Pediatric Renal Transplant: A Unique View

Speaker 0 00:00:02 Hello, and welcome to cook. Children's doc talk today, we're talking with Dr. Robert Gillespie and Dr. Blake Palmer of cook children's renal transplant program. It's very busy in the child life zone today. So you may hear a little background noise. And before we get started, just a little background on our guests. Dr. Gillespie is the medical director for nephrology and kidney transplantation. And Dr. Palmer is the medical director of urology here at cook. Children's Dr. Gillespie earned his medical degree from university of Texas medical branch at Galveston and completed his fellowship at university of Washington, Seattle children's Dr. Gillespie has written extensively for peer reviewed medical publications and has given many presentations to medical groups around the country. His professional activities include international outreach programs, development of computer-based tools for nephrologist, and he has actively participated in numerous research studies in the summers. He serves as a camp doctor for camp Renault, a summer camp for children with kidney diseases. Speaker 0 00:01:03 Dr. Palmer earned his medical degree from university of Oklahoma and completed both the research and clinic fellow at university of Oklahoma department of pediatric urology. He is board certified in urology with a subspecialty certification in pediatric urology. His work has been published in multiple peer reviewed journals, and he's a nationally recognized presenter and a member of the American urology association, American Academy of pediatric section of pediatric urology, society of pediatric urology, American Academy of pediatric urologist society of fetal urology and the American college of surgeons. He has special certification by the American college of surgeons in fundamentals of laparoscopic surgery. Welcome. You are both clearly very busy. So thank you for sitting with us today. Speaker 1 00:01:51 Our pleasure. Thank you. So Speaker 0 00:01:53 Dr. Palmer for over a quarter of a century cook children's kidney transplant program has been breaking ground in kidney transplants and is currently the second largest renal transplant program in the state serving not only children in Texas, but in surrounding States as well. The program is also a recognized center of excellence by Optum and United health. But one of the really unique advantages of this program is the team approach between urology and nephrology. Can you tell us a bit about your partnership and how it benefits pediatric patients? Speaker 1 00:02:25 So I'm happy to talk about our program here. We're really proud of our team approach. Uh, we have a team of dedicated pediatric nephrologists and we work with our pediatric oncology team very closely. And which myself, as a specifically trained in renal transplant have specific interest in this area, the benefits and what makes us different than a lot of programs is that we don't have just transplant trained surgeons who are help out in these, in these patients, in these procedures, by having dedicated pediatric surgeons who work with kids all the time, uh, we bring a different aspect and different approach to these kids. They're not just kids with kidney failure, they're kids first. And so we're able to take care of them in unique ways that really contribute to things that are different about kids than adults. Adult transplant. Patients often are patients with diabetes and hypertension, and that actually makes up very few of the patients in a pediatric transplant program. Speaker 1 00:03:18 Many of them are long-time urology patients that I get to fall all the way through doing everything we can to prevent the need for a transplant, but then when it comes time for that, being able to provide that complete circle of care for them on this also allows us to be very comfortable with a unique aspects of very tiny kids and renal failure who need a transplant, which are very foreign and very different for adult surgeons when they, when they come across these patients. So these are things that are a little different in our program than they are elsewhere that are very specific for pediatric patients. Speaker 0 00:03:48 Cute. So Dr. Gillespie, both acute and chronic kidney disease can lead to end stage renal disease or kidney failure, but there are differences in the causes between children under six and those from seven to 20. Can you elaborate on that? Speaker 2 00:04:02 Yeah, certainly. So in children under six, the most common cause of kidney failure is congenital anomalies of the urinary tract. And this is something that really distinguishes us from adult programs because, um, as Dr. Palmer has mentioned, adults largely developed kidney failure from hypertension and diabetes, but in kids, these congenital anomalies greatly complicate thing because there's not only the medical side of the kidney failure, but also the anatomic features that they often need a great deal of reconstruction of their urinary tract that sometimes has to be done in staged procedures. And so they need very close collaboration with the urologists as well as we have to try to optimize their growth and nutrition. So in the midst of all this, we want to be sure that they can grow and develop as well as they can. And that makes for a very complicated setting that requires a very multidisciplinary team in the older kids and say the seven to 20 age range, they more commonly have autoimmune diseases. Things like focal segmental, glomerulosclerosis hemolytic uremic syndrome, lupus, these kinds of things. And so those require a lot of medical treatment and a lot of input from the nephrology team. And often even rheumatology gets involved as well, Speaker 0 00:05:12 Regardless of the cause. What are the biggest challenges for patients, their families, and even the primary care providers and what are we doing to ease them? Speaker 2 00:05:20 There are so many challenges. These families face, it's hard to know even where to start, but yeah, when a child has a chronic disease, they have many doctor visits. They have hospital stays. This is disruptive to the family. The parents often have other children at home. They have to take care of it. It's disruptive to their school schedule, it's disruptive to growth. And so we try to put all these together and really a multidisciplinary thing that looks at the care of the whole family and family centered care has always been one of the key goals at cook children's. And so we tried to bring in the family members as much as we can. We have social workers that work with them to help find support resources for them. We have child life specialists that work to address the child's needs as well as the siblings. Speaker 2 00:06:03 And we tried to bring the siblings in and educate them on the child's condition. Try to explain to them why this sibling is getting more attention than the others often try to deal with those issues so that there's not more stress in the family. We have dieticians who helped optimize their nutrition. And, um, plus we have a fantastic medical center with a huge number of resources to support the parents and the children. And I constantly get feedback from my families about how wonderful their experiences are here. That all the different things like the child life. So on the parent's support facilities, the different people that come out, people are always telling me how much they like that, how much they appreciate it. I think most of all, the comment I hear is that people really appreciate how the staff here all care about them, that everybody, regardless of their position throughout the hospital, throughout the outpatient side, that the staff are always there for them. And some of the people who've had experience at other institutions have commented how much better their experiences here. And they really appreciate that. Yeah. Speaker 1 00:07:01 The other thing is, I think is pretty neat, darn close, to being humble about the approach they take is a lot of kids in a lot of the families talk about the camp experience that they get each year. And it's a time where kids with chronic kidney diseases can all come together. Their parents get a break for a week, which is no minor thing. And they can do a lot of the things that they may have been limited on. Otherwise they get to have the normal kind of camp experience to the best that they can. And they're with a bunch of other kids where they're not singled out as the kid who has kidney problems or is sick or otherwise, they're just like everybody else. And it's a really neat experience. And start Gillespie's brought me along to do that now, and they do a great job with them. Speaker 0 00:07:38 So Dr. Gillespie, it's my understanding that a kidney transplant is the preferred treatment for children and teens with end stage renal disease over dialysis and other treatments. What are the advantages and why does this include preemptive transplants? Speaker 2 00:07:53 Yes, it does. And for most patients, the kidney transplant offers the best quality of life. It offers the closest thing to a normal life. And while dialysis is a great thing and certainly has saved countless lives in the long-term. We always try to get our patients towards transplant if it's at all possible, because there just is more of a normal life. When you literally have a regular kidney inside your body, that's functioning like a kidney that's as close to having your normal, healthy, original kidney as you can. And so transplant patients typically after the initial period, once they're settled down, if everything goes well, they may only have a doctor visit every month or two. They may get labs once a month or so. And that's a lot less than dialysis where you're either doing dialysis at home every night, or you're coming to a dialysis center three days a week. And those kinds of things interfere with school. They interfere with other activities. You have to have some type of catheter or dialysis access sticking out of your body. And, um, all of those things go away when you have a transplant and it really makes for a wonderful thing for the kids. So Dr. Speaker 0 00:08:53 Palmer, there's been an uptick reported in the number of kids diagnosed with in-stage renal disease, particularly in younger children. At the same time, the number of donors has remained constant and the waiting list is growing. Why do you think this is, and what kind of impact or challenges does this pose for kids on the waiting list as well as for the medical team. And there are numerous Speaker 1 00:09:14 Why we see that there are more kids diagnosed with end stage renal disease. Now, a lot of it has to do with advances in care of kids who were born with congenital anomalies in the NICU, who are able to live in and progress, but may still have chronic challenges. Um, as they grow older, the impact is tough because, um, when they're on the waiting list, the hardest part is it's a waiting list. You don't know when your number is going to come up for some people, this can happen within weeks to a month. And for some people, especially depending on their blood type, it may actually be a year or two. Um, so we, we do everything we can to make sure that they're healthy, they're informed and that we are, we're doing our best job of selecting the best kidney to have a successful outcome for them, uh, so that they can move past this chronic kidney disease where need for dialysis. Speaker 0 00:10:02 So what about living donors? It seems like it would be easy to find a match and a family. Is this not the case. Speaker 1 00:10:09 Owners are an outstanding option. It offers kids who get a kidney transplant, potentially better outcomes necessarily than a typical categoric donor. However, there are challenges with this. Certainly someone in the family has to be a match, but also has to be healthy and make the decision. We had something we'd like to say is something we would all obviously like to have the opportunity and would always be able to do. Um, but there's many reasons why this needs to be someone who is exceptionally healthy, who there is not going to be any negative impact for them so that we can have two very long healthy lives and not where we're trading years on one for years on another. So while absolutely an excellent option and something we always want to pursue when available. Um, that's something we do very conservatively to make sure that there's as much respect for the living donors, health and long-term life, as there is for the person who would be receiving that gift. Speaker 0 00:11:01 So Dr. Gillespie for those kids are lucky enough to receive a donor kidney. What are the short-term and long-term risks versus outcomes for kids after renal transplant? Speaker 2 00:11:11 Well, our outcomes are excellent and we continually meet or exceed national averages on several different measures for transplant outcomes. Our success rates are very high and we're very proud of those. The short term risks are mainly related to rejection of the kidney. When you transplant a kidney into someone, their body recognizes it as a foreign tissue and will try to reject it. It essentially views it as an infection that needs to be eliminated. And so we have to use a complex regimen of medications to turn down the immune system, to prevent the body from rejecting the kidney. And that risk of rejection is highest in the immediate post-transplant period. Over time, the body kind of gets used to having that kidney there and the risk of rejection gets and the amount of medication that we have to use also gets lower. So that's the biggest short-term risk. Speaker 2 00:11:58 Long-term the biggest risk is from chronic infections. Even though we reduce the amount of medication, these children are on immunosuppressive medication for the rest of their lives. And so that increases the risk of certain opportunistic infections, as well as some of the latent infections that people have in their bodies that don't normally cause any problems in a person with a normal immune system, but they can become very active and difficult to control when the immune system suppressed. And so we have protocols for monitoring or those infections, and then treating them accordingly when we need to. Yeah, Speaker 1 00:12:30 I think it's, I think it's important to be said too, that one of the challenges with a kidney transplant, when you can pair two patients on dialysis, is that a patient on dialysis from day to day? It's not like we're going to be in pain. They're not going to go on a major surgery, whereas with a transplant they are. And so a transplant is more like we kind of explain it's more like an investment. There's an upfront cost and long-term benefits. Certainly they're going to be a little bit of discomfort. There is going to be a hospital stay. They are going to be at risk for a pretty significant surgery immediately, but those outcomes when successful, and that's why we have a rigorous evaluation process to select those patients who are going to be most likely to have the best success and do anything we can to reduce their risk prior. Um, and this is where we can have our really excellent outcomes that we see. Speaker 0 00:13:11 So Dr. Pullman for younger patients is this, the only transplant they'll need, or will they require additional kidney transplants as their bodies grow. So Speaker 1 00:13:20 This time, unfortunately for younger patients, we have every expectation that they will need an additional transplant in the future. An excellent outcome for a transplanted kidney would be somewhere between 10 and 15 years. And for kids who are transplanted between the ages of five and 10 or 20 years of age, we certainly have expectations for their life, much, much beyond that. So an additional kidney transplant is definitely at the expectation at what our current abilities are for transplants. It's getting better and better each year. But at this point we're making lots of incremental improvements and it's going to be new technology or new medications or things like that that will allow us to make bigger leaps in which the hopes is they may only need one in the, in the future. Speaker 0 00:14:03 I know that when you're born, the size of your heart is the size of your fist. So for a small child, that's a very small heart because the heart doesn't necessarily grow with, or the heart may grow, but all the parts don't grow is this the same with kidneys, Speaker 1 00:14:16 Kidney? That's the size when you're born grows, as you grow in kids with a kidney transplant, though, it certainly varies a lot between the kids' age, um, who is receiving the kidney transplant and then the age and the size of the kidney that is being donated to them. So often, especially like in living donors, when it's a parent donating to a kid, this is a fully grown adult kidney that we're providing. The kid can benefit that in many ways, because when we provide a donate a kidney, we're only providing one kidney, both of their kidneys are not working. So if it's a really large kidney, they may be getting the benefit of much more than just what kidney their own size would be. However, sometimes if it is an unfortunate where it's a categoric donor or a child has passed away, who is donated, the family has elected to donate their kidneys. There can be situations where that kidney that is donated then can be a great, an excellent fit for some are very smaller patients, but then also grow with them over time. Speaker 0 00:15:11 So Dr. Gillespie, what are the challenges kids who have had a transplant face as they age into the adult healthcare system? Speaker 2 00:15:18 Um, so as these children grow up, they eventually become adults and they have to move into adult life. And just as there are difficulties with transition into other things like adult life, like getting jobs and finding housing and things, having to transition your health care also contributes to that. Um, in many cases, their insurance changes when they reach a certain age and they have to transition from a pediatric transplant program into an adult transplant program. And one of the things that we really tried to educate them on early is about planning for this transition and developing the responsibility in the pediatric world. We hold their hands quite a bit and we send them lots of reminders. We do things for them. We make phone calls for them, all these kinds of things. And we try to explain to them that as adults they're going to have to do that themselves, we also tried to educate their parents to ease them into this responsibility in a sensible way. Speaker 2 00:16:10 We don't want to just stick them out there and set them up to fail that we do want to introduce them to being responsible for some of their own things, taking their medications, scheduling their appointments, going to their appointments, all these kinds of things. And we have a formal transition program for that. And we partnered with an adult transplant program to help to ease the transition. And so we have a meeting regularly with the adult program, and we look at all the patients who are reaching an age where they're about to transition, and we share information between the two and when they're, they're ready for their first appointment with the adult program, our transplant coordinator actually walks them over there to the clinic and introduces them. Speaker 1 00:16:46 And other things that are great about this partnership is that I work not only with our pediatrics program, but also work the adult transplant program there and that the adult surgeons on that side work with us as well. So, uh, there's a lot where they're more familiar with a lot of our patients. And then also in those kids who have, um, unique kind of congenital anomalies or have had surgeries and reconstructions that are more common in pediatrics, but not very common in an adult patient, we can be there as well to help with those understandings and kind of bridge those gaps. So the thing we like to say is when we send them along, we're not sending them alone. We're still in an excellent contact. There's regular communication. And we work together on a near daily basis. Speaker 0 00:17:27 So Dr. Gillespie, knowing that not all children diagnosed with end-stage renal disease are eligible for a transplant. Can you talk a little about why and what options may be available to them? Speaker 2 00:17:39 So while we would like for all of our patients to get a transplant, as you said, for some patients, it's not a good option. Some of the things that can come up would be infections. Um, if they have an infection, we can't give them a transplant and suppress their immune system because the infection would become overwhelming a malignancy. If they're undergoing treatment for cancer, or if they've had recent treatment for cancer, we work with our oncology colleagues. They need to be cancer-free for a good period of time. Typically two years before we go ahead with transplant again, to reduce the risk of reactivating, that malignancy adherence is very important with a transplant. If you don't take your medications and don't come to your appointments and get monitored, your body will reject the kidney and you can lose it. And it's very difficult to get a second transplant. Speaker 2 00:18:25 The first one is always the best one, uh, with each successive one, the risk of rejection is higher. So we want to be sure that families are very, very adherent and that they're going to follow through with the many requirements for transplant that are present in the initial period. And sometimes we need to give families some time to develop that sometimes they need to stabilize some things like maybe they need to relocate closer to the transplant center, or maybe they need to waiting for somebody to finish school or something like that. There's some other diseases that can recur in a transplanted kidney like lupus or FSGS. We want to be sure those things are under very good control. Before we move ahead with the transplant in the small children, they may be physically too small. Generally they have to weigh about 10 kilograms or more to get a transplant because anything smaller than that, they just don't have the physical size to accommodate a transplant. Speaker 2 00:19:15 And so we have to optimize their nutrition and try to get them to grow. And kids with renal failure often have significant growth problems. So it may take them quite a long time to reach that 10 kilogram Mark. And some families just make a choice that they would prefer not to proceed with the transplant. Um, it's not very common, but there are some families who feel very comfortable on dialysis. And if their child is stable and doing well, they may feel like they don't want to rock the boat. And that they'd rather just stay with that. Then go through all the complexities and risks associated with the transplant. Yeah. What we find, Speaker 1 00:19:47 It's not very common that there's a child or a situation that is never going to be possibly for a transplant. There are many times like Dr. Gillespie said that it may not be the right time right now, but as they age, as they move through their illness cycle, as the family caregivers situations change or improve, um, that we, we never kind of say never for anybody it's that right now is not the time we need to optimize the situation and then reevaluate it. Speaker 2 00:20:13 Wait. So what does the future hold Dr. Palmer for pediatric renal transplant patients Speaker 1 00:20:19 Present is really bright, but we have a lot of hopes for the future. There's a lot of interesting and groundbreaking things that are occurring in the lab right now in the forefront. Like always, we want to see that there's new and better medicines that help us reduce the risk for rejection, but while also limiting and decreasing the side effects that put them at risk for infections. So those are always things that we're looking at hoping for. Um, but some of the, even the more exciting things are complete paradigm shifts in which instead of getting a donation from another person that you would be able to grow a kidney or tissue that does the work of a kidney in the lab, and then be able to implant that or transplant that, um, back into yourself current day, we can grow kidney tissue in different types of tissue in a lab situation. But these things are very delicate or still quite a ways away. Unfortunately, from this being a true reality, that's going to impact healthcare, but these are certainly things that are on the horizon. Speaker 2 00:21:17 There's also some very interesting work going on in developing immune tolerance so that patients' bodies will not recognize that kidney is foreign and would be able to just tolerate the kidney without so much medication Speaker 1 00:21:29 Could lead to kids who could get one kidney and have it for life. Speaker 0 00:21:33 Incredible. So what breakthrough would you like to see either of you, both of you in your lifetime? Speaker 1 00:21:40 You always have some good advice for people about being a kidney donor. So I think one thing that is a very tangible, very feasible or ready for action thing right now is that every person, you know, if you've talked to one more person, um, that you choose to be a kidney and organ donor, and this could revolutionize the current people who are here right now, who need a kidney. For sure. Speaker 2 00:22:03 I agree. I mean the most exotic dream would be the ability to synthesize an individual kidney, that they could take a sample of your DNA and make a kidney that was custom made for you. That's probably a long ways off. What we can do today is educate people about donating kidneys, about signing up to be a donor in the event that you pass away and also being a living donor. And both of those are excellent donation options. And when we see that every year, the number of people on the list is getting bigger. While the number of donors is staying the same. It really underscores the need for that. So we really want to get the word out to people. If you'd like to be an organ donor, to talk to your family about it, educate them about what your desires are and your preferences. And you can actually register online. If you go to donate life, Texas on the website, you can actually register right there, online for yourself and indicate your wishes to be an organ donor. Speaker 1 00:22:54 Yeah, it's super easy. You can do it on a mobile. You can do it on a web and it takes less than a minute. Speaker 0 00:22:58 So that's great advice and great suggestion. What thing do people fear most that they need to not fear? So they might sign up. Speaker 2 00:23:05 The biggest fear that I've heard is people think that if they're listed as an organ donor, that doctors won't try to save their lives. And that simply isn't true at all discussion about organ donation does not come up until every possible effort to save the person's life and restore the function of their body has been exhausted. And so I've never in my career seen a situation where doctors said, well, we could help this person, but they're donor. So let's let them go. It's not how it works in order to be able to donate organs, the body has to be functioning. And so it would be contrary to the whole concept of donating organs, if they were not making every effort to help that patient. There's also a lot of misconceptions about organs being stolen. And there are some spectacular urban legends about people's kidneys being ripped out that really don't make any sense scientifically that would not be technically possible. And so I try to educate people about that and clear up those misconceptions. Yeah. Speaker 1 00:24:03 Uh, I think one of the hard ones too, is that unfortunately for people who are not living donors, these do come from a tragic situation where a person is passing away and the family that is going through that grieving process has a lot of other things that they're thinking about at that time. And so if it's not something that that person has talked with their family about before, sometimes they'll say we don't know what they would want. And so it's really important if you go to donate life and sign up, you've expressed what your opinion is. And so your wishes can be honored by those people and by your family. And you can take the burden off of them for having to make this decision, because it's a decision that you've made and the, and it's, and it's going to be respecting what you wanted to happen. Speaker 3 00:24:48 Wow. Well, thank you both so much for taking time out of your day today to talk with us. You're welcome. We're glad to be here. That was a pleasure. We're so glad you could join us today. If you'd like to learn more about this program or any program at KU children's, please visit us at cook children's dot org.