I'm wondering, you know, we've probably, many of us have known somebody who was a recipient of an organ at some point or tissue or whatever ligaments like I have been. But I remember when I've known people who were recipients of kidneys and they were diabetics and their kidneys failed, rejected or whatever the term is, you'd like to use for one particular reason or another, the body didn't accept the kidney. And so I know this can be a tricky thing, and I'm sure it's gotten better with how they're doing it. But can you talk about what happens when an organ is rejected? [00:20:31] Speaker A: Yeah. So I think, first and foremost, it's important to understand that we wouldn't do transplants if it didn't make sense to do it. So transplants, doing especially a kidney transplant, not only improves quality of life, it also improves patients quantity of life, meaning they'll live longer with a transplant than they will on dialysis. Dialysis is, I like to think of as a stepping stone to transplant. It's not a true treatment for kidney disease. It's not a very good life style. People are just miserable on dialysis. And, you know, statistically speaking, if you have a 60 year old diabetic on dialysis, the chances they'll be alive in five years is 20%. So the old adage, oh, we'll just put them on dialysis and they'll be okay, is really not true. It really does shorten people's life span. So we do transplants because it is a more favorable outcome than dialysis at most centers, because this is a very highly regulated industry or very highly regulated by the government, we actually have to have a certain outcome in order to keep our doors open, in order for Medicare to allow us to keep doing transplants. And so at the University of Minnesota, we have, 97% of our patients have a functioning kidney at one year. Wow. And then, of course, further into it, obviously, they keep their kidneys as well. Now people hear rejection and they think, oh, my goodness, it's the end of the organ. And that's not actually true. People can have rejection, and very often it's treatable. We treat it, and we kind of get it back down and get it to the point where the kidney is, or organ is back to functioning appropriately. It's not all that common that people lose their organs to kind of like quick rejection. It's usually kind of over time because we can't. And this is an organ that is not the person. Right? It's a foreign tissue. And so we depress the immune system enough so that it doesn't see the organ, but not enough so that you get opportunistic infections or infections that normal people's normal immune systems don't get. The important thing is that we can't depress the immune system all the way. So there's going to be little tiny attacks on the kidney over time. And that's why these kidneys don't last forever. They just don't. [00:23:40] Speaker B: Or with some people, they last a long time. [00:23:42] Speaker A: They do. They do. And that kind of brings me to the difference between a living donation and deceased donation. So, especially for kidneys, a deceased donor, on average, lasts somewhere between ten to 15 years, but a living donor lasts closer to 20 to 25 years. So living donation, if you have kidney failure and you can get a living donor, it is a much better option for you than waiting on the list for a deceased donor, because it is. [00:24:13] Speaker B: It also lower rejection rate? [00:24:15] Speaker A: It is because we're able to match it better. We have more time to. To do better matching. So the rates of rejection are lower now, of course, rejection. I mean, I like to think of transplant as a team sport, right? We have to do our job by monitoring the organ function and the meds and all that kind of stuff. But the patient also has to do their job to go for labs and make sure they come to their doctor's appointments and take their medications. And so sometimes people can have rejection because they're not necessarily taking care of it the way that they should be. So it's. Transplant's a team sport. It takes all of us kind of working together to make sure that that organ is successful. [00:25:04] Speaker B: Are there differences between organ donation rules and practices, between different countries and regions? [00:25:12] Speaker A: Absolutely. In the United States, organ donation is. It's evolved over time, but we're very concerned about making sure, especially in the living donor world, that there's no coercion, there's no compensation for donating an organ, because once you start compensating people for organs, they may not be doing it for the right reasons, and it can be viewed as a form of coercion. Right? And so in the United States, we are very, very careful with that. Now, that's not the same way it is in other countries. We are very regulated. However, in other countries, I mean, you can buy kidneys, you can pay someone to donate a kidney. And I think sometimes that can be a slippery slope. [00:26:07] Speaker B: Ah, I never understood, like, the whole religious thing, where people don't want to donate for religious purposes. And I've also never understood why we as a country, make people opt in. And I know some countries make you opt out. And I feel like that would be a much better thing as far as having organs when you need them, is if people have to take the. The actual energy to opt out, you know, maybe a lot of people wouldn't, and, you know, because it would take work to do it. A lot of people just don't want to do it if it takes too much work. So can you touch on a little bit about both of those things? [00:26:57] Speaker A: Yeah, you know, I think from the. I think of it less of a religious opposition and more of a cultural opposition. And I do think that sometimes when you're looking at different cultures and their thoughts and beliefs about donation, it is true. There are some religions that are absolutely not, but there's very few of those oftentimes think of it more as a cultural belief. And so I think what we need to do is we need to do better about going out in the communities and really truly educating people on what donation is and how it does help and maybe alleviate some of the misconceptions that they may have about it. So I really think it starts with, with education and really going into those communities from the opt in and opt out kind of standpoint. It's so funny, because when, I mean this a long time ago, when I heard that other countries, you had to opt out of being an organ donor, I was like, well, that's the answer. Right? Like, that's amazing, because I feel like we as a society are lazy, and if we've got to do something, that. [00:28:21] Speaker B: Was going to be my point. But I decided to let you say it. [00:28:24] Speaker A: Yeah. [00:28:25] Speaker B: Sounds better coming from you. [00:28:26] Speaker A: Right. But, like, you know, if we actively have to do it, then I think people are less likely to do it. And, you know, if they actively have to opt out, they're just less likely to do it. But what's interesting is, you know, I do think the whole opt in paradigm that we have in this country really aligns with the United States cultural emphasis on individual rights and autonomy principles, and the opt out really doesn't. And so I think it would be pretty hard to institute an opt out, an opt out legislative initiative here in the United States. And we actually have a law on the books called the Anatomical Gift act, where opt out would currently undermine the existing legal framework. So it's kind of. It'd be very hard to do. But when I really looked into this, there have been several studies that have shown really no difference in deceased donor rates between the opt out and opt in countries. I know. I did not think I was going to see that, but it really. [00:29:47] Speaker B: It'll be interesting to see who did those studies. [00:29:50] Speaker A: Yeah, no, and reputable. But I really thought I was going to see the opposite. But what was interesting is they did see lower rates of living donation in the opt out countries, and one of the studies I read, they actually were just getting people's thoughts and attitudes towards donation. And in the opt out countries, they looked at donation as less of an altruistic act and kind of like, not as. I don't know, not like we look at it where we like, oh, wow, that person donated. That's so awesome. You know, and in the opt in countries, donation, living donation and deceased donation were looked at so much more highly. And so I think that's why living donation is more prevalent in countries that have the opt in paradigm as opposed to the opt out. But I for a while thought the opt out was going to be the answer, but I don't know that that's true. I think the answer lies in education and exactly. Doing what you're doing now is bringing awareness to it and really shedding a light on a subject that people don't know a lot about. I mean, when people find out I'm a transplant surgeon, I actually hesitate to tell people because, well, I. Well, because as soon as I tell somebody, then it's just, that's the conversation centers all around. [00:31:31] Speaker B: I understand. [00:31:32] Speaker A: Yeah. [00:31:33] Speaker B: Kind of like what I'm doing to you now. [00:31:35] Speaker A: But I came for this. [00:31:37] Speaker B: That's true. That's true. Yes. I could imagine that's true. [00:31:41] Speaker A: But it is. It's something that people are really interested in and don't know enough about. And unless we really kind of put it in people's faces, unless somebody is really touched by someone or something where it forces them to look into it, it's just not something that we think about. And so I think that the answer is education and bringing awareness. [00:32:10] Speaker B: I wonder, how does it work being matched with an organ donor? Could you specify, like, if I know I want to give my kidney and I know a family member needs it, can you specify that for who you want? Or is it once you've released that? Too bad. [00:32:30] Speaker A: Yeah. So in the deceased donor world, and I feel like we should, for your listeners, back up a little bit and just talk a little bit about the difference between, between deceased and living donor, just to make sure that everyone truly understands that. So living donation, a person donates an organ and continues to live a normal life. And in that kind of world, you're not waiting on the waiting list for an organ. Right. And so living donation doesn't just benefit that person that's getting the organ, it also benefits all the people that don't have living donors on the waiting list by removing someone from that waiting list. Right. So it's, you know, living donation, when possible, is a better route to go from an outcome perspective and longevity of the organ, and it just is a better way to go. But for people who can't, obviously, there's the deceased earner list, the. Oh, I lost your question, though. [00:33:40] Speaker B: That's okay. So how is one matched? [00:33:42] Speaker A: Oh, right. So you also asked about kind of designating, right? So you can. If say you are, you know, you're. You tell one of your family members, and this is also an important point. It is important to let family members know that you do want to be an organ donor. In the state of Minnesota, if you fill out and say you want to be an organ donor, your family actually can't go against your wishes. But it's always useful and helpful for your family to know your wishes. So I would say that is a super important part, important part of being designating yourself as a donor. But if you were to say you were designated a donor and someone that you knew needed a kidney, you can designate it. Or liver, you can designate your organ to somebody, if you know somebody who is in organ failure. And that sometimes works. But I have to be honest, it oftentimes doesn't, because there's a lot of things that go into matching a person with an organ. Number one, you have to be the right blood type. Number two, here's what's super interesting. Only 1% of people who are designated a donor on their license pass away in a fashion that is considered them having the ability to actually donate their organs. Only 1%. So just because you have. I know. Right. He. But it really has to be a certain. It really has to be a certain sort of set of circumstances that really allows someone to donate. If you were in a car accident on the street and passed away in the street, you wouldn't be eligible to donate. [00:35:44] Speaker B: Not at all. [00:35:46] Speaker A: Well, no. Wow. [00:35:48] Speaker B: And why? [00:35:50] Speaker A: Because for, in order for us to procure the organs, they still have to be having blood flow. Once you. Once the blood flow and once you've passed away, if we don't get those organs out right away, they're not good. So only 1% of people pass away in a fashion that's consistent with being able to donate their organs. So at any rate. [00:36:20] Speaker B: So I just want to stop on that one because sometimes I've seen these hospital shows which are totally. I know, I'm sorry. I'm sorry. But, you know, they. Oh, they just got in an accident and they're being kept alive by whatever the, you know, their brain dead or whatever. But they were. They were CPR'd until they got to the hospital and then they put them on life support. Can they still donate? [00:36:49] Speaker A: Yeah, that would be okay. [00:36:51] Speaker B: It's as if the heart stops, that that ruins that thing or what? [00:36:56] Speaker A: Yeah. If we can't maintain blood flow to those organs, they won't be transplantable, and maintaining the blood flow would have to be, you know, CPR. The heart gets reanimated and starts beating again. [00:37:10] Speaker B: Does this include, like, skin and ligaments and things like that? [00:37:17] Speaker A: Yeah, most often it does, because it is hard to get people to the hospital and then get that all kind of worked out to where they can procure those things. So, yeah, it's kind of everything. [00:37:35] Speaker B: Wow. [00:37:38] Speaker A: Oh. So to go back to your question, so, yes, so if you designated it, it would have to be the appropriate blood type match. It would have to be the appropriate immunologic match. Right. And so a lot of things just have to really fall into place for it to happen. And it does happen every now and then. It just doesn't happen a lot. [00:38:00] Speaker B: I thought that people in your family are more likely to match up potentially. [00:38:07] Speaker A: So you would think that because genetically you would at least have share some of the same traits. But it most certainly is not always the case, especially in kidney donation. Living kidney donation. People come in with family members and we are oftentimes able to find them a better match by swapping kidneys. [00:38:30] Speaker B: Wow. [00:38:31] Speaker A: The better the match, the longer that kidney is going to last. And, you know, this is kind of the holy grail of organ transplant, is how can we do an organ transplant just once and have it last that person the rest of their lives? Right. And we're just not there yet. [00:38:49] Speaker B: You see Charlene? No more four beers a week. Just kidding. She doesn't do that. I'd like to jump ahead here about advancements in 3d printing and stem cell research is, I feel like one of the hot things now that people sometimes talk about in the medical field. So can you educate me on does this play a part in organ donation and if so, how? [00:39:21] Speaker A: Well, I mean, I'm hoping that it'll make organ donation obsolete. Right, right. So it's something that is very hot, and we talk about a lot, and there's been a lot of great advancements, even at the University of Minnesota, we have been doing a lot of work with xenotransplant, which is basically genetically modifying animal organs for. Yep. Most of the time. Pig. Yep. To transplant to humans. And so that is something that one of my partners, Doctor Adams, has an active lab in and lots of grants for that. So we're definitely working on that and that's looking very promising. But in addition, one of my other partners, Doctor Jack Leek, he is also working on the whole 3d printing portion of things and decellularizing organs and re cellularizing them with human cells. So what he's been doing is he takes a pig organ and takes all of the cells out of it and then repopulates it with human cells in the appropriate configurations, which, I have to say, is really an amazing feat. A kidney is a very complex organ. It's not just one type of cell, it's lots of different types of cells. And not only is it lots of different types of cells, you can't just, like, put a whole bunch of different types of cells in there and hope like they work. They have to be in the correct configuration to work. And so he has been doing fantastic work with re cellularizing these organs and has had a lot of really good success so far. I think he's gotten out nine days after transplanting one of these into an animal model, and it's functioned, I think, for nine days, he said, so far. So we're definitely moving towards innovative ways of trying to solve our organ shortage. Unfortunately, we're not there yet, and I don't think it's going to be ready for prime time really very soon. But there are a lot of exciting advancements in this. [00:41:53] Speaker B: So much is happening with stem cells now. It feels like that would be almost an easier thing. I know there's a lot of people that get weird about that, but talk to me about how. I mean, is that easier or what are the shortcomings with that? [00:42:11] Speaker A: Yeah, I mean, I think stem cells are fantastic. You know, stem cells are basically a cell that can kind of become anything you want it to become. Right? But the challenge is how do we tell that cell what to become? And how do we tell that cell once it becomes, like, this certain type of cell? How do we tell that cell to then go to this place in the kidney or in the liver? And how do we tell that cell to make sure that it lines itself up with another cell that's similar to it right next to, like, a different cell? Do you know what I mean? It's quite complicated. And I do think that there's a lot of great work being done with stem cells. Again, I. I just don't see it super soon being a viable option to solve our organ shortage. But I'm really hoping that some of these things will come along here in the next 15 years, 1015 years. [00:43:20] Speaker B: What role does the organ donation registries play? [00:43:29] Speaker A: So do you mean like our national. [00:43:33] Speaker B: Yeah, the registry of organs, you know, like. [00:43:36] Speaker A: Yeah, like that. [00:43:38] Speaker B: Yeah. [00:43:38] Speaker A: Yeah. So it's, again, very highly regulated here in the United States, which is a good thing. And, you know, sometimes also a difficult thing. Right. But I think it's a good thing in that their main goal is just to make sure that they're promoting equity in organ allocation. I think it's super important because if we're not careful, there can be large swaths of people left out and not have the same access to organ transplant that maybe others have. They basically manage the wait list. They participate in organ matching, participate in developing policies around allocation of organs. And again, number one, and first and foremost is promoting equity in the allocation system because if we don't, we lose trust. [00:44:37] Speaker B: Right. Go ahead. [00:44:41] Speaker A: Oh, no. So I was just going to say, so they manage that and they're under federal contract with the government. And so UNOS is contracted by, UNOS stands for the United Network of Organ sharing. So that's contracted by HRSA to manage the OpTN, which is the organ procurement and transplantation network. So it's kind of, there's a lot of organizations that kind of manage all of this. [00:45:07] Speaker B: So you get somebody who, well, let's just say it, who might be a heavy drug user or who is an alcoholic, and they realize some of their organs or an organ might be failing to, they want a new one. And how does that work? Because to me, fairness with that, as opposed to some younger person who didn't ask for some of this stuff to happen, how do you weigh that? [00:45:39] Speaker A: So I think it's important that we don't pass judgment on others. And so in the organ allocation system, we don't necessarily look at, we don't penalize people for what caused their organ failure. Now, in alcoholic cirrhosis, where someone may need a liver transplant, we kind of ensure that they are on the road to recovery and in recovery from their alcoholism and that they're established with the appropriate support people and participate in alcohol cessation programs and things like that. Is there recidivism after liver transplant? Sometimes, yes, but for the most part, if we really adhere to our guidelines and ensuring that they have a support system for their disorder, I think it's pretty successful. So. [00:46:55] Speaker B: Okay. Yeah, I'm glad I don't have to be the one who selects it. I admit it would be hard for me because I'd be going for the younger, you know, or the person who really didn't ask for this, and they got it, and it wasn't anything they did, which is just, that is the way of it, and. [00:47:19] Speaker A: And I think that's why we take that stuff out of it. So most of our allocation system is based on trying to make people wait in line. So for kidney, the way you move up the list is according to the amount of time that you've been on dialysis or the amount of time you've spent on the list. So you're moving up the list according to, like, just kind of waiting in line. In liver allocation, we try to, because there is no substitute for the liver. There's no dialysis machine for the liver. Once someone's in liver failure and they get really badly into liver failure, there's not anything that we can do. So for those patients, they move up the list according to how severe their liver disease is. It's called a meld score, and that's what moves them up the list, and that ensures that we're transplanting the sickest people first. So it really tries to be based on data, and it's, you know, I agree it can be difficult, but we really have to take our own judgments out of who deserves an organ and who doesn't. [00:48:27] Speaker B: Gotcha. So what support is available for families of donors during and after donation? The donation process? [00:48:40] Speaker A: Yeah, we actually have quite a bit of support and lifesource. Our organ procurement organization does have a lot of resources for people that have lost a loved one and donated their organs. You know, when I first started doing this, and I can remember my first procurement, and I just had such mixed feelings about it. You know, on one point, I see this person passing away, but yet on the other side, I see people being given a new life, you know, and. [00:49:17] Speaker B: It'S. [00:49:20] Speaker A: Such a dichotomy of feelings all at the same time that it, you know, it was really overwhelming when I first started kind of getting into this. But the organ procurement organization does offer a lot of resources for families that are experiencing a loss, and they offer support groups. My neighbor actually went through something very similar, and I can tell you after speaking to some of the donors families that it sometimes gives them a sense of closure. So when something such a senseless tragedy happens, but yet there can be some sort of good that comes out of it that oftentimes gives families a sense of closure and a little bit of happiness surrounding the situation. [00:50:16] Speaker B: Do donors get to meet their recipients or vice versa? [00:50:22] Speaker A: Well, so in living donation or. [00:50:26] Speaker B: Yes. [00:50:27] Speaker A: Yeah, in living donation. So it just really depends on how you go about doing it. So, obviously, deceased donors. Donors, sometimes. Oftentimes. Actually, I can't tell you how often I've done a kidney transplant, and the first words out of the recipient's mouth is, can I write a letter to the donor's family thanking them? Like, they're so thankful. [00:50:53] Speaker B: Right. [00:50:54] Speaker A: And they go through the same emotions. It's a very emotional field to be in. They go through the same emotions, so happy for themselves, but yet so sad that someone has passed away in order to give them the second chance. And so I can say, for the most part, people don't take it for granted and are so appreciative. So if a. If a family that received an organ wants to reach out to the donor, that can be facilitated by our organ procurement organization, lifesource, and usually our transplant coordinators will assist in doing that so we can make it happen. We try to make sure that for people that would like to stay anonymous, that happens because we want to respect everybody's privacy. I think that's very important. But for people that do want to meet up, oftentimes they do, and it's a great experience. And about once a year, we have a gathering, a ceremony for the donors, for the families of the donors that have donated. It's just very. It's very nice to go to those and just thank those families for their gift. [00:52:11] Speaker B: How can individuals ensure their organ donation wishes are followed after death? [00:52:18] Speaker A: Yeah. So all you. So, again, in the state of Minnesota, your family can't go back on what you say if you designate yourself as a donor that is legally binding, and so your family does actually can't say no unless there's a. Unless they're a minor. But none of us want to be in that situation where, you know, the family's at odds with the decision. Right. So that's why I think it's so, while it's a very difficult conversation to have, I think it's so important just to make sure that your family and your friends and, you know, know what your wishes are if anything were to happen to you, not only just because of that, but also it spreads awareness. You know, if you're like, hey, I signed up to be an organ donor. I want to be an organ donor. It makes people think about it, you know? [00:53:16] Speaker B: And what I am learning, too, is that people who want to do this definitely do it, but also, it sounds like have a plan B, because what if something happens to you and you're not able to do the donation? Right? [00:53:33] Speaker A: Yeah. [00:53:34] Speaker B: So plan b's are always good. I believe in them myself, but certainly have a first plan and it should be honored the same way after death as you request, right? [00:53:48] Speaker A: Correct. [00:53:49] Speaker B: And is that most states that are like that? [00:53:54] Speaker A: Yeah, I believe so. So I've only practiced here in Minnesota and in Ohio. And so in both of those states, it was donor designated. They're donor designated states, which basically means that if you put it, if you designate yourself as a donor, your family can't, you know, disregard those wishes. And so, but I honestly, I think most states are that way, but I can't tell you which ones aren't. [00:54:23] Speaker B: If you were to leave anybody with any wisdom, what would it be? Our listeners? [00:54:30] Speaker A: I just, I think it's so important to educate yourself on this, on the need that we have. I mean, just here in Minnesota, we have about 2700 people on the list waiting for an organ. Just in Minnesota, throughout the country, it's 103,000, you know, and just on the kidney list, it's anywhere between 89 and 90,000 at any one time, you know, so the need is great. And, you know, typically we do about 46,000 kidney transplants a year, and there's still half the people waiting on the list, you know, for a kidney transplant. So it's just, you know, amazing how many people are just waiting and, you know, every 17 minutes someone dies on the waiting list just waiting for an organ. So I think just familiarizing yourself with the need and realizing what you can do. I mean, you can be a hero just by donating after you've passed away, you know, just designating yourself as a donor. [00:55:43] Speaker B: Doctor Humberbeals, thank you so much for coming on and giving us your time. We really appreciate that. [00:55:48] Speaker A: Thank you so much for having me. I've had such a good time. [00:55:51] Speaker B: Thank you. This has been disability and progress. The views expressed on the show are not necessarily those of Kfaiden or it's board of directors. My name is Sam, and I'm the host of this show. Charlene Dahl is my research pr person. Erin is my podcaster. We've been speaking with Doctor Humphrey Ville, who was talking about organ donation tonight. And if you have questions, comments, or just want to talk, you can email [email protected]. [00:56:29] Speaker A: Api dot.org.