Pediatric Kidney Transplant: A Unique View
Go inside the challenging world of pediatric renal transplant with Dr. Robert Gillespie and explore how the unique approach that goes beyond traditional care.
Meet the speakers
Host: Today we're talking with doctor Robert Gillespie and doctor 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. Doctor Gillespie earned his medical degree from the 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 nephrologists and he has actively participated in numerous research studies.In the summers he serves as a camp doctor for Camp Reynal a summer camp for children with kidney diseases.
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 Pediatrics section of pediatric urology, Society of Pediatric Urology, American Academy of Pediatric Urologists, 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.
Dr. Palmer: Our pleasure.
Dr. Gillespie: Yeah thank you.
Host: So, doctor 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 UnitedHealth 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.
Dr. Palmer: So I'm happy to talk about our program here. We're really proud of our team approach, we have a team of dedicated pediatric nephrologists and we work with our pediatric urology team very closely and which myself as a specifically trained in renal transplant a 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 helping out on these patients and these procedures. By having dedicated pediatric surgeons who work with kids all the time, we bring a different aspect and different approach to these kids. They're not just kids with kidney failure their kids first and so were able to take care of them in unique ways that really contribute to things that are different about kids and 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. Many of them are long time urology patients that I get the follow all the way through doing everything we can to prevent the need for transplant but then when it comes time for that, being able to provide that complete circle of care for them. And this also allows us to be very comfortable with the unique aspects of very tiny kids in renal failure who need a transplant which are very foreign and very different for adults surgeons when they when they come across these patients. These are things that are a little different in our program than they are elsewhere that are very specific for pediatric patients.
Host: Thank you. 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 6 and those from 7 to 20 can you elaborate on that?
Dr. Gillespie: Certainly. So in children under 6, the most common cause of kidney failure is congenital anomalies of the urinary tract and and this is something that really distinguishes us from adult programs because as Dr. Palmer's mentioned adults largely developed kidney failure from hypertension and diabetes but in kids these congenital anomalies greatly complicate things 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 the 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, say the 7 to 20 age range they more commonly have auto immune diseases things like focal segmental glomerularsclerosis, hemolytic uremic syndrome, lupus, these kind of things. And so those require a lot of medical treatment and a lot of input from the from the nephrology team and often even rheumatology gets involved as well.
Host: So 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?
Dr. Gillespie: There are so many challenges these families face it's hard to know even where to start but 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’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 how 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 try 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, and we try to bring the siblings in and then educate them on the child's condition. Try to explain to them why the 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 dietitians who help to optimize their nutrition, and, um, first 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 familyies about how wonderful their experiences are here, that all the different things like the Child Life Zone, the parent 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.
Dr. Palmer: Yeah, and one of the other things I think is pretty neat, Dr. Gillespie is being humble about the approach they take, is a lot of kids and a lot of the families talk about the camp experience that they get each year and it's a time where the 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 the best 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 Dr. Gillespie’s brought me along to do that now and they do a great job with them.
Host: So according to the CDC cerebral palsy is the most common motor disability in children about one in 323 children being diagnosed with this condition and yet it seems like there are still a lot of misperceptions around cerebral palsy even in the medical world, can you talk about what those are and why?
Dr. Gillespie: Yes it does and for most patients a 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 their 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 2. 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 3 days a week, and those kind of things interfere with school, they interfere with other activities, you have to have some type of catheter dialysis access sticking out of your body, and all of those things go away when you have a transplant and it really makes for a wonderful thing for the kids.
Host: So Dr. Palmer, there's been an uptick reported in the number of kids diagnosed with end 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?
Dr. Palmer: There are numerous reasons 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 are born with congenital anomalies in the NIU who are able to live and progress but may still have chronic challenges, um, as they grow older. The impact is tough because when they're on the waiting list the hardest part is - it's a waiting list. You don't know when your number's gonna 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 2 so we we do everything we can to make sure that they're healthy, they're informed and that we're we're doing our best job of selecting the best kidney to have a successful outcome for them so that they can move past this chronic kidney disease or need for dialysis.
Dr. Palmer: Living donors are an outstanding option. It offers kids who get a kidney transplant potentially better outcomes necessarily than a typical cadaveric 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 with something we like to say is something we would all obviously like to have the opportunity and would always be able to do, but there's many reasons why this needs to be someone who is exceptionally healthy who it there is not going to be any negative impact for them so that we can have 2 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.
Host: So doctor 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?
Dr. Gillespie: 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 lower and the amount of medication that we have to use also gets lower. So that's the biggest short term risk. Long term the biggest risk is from chronic infections. Even though we reduce the amount of medication these children are on immuno suppressive medication for the rest of their lives and so that increases the risk of certain opportunistic infections as well of 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’s suppressed. And so we have protocols for monitoring for those infections and then treating them accordingly when we need to.
Dr. Palmer: And I think it's I think it's important he said that. One of the challenges with a kidney transplant when you compare to patients on dialysis, is that a patient dialysis from day to day is not likely going to be in pain they're not gonna go into major surgery, whereas with the transplant they are. 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 there’s going to be a little bit of discomfort, there is gonna 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 and this is where we can have a really excellent outcomes that we see.
Host: Dr. Palmer for younger patients is this the only transplant they'll need or will they require additional kidney transplants as their bodies grow?
Dr. Palmer: So at 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 in between the ages of 5 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 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, um, it's going to be new technology or new medications or things like that that will allow us to make bigger leaps and which the hope is they may only need one in the in the future.
Host: 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 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?
Dr. Palmer: The 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 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 during to a kid this is a fully grown adult kidney that we're providing, the kid can benefit from that in many ways because when we provide a donated 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 one kidney their own size would be. However, sometimes if it is an unfortunate, where it’s a cadaveric donor or a child has passed away who is donating and the family has elected to donate their kidneys, there can be situations where that kidney that is donated then, can be a great and excellent fit for some of our very smaller patients but then also grow with them over time.
Host: So Dr. Gillespie, what are the challenges kids who have had a transplant face as they age into the adult health care system?
Dr. Gillespie: 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 of 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 try to educate them on early is about planning for this transition and developing their 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 try to educate their parents to ease them into this responsibility in a sensible way, we don't want to just stick them out there and and set them up to fail, but 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 2 and when are 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.
Dr. Palmer: And other things that are great about this partnership is that I work not only with our pediatrics program but also with the adult transplant program there, and that adult surgeons on that side work with us as well so there's a lot where they're more familiar with a lot of our patients and then also in those kids who have unique kind of conjoined anomalies and 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.
Host: 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?
Dr. Gillespie: So while we would like for all of our patients to get a transplant as you said for some patience it's not a good option. Some of the things that can come up would be infections. If they have an active infection we can't give them a transplant and suppress their immune system because the infection would become aoverwhelming. 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 2 years before we go ahead with transplantm again, to reduce the risk of reactivating that malignancy. Adherence is very important. With a transplant, if you don't take your medications and 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. The first one is always the best one. Now with each successive one, the risk of rejection is higher so we want to be sure that families are very very adherant 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 family 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 be 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 transplants. 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 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 a transplant. 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 thing go through all the complexities and risks associated with the transplant.
Dr. Palmer: Yeah, what we find is it’s not very common that there is a child or situation that is never going to be possible for tranplant. 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, that we never kind of say never for anybody, it's that right now's not the time, we need to optimize the situation and then re-evaluate them.
Host: So what does the future hold, Dr. Palmer, for pediatric renal transplant patients?
Dr. Palmer: The 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 on 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 in decreasing the side effects that put them at risk for infections. So those are always things that we’re looking and hoping for. But some of the even the more exciting things are complete paradigm shifts and 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 and implant that or transplant that back in yourself. Current day, we can grow kidney tissue and different types of tissue in a lab situation but these things are very delicate, we’re still quite a ways away unfortunately from this being a true reality that's going to impact health care but these are certainly things that are on the horizon.
Dr. Gillespie: 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.
Dr. Palmer: And that could lead to kids who could get one kidney and have it for life.
Host: Incredible. So what breakthrough would you like to see either of you, both of you, in your lifetime?
Dr. Palmer: IDr. Gillespie always. has some good advice about being a kidney donor, so I think one thing that is a very tangible, very feasible, ready for action thing right now is that every person you know if you talk to one more person that you choose to be a, a kidney and organ donor and this could revolutionize the current people who are here right now who need a kidney for sure.
Dr. Gillespie: I agree. The most exciting 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.
Dr. Palmer: Yeah, it's super easy. You can do it on mobile you can web, and it takes less than a minute.
Host: That's great advice and a great suggestion. What thing do people fear most that they need to not fear so they might sign up?
Dr. Gillespie: 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 can help this person but they’re a 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, 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.
Dr. Palmer: Yeah, 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 it's going to be respecting what you wanted to happen for yourself.
Host: Well thank you both so much for taking time out of your day today to talk with us.
Dr. Gillespie: You’re welcome we're glad to be here.
Dr. Palmer: Yeah, it was a pleasure
Host: If you'd like to learn more about kidney transplant the Renal Transplant Program here at Cook Children's please visit Cook Children's dot org, and thanks for listening.