 Well, hello everyone. Thank you for joining our webcast today to learn more about living donor kidney transplant. The goal is to end the wait and to start living your best life. I'm Silky Niederhaus. I'm one of the kidney transplant surgeons at the University of Maryland and also a two-time kidney recipient. So today, our hope is that we can share with you some tips and tricks to find a living kidney donor and to start living your best life. There are two options for patients with kidney failure. The more common option is dialysis, either in the form of hemodialysis or peritoneal dialysis. In both forms, we try artificially remove some of the toxins and waste products that result from the metabolism from the body. But in no way, either of them can do the job that a normal functioning kidney does. And that's why, as the patients remain on dialysis, the longer they continue on dialysis, the worse their health becomes. And the different organs develop effects of dialysis and they become dysfunctional. In addition, dialysis each treatment takes several hours. And after dialysis, often time, the patients are very tired, worn out, and they can function. So dialysis takes a big chunk of the life for a normal functioning person. The other option is kidney transplant. The patient receives a healthy functioning kidney. And the kidney does what the kidney is supposed to do. There are two sources of the kidney. It can come from a deceased donor or it can come from a living donor. Now, one might ask, what's the difference between dialysis and transplant and why should we care about it? Let me make it simple. If we look at the longevity and survival after each option, we can easily answer that question. Let's say if we take a group of patients who start dialysis and we watch them over time. In the dialysis patients, unfortunately, if we watch them for five years, about 60% of them will lose their lives during this time. In other words, if we have 10 patients on dialysis, after five years, only four of them will be still surviving. On the other hand, with transplant, if you take a group of patients who receive kidney transplant and watch them afterwards, only 20% of them will lose their lives over the subsequent five years. In other words, out of 10 patients who get transplant, eight of them will be surviving beyond five years with the transplantation. So it's a huge difference. Twice as many patients will be surviving more than five years with transplant compared to dialysis. So I think it is a very convincing argument in favor of transplant over dialysis. In addition to the lifestyle that I mentioned before, that with dialysis the lifestyle is severely impaired compared to transplant where the patient runs a normal life and normal activities and they go back to work and are fully functional. Now, one may ask what is the difference between the disease donor kidney and living donor kidney transplant? Again, I can use the numbers as a nephrologist we like to play around with numbers. Currently, there are about 500,000 patients on dialysis in the country. Out of these 500,000 patients, about 100,000 of them have been evaluated and are on transplant waiting list. So we have 100,000 patients waiting on the site. If you look at the other side of the equation, unfortunately, we only have about 11,000 donors every year who donate kidneys to be transplanted to these patients. And from those 11,000 patients, about 16,000 patients get a kidney transplant every year. So we have a huge gap between the number of the patients waiting for transplant and need organs and the number of the kidneys available for transplant. And this gap is going to continue to become wider because more patients develop kidney failure and require dialysis and transplant. And with the new regulations by CMS, the nephrologists also obligated to refer more of their dialysis patients for evaluation for transplant. So this number is going to become wider constantly. Now, let's look at the impact of this gap on the waiting time on the disease donor kidney transplant. The waiting time to a large extent depends on the blood type. The shortest waiting time is with blood type AB. Blood type AB is the least common type of blood type. It's only present in about 5% of the population. So in this group, the waiting time could be as short as 2 to 3 years. On the other hand, patients with blood type O, which is the most common type of blood type, about half of the population, they can get kidney only from blood type O. So they have to wait much longer, and this waiting time could be beyond 7 to 8 years. So it is a long waiting time, and as I said, the longer the patients remain on dialysis, the worse their health becomes. And in some patients, after a few years on the waiting list, unfortunately their health becomes so bad that they have to be removed, and they can't be getting kidney transplant anymore. Now if you compare with the living donor transplant, the waiting could be as short as few weeks to few months. That's all the time we need to evaluate the patient and also the donor to make sure that the donor is healthy and can give a kidney. So again, there is a huge difference between the waiting for a kidney from a living donor and several years of waiting for a deceased donor. Now let's look at some other benefits of living donor transplantation. The surgery is scheduled, so everything is planned ahead of time, everything is in place, and like any other elective surgery, everything is controlled. So that's one advantage. In contrast to deceased donor, that you may get called in the middle of the night to drop everything and get yourself to hospital to get the surgery. In addition, the living donor kidney almost always works right away, and the kidney starts making urine right on the operating table. But deceased donor transplant often takes time. The kidney gets a shock from being in a cold environment to be transferred from the place that the donor was to the hospital that the recipient is going to get transplanted. Sometimes the patients need dialysis for a few days and in some patients a few months before the kidney starts working and we can stop dialysis. Again, that's a big difference. More importantly, the living donor kidney lasts much longer. The average time for a deceased donor that works is about 8-9 years. In contrast, the living donor kidney lasts on average more than 14-15 years. Again, that's a huge difference between the living donor kidney and deceased donor kidney. I think I've made a good case for why transplant is better than dialysis and why the living donor transplant is much better than a deceased donor transplant. One concern that always comes up by the patients is if kidney donation is going to hurt the kidney donor. So one of the most important things to know is that the donor's health is really our main priority. None of us want a donor to give away a kidney and then end up with kidney failure later. So very important for that reason is the living donor team. So similar to the recipient evaluation, the donors have a whole team of people that take care of them to make sure that their health is in really good order and that their chance of developing kidney failure in the long term is very, very low. And because of that, the risk of kidney failure in our donor's long term is indeed very, very low. Only about 1 out of 10,000, 1 out of 30,000 people who donate a kidney may develop kidney disease in their whole lifetime. Lastly, our donors also have the advantage of getting to have laparoscopic or robotic surgery. So that means very small incisions and very little pain after surgery compared to the large incision that people use to use for kidney donation and that our transplant recipients still need in order to receive their kidney. Most donors can go home after surgery in about one or two days time and many times their incision will be hidden just inside their belly button. Now the next question, what if my donor is not a match? The important thing to know is that really you don't need to worry if your donor is a match or not. What you do need to worry about is finding a donor who is healthy enough to be a donor, who is old enough to be a donor and who is willing to be a donor. And if those three things are met, whether they're a friend or family or a perfect stranger, if they're over 18, if they're healthy enough to donate and willing to donate, then we have ways to make a transplant happen. Donors do not have to be friends or family for kidney and they don't have to be a blood type match. So we have many options to get and find a good kidney for you. Now in cases when the donor is not a match or not the right blood type for you or there's some other issue preventing you from getting your family member, your friends or your strangers kidney, then we do what's called a paired kidney exchange. And in a paired kidney exchange you can imagine different people wanting to donate their kidneys to their friends or family members. Now if you have donor A wanting to give a kidney to recipient A and donor B wanting to give a kidney to recipient B. But for some reason those transplants wouldn't work because of antibodies or blood type incompatibility or for any other reason. Well in that case we have a little program and a little plan where we just swap the kidneys out. And in that case donor A can donate to recipient B and donor B can donate to recipient A and all of a sudden two people who had healthy donors but not matching donors were able to get a kidney that matched them just because other people were willing to share. So my first kidney transplant was actually from a donor like that except it was a group of four donors who didn't match their own four recipients and it became a whole big complicated swap. And here in this next picture you can see me with my kidney donor whose kidney is now in me, Felicia. We met afterwards because sometimes when donors and recipients both want to meet each other we do make that happen and I'm taking really good care of Felicia's kidney but I cannot ever tell her how thankful I am to be back to my usual good health. Now there are some benefits to paired kidney donation and the first one is that like any other living donor transplant it's a scheduled operation. So you can plan what day, what month, what year, what time in life is really convenient for both the donor and the recipient to move forward with surgery and it's not nighttime and it's not last minute and it doesn't really disrupt any plans for your paired kidney exchange transplant. Number two, a huge benefit of paired kidney exchange is really that you can help someone else who needs a kidney transplant. So for example, your donor whose blood group oh, maybe a match for you but they may be a very unique match for someone else who has not been able to get transplanted for a very, very long time because they're so difficult to find a match for and if their other donor would be a match for you then you have helped this other person who's been waiting for a long time get a kidney transplant. So paired kidney transplants are wonderful even if you yourself don't need it you may be able to really make someone else's day by helping to get them transplanted. And lastly for paired kidney exchange the surgeries are all scheduled at around the same time and with that it means that you know on the same day if everyone's having surgery no one knows who's going first who's going last it's at the same time so the chance of a donor backing out is really extremely remote and I don't recall that ever having happened even around here. So the next question you may ask is how can I find a kidney donor? And the best way to start is honestly to make sure that you don't ask the wrong question. So going up to a friend or family member and saying hey would you be my kidney donor is a terrible idea because when you ask that question if they are not ready to donate then they're gonna have to say well no and everyone is awkward now right so don't ask that question. A much better way to ask the question is to say hey will you help me find a living kidney donor you know I've had kidney disease for a while and dialysis is bothersome and I'm not really feeling great so would you help me because any friend or family member then can say yeah sure how can I help you right and then the next thing you need to tell them is you need to get them on your side and they can help tell everyone that hey you have kidney disease and you're looking for a living kidney donor and once you've told everyone that you know you need a living donor kidney or you have kidney disease and there's a huge huge need then you can go about and tell people what they can do to help you find a donor and the first thing is for them to go out and just like you're doing tell everyone that you need a living kidney donor. When you've done that already it's important to again re-emphasize the things that you've already said and taught them right because people forget people may ask once and most people after being asked the first time would you be my kidney donor they probably think well somebody else will donate before me so I'm not going to do anything right now and so the next important thing then is to go out and say you know everyone repeat everything we've said and one way to repeat things without asking them again will you help me find a donor is to say my doctor told me that I would do best with a living donor kidney and then your family and friends can echo that they can say do you know that so and so's doctor said that a living donor kidney would be best for them did you know my doctor said that I really should go and find a living donor kidney and now you've not told them to help you again you've just given them a little more extra information and then they can echo that for you you know and whether they do that by talking to people or emailing or texting whatever all of those are great ways to really just expand the people that know that you need a kidney and may someday give you a chance to have a living donor now lastly the thing you can do to find a living donor is when you have friends or family and you say you know listen I need help finding a living kidney donor and if you can't think of any other way that they can help you what I would tell them to do is as well there's two things you can do and you give them a choice between just two things right you can say well if you're interested in being a kidney donor yourself you can go online to fill out the living donor form and see if you may be a candidate to donating yourself and if for some reason that makes you uncomfortable you're not ready to do that yet then that's okay you can just start by asking your friends or family if they might be interested in being a kidney donor or if they know anything about kidney donations so that they can go to our website and learn more now remember you want to remind people many many times because the more they hear the more likely they are to change their mind over time and maybe say hey I might want to be a kidney donor the first steps to telling your story is to sort of figure out what your story is you can tell your story in different ways you can tell the story by talking to people you can use email or social media to sort of get the word out by typing it up once and sending it to a whole bunch of people and when you do that you can ask your friends and family to forward that or to share it with their friends and family because some of these people are people that you don't know so in my personal life at one point I almost ended up getting a kidney and you won't believe this from my husband's father's dentist's wife now my husband's father's dentist is not someone I know nor is his wife someone I know but what happened is that both my husband and my father-in-law and my mother-in-law all went out to tell everyone that I needed a kidney because they happened to be kind of close friends with their dentist they were like well if I can help your son have a healthier wife maybe I should be that kidney donor and that almost happened except things went wrong last minute and that's okay now I've been friends with the husband's father's dentist's wife since then so that's been a whole new relationship that came into our life just from other people asking for donors the next thing you can do to help tell your story is to really just tell a little bit about what your life is like now if you're doing dialysis tell people listen I had this fistula put in or I have this catheter in my abdomen I have to do dialysis do you know what dialysis is do you know how long it takes do you know how I feel after dialysis and you can elaborate I feel tired I'm exhausted like I used to walk for two miles a day and now I can only go half a mile it's exhausting and a kidney would make me feel so much better and that's usually important for people to know because they don't really have an idea of how a kidney transplant would change your life apart from saying what your life is like now you also want to tell people what you want to do when you get better right I can't wait for the time when I have a living donor kidney transplant because once I have a kidney that works then I can travel again once I have a kidney that works I'll have enough energy to chase my grandkids around the playground and all those types of different things are helpful for people to sort of see what you're dreaming about doing and how just significantly kidney disease is affecting your life now it's important at some point in time that you and your friends and family say that you need an organ right if people don't know that you actually need a transplant then there might not help you as much so you can tell them that listen my doctor said right you can use that line again my doctor said my doctor said that I need a kidney and there is an important fact that goes along with that which is that people on dialysis are much more likely to die than people who get a kidney transplant and so you can say my doctor says I need a kidney if I want to live another 10 years or if I want to live another 20 years so sharing facts and actually making sure that you say that you need a kidney is very important there's also a link for those people who don't know much about donation but who may be interested right you can have either you or your friends and family say hey so and so is looking for a kidney and someone may say what does that mean you can say well you know living donors, living people can be kidney donors and here's the link to go check out more information and those links work really well when you're using email or social media because you can copy and paste it and people can just click on it and then go to the website so the link to learn more about kidney donation is umm.edu slash living donor kidney and then most importantly in order to share your story and to share it effectively it's so so important that you give updates so for me it took seven months to find a living donor and I was so surprised that it took that long because I thought well I'm a transplant surgeon I have a ton of friends should have my transplant within two months and finding a donor is not a big deal but it wasn't so right because people do need to hear that you need a kidney more than once people need time to think about it and so what I did is every week or two I sent an update around I said listen you know all my family members have been tested at this point in time none of them are rather right blood group we're waiting on a period exchange we have someone listed in a period exchange but the wait could be up to two years is there anyone else who would be willing to get tested right and at that point in time people started thinking alright the other people don't seem to be working out maybe I should get tested maybe it is me and so people change their mind with time so sending updates of you know the people that you know have been tested and how many have been turned down and who else has come forward and thanking the people who have come forward in those updates I think are all very important things to do but I want to thank everyone for attending our webcast today and if you have any other questions or you want to learn more about living donor kidneys or donating a kidney or kidney transplant in general you can see on our screen here there's a couple of really nice websites that you can go to and I really really hope that you do visit these websites that you learn more about living donor kidney transplantation and that you share what you learn with other people and feel free to share these links as widely as you want with other people because again the more people know about donation the more likely they are to maybe become your donor someday