The Latest in Kidney and Liver Transplant Webcast August 14, 2008 Connie Davis, M.D. Robert Carithers, M.D. Introduction

Transcription

1 The Latest in Kidney and Liver Transplant Webcast August 14, 2008 Connie Davis, M.D. Robert Carithers, M.D. Please remember the opinions expressed on Patient Power are not necessarily the views of UW Medicine, their staff, or Patient Power sponsors, Patient Power partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. Introduction Hello, this is Andrew Schorr. Welcome to Patient Power sponsored by UW Medicine. Each time we come together we meet other UW experts and discuss a significant health topic, and one of the topics that has become increasingly important is the need for donated organs, and today we re going to talk about kidneys and liver with two of the leaders at the University of Washington and understand what are the illnesses that are creating this need, how are organs becoming available, how are we trying to increase the available organs and the likelihood that any donated organ when somebody has a transplantation will be not rejected; will be accepted, and somebody can go on to a healthy life; and where is research headed at the University of Washington to make things even better. I d like to introduce our guests. One of them is Director of the Kidney Care Line, and that is a nephrologist, Dr. Connie Davis. Dr. Davis, thank you for being with us. Thank you so much for asking us to participate. Sure, and your counterpart in the liver area and Director of the Liver Care Line is Dr. Robert Carithers. Dr. Carithers thank you for being with us. It s a pleasure to be with you Andrew. Kidney Disease and Transplantation Okay, well let s start this way. Why don t we start with you Dr. Davis? So I know that there s an epidemic of diabetes in America, and I know also that we have a tremendous problem with hypertension, and I know that all of that can have an effect on kidneys. It would seem like that that is causing more advanced kidney disease and the need 1

2 ultimately for maybe more people not just on dialysis but ultimately if they can so they can avoid being on dialysis or get off dialysis have a donated kidney. Did I describe it right, and how big is this problem now? Yes, you did describe it correctly. There is an increase in the number of individuals in our society who have kidney disease. There are approximately 26 million people in the United States who have chronic kidney disease, and that runs between one-in-nine to one-ineleven individuals, and the most common cause of kidney disease is diabetes, and yes hypertension is another cause of kidney disease, and it also increases the progression of kidney disease from other underlying causes. One of the major reasons is the increase in obesity in our society, and alarmingly many of our young children who are obese are starting to manifest some of the signs of kidney disease by having protein in their urine. So when kidneys begin to fail or not function you get to a point, maybe I guess over many years, when you have what s called I think end stage renal disease and that means you may need dialysis or ultimately a transplant? That s correct. The symptoms that go along with this can be pretty insidious. People may not know that they have kidney problems. People feel cold and very tired/listless. They start developing nausea/vomiting and they can lose weight, get muscle cramps, and generally feel just pretty lousy, but as you can tell those are pretty nonspecific symptoms, so the only way to really know what your kidneys are up to is to make sure that when you go in for your checkups you have those kidney numbers checked. All right. So now let s take it to the point where people have all these problems. Their kidneys are failing. One option would be to have dialysis, which is not an insignificant commitment, and many of these people I know hope one day could they have a donated kidney. What is the available of kidneys today, let s say in the Pacific Northwest, and where does donation come in not from someone who died but from someone who s living? In the Pacific Northwest we have, well in King County, I ll put it that way, we have 1200 people on dialysis and then there are many other large units around this state. As far as donation, the best results for somebody with kidney disease is from a kidney transplant. They have less heart disease. They feel better. Their options for transplant come from the deceased donor list or from living donors. 2

3 When we talk about living donors though you usually think well is it from your brother or mother or sister, but aren t you working at the UW to have a more, a wider array of living donor kidneys be available, and I know there s technology being worked on too; I think you call it desensitization, so an organ from someone else won t be rejected? That s absolutely correct. Right now there s been a bit of a change in the dynamics of who donates. In the past it had been mostly family members, but now there are many friends and spouses and other individuals who are stepping forward and even people who we call altruistic or nondirected donors who don t know anybody on the list but they ve just decided to donate. That s one of the new findings and then the other has to do with those people who have antibodies against possible donors. What we re doing is treating their immune system to enable them to decrease those antibody titers so that they can accept these organs that are available. Wow, so we still have an organ shortage for sure, but the idea is can you have more of the organs available from living donors as well as those people who ve decided after death that their organs could be used to try to help those people who are waiting and trying to get off dialysis. Absolutely. Right now there are approximately 80,000 people on the kidney transplant list and only around 17,000 people per year are transplanted. Liver Disease and Transplantation Wow, wow. Well, let s come back to your colleague, Dr. Carithers, who is a hepatologist, a liver specialist, and understand what s going on there. When we talk about liver transplant, what are the illnesses doctor that are leading to this need because I would think like diabetes there are other conditions now that are kind of rampant as well. The most common cause for liver transplantation is hepatitis C. We know that roughly 15% of people who are infected with hepatitis C for 20 years or more will develop cirrhosis and be at risk to develop either liver failure or liver cancer so that in both the United States and Europe slightly over half of all the liver transplants are performed for end stage liver disease due to hepatitis C and another 10-15% are transplanted for liver cancer most of which are due to hepatitis C. Then there are a variety of other diseases which people inherit. There are a number of autoimmune diseases, which can result in liver failure, and hepatitis B if acquired at birth can develop into either liver failure or liver cancer, both of which are indications for transplantation. 3

4 Finally we have a small subset of patients who are perfectly healthy, usually young individuals, who develop a devastating overwhelming illness that we call, fulminate liver failure, in which they become infected with either hepatitis A or hepatitis B or they take either an intentional or an unintentional overdose of medications, which result in liver failure. Oh my. Now we were just hearing from Dr. Davis about the problem of diabetes and hypertension and how that s playing a role, but yet this can go on for many years kind of decreasing the efficiency and the health of the kidneys. How quickly can an illness like hepatitis C affect the liver, and what are the signs when the liver is failing? Again, just as Dr. Davis mentioned, many people with hepatitis C will have relatively few symptoms. Ultimately if they are, and there are many people with hepatitis C who never develop cirrhosis, but of the people who do develop cirrhosis the most common complaints are fatigue and then gradually as the liver begins to fail they will develop swelling of the abdomen, swelling of the ankles, and ultimately develop confusion so that again as Dr. Davis mentioned, many people who have a serious problem with any type of liver disease will be relatively asymptomatic for many, many years. Now we heard about the idea of having someone you know or maybe even someone you don t know who s alive donate one of their kidneys to you should you be in need. What about a living donation in the liver? What role does that play for adults or even for children who have this need? Living related transplantation for children is now a very standard and well accepted procedure. The reason being that only a small portion of the donor organ is required to supply enough liver for a child to have a successful transplant, and as a consequence the risk of the donor operation is very, very low so that throughout the United States in every major liver transplant program it is standard practice now to do living related transplantation for children. In contrast in adults in order to sustain a recipient, more than half of the liver has to be taken, or approximately half of the liver has to be taken from a donor in order to have a successful outcome from the operation. For an adult. For an adult. Unfortunately the donor operation has significant risk, and the outcome of living related transplantation is no better than for a patient to receive cadaveric transplantation. As a consequence of that, the only ethical justification for having a living 4

5 related adult transplant program is if a particular program or area of the country has a significant number of patients dying on the waiting list, then it s easy to justify a living related program. Fortunately in the Pacific Northwest at present, we have an adequate number of donor organs for our liver recipients, and we have very few people who die on the transplant waiting list, and as a consequence of that we have not embarked on an adult livingrelated transplant program here at the U. Organ Donation and Matching All right, now, of course and I know on my driver s license and other people too, they ll indicate that should something happen to us, we become deceased, that our organs could be used. Is there more that we have to do, and I ll ask this first of Dr. Davis, so that if we, something happens to us and we die, that our organs, if you will; kidney, liver, and other organs; could be used. What should we do because there is this shortfall of available organs? The most important thing to do is to do what you have done, and that is to sign your driver s license, and that does carry the power of finality in the decision-making process; however, saying that most of the time we prefer to make sure that the family is in agreement with this, and so the next more important thing to do is to make sure that you ve discussed this decision with your family members. Right, I know there are stories of let s say mom or dad is in intensive care, and maybe they re not going to get out, and they re really just a day or so away from death. That is coming, and then the question comes up and the family members come in maybe from around the country, and they don t have a full understanding or agreement on what mom or dad s wishes were, and I m sure that s very awkward, and maybe the patient is in no position to speak at that point. So I can understand the importance of really discussing it. I think it s particularly important too. There are a number of young people who are very enthusiastic about donating organs and sign the donor cards, and they have their driver s license to indicate that they are an organ donor. I think it s particularly important for young people if they ve made that decision to discuss it with their family and their parents so that the family clearly understands the wishes of the younger person because there are unfortunate situations where a young person clearly wanted to donate organs and the family had not been in discussions on that and refused to consent to the donor organs. And the organ, I know, that s donated may have usefulness for more than one person; certainly in the case of the liver, right? 5

6 Yes. There are a number of situations where because of the anatomy of the liver we can perform more than one transplant with a single donor organ. One of our greatest shortages over the years has been an adequate number of donor organs for children, and one of the ways that we ve addressed that is to whenever we have a very sick child, for example at Children s Hospital, and we retrieve an organ donor for an adult here at the university, if the child is of the appropriate blood type we can take a small portion of the adult donor organ, transplant it into the child and also perform an adult transplant at the university. One other question for you before we go back to Dr. Davis, Dr. Carithers, and that is what s the shortfall of available organs here or nationally when we talk about liver? Connie spoke about it with kidneys, but how far apart are we from answering the need here? Right. In 2007, which is the last year we have complete figures, there were slightly under 6,500 liver transplants performed in the United States and at the same time there were over 16,000 patients waiting for donor organs, so you can see that there is a major discrepancy between the need and the actual supply of donor organs. Right. Okay now, as we talked about in the area of kidney, Dr. Davis, there are people who want to help. You know there was that story we had not that long ago, I believe it was the Starbucks barista who needed a kidney transplant, and a customer was willing to do it, and I ve heard of other examples like that. So here s a question we got in from Bobbie from Klamath Falls, Oregon. Bobbie writes in, What is the process for determining whether I can donate a kidney, and what are the long-term effects on me if I donate one of my kidneys? Those are excellent questions. For the first, one basically calls a transplant center and starts discussions with them. They will go through screening medical questions to see if a person has the risk factors for kidney disease or for other diseases that would make it such that they would need to retain both of their kidneys. If they pass that type of a screening process, then they have blood typing done and then an exam and blood testing and other anatomic testing, like CT scans, and then they are reviewed, evaluated, and their candidacy decided upon. Now one thing that s very important to put into this process is for them to know that now in all programs there is what is called an independent donor advocate that helps to navigate them through this process, make sure that they understand the evaluation process and the results that they get from all their testing. As far as the long-term ramifications to the individual, as long as they have passed through all of the testing, the long-term ramifications are fine. Most people do wonderfully well. The risk of developing kidney failure, as far as we can tell looking at the United 6

7 Network for Organ Sharing and scientific registry data, is approximately 0.1 to 0.5% depending on one s ethnicity, which is at or below the national averages for populations. Now what about insurance? If somebody says I d like to donate a kidney, then does insurance cover the whole process for them as well as the recipient? The recipient s insurance is supposed to cover the medical evaluation costs. Currently it does not cover travel, childcare, or lost wages. If people, however, are in an income bracket where it would cause hardship there are grants that are available, after applying, that one could receive that would help to offset some of those other costs. All right. Now, this is maybe a question for both of you, but how do you do the matching? Does a donor, living or not, have to be the same blood type or somehow genetically matched? Dr. Carithers, how do you do that matching, and maybe you could help us understand, both of you, is it different at all in the case of the liver or the kidney? The liver is the simplest organ of all to match in that the only factors that we look at are the blood type of the donor and the recipient, which have to match, and the body size. We can take a donor organ that is smaller than the recipient, but unfortunately we can t use a donor organ that s too big for a particular recipient so that all of our patients are listed by blood type, their degree of sickness, and their body size, and the matching is done on those three factors. What about in the area of the kidney transplant, that matching, and how are we maybe trying to widen that choice? Matching in the kidney involves not only ABO typing but also tissue typing. The importance of the tissue typing really is for a complete match because what has been found is that those individuals who are a half match or even a no match but a living donor transplant, they all do just as well. The one that really does the best is a complete match, and that would be from a sibling. This compares to the deceased donor list where the survival rates of the deceased donor are approximately 10-20% less than the living donors, but it is the HLA matching, or the antigen matching from the living perspective that is the complete match that gives the best results. From an ABO perspective, they need to match. There are, however, sometimes where you can put what we call an A2 kidney into other recipients. 7

8 Have you started at the UW what I know some places have talked about where let s say if you have two or even three families where the donor for family A may not match that family member that could be a match for someone else, and there s sort of like a shuffling around? Yes, that s the Kidney Paired Donation program, and that s an excellent question. There are programs around the nation that are already established regionally. The national system, the UNOS system, is about ready to start looking into designing a national system. We in the Northwest are just in the infancy in getting this program up off the ground. All the programs within our area are sitting down and putting this together. Hopefully it will be available sometime by the end of this year or early next. Advances in Kidney and Liver Transplantation Dr. Carithers, when you hear Dr. Davis and what she s doing in her area and her teams and your group and the other transplant groups too; heart and lung; how advanced is the UW in your work in transplantation? I think that we re very much at the cutting edge in a number of ways. As with most transplant programs around the country one of the ways that we ve tried to increase donor availability is to use donor organs that in the past we would have considered not to be useful. For example, ten years ago we never took a donor organ from an individual over the age of 50 whereas now it s not unusual for us to accept donor organs from individuals who are even in their early 60s if they are otherwise in good health prior to whatever catastrophic accident cause their need for donation. We ve also developed a new program in which individuals who are not brain dead and not considered candidates for standard organ donation but who are considered to have no hope for continued survival, donation can be done immediately after death once the heart stops beating, and those organs have not been used in many parts of the country, but we have a fairly sophisticated, very effective program done here at the university and at Harborview in which that is another way in which we ve expanded donor organs. The other area that we re all very interested in is trying to find ways to minimize immunosuppression. We know, for example, that there are liver transplant recipients who are still alive 30 and 40 years after their operation. As we look at those patients and what happens to them over an extended period of time, it s very unusual for patients to have problems with the liver after the first year. Virtually all of the complications associated with the transplant are complications related to the immunosuppressive drugs. So we re trying to find, we re working with a number of other institutions to try to find ways to 8

9 minimize the immunosuppression, and there is a theory that in some patients they can actually develop tolerance to the donor organ and not need immunosuppression at all, and that for many of us in transplantation is really the holy grail in trying to find ways in which patients don t have to take immunosuppression at all. Wow. We re involved in a program sponsored by the NIH in which we are trying to accelerate this tolerance and study how well that can be done by minimizing immunosuppression in the first year after the transplant, and we re cautiously optimistic that over time that will have a dramatic improvement of the quality of life of patients after the transplant. Dr. Davis, are you excited where things are headed as well? I am excited because now rather than focus on just the issues of rejection we re focusing on long term and minimizing immunosuppression as Dr. Carithers is discussing such that we can really make sure that people join the mainstream of life. That s our goal to get people back there living their lives the way that they want to. We re also working diligently to increase access to transplantation through the desensitization protocols, those that decrease antibody titers, and also trying to make sure that we understand other types of barriers to donation. We have projects out in multiple communities in our area so that we hopefully will have more awareness of kidney disease and the need for donation, and then we re also working on minimizing immunosuppression treatment of some of the unusual infections that one sees. Ultimately we hope to be able to do transplants without the need for immunosuppression. We re not there yet, but we re working on some projects. All right, I m going to let you each be able to be on your soap box for a minute as the public listens in, and that is starting with you, Dr. Carithers; what would you say to people listening? Maybe their family has been touched by the need for a liver transplant, but maybe not, and so they re just listening and saying, Gee I didn t know much about it. How can I help, and should I help and for them to consider signing one of those cards? What plea would you make to them? I think one of the major myths among the public for many, many years has been the fact that transplants really don t work, they re too expensive, and the outcome of patients is not what anyone would want it to be. That has dramatically changed over the past years. The quality of life of many liver transplant recipients is outstanding. You may have seen that a young man who had a transplant as early as a year after the transplant won a gold medal in the Olympics in snowboarding. We had a young woman who we 9

10 transplanted here who played four years of college basketball starting six months after her transplant, so I think that sending the message that transplants really do work and they dramatically improve the quality of life for individuals, and people can live a perfectly normal life after a transplant. I think when people begin to understand that, and they have the opportunity to see an individual who s had a transplant who s doing well, it completely changes their concept of becoming an organ donor. Wow, Dr. Davis, he said it well but anything you want to add from your point of view? I think the other part of this is making sure that people know their numbers, making sure that they keep those doctor s appointments, and that they keep themselves extremely healthy. Obviously we don t want anything to happen to anyone that s adverse. We want them to all be healthy, but we also would like to decrease the amount of disease that we re seeing, and the one way to do that is to adopt that healthy lifestyle and exercise, and if you have to do the Nintendo and all the finger games, do it while you re rollerblading or something like that. Right I know, and I know each of you as physicians while you re very much involved in transplant if we could limit the type 2 diabetes for sure and now as you mentioned you re seeing that in children if people could monitor their blood pressure and certainly if we could get more of a handle on hepatitis C I know we d, hopefully we wouldn t be getting to the point where these organs were needed quite so much. I want to congratulate you both in your areas and the UW together in your work in transplantation and really being a national leader in this, and I wanted to thank you both for being with us today on Patient Power. Thank you very much. Thank you Andrew. Yes, thank you. That s Dr. Robert Carithers who s Director of the Liver Care Line at the University of Washington and Dr. Connie Davis who is Director of the Kidney Care Line. As always, this is what we do on Patient Power and that is connect you with eminent leaders in medicine to help you understand sometimes very complicated issues and also understand some of the very powerful medical options that are available for you and your family. I m Andrew Schorr. Join us again for our next program, and as always I like to say, knowledge can be the best medicine of all. Thank you for joining us. 10

11 Please remember the opinions expressed on Patient Power are not necessarily the views of UW Medicine, their staff, or Patient Power sponsors, Patient Power partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. 11