Living Kidney Donation and Transplantation
04/27/15 | 42m 51s | Rating: TV-G
Didier Mandelbrot, Medical Director, Kidney Transplantation, UW Health, Christine Lillesand, Kidney Transplant Coordinator, UW Health, Rebecca Hays, Independent Living Donor Advocate, UW Health, explore the process for living kidney donation and transplant, discuss the trends in kidney transplantation and answer questions for those needing transplants and those considering donating kidneys.
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Living Kidney Donation and Transplantation
Thank you, Mandy. Welcome everybody. It's nice to see some faces. I wish I could see everybody on the webinar world but. I'm Kris. I'm one of the transplant coordinators, and my role is to help patients get into the system to start the road to transplant and also to help their living donors get into the system, and hopefully end up at a living donor transplant. With some background I'd like to start with this slide. You can see that the numbers are fairly high. As of yesterday morning, there were 123,000 plus patients waiting for organ transplants in Specifically for kidney, there's about 101,700. In Wisconsin, there are 1900-plus patients, and that's broken down between our program, Froedtert, and St. Luke's, both of which are in Milwaukee. When we're looking at kidney transplant we talk about two different kinds of transplants, two different sources for kidneys. One is a deceased donor, and this is somebody who has had an unfortunate medical incident, they're in the hospital, they're not going to make it, and their family consents to have them be a donor. The other source for kidney transplants is a living donor, and this can be from any living person who passes the physical exam, essentially. It can be somebody who is related by blood. So, a mom, a dad, a brother, a sister, a cousin. It can be somebody who is not related by blood. So, a stepchild, a spouse, a family friend, the mailman, mail person. We also have people who contact our program and are just interested in being a non-directed kidney donor. They have thought long and hard about doing this. They contact the program. They're put through the same paces that anybody else who's thinking about being a donor goes through. And in the end, if they do end up donating, it's to somebody they don't know. That's a non-directed donor. You might have heard it referred to as a humanitarian donor. Within that category, or with even the living related pairs, we can do fancy things, especially with our new computer programs, and do paired exchanges where perhaps a recipient wants to have this donor donate directly to them, but maybe because the blood types don't match or their blood is not compatible or there's a size difference, maybe a young or a small female wanting to give a kidney to a larger male, there's a size difference, and it might be better to do a pair, do a swap with somebody else to get a more compatible donor. So we have variations on the theme on how to make that happen. Now, at our program last year, you can see that we did 252 kidney transplants. And if your head went back a slide or two to the numbers that are waiting, you can tell that there's a great disparity. There's a lot more people waiting for kidneys than are actually getting them. We did 164 deceased donor kidneys and 88 living donor kidneys, and this is all varieties, related, not related, non-directed. When we like to toot our horn, we can look at the volumes that are done around the country. These are from 2014. You'll notice that in the top 10 we're the only Midwest center, which is really nice. But you can also see that the top centers are really doing in the low 300s. So, when you look at the number of people waiting again, you can still see these numbers are low compared to the number of folks who need a transplant. And this is why we talk so much about living donor options. Over time, and this starts in 1998, you can see that basically it's sort of a flat line. If you look at the top black line, that shows all kidney transplant volume nationally. The next line below it, the olive green line, is how many deceased donors, and then below that, in the faint light gray line, the living donors. There just has not been much headway made, and so we're continuing to spread the word and talk to people about transplant in So at our program, and I think it's very much like other programs, the process starts with a referral. Either the nephrologist or the primary physician or the patient themselves call to our program and say I want to talk about kidney transplant and getting on the list. And so all of that demographic stuff is collected, the patient is assigned to a pre-kidney coordinator, they start looking at health history, and they start talking about living donor transplant, the importance of it. During the whole record retrieval process, the evaluation process, this message is repeated over and over. And we know that patients maybe get tired of hearing this, but our message is just so important that we continue to stress the point. Once the patient comes for an evaluation, that's typically about a four-hour process where they meet with a medical staff member, sometimes a surgeon, sometimes a nephrologist, which is a kidney doctor. They'll also meet with their coordinator, a social worker, and the dietician. The financial counselor is also in the mix to make sure that there are no insurance concerns because that would be a very bad surprise. Support people are more than welcome to come to these evals, and then they hear about the importance of living donation. So you can see we're starting to kind of rein people in. It all culminates in the kidney selection meeting where we talk about the patient and talk about their candidacy to see if surgically, medically, psychosocially, nutritionally they are healthy enough to get a kidney transplant. So, back to living donation. We really recommend this strongly. Not everybody who comes in the door has an identified person that they'd like to step forward as a donor. Sometimes it's a brand new thought process for them. But we talk about why it's recommended. The main reason, well, there's many main reasons, but one of them is the survival. On average, if you get a deceased donor it will last about eight to 12 years. Now, a lot of things impact that, but on average. If we're looking at a living donor transplant, we're looking at higher numbers, probably 12 to 20 years. Getting a living donor transplant, of course, also reduces the need for retransplant. If that kidney lasts longer, hopefully that's going to be the one and only that you need. There are shorter waiting times. You remember the slides that spoke to how many people are waiting. If you have a living donor, we can get that person in the process, get them worked up, get all the kinks worked out, and hopefully to transplant within a couple months. And so, ideally, getting people transplanted before they're on dialysis, this allows that to happen. To do that preemptive transplant before they start dialysis. We can also schedule surgery at the patient's convenience. So, I talked to a fellow last week who's getting married in August, and he wants this transplant and he wants to be recovered so he can walk down the aisle, and we're going to make it happen. His goal is to be done and recovered by mid-August. It's very doable, and that's the beauty of living donation. And, perhaps the obvious, it gets you a healthier kidney. That living donor is in the operating room, pretty much next door to where the transplant patient is, and that kidney is taken out of the donor and walked across to the transplant recipient. Versus a deceased donor probably has had quite a journey before it even gets to the hospital. Now, I don't know how much you love looking at statistics, I really don't, but this is just a quick and easy bar graph showing you that over time the red bar indicates the living donor and the blue bar is the deceased donor, over time, on average, it's meant to show you that once again living donation is superior to deceased donation in terms of how long the transplant lasts. Average waiting times, I think you've surmised this from the other slides, but what I didn't mention is that the times are oftentimes based on your blood type. So, in Wisconsin, we seem to have a lot of blood type A patients. I don't know if it's our Germanic heritage or Scandinavian heritage, but the A's seem to have a less, there's more As and so we get more A donors and so the waiting time is less. An average of 518 days. Blood type O, on the other hand, a thousand days. Now, so much goes into this, so much more that this slide doesn't tell you, but the take home message is blood type As seem to get faster transplants than the Os and the Bs. I'm now going to turn it over to Dr. Mandelbrot. Hello, I'm Didier Mandelbrot. I'm the medical director of the kidney and pancreas transplant program at UW. I'm going to give you a little bit of an overview of what happens with the living donor evaluation process and some of the key issues that come up. So, typically, the way this process starts is with a phone call between a potential donor, someone who's interested in donating, and the transplant coordinator, and that gives an opportunity for the potential donor to find out about living donation, ask and also to start reviewing the medical history over the phone with a coordinator. Sometimes issues come up that make it very clear from the beginning that someone will not be a potential donor, and that allows the process to basically stop at that point. But if the medical history looks like it's promising, then we go ahead to the next step. The next step is typically to provide a blood sample for compatibility testing, and a key point is that this can be done locally. So we sometimes evaluate donors at great distance, whether it's on the other side of Wisconsin or in California. The initial screening steps really can be done from a distance without having to come here to UW. And then there's the donor evaluation day, which I will talk about in a little more detail in a minute. So, the evaluation of the medical issues as to who can be a living donor are fairly complex, but just to give you an idea of some of the key issues that come up. Basically, to be a living donor you have to be an adult and in good physical and mental health. One issue that comes up fairly often is, is there an upper age limit to donate a kidney? And the short answer is no. Basically, it's more important to be healthy and to be a good candidate for psychosocial reasons, and that's much more important than the absolute age. Obviously, to donate a kidney someone cannot have kidney disease. That's important both for protecting the health of the donor, and, of course, also for protecting the quality of the kidney that the recipient would receive. We also want to make sure there's no heart disease because it is an operation that has certain risks that I'll talk about in a minute. But we don't want to have increased risk for someone who's going through a donation procedure that's really of no benefit to them. We look for recurrent or current cancer. Again, that's important both to protect the donor's health and also to protect the recipient's health since we would not want to transmit a cancer from the donor to the recipient. And there's a number of other factors that are basically risk factors for kidney disease. It's a little bit less clear where to draw the line as to who's an acceptable donor or not. But some of the major guidelines would be a donor cannot be diabetic because of the high risk of kidney disease, cannot be too overweight, and exactly where you draw the line as to how overweight is too overweight actually varies quite a bit between different centers, but being overweight is a risk factor for kidney disease. So that's an important part of the evaluation. And high blood pressure is similar as well different programs might have different cutoffs for what's considered too much high blood pressure, but I think it's important to emphasize that somebody with a small amount of high blood pressure that's very easily controlled on one medication, for example, that's something that's a very small risk factor and, again, easy to control with medications, so it does not absolutely preclude kidney donation. And there's a large number of other medical issues that really I can't go into all the details for today, but the evaluation is very thorough to identify them. So once the initial screening is done, a day-long evaluation is scheduled for and that donor meets with all the different members of the transplant team. So that includes the nephrologist, or kidney doctor, who will focus on some of the medical issues and kidney issues, surgeon that will focus on some of the surgical issues, some of the details of the operation, social worker who goes through a number of very important psychosocial issues, a transplant coordinator who really coordinates all the information going back and forth between the different providers, between the potential donor and the providers, between the providers and the donor, a dietician, and a living donor advocate, which is a very important and kind of unique aspect of the live donor evaluation. The live donor advocate is not involved in any aspect of the care of any of the recipients and really focuses just on the donor, making sure they advocate for the donor, making sure that the donor understands what's involved, the risks, and that they don't have any further concerns before proceeding. And then the testing, again I'm not going to go through the details, but it's very extensive and includes a chest X-ray, detailed laboratory evaluation, CAT scan to get detailed anatomy of the kidneys, and an electrocardiogram. I think it's very important to mention right up front that live donors are really very special people, and we try very hard to recognize their generous gift. We do have a number of regular events to recognize their generosity. And, in addition, we have a live donor recognition wall, which I'm fairly new to the area, I really like this wall very much. All the providers and all the patients have to walk by this wall to get to the clinic, and it lists, basically, all the donors that have generously donated in the past. So each name is listed here with a backlit name. So, after the preliminary screening, the patient is presented at a selection committee, similar to how Kris mentioned the recipient selection committee. And this, basically the entire team that's discussed, that's spoken with the potential donor is in the same room, and instead of their just speaking individually with a donor, everybody is there to provide input. And so the potential donors are presented, everybody has a chance to provide input, and a determination is made as to whether that potential donor is a good donor candidate or maybe not so good a donor candidate, or, I think it's important to mention, often there might be a specific issue that just needs to be resolved before someone can go ahead and donate. Maybe a borderline chest X-ray that just needs to be repeated or something like that. And it is important to understand that close to a third of potential donors who go through the evaluation are actually turned down. We sometimes find, through such a careful evaluation, we sometimes find kidney disease that might not have been known about, we sometimes find cancers that might not have been known about, things that are actually important to the donor's health but would prevent them from going ahead and donating. So, once the live donor is clear to proceed, the transplant surgery is scheduled. And, as Kris alluded to, the donor surgery and the transplant recipient surgery take place on the same day, and typically, actually, in adjacent operating rooms. Now, a little bit of technical issues, which actually turn out to be important in the history of live donation, a development over the last decade or two is this procedure called laparoscopic nephrectomy. And the idea there is that the kidney is taken from the donor through typically three small incisions rather than having the former procedure which is a large incision. And that's really made the whole procedure much more shorter hospital stay and really easier and less painful for the donors, and I think it's really made the whole experience a lot better. The hospital stay is typically two to three days. Almost all the nephrectomies are done laparoscopically, 95% or so. Occasionally, there's an anatomical reason to do the sort of older open donor nephrectomy, and that requires a larger incision and typically a longer hospital stay, typically four to five days. There's always further work to try to improve the procedure, simplify it, make it easier for the donor. You may have heard of this newer belly button nephrectomy, and the idea there is to have even fewer than three incisions to get the kidney out and to actually take the kidney out through a small incision through the belly button. So, just to show you what it looks like in the operating room with the classic laparoscopic nephrectomy. So you have these three ports, and those ports allow surgical instruments to go through, suction, scopes, and, ultimately, one of the ports is used to bring the kidney out. And so this refers to the kidney transplant surgery for the recipient. Again, it's an adjacent operating room. It typically takes about two to four hours, and the length of stay for the recipient is typically four to five days. And you can see this picture shows in the sort of right groin area is where the transplanted kidney is placed. It's attached. You can see there's basically three attachments. There's an artery, a vein, and ureter that's attached to the bladder. And a question that often comes up is that the native kidneys are left in place almost always for the recipient. So, after the transplant surgery, again for the recipients, there's a couple of key points to keep in mind. One is that the medications are really life long. With the exception of identical twin transplantation, there's essentially always some risk of rejection, so the anti-rejection medications really have to be continued indefinitely. And along with that, there's regular blood work. It's very intensive shortly after the surgery, and eventually gets less intensive. But it is life long to monitor for rejection and to monitor to adjust chemistries And it's also fairly intensive in terms of clinic visits, typically six times in the first year. And after that, typically we will see all former transplant recipients once a year to stay in touch, to make sure the things are fine tuned, to make sure the anti-rejection medications are adjusted. But in addition to that, we like to make sure that all transplant recipients have a local provider, a primary care physician to address things like healthcare maintenance and vaccinations and other issues. So it becomes really a teamwork in the long run. A couple issues to discuss about after the donation. So we're back to the live donor themselves. In terms of the time to return to work, typically after a laparoscopic nephrectomy it takes about four to eight weeks until donors feel really back to normal, 100% back to normal and ready to go back to work. That's obviously very variable. If there's complications, it may be on the longer side. I've actually taken care a number of donors who had desk jobs and were really anxious to go back to work and they went back to work after, you know, a few weeks, but that's a little bit unusual. I think four to eight weeks is what to expect, typically. There's always a postoperative visit with the surgeon a few weeks after leaving the hospital. And this is an important question that comes up all the time is, are there any special medications or any special diet that former donors need to follow? And the answer is no. The kidney donors are really screened very carefully. It's ensured that they'll have sufficient kidney function. They don't need to do anything differently in terms of medications or diet. There are required follow-up visits for the donor. Part of this is because we really want to follow up and make sure everything went well, and part of it is actually it's a government requirement that we submit data on former donors at six months, one year, and two years. So that's an important part of the whole package in terms of donating and follow-up. And then we, of course, recommend an annual physical with local physicians to make sure that things are still stable. In terms of risks for live donation, that's really one of the key, probably most important issues that I personally discuss with the potential donor. And there are a number of studies that have looked at long-term safety of donation, and these studies have followed former donors as far out as 40 years. So it's really quite prolonged follow-up. And the data is really very reassuring. I'm not going to go through it, but in terms of the surgical risks, that's really a short-term issue. Long-term medical risks are really very minimal, and I'll go through that in a little more detail. But that's important to emphasize that sometimes there's fears about kidney donor safety. Some people are actually anxious to donate but kind of assume they'll have kidney failure, and, of course, that's not the case. The goal of the donor evaluation is to prevent that from happening. So, again, three basic areas of donor risk can be divided into the surgical risks, which I'll talk about a little bit, some of the long-term medical or health impacts, and some of the emotional and psychosocial issues that Rebecca will talk about after me. So in terms of the surgical risks, I think the best way to think about it is that the risks are similar to any surgery, but donors are basically carefully screened to be very healthy at the time of donation. So if anything, the risks of surgery are lower than the risk of any other abdominal surgery, whether it's an appendix or gall bladder or another similar type of surgery. But there are risks and it's important to keep that in mind. Some of the things you might consider smaller issues would include risks of anesthesia, risk of infection, wound healing issues. A collapsed lung is actually more an issue with the older open nephrectomy. It's fairly rare with the laparoscopic nephrectomy but is a possibility. Pneumonia from the intubation from the anesthesia, and, of course, pain, which is sort of part and parcel of the procedure in any operation. The bigger issues include bleeding, and actually blood clotting as well, as is the case for any operation. And there is a risk of death, as for any procedure. The risk of death for live donation is on the order of three out of 10,000. So it's very small, but it's never going to be zero. And overall, less than 1% of kidney donors have any surgical problems at all. In terms of long-term medical issues, there's also, as I said, some areas of inappropriate fears. As I mentioned, the idea that donors will necessarily get kidney failure is, of course, not true. In fact, what these long-term studies have basically shown is that if you look after 40 years at former kidney donors and compare the population to the general population, the risk of kidney failure, and actually of death, is actually lower than the general population. And that's, of course, not because the process of donating a kidney lengthens your life, but it's because the kidney donors are so carefully selected to donate they're really much healthier than the general population when they're selected to donate so that after 20 or 40 years their chances of being alive and of not having kidney failure are actually better. You obviously don't get something for nothing. There is a small increased risk of kidney disease from donating a kidney. Exactly how small it is, there's a little bit of debate, but I think it's fair to say it's very small but not zero. So it's an important consideration in So, in terms of major lifestyle adjustments, also there really are not. We would not accept someone who would not have enough kidney function to be able to do everything
they do normally
exercise, work, et cetera. So, I think I will end there and have Rebecca talk for the rest. Thank you, Dr. Mandelbrot. And thank you so much for being here, and Kris and Dr. Mandelbrot have already covered a lot of material. And to me, it took me probably 10-20 times to hear that stuff over and over again before it could really sink in and I could parse it out. So I'm so glad that you're here, and I'm so glad that AAKP and NKF sponsored this webinar that will be available to look at again if you're not remembering some of the detail. I guess the other reason that I'm really glad that you're here is I think that whether or not you're somebody waiting for a kidney with kidney disease or you're somebody who loves somebody with kidney disease and you're trying to sort out whether kidney donation might be for you, it is hard to talk about, it's hard to think about, and it's complicated. And I really appreciate you being here to share some of that conversation today, and I look forward to your questions and comments about it later. I'm going to talk about a little bit of a hodgepodge at the moment in terms of things that are hard to think and talk about. And so by all means, if I jump through something too quickly, make me go back to it later because I want to talk a little bit about the emotional impact of living kidney donation for both the donor and the person who receives the kidney. I want to talk a little about talking about living kidney donation because it's not easy to do, and it takes learning and practice to be able to do so comfortably. And I want to talk about ways to start or stop the living donor evaluation process. As Dr. Mandelbrot and Kris mentioned, I work at the University of Wisconsin as the living donor social worker and the independent living donor advocate, which means that I'm not lucky enough anymore to work with people with kidney disease. I did that for many years. But I am lucky enough now to work all day every day with people who are thinking about living kidney donation or who have been living kidney donors, and it is an incredible honor to work with people who are going through that. And then I have a whole series of FAQ questions that patients have told us that are important to cover. So I'm going to zip through those at an unbelievable pace, and you can be annoyed at how fast I talk. (laughs) I am a Midwesterner. I just speak with an east coast pace sometimes. Okay, so what is the emotional or psychological impact of living kidney donation for people who go through it? And I should comment for people who are in the room today, we are lucky enough to have some people here today who've already been living kidney donors and who volunteer their time as living kidney donor mentors to speak by phone with people who are thinking about doing it. And I wouldn't presume to sort of put them on the spot today, but I would absolutely prop that program for being the best reality check ever about what it's like to donate a kidney. The vast majority of people who donate kidneys describe a good experience, a meaningful experience, and perhaps more profound than they expected it to be. I am incredibly reassured to know that much more than 90% of living kidney donors say they would do it again if they could. And, of course, we all have this very macabre sense of humor and we're like sure, let's go, but no, no, no. But you know what? That said, it can be an emotional struggle during recovery, and that is most common for donors whose recipient, the person they gave the kidney to, is having a hard time. And so when you think about it, here is this shared experience that you have, and how you feel afterwards is going to be so tied to your partner in that, and that is true for kidney donors. So that's the biggest risk of experiencing depression during recovery from kidney donation. But independent of what happens to the person who gets the kidney, there is a risk of experiencing depression during recovery after kidney donation. What is living kidney donation like for people who need a transplant? It's really hard. You guys could teach me more about that. People who need a transplant worry about the hazards to the donor. They worry about whether their kidney disease is going to be inherited by other people in their family. They're worried about the hassles for the donor. They're worried that the donor is going to hold out this thing forever on Thanksgiving, and they're never going to get the last bit of sweet potatoes again ever. And they're worried that the donor is going to regret. I love this quote. This is from an article that Amy Waterman, who's a psychologist at UCLA, wrote a decade ago. But she interviewed a whole bunch of patients who had chosen to stay on the waiting list rather than seek a living donor kidney transplant. And somebody said to her, "Well, it's not like saying "can I borrow your car or will you lend me 50 bucks." It's a whole life thing that can affect someone forever. And so, what does it mean that most living donors have a really good experience and are glad they did it and that almost all eligible patients are recommended to get a living donor transplant if they can, but many people with kidney disease describe absolutely feeling paralyzed and frozen at the idea of talking about living donation? I think it means that transplant programs need to do a better job of helping bridge that and help people with kidney disease learn more about living kidney donation so they know better what they're asking their loved ones to consider. And we need to do a better job of making the living donor evaluation process clear and transparent with easy outs every step along the way so that every living kidney donor who proceeds to donation feels informed and confident and eager to proceed. Well, maybe not eager to proceed, but committed and happy about proceeding. Oh, you could help me come up with adjectives later. Anyway, so, I think that programs and the transplant community as a whole should help people on all sides of that equation learn what does a living donor go through. We should all be helping everybody enlist helpers because it is hard to talk about. And what does that mean? That means that if you are feeling chronically underdialyzed all the time, and you can't remember your grocery list let alone the ins and outs of a living donor evaluation, to find a learning buddy to help you learn about this stuff. It means that if you are completely a technological nincompoop but you have a grandkid who cannot get off social media to save her life, is there a way that she can help you spread the word about living kidney donation and living donor transplant. And the transplant team can help you think through this language and help you talk about how to do so in a way that is not coercive and gets out the information without being pressuring. And I think that is what is really hard to do because what we would want everyone with chronic kidney disease to do is share at a pace that they feel comfortable, in a non-pressuring way, and to respect other people's privacy. And, obviously, those are things that you'd want to do too but sometimes in the moment of urgency and worry about your illness and your health, some of the ins and outs of how to do that can get muddied. Okay, so here are questions that patients have told us are important to answer. If you are thinking about donation, what happens if you decide not to donate? You can change your mind at any time. The donor evaluation process is designed to help you make a thoughtful, informed decision. It's confidential. It involves mostly teaching so that you know better what you're getting into. It's careful, as Dr. Mandelbrot and Kris talked about, and there's an independent advocate to meet with you to help you get off the train at any point. At University of Wisconsin, that's me. But if you're calling in from a center far away, there's an independent living donor advocate wherever you go to explore this. What if I am ruled out as a donor? Meaning what if I can't donate a kidney? Well, I think that that can be emotionally hard. I have a mantra that says that there's an awful lot of ways to help somebody with chronic illness, and giving up a body part is not the only way that you can help the person that you love. And so one of the things that the transplant team is very committed to at University of Wisconsin is if you explore living kidney donation and for whatever reason you're not able to be a living kidney donor, we will talk with you about other ways that you can help your loved one. And that might mean helping them cope with dialysis a little longer, emotionally or practically speaking. It might mean helping get the word out about living kidney donation amongst other people in your community who might be medical candidates. And it might also be role playing how to talk with the person that you love about the fact that you won't be able to donate a kidney. And that's something the transplant team What if I am not a match to my intended recipient, the person that you love who needs a kidney? And the shortest answer to that these days is that is not a deal breaker in the way that it used to be, even when I started in this field a decade ago. So, if you are interested in living kidney donation, even if you're not a match for the person that you know who needs a kidney, there may be medicines that that person can take to help mellow out their immune system so that the match might not be as much of a problem. That's called desensitization. Or you might be able to enroll in something called a paired kidney exchange, and you may have seen these in the popular media lately, but I have a couple pictures. This is one from a few years ago, and there was another story that aired a couple of weeks ago involving another long chain. This is a set of pictures of people who were donors for someone in their life and they weren't compatible. And so I actually don't know if these are all in order. I think they might be. And so these were kidneys that crisscrossed the country over the course of about six weeks or three months or some period of time like that, sorry, in which all 30 people who needed kidneys got them. A few practical things to know about paired exchange. Your kidney donation happens at the same center that you got evaluated at. So your kidney probably gets on an airplane. You do not. The thing that's different about paired exchange is that the timing is not predictable or scheduled in the same way that a traditional living donor transplant is. So if you are not compatible with the person in your life who needs a transplant, the two of you enroll in a-- depending on where you get your care, not every transplant center does paired exchange, I guess I should say, for those of you calling in, but if you are an interested living donor who is not compatible with your recipient and your recipient is going to a transplant center that does not provide the option of paired exchange, it is your right to go to another center to look at that if you want to. And by putting yourselves on a database, what happens is there's a computer that does batch runs every day to find out whether there are matches, and when matches are identified, there are surgeries scheduled. They always have a little bit more notice than the deceased donor transplant list. So it's not like your living donor has to be waiting by the phone day and night the way you probably are while you're waiting for your kidney. I hope you're not waiting by the phone day and night, but you know what I mean. Feeling on edge a little bit. Some programs, including the University of Wisconsin, have also been able to do paired exchange within our own patient population. So this is a group of people a few years ago who all got their surgeries at University of Wisconsin, but they weren't compatible with each other, and so their kidneys were able to do a little round robin. This is a huge fear for both people who need kidneys and people who are thinking about being donors. What if I develop kidney disease after I donate a kidney? And I'd like to reiterate Dr. Mandelbrot's education about that, that the risk of that is very small, but it's not zero. And so one way that the transplant community has addressed that is that if you are a past living kidney donor who ends up needing a kidney transplant yourself, you get priority on the transplant list. What are the costs of living kidney donation? This is a huge question for many people. The medical costs of living kidney donation are covered by the person's insurance who needs the kidney. Donors do usually incur some costs, though. And this is something that your living donor social worker will talk with you about. Those costs usually include lost time from work while you're recovering, if you don't have enough sick time to cover, and then incidentals like travel cost, childcare, other sorts of things like that. Some hospitals you get charged parking and those kinds of things. You may see an increase in insurance premiums after you've donated a kidney. In my experience, the risk of that is very small, and that would be discussed in detail with anyone during their living donor evaluation, if they've got concerns about that. In Madison, we are lucky enough to have a house for people to stay in if they're coming in from far away, and this is, as you can see, it looks sort of like a traditional bed and breakfast, and it functions that way too. It's very homey and welcoming. And so if you're coming from, let's say, Illinois to donate a kidney to someone in your life who lives in Wisconsin, your spouse or your sister or your friends can stay in the transplant house while you're in the hospital. And then if you need or want to stay in Madison a little while before you go back home, you can stay here too. And I've heard nothing but positive things from people who've stayed there. We include a series of online resources, and I would say that I am always torn about online resources because there's so much good information out there and there's a fair amount of garbage too. So I'm going to do the motherly thing and say be careful what you read on the internet. But these are sites that we've vetted, and we would encourage everyone to check out. And if you have questions about other ones, we're happy to field them. I will share that a few years ago I was very blithely referring patients to a live streamed video of a living donor nephrectomy, the kidney surgery, and I just sort of went la-la-la-la-la-la-la, and then my friend, Dr. D'Alessandro, who's a surgeon here, sort of said, "You know, Rebecca, "have you actually had a surgeon look at that "to see if it's okay?" And I went, "No." So he looked at it and it's a good web streaming site, but I need this lecture too. So I think that concludes the presentation, and so now we get to hear from you. And I want to thank you so much. (applause)
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