Kidney Transplants in Children

the broadcast is now starting all attendees are in listen-only mode good evening and thank you for joining us for tonight’s webinar pediatric transplantation I’m Dave Switzer vice president of education for the pkt foundation and I’m your host for tonight’s webinar our presenter this evening is dr. Thomas Pearson dr. Pearson is the associate director of Emory transplant Center and the director of kidney transplant program at Emory University Hospital in Atlanta during tonight’s webinar dr. Pearson will present his information as he does we asked you to type your questions in the question box on your screen those questions will come to us here at the PKD foundation then as they come in we’ll organize those questions and pose them to dr. Pearson throughout the webinar and we’ll also save some time n to answer questions at the end of the presentation and to keep this webinar interactive we encourage you to send whatever questions you may have at any point during the webinar and we’ll pose them to dr. Pearson as we can now please note however we won’t be able to address any specific questions related to an individual’s specific medical issues but we’ll try to answer as many questions as we can at least in general form so please feel free to ask questions along the way we’re also recording this webinar and we’ll have it posted on the pkt foundation website very soon so with that I’m going to hand it over here to dr. Pearson and dr. Pearson the floor is all yours good evening thank you very much and I like to thank everybody for joining us here tonight and hopefully we could make this as dave says a very interactive discussion as Dave mentioned I’m a transplant surgeon at Emory University here in Atlanta and a transplant surgeon at Children’s Healthcare of Atlanta where we’re very busy and involved in the care of children with end-stage renal disease I’m going to make some general comments tonight see if I can get this to go here there we go on end-stage renal disease and transplantation and again as dave said i would like to make this a very interactive presentation so please forward your questions or comments as we go along and hopefully we can address them as as the presentation progresses so transplant is one of the treatment options for advanced chronic renal failure or end-stage renal disease the other option of course is dialysis each of these treatment options in fact has two sub options within that so for dialysis there is the option of peritoneal dialysis and also for hemodialysis and this is probably a whole topic or discussion in and of itself and and won’t really speak more about that tonight in terms of transplantation we have the option of transplanting kidneys from either living donors or deceased donors but at the outset I think it’s very important to realize that transplantation is a treatment not a cure dialysis is one form of treatment and then obviously continues indefinitely and and transplant is much the same so as compared to other forms of surgery for example gallbladder surgery or hernia surgery where there’s a specific medical issue or medical problem a surgery is performed the skin heals up the patient recovers from that and the and the surgery treatment is essentially done in transplant surgery is a very important and critical part of the treatment but as opposed to these other forms of surgery once the surgical procedures is done the medical management of that transplant kidney continues and that will of course continue for as long as the recipient has the transplant so it’s very much an ongoing treatment anytime there are two treatment options for a specific condition in this case kidney failure it’s very important for patients and their families to understand and the various pluses and minuses of those treatment options to make informed decisions regarding what’s best for that particular person at that particular point in their disease course so many factors may lead to kidney insufficiency or kidney failure and but once one reaches that stage most people with kidney failure will be a candidate for

evaluation for kidney transplantation so I think it’s important to note that a patient with kidney issues kidney problems does not need to be on dialysis to be evaluated for transplant and in fact for those of us working in transplant centers we would much prefer to see patients earlier on in the course of their disease to evaluate them for transplant to get so to speak the ducks in a row and then the patient at that point can be followed by their nephrologists and and when appropriate proceed to transplant so evaluation for transplant doesn’t mean that we necessarily need to immediately proceed to the transplant procedure at that point in time so again most people with with kidney advanced kidney insufficiency or kidney failure would be candidates to be evaluated for transplant what are some of the factors that would preclude transplant well all transplant patients virtually all transplant patients will need immunosuppression to keep that kidney functioning post transplant this immunosuppression that we use to prevent rejection of the transplanted kidney unfortunately inhibits the immune system not only to the transplant which is of course what we want but also to other beneficial aspects of the immune system so this immune inhibition then increases the risk of infection increases the risk of cancer potentially in our transplant recipients so that patients that have active infection or active cancer would probably not at that time be candidates for kidney transplantation and the subsequent immuno suppression that’s needed again transplant is very much an ongoing treatment and so for someone to be successful in that that treatment they need to have the ability to manage in what is many times a complicated medical management scheme and so they need to have the psychosocial mechanisms either themselves or their there are support systems to allow them to successfully manage this this medical treatment protocol in the long term so the psychosocial assessment of the patient is also an important part of evaluation for transplant dr. Pearson we had a question here with the psychosocial that asks that at what ages are is there like a breaking point for the age where that did more in on the child as it would be to the parent or it’s mostly directed straight towards the parent well you know there’s obviously a gradation there so a very very young child would would obviously have to be in an environment where the caregivers were going to provide the social support in the medical support and as one translation translates as the child translates into an adolescent that there would be graded responsibility there’s certainly no absolute age at which that occurs as as you know people mature both physically and emotionally at at different rates but it would be you know all transplant evaluations include a very careful in particular social assessment to make sure that the patient the patient’s caregivers are some combination the above are deemed able to manage this this medical regime post-transplant good thank you probably the the other common reason why someone might not be a candidate for kidney transplant would be if they also had advanced organ failure in some other system for example advanced heart failure advanced lung failure advanced liver failure such that there was concern that either the surgical procedure itself wouldn’t be safe because of this other organ failure or that the the patient’s long-term outcome because of that other organ system failure would limit the the benefit of the transplant procedure there are cases when combined transplants are done so for example if a patient has liver failure and kidney failure that a combined liver and kidney transplant can can be done and this in fact is becoming a more common occurrence in the more recent years so

again these are some of the factors that that we think about in terms of evaluation of patients so again virtually everybody with with kidney advanced kidney insufficiency or kidney failure could be evaluated for transplant and in fact most patients that we see end up being candidates for kidney transplant we had one question here regarding that as far as it says does there need to be a financial guarantee for medications post transplant in order to be approved in the first place so the transplant center needs to be assured that the patient has a means you know both fiscal financial means as well as a again psychosocial support system means to obtain their medicine post transplant because if we put subject the patient to the risk of a surgical procedure the the kidney transplant and then and then the patient doesn’t have the ability to obtain the medicine in the long term post transplant very likely the kidney would be rejected and and the procedure would have been for not so the financial situation obviously is very dependent on the individual patient it’s it varies a great deal geographically so my advice there would be for the four people potential kidney transplant recipients to discuss their particular situation with their particular transplant center and in their environment and understand their particular situation in this regard that you know health insurance is very complicated and very so much individual to individual that it’s hard to make any blanket statement other than the fact that I think all transplant centers would want the recipient to have a means to obtain their medicine in the long term very good thank you so as we mentioned a minute ago there are two types of kidney transplants kidney transplants done from deceased donors this is a situation where the patient is placed on the waiting list for a transplant a just a kidney from a deceased donor becomes available and then as we’ll talk about in a minute through the nationally organized scheme the kidney is offered to this particular patient so in most cases the donors in this situation are brain-dead donors these are donors that have suffered severe head injury which results in them having no brain function and being declared legally dead and the and the kidneys are obtained from these individuals with the permission of their family the other option is living donor and in this situation a living person would have a surgical procedure and donate one of their two kidneys to the recipient this obviously has the advantage of not having to wait on a waiting list being a scheduled procedure and one that can be carried out with with the timing being able to being taken into consideration in terms of the progression of a person’s renal insufficiency so an ideal situation for many people would be if they were pre dialysis with kidney into insufficiency to get evaluated for transplant to get a living donor evaluated for transplant have the recipients nephrologists follow the patient along and when it was thought that they were immediately pre the need of dialysis proceeded to the living donor transplant procedure and in this way the patient doesn’t have a transplant over the transplant treatment before they need it but they avoid the need for dialysis so the actual transplant procedure itself is shown in this diagram here excuse me can I can I back up just a second we had a couple of questions that came in real quick here one of them I think he might have addressed what it said how do you decide between a deceased or a living donor and I think you were basically saying it kind of depends on the availability of a living donor in that regard right so and we’ll talk about this a little more in a couple of minutes but there are very significant advantages for for the recipient for the living donor procedure so in most cases if if the recipient had

a potential living donor that would be a an advantageous treatment for the recipient okay and we had another one here that said how old do you have to be to receive a transplant there’s no absolute minimum age for transplant and our pediatric transplant program at Children’s Healthcare of Atlanta we have a rough guideline that the the child needs to be 10 kilos and in body weight or about 22 pounds the reason for this is for the child to be large enough such that the blood vessels that we would use to sew the kidney into would be larger and and in that sense hopefully reduce the chance for technical complications we do have a little bit of Bend there so if child is near ten kilos but not quite there and there’s and is not growing and as for example difficulty with dialysis then we have eight exceptions and gone a bit smaller than that so there’s no minimum age per se but but we would like that the children to get to about the 10 kilo range to reduce the chances for technical complications okay we had a couple more than I think tie together and kind of the same regard here that says one of them is how far in advance of an anticipated transplant can a donor evaluation take place and then the other question – kind of tied into that at what percentage failure should we start testing for living donors yeah those are excellent questions so you know it kind of depends on individual situations so I I think it’s generally better to err err early rather than late because oftentimes when we start down the evaluation of a potential living donor we find you know a somebody who we thought was going to be the living donor doesn’t work out and then we have to go to evaluate another living donor or we find something in a potential living donor that needs further evaluation and that patient and that takes time so I in general I would err err on the side of earlier evaluation rather than later some of this – depends on the recipient and and how rapid the if they’re pre dialysis how rapid – the rate of progression of the kidney dysfunction is proceeding and that would be something that I would encourage individual people to talk to they’re individual nephrologists to come up with an estimate in that regard okay okay well generally we we would you know evaluate if we talk about includes which is roughly a percentage of normal kidney function when somebody gets to 30% or so particularly if their function is going down fairly rapidly we would be happy to see the potential recipient at that point in beginning evaluation of the recipient and then and then at that time would be an appropriate time to evaluate potential donors as well okay and kind of last this one more question on this and then let you move on here we had a couple of questions about compatibility and in terms of how is compatibility among the donor and the recipient evaluated in terms of of markers or just trying to figure out if they’re a good match so probably the most important thing is to have a living living donor as opposed to how good the actual marker matches to do the transplant the donor and the recipient have to be blood type compatible that doesn’t mean exactly blood type the same and I’m going to show you a diagram in a minute that shows what the acceptable combinations are and they have to and the recipient has to not have antibody directed to that particular donor called we often hear people talk about this as anti HLA antibody or a PRA panel reactive antibody so the recipient has to not have those antibodies directed at the donor in order to be in a good situation for living donor combination transplant great thank you so in terms of the surgical procedure itself we take a donor kidney here with a blood vessel called an artery that carries blood into the kidney and a vein that carries blood out of the kidney and then the ureter which carries the urine out of the kidney so this kidney is

surgically removed either from a living donor or from someone who’s died and then sorry is brought to the recipient operating room we generally do not remove the individuals own deceit disease kidneys but rather put the new kidney into these blood vessels down here in the recipients pelvis and and children that are bigger and in adults we do this to these large blood vessels down here that are going to the leg and the very small children we would do the hook up to these blood vessels the aorta and the inferior vena cava in the abdomen of the child and then the seems to have a mind of its own then the the ureter draining the urine out of the kidney is Sun directly into the recipients bladder so that after the transplant they would make urine just as they did with their own kidneys so any specific indications we would remove the recipients kidneys if they were infected if they and the for example in the case of polycystic kidney disease if they were bleeding or the cysts were cause of rupturing and causing a lot of pain or if the kidneys were so large as to make it difficult to eat and breathe or move then those would be specific indications to remove the patient’s own kidneys either before at the time of or after the transplant procedure we had we had a question along those lines that says what happens to the diseased kidneys if you do leave them in could it potentially cause any problems down the road well they do you know one of the frequent questions that were asked is can the disease jump from the old kidneys to the new kidneys and the and the simple answer to that is is no for example polycystic kidney disease does not move from the old kidney to the to the transplanted kidney and so removing the kidneys are not more removing the kidneys doesn’t have any impact on that on other diseases that are systemic you know system body-wide does that can affect the kidney for example lupus or glomerular nephritis some of those diseases can come back in the transplant kidney but whether we remove the patient’s own kidneys are not doesn’t impact on that on the risk of that great thank you so recovery after the transplant procedure itself so the the kidney transplants and children and adults are done with general anesthesia so the recipient is put to sleep the operative time the time the surgery takes itself is generally in the two to three hour kind of timeframe the children are usually in the hospital and the about five day time frame post transplant and then once they’re discharged from the hospital that would be followed very carefully in the transplant clinic and very intensely followed early post transplant and and the reason for this is to monitor the function the early function of the transplanted kidney to adjust the immunosuppressive medicine some of the medicines we use to suppress the immune response and keep the kidney from being rejected have tight limits in terms of trying to get the right level of the drug in the in the blood and that requires frequent checking and then and then we follow the patients very closely early post transplant for the first several months because this is the highest risk for having a rejection episode or infectious complications after the transplant so a lot of it the careful monitoring again is to follow the function of the kidney to follow the level of immunosuppression and try and optimize that to reduce the risk of rejection episodes while at the same time on the other hand trying to minimize the risk of infection so most patients post transplant on medicines or all patients essentially are on medicines for immunosuppression most patients are on medicines to try and prevent infections and and most patients or many patients are on anti hypertensive medicines so one of the frequent questions we get fryer to transplant is if I’m on medicine for high blood pressure coming into transplant will I be on medicine for high blood pressure after transplant and the general answer to that is yes you

likely will be the medicines may be different dose or different actual medicines but in general transplant doesn’t make high blood pressure or hypertension go away and and so again this post transplant period is to try and optimize the immunosuppression and optimize the the outcome of the patients in the long term as patients get farther away from transplant you know the three months six month one year time point they they tend to settle in and while they always need followup with the transplant center the frequency of that follow-up would become considerably less so living donor transplant and we talked about a little bit about this a few minutes ago but basically there is a very significant advantage to living donor transplant to the to the recipient compared to a kidney from a deceased donor transplant the we mentioned earlier one advantage to this is the ability to time the procedure which is especially advantageous when patients are pre dials has come in to transplant it avoids the need for waiting on the waiting list the anxiety of being on the waiting list and never known exactly when you’re going to be called it allows one to better plan and control one’s life while those are very significant advantages probably one of the greatest or probably the greatest advance of living to her kidney transplant over deceased on her as the life expectancy of the transplanted kidney being significantly better with a kidney from a living donor compared to a kidney from a deceased donor and this is particularly important in the in the pediatric situation where regardless of the type of transplant that that one gets just on averages the recipient would live longer than the transplanted kidney so if you have somebody who’s five years or ten years old and in need of a transplant if they can get a kidney that would last 20 or 30 years and carry them into the mid-range of their life they’re going to be much better off than if they get for example a deceased donor kidney that works you know five or ten years and now they’re a teenager and they need it in need of another transplant and every while we can do second transplants and third transplants and even fourth transplants every subsequent transplant becomes technically more difficult and the average life expectancy of each subsequent transplant becomes less so again if we can do a living donor transplant and a child and have that kidney last decades we feel they’re going to be much better off over the their whole life expectancy then and a shorter duration of survival from a kidney from a deceased donor dr. Pearson we had a question here someone asked is there a limitation in a number of years the differences between patients that there needs to be or between the donor and a recent owner and recipient right right no no the donor needs to be at least 18 years old because they have to be able to legally consent for the procedure themselves as opposed to have an adult say that you know this minor is going to give a kidney to somebody else so they have to be at least 18 years old but once they’re over 18 and able to legally consent themselves there’s there’s no absolute age criteria for the donor or absolute age to scrub in see between the donor and the recipient obviously as we all get older the likelihood that one going through evaluation for living donor and being healthy enough and having good enough function of the kidney becomes less so it’s it’s rather unusual to have a living donor who’s you know over 65 years old or so I was gonna say in relationship to that to somebody asked is is size wise can an adult you know a larger kidney potentially give to a smaller child or limitations as well there’s no so we very frequently would transplant a parents kidney into a small for example a 10 kilo child a 22 pound child and and so there that is not a limitation you can transplant an adult kidney into a small child okay and one

more thing tied to this here – we had a question with ADPKD families at what age are you certain the potential living donor doesn’t have the disease and can safely donate yes oh that’s that’s a great question and and certainly very pertinent to the to the PKD families there there are very good established criteria in terms of the age of the person and the number assists that are identified either on ultrasound or CT scan or MRI imaging and you know being able to on the basis of the number of cysts and the age of the patients say at a particular point that the risk of them ultimately having PKD themselves is virtually non-existent I honestly can’t remember those exact number assists a number of an age of the patient off the top of my head at the moment but that would be something that you could discuss with your nephrologist particularly neurologists as an interesting and PKD there also of course is potentially genetic testing but that has the cost factors involved and obviously doesn’t apply in some particular situation so what’s used in a practical sense and we work with one of our adult nephrologists who specializes in PKD to make judgments about number assists and age of the patients and their particular PKD and when it would be safe to be sure that they weren’t going to get the disease themselves right so that’s not it I’m sorry that’s not a concrete quantitative direct answer to your question but hopefully that’s helpful we had another one that was a slightly related here what was related to peak ad – they were talking about with the recessive form autosomal recessive PKD child can a parent donate to them I’m I’m gonna defer that okay I can’t answer that exactly directly so rather than guesstimate at an answer I’m gonna just say I’m not sure okay we’ll see what we can find out on this end thank you okay so again the other option other than living donation is a kidney from a deceased donor the old terminology that was used for this was cadaveric donor so you may hear that terminology used for this situation as well and as we mentioned earlier this is a situation where there’s generally a brain-dead individual that his family elects to donate their organs and then the organs are allocated via a national system so many people have questions or uncertainty about this and this is actually quite an alphabet soup of all the organizations that are involved in this process but they think the big picture important points around this is that the system by which kidneys from deceased donors are allocated for transplant is a national system and it was actually came out of some federal legislation that was passed in 1984 that established the OPTN the organ procurement and Transplant Network this is a federal agency and basically they let the contract to the organization which runs organ acquisition and allocation in this country in the organization that has had that contract ever since this has been in place is the United Network for Organ Sharing which is based in Richmond Virginia often referred to as you knows and this is the organization that allocates kidneys for transplant in the United States so I think it’s important to realize that a particular Transplant Center or a particular location can’t just arbitrarily decide how they want to allocate kidneys for transplant in their area that this is governed by a national system unfortunately or I guess as a matter of reality there is a huge discrepancy between supply and demand some much much greater need than there is supply and that discrepancy between supply and demand of kidneys available for transplant continues to get worse to widen and this makes it ever hard ever more difficult to determine what is quote-unquote fair in terms of

allocating kidneys there is currently a proposal out for public comment to make some alterations to the way in which kidneys are allocated for transplant in this country and I would encourage everybody to go on to the Yunus website which is Yunus org and those proposed policy changes are there you can read those and and certainly feel free to make and then to participate in the public comment regarding what the proposed changes for kidney allocation are in terms of average waiting time on the deceased donor list for a kidney transplant that’s a extremely hard thing to say it depends on many different factors including what your blood type what might be what the level of your antibody is the higher the antibody you have the harder it becomes to find a kidney that’s that’s a good match and that you could accept for transplant it depends somewhat on the region of the country you’re in and so all of these factors come into play I think it’s fair to say that from for most patients in most areas of the country it’s better to think of average waiting time in terms of years rather than than weeks or months and again unfortunately the waiting times continue to get longer and longer one thing that is very important for paediatric kidney transplantation is that there is a in the current allocation there is a scheme or there is a provision which allows preferential off offering of kidneys from deceased donors that are under 35 years old to recipients on the waiting list that were 17 years old or younger at the time they were listed and the and the rationale from this is to get kidneys from quote unquote good young donors young people who have unfortunately died and now donating their kidneys to get those kidneys to children in need of the kidneys with with the rationale that the children have long life expectancies and would benefit from the estimated long time duration of function of these transplanted kidneys from deceased donors so there are some instances where children on the waiting list for a deceased donor can get transplanted rather quickly with a deceased donor based on this preferential placement of kidneys from young deceased donors to to children on the waiting list so the testing of live donors basically the goal of the evaluation process for live donors is to determine to the best of our ability that the surgery on the live donor would be something that would be safe for the diner obviously the the goal here is do no harm and to make sure to the best of our ability that the very generous living donor would safely come through the surgical procedure itself and not only that but that they would be fine with one functioning kidney in the long term compared to two functioning kidneys also of course part of the donor evaluation is we would like to make sure that the kidney that we would remove and Transplant into the recipient would be a kidney with good and excellent function so that that recipient could expect a very long duration of function of that transplanted living donor kidney so basically the tests that are done or to assess the overall health of the the living donor to make sure again that the surgery would be safe tests to assess the function of their kidneys and then tests to look at and and evaluate the particular anatomy of their kidneys in terms of their their blood vessels and the ureter the the tube carrying the urine out of the kidney to make sure that they’re not complicating factors there that would increase the risk of of the kidney not working in the recipient or potentially cause problems to the donor so all the testing that’s done is designed to address these goals listed

on this slide here so what blood types can donate to wet blood types this is the table I mentioned a few minutes ago so if you have an O blood type you can you’re able to receive a kidney from only from an O blood type which you could donate to all the different blood types and then if you’re an a B you could receive a kidney from basically all the blood types and so in terms of if you need a kidney certainly having an a B blood type is the most advantageous and actually the waiting time on the deceased donor waiting list tends to be short for the a B blood types and but if you’re an O blood type from a blood type perspective you could donate a kidney to essentially anyone any of the different blood types so another factor that you may have heard of is paired exchange programs this is a system that’s developed over the last several years to try and increase the availability of living donor kidneys for transplant and this would be a situation where if I needed a kidney transplant and my brother was willing and medically abled to give a kidney to me but didn’t match me for some reason either a blood type reason or an antibody reason and there was somebody else that had a similar situation with their brother it could be arranged that their brother gave a kidney to me and my brother gave a kidney to the other recipient in need that’s the simplest form of paired exchanges and obviously can get as I’m sure people have seen from reading The New York Times and other publications can get very complicated with chains and and more elaborate exchanges basically these systems can work both locally regionally and nationally so there are transplant centers that have large enough numbers of patience and within their own transplant center can arrange parrot exchanges and they’re also now developing other networks and systems regionally and nationally to facilitate parrot exchanges or chains of transplants amongst varying transplant centers there’s certainly no reason why this couldn’t work with children as well in terms of children being able to participate in paired exchange programs they’re probably one excellent place to start for information on parrot exchanges would be to talk to your particular transplant center that you’re involved in and and what programs they participate in again if you go to the unis website unis org there’s information there and jumping-off points there in terms of information about parrot exchanges so that was the comments that I wanted to make tonight and it’s there have been great questions that have come in during the course of this and I’m certainly happy to at this point entertain other comments or questions or hopefully have fruitful discussion that’s great we’ve had several other questions come in through this and and will will pose this these to you and you can answer them and we’ll go from there actually one of the things I’m going to refer back to a question that somebody asked about the ARP KT child and can a parent donate to them one of the other folks watching the webinar tonight is a doctor dr. Sharon Perlman at all Children’s Hospital in st. Petersburg Florida and she said absolutely parents can donate that for an ARP Kady child so I guess we ask and we shall receive on that information so it’s always great to have pediatric nephrologist participate yes it is so and we appreciate her or chiming in on that we did have a question here about how long does the evaluation process take for the child approved for a kidney transplant so the question was related to evaluation of the recipient yes so you know that would vary from program to program and certainly vary on how the particular child was you know in most situations or there shouldn’t be any medical reason you know I should say in straightforward medical situations that that couldn’t be done over a period of several weeks as

opposed to months or years okay and kind of maybe tied to that at the same time we had a question of how many potential donors can be tested at one time and again that would probably depend on the the policy of individual transplant center that you were involved with you know there’s no medical reason that a large number of donors couldn’t be evaluated simultaneously the the issue we get into there is the just the logistical issue of the transplant center has X amount of resource and trying to find a living donor for the maximum number of patients you know if a hundred people came forward all wanting to donate to one particular individual I think most transplant centers would try and prioritize or strategize and and workup you know the most likely people first rather than trying to simultaneously evaluate many different individuals at once sure a question here how many waiting lists can one patient be on an infinite number so there is no reason why somebody can’t be on you know multiple weighing lists and in different geographic areas and the relative advantage of that would depend on the individuals particular situation so if somebody who has you know depending on again there is there is regional variability in terms of wait times so one good thing about transplant is that there is a great deal of public information about transplant so you can go onto the the web page and find out average waiting times graph survival rate patient survival rate at individual transplant centers so you can for example look up kidney transplant at Children’s Healthcare of Atlanta and see how we do in terms of waiting time and and survival rate some things and so a patient or patients family would be able to use those data to to decide if there would be a potential advantage to get listed in another area that for example might have a shorter waiting time I think some of the relative advantage of that again depends on the patient’s particular situation if they have a very very high level of antibody such as it’s going to take a very well-matched kidney to to do the transplant and the then being on multiple waiting lists may not have a huge amount of advantage if on the other hand they have a very low level of antibodies and they happen to be on a waiting list in a place that has a long waiting time there could be advantage to being listed or getting on the waiting list and another center that has shorter waiting time very good we have a resource available that if people want to look at as you mentioned the various graph survivals and and procedures and all that on on the site kidney link org that’s a site that the foundation put together to help people with kidney transplants it talks about a great deal of the things that you talked about here today dr. Pearson and you can actually there’s what we call a transplant center locator on there and you can just type in your zip code and it will show you all the transplant centers that are within your region and it has about 15 different statistics for the various centers all you know so you can compare one Center to another if you want to do that or at least you can find out what what their various stats are on a number of different procedures so that’s available out there on on kidney link not org we had another question here that said and I think you mentioned this earlier when the evaluation usually starts when the renal function is near what percent that you would start to be looking at evaluations yeah again there could be some variation transplant center to transplant center and again and again one of the important things is how fast the the kidney function is declining but I think anytime it’s below 30% it’s probably not unreasonable to think about getting the process in order to get evaluated for transplant okay and again being you know making a step in being evaluated for transplant doesn’t mean that you’re necessarily going to proceed to transplant you know rapidly it means you have things in order and that if and when you get to the point of needing the kidney replacement therapy that that you’d have

things in order to proceed to transplant especially if you have a living donor okay we had a couple of questions I think are along the same line here is one of them is do you require evaluation of a potential living donor if available before listing for a deceased donor and then kind of a related question is does my child have to be on the transplant waiting list if we have a living donor so you don’t need a living donor to be on the waiting list for a deceased donor and you do not have to be on the waiting list to receive a living donor transplant okay I had a question a couple of questions here kind of post transplants are there any side effects from taking immunosuppressants for a long period of time the short answer to that is yes you know the medicines we use for preventing rejection of the kidney the immunosuppression medicines are very good and they continue to get better we the transplant community are much better at this now than we were twenty or thirty years ago but like any medicine being an aspirin being an antibiotic be it anything you always get some risk with the with the benefit and the basic strategy and immunosuppression and transplantation is to use a combination of medicines one of the rationales for that is that we can use lower doses of each of the individual medicines to hopefully minimize the side effects that are potentially associated with that particular medicine but wouldn’t we add up all the medicines together we get enough immunosuppression to prevent rejection overall the biggest risks of these immunosuppressive agents we use in transplant or that they’re immunosuppressive so again they knock down the immune system which is good in terms of preventing rejection of the transplanted kidney but it’s not so good in terms of the good things the immune system does for us like prevent or reduce the risk of infection and reduce the risk of cancers in particular some of the blood type cancers like lymphoma so people on immunosuppression transplant recipients on immunosuppression in the long term are at increased risk for infection increased risk for some kinds of cancer compared to people not on immunosuppression and that’s one of the major probably the major downside of transplant as a therapy for end organ failure okay this question might tie into that too then with the immunosuppressants and and the question is how does pediatric transplantation affect the growth and development of an infant or toddler or preschooler so this is one of the the big issues in pediatric transplantation particularly the use of steroids so obviously children with kidney failure often time don’t grow at a rate compared to children without kidney failure but even once transplanted there’s the concern that the in particularly the chronic use of steroids in pediatric transplant sibian swell limit or reduce the the rate of growth there are immunosuppressive strategies this has been studied a good bit and kidney transplantation that avoid the use of steroids with with this is a particular advantage the growth as a particular advantage and so steroid free immunosuppressive protocols in pediatric transplant are out there and I just would encourage patients and families to discuss their particular situation with their particular transplant center in that regard okay this one is is kind of related but not necessarily is how is physical activity affected in a child after a transplant children as I’m sure everybody on the line knows are amazing and they tend to bounce back from surgical procedures and the insults that we do to treat them and an amazing rate and amazingly faster than an adult so you know children are can be up and about and the day after the transplant or the certainly within a couple days of transplant many are kind of back to routine getting about activity within you know a week or two we for the sake of healing of the surgical incision would not want children or adults to do strenuous you know activity that puts

strain on the incision for six weeks or so after transplant but in the long term you know many children leave very physically active lives one of the the frequent things that comes up in terms of parents and questions you know involving transplant is what level of physical activity or particular things like sports can can children do post transplant and I don’t think there’s any hundred-percent right answer there I think it depends on how important that particular activity is to the person and the risk which one is willing to assume and so you know the question can my child play this sport or play that sport or things like that I would encourage the families to talk and get advice from their particular transplant center very good head um a question here that says what is the average lifespan of an infant who has received a kidney transplant I’m sure that’s probably very variable but are there any generalities with that yeah I I think there there’s so many variables there that it’s kind of hard to make any blanket statement so I me in the to avoid misleading anybody I think I’m I’m just gonna have to say that’s kind of too complex to put a specific number on sure understood kind of bouncing back to the recovery periods for the kids we had a questionnaire what’s a recovery period for the living donor yeah that’s a great question so most transplant centers now I think do the the living donor procedure with laparoscopic techniques so as opposed you know 20 years ago most of us made a large flank incision open incision to take the kidney out now we use video guided scopes which result in much smaller incisions we obviously have to make an incision big enough to get the kidney out but then can use other smaller incisions to facilitate the dissection most of our living donors are go home from the hospital on about the second post surgery day many of these people are back to their normal kind of activities especially if they do desk work or non physical labor in two weeks or so post donation if people do manual labor heavy lifting kinds of things then they wouldn’t need need to avoid that for six weeks again to allow the the surgical incisions to heal up I think the difference between the laparoscopic and technique that most centers use now and the open procedure is that people are much much better off and better back to their normal daily activities in the kind of two week to four week time frame post transplant compared to what they had been with a with the open procedure very good as our time wraps up here I have I have time for one more question we’ve had a lot of great questions here but I’ve got I’ve got time for one more here and I think it’s a good one to end on for this group here it says what is available or what options are there for a caregiver or a parent to help their child deal or cope with the anxiety that comes before and after the surgery or a transplant here I you know I would strongly encourage the families to work with their individual transplant centers all all transplant centers will have nurse coordinators will have social workers will have in in many cases mental health providers you know which are all great resources in terms of that would understand your particular situation and then know the resources available in your particular community or environment to help with that so transplant centers are are extremely multidisciplinary and by nature we all work together as a team within the center and certainly a hugely important part of the team is the the psychosocial component of the team and that would be the resource that I would recommend going to to address those needs very good and that’s an excellent question and answer to wrap things up on and we had some terrific question we had a great presentation dr. Pearson thank you very much for that thank you to everybody for posing their questions this evening again some fascinating questions being asked and answered here we’re glad everybody could join us additionally for further information about other issues related to polycystic

kidney disease 24 hours a day you can visit the PKD cure org website as I mentioned for transplant issues there’s also the kidney link org website that has a lot of information about many of the things dr. Pearson has talked about this evening and finally if you find presentations like this helpful for PKD education or just education about the kidneys in general please consider a donation to the organization you can do that at PK DQ org your support helps us offer programs like this and fund research to find a treatment in a cure for PK d so with that I’ll say thank you dr. Pearson thank you everyone for joining us this evening and have a great night