In this first episode of the podcast series, “Understanding Organ Transplant,” Dr. Ron Falk welcomes two UNC transplant experts to discuss kidney transplant; they cover topics including benefits of an early transplant, living versus deceased donor organs, preparation and recovery from surgery, and more related topics. Dr. Alex Toledo is an Associate Professor of Surgery in the Department of Surgery at UNC, and Dr. Karin True is an Assistant Professor of Medicine in the Division of Nephrology and Hypertension at UNC.

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Alex Toledo, MD, and Karin True, MD

“More and more living donors are not related to their recipients: husbands to wives, friends from church—living donors can really come from anywhere…They just have to be willing and they have to be healthy enough to go through the donation process.”

– Dr. Karin True

Ron Falk, MD: Hello, and welcome to the Chair’s Corner from the Department of Medicine at the University of North Carolina. This is our series for patients focused on organ transplant, and today we will talk about kidney transplant. We welcome Dr. Alex Toledo who is an Associate Professor of Surgery in our Department of Surgery at UNC, and we welcome Dr. Karin True who is an Assistant Professor of Medicine in our Division of Nephrology and Hypertension. Welcome, Drs. Toledo and True.

Karin True, MD: Thanks for having us.

Alex Toledo, MD: Thank you.

The Transplant Team

Falk: Let’s begin this conversation by helping our listeners figure out what the two of you do. Dr. Toledo, you are a surgeon, Dr. True, you are a transplant nephrologist, or a transplant kidney doctor. What’s the role that each one of you plays? Karin, let me start with you.

True: I help patients that have reached advanced chronic kidney disease, so these are patients who are very close to needing dialysis. Their kidney disease is very advanced, so that’s the time we start talking about the option of kidney transplant to treat their kidney disease. What we do is we bring them into our clinic, they get an educational class, they see some other providers, and they see me. My job is to determine how good of a candidate they are for kidney transplant; I take their medical history, we go through their medications, we talk about what kind of medical problems they have that are going on, what problems they’ve had in the past, and we determine what testing they’ll need, and other things they’ll need to get on the kidney transplant waiting list.

Falk: Or if they have a living donor, whether or not they’ll be able to get a transplant that way.

True: Right.

Falk: Alex, then, what is the role of the surgeon in this early work-up time?

Toledo: For the surgeons, we come into the picture just a little bit later. After our nephrology colleagues have evaluated the patients, and started to get a grasp on their medical conditions and other illnesses, we will evaluate the patient and look at it from a surgical perspective. We’ll look at whether or not they’re susceptible to infections, how they would perform with the surgery and whether they’d be able to tolerate the stress of the surgery. Also, we have many other colleagues who are coming into the picture at the same time to get a comprehensive, 360-degree view of the patient and make sure there are no missing gaps, because when we go live with the transplant we want everything to be in order.

Falk: So, this is really a team of somebody who is a nephrologist, somebody who is a surgeon, evaluating the person, what’s known as the recipient, of the donor, and making sure they’re okay.

Toledo: Absolutely. Of all the specialties in medicine, I think transplant is one that you can look at certainly as a field where teamwork is of the utmost importance. We have pharmacists, nutritionists, psychologists, psychiatrists, immunologists, nephrologists, hepatologists, surgeons, the list goes on and on. I often will tell the medical students that are rotating through transplant— sometimes they see it as a niche field— but I remind them that whatever they do, they’ll probably someway, somehow going to see these patients again. We work in such a big group that somewhere, sometime, our paths will cross again.

Falk: As a patient coming in, one shouldn’t be surprised to see a bevy of different kinds of people.

True: Absolutely. We have a lot of people on our team, and we don’t look at things just from the medical aspect. We look at it from the psycho-social aspect as well: How is this transplant going to impact them in their work life? Do they have people who can support them and bring them to appointments? Some of the transplant medicines are very expensive—How are they going to navigate that? So, all of that gets addressed before we go through with the actual surgery.

Toledo: I would agree. The process, especially from the patient’s perspective, someone who’s already sick and going through all of these evaluations, can be laborious, but I always try to encourage them to work hard to get through the process because the benefit of transplant is immense. We want to make sure they get through. It’s just that the evaluation takes a little while because we want to make sure that: one, they’re a good candidate, and two, that we’ve prepared them as best we can for the surgery.

Falk: This team continues then, through the transplant process in the period of time for as long as the transplant works. So, the transplant goes in, there is this teamwork, and as the patient ends up with a wonderful transplant long-term, Dr. True, you end up seeing a patient for how many years?

True: I think my longest patient who had a kidney that lasted the longest was 34 years. That’s certainly out of the normal. The average for a living donor kidney transplant is about fifteen years—half of them are working at fifteen years, half of them aren’t. Some of them last longer than that. For a deceased donor, it’s about twelve years, but those numbers are going up all the time.

Falk: With respect to meeting this team to start with, as a patient, really, it’s once you go through the process, you now get cared for by the same team for a long, long time if everything works well. So, it’s good to get to know all of the players.

True: Absolutely, yes.

Benefits of Early Transplant

Falk: A couple of things already came up in what you started with, Karin, you talked about the idea of patients who were just on dialysis. Can someone get a transplant and start this work-up who’s not on dialysis, but who has advanced kidney disease?

True: Absolutely, and that’s always our goal, actually, is to try to get people to transplant before they need dialysis. Of course, we’re grateful that we have dialysis for patients who need it, but if we can get them to transplant before they even need dialysis, that’s a great situation. Anyone who’s approaching more advanced chronic kidney disease can be referred to a transplant center to be evaluated to go through the process we were discussing. Basically, a patient is eligible to be placed on the waiting list when their kidney function is at twenty percent. Most people don’t need dialysis at that kidney function, they can go down to fifteen, ten, and five percent before they need dialysis, but patients can be placed on the waiting list and start getting time accrued on the waiting list, which is part of the way that we distribute kidneys to patients with deceased donors.

Falk: How do you figure out whether someone is eligible to be on the list? You said the number twenty percent. How do you figure that out?

True: That’s determined by blood work that’s drawn at your kidney doctor’s office or primary care doctor’s office. We look at the laboratory work and that will tell us what percent the kidneys are functioning.

Falk: Based upon a blood test called creatinine can then be used to figure out that percentage.

Living and Deceased Donors

Falk: Help me understand living-related donor and deceased donor.

True: I wouldn’t say living-related donor versus deceased donor, I would say “living donor” versus “deceased donor.”

Falk: Why is that?

True: Living donors are people who come forward to offer to be a kidney donor to somebody who needs a kidney transplant.

Falk: An altruistic donor.

True: Right. Out of just to do something good for someone, sometimes for someone they know, sometimes they don’t. In the past, you would hear about a lot of times when kidney transplant started, a lot of donors were related to their recipients, so brothers or parents or sisters, children giving to their parents, that was sort of mostly where the donor pool came from. As time has gone on, more and more living donors are not related to their recipients: husbands to wives, friends from church, people they knew from high school, living donors can really come from anywhere, so I would say they do not necessarily have to be related by blood to their recipient. They just have to be willing and they have to be healthy enough to go through the donation process.

As you would imagine, the evaluation for someone to be a living kidney donor is very rigorous. These are people going through a surgery that they will not benefit from medically. I think it may be the only surgery that is performed that doesn’t directly medically benefit the person having the surgery. It certainly benefits them psychologically by helping someone going through this process, but we want to make sure we are minimizing the risk to the potential living donor as much as possible, so they go through a very rigorous evaluation process.

Toledo: It’s interesting, Karin, that you said that the donors often don’t benefit and medically, that’s absolutely true, it’s all risk and no benefit, but the interesting thing, I saw a woman in clinic not too long ago, who was looking to donate to her husband. We were talking about some of the risks of the surgery and I just wanted to make sure she was aware of all of these risks and let her know that for her, it can be a risk without benefit. She was very quick to correct me; she said, “Listen, my whole life, my whole job this last year is taking care of my husband,” and that all of her time and efforts were really spent dealing with his health issues, and she felt that with a transplant she felt that not only was he going to get his life back, but she was going to get her life back as well, and she would have her partner back.

Falk: It’s really one of the most wonderful gifts you can give anybody.

Karin: It is amazing. To sort of finish up that question, then, you asked, what’s the difference between a living donor and deceased donor— a deceased donor is a patient who has experienced brain death or a significant illness they are not expected to recover from, and have consented to be an organ donor. That’s where, for patients who don’t have a living donor, that’s where the rest of the kidney transplants that are done come from, the deceased donor pool.

Deceased Organs

Falk: Dr. Toledo, walk us through the typical organ offer process.

Toledo: Typically, we’ll be going about our business and we’ll get a page, and it’s from the organ procurement agency here in North Carolina, Carolina Donor Services. They’ll call us and tell us that there’s a donor that’s available and that our patient is first up on the list, whoever that patient may be is first up in line for that kidney. Often times they’ve waited for four, five, six years, possibly. Typically, it’s three to five years here in our region, on the deceased donor wait list. They’ll be waiting that long to get this phone call. First, we’ll get the call from the organ procurement organization, they’ll describe the donor, give us some background about their medical history, how they’re doing now, how their kidney function is, how their other organ functions are. At that point, typically we’ll do a little more research into the donor, make sure there’s no infectious history, because we don’t want to transmit anything from donor to recipient, so we make sure there’s no infections, no cancers, they have good medical health. We check all their labs and when all of that checks out, we then will call one of our nurse coordinators who will call the patient and let them know that there’s a potential kidney available, and at that point usually they’re told to pack an overnight bag and get to the hospital as quickly as they can.

Falk: An exciting moment. How do you know that somebody is brain dead? How is someone who has decided to become a donor at the time of their death, how can they be sure that their organs won’t be taken before their time has really come? How do you, as a group of physicians, decide that issue?

Toledo: That’s a great question, and we get it quite often, and not just from patients. I’ll get it just in my daily life, people saying they think donation is a fabulous thing, but they’re concerned that somehow being a donor might alter how they’re taken care of at the end of life. The two processes are very separate. There’s a team that’s taking care of a patient, and when all of their medical care is exhausted, and they’re declared brain dead, only at that point would organ procurement organizations be contacted and the patient be evaluated for being a donor. Typically, to be declared brain dead, there are several different tests that they can use—one is a breathing test, they’ll take the patient off the ventilator and make sure they’re not breathing on their own spontaneously. They can look at their cerebral or brain profusion, and several other tests that can indicate with clarity that the patient is indeed brain dead. Before that organ offer process even gets started.

Falk: So, it’s really two separable teams—the team taking care of the patient, who then has to participate in the process of declaring a person brain dead, and then a very different group who then takes over and is there to make sure that organs that are harvested are well cared for. There’s no conflict of, “Oh, I want to speed this process up.”

Toledo: Exactly. We take great care to separate those two activities. Another team would take care of the patient to their fullest capacity, and only when they reach the point of being brain dead would they approach the family, change gears, and inquire to see if they would be interested in donation. Often times, the patient has made that decision for themselves for the family on their driver’s license or in some other capacity.

Falk: There is this concern that there are kidneys and other organs available that are not being used, so the person has gone through the process you just described, they signed up on their driver’s license to be an organ donor, the family has provided consent again that the person who is now brain dead should donate and could donate, and then sometimes those organs are not used. How does that happen?

Toledo: It does happen occasionally. Part of that is just the vetting of the organ and looking into the quality of the organ, and once in a great while we’ll have a donor, where due to another disease, maybe they’ve had kidney disease, we won’t discover that until after the time of their death. We’ll look at their biopsy or some of their other renal function parameters. They could be declared not a good candidate for donation in the sense that that kidney would not give the recipient the longevity they were looking for. Other reasons sometimes an organ might be turned down would be for infectious causes, or if a malignancy was discovered at the time of the organ recovery, any of those cases we try to be very cautious with the type of organ we put in. We try to think of it with the perspective of, this patient who is going to be getting a transplant is going to be immunosuppressed and susceptible to infections and other such things, so we’ll be very cautious if there’s any indication that the organ that we would be bringing in would have any complications.

Falk: Because you want to make sure that the person has the best chance of having that kidney work for a long time.

Falk: Walk me through the idea now that the recipient has been called, they’re coming in to the emergency room with their bag, they’ve been waiting on the wait list for years and years, they’re in the emergency room, the hope for that person is they’re about to get a kidney—what can happen?

True: When they come in, they’re evaluated by both the medical and the surgical team, and redoing in a shorter version, the evaluation of them as an immediate candidate for transplant. Medically, things that we look at are, Have they had recent infection? Have they been in the hospital recently? How is their cardiovascular health? Do they have active chest pain? Do they have a fever?—things that would prevent them from going to the operating room from a medical perspective, something that would put them at high risk for complications around the setting of anesthesia with surgery, as well as the setting of the profound amount of immunosuppression that we do at the time of the kidney transplant. We look at all those things, we get lab work to look for any abnormalities that would be unexpected in their labs. We do chest x-rays to look for any infection in the chest, things like that. Prior to saying, “Yes, we’re okay medically with them going to surgery,”— Do they need dialysis before they go to surgery? We look at all those things as this is going on.

The other thing we do is what’s called a cross-match, so we test the recipient’s blood to see if they have any antibodies that would cause rejection of that donor kidney. We have all that information in the database, but those things can change over time, so there’s still the possibility at the last minute, the kidney is not a good match for the recipient, that could be a reason they potentially could not get that kidney.

Falk: The hope of course is that everything will go well, they get rolled to the OR for this exciting moment of finally getting a new kidney, a second chance.

Length of Surgery & Recovery

Falk: How long do these operations typically take?

Toledo: I always tell the patient the surgery is going to take three hours or so, but between getting the patient back to the operating room, getting a central venous monitoring—special monitoring, set up for the surgery, post-op, and getting the patient bundled back up to the recovery room, I always tell the patient’s families to expect it to be about four or five hours all together.

Falk: Pretty fast. And once the person comes out of the operating room and the kidney’s working well, what should they expect?

True: They’ll go to a bed in the hospital—obviously they stay in the hospital after the surgery—and initially they’re in what we call a “step-down” bed. It’s not an intensive care unit unless there were complications in the surgery, but it’s a scenario where they’re watched a little bit more closely. They do ultrasounds after the surgery to make sure there’s good blood flow to the kidney. We monitor how much urine they’re making very closely, we monitor their blood pressure. Patients generally, by the next day can sit up in a chair, even stand and walk a little bit. Physically, you have a pretty quick recovery for most patients. They’re usually pretty surprised at how much they can do initially after a kidney transplant surgery. I would say—Alex, correct me if I’m wrong, that most people stay in the hospital for four or five days.

Toledo: Yes, sometimes even less, it depends on a lot of different factors. Some of our patients are out as soon as three days after surgery, and other patients will stay a few extra days if they’ve got some medical issues we’re trying to get a hold of before they go home.

Falk: If this were a person who was getting a living donor, the living donor would be in an operating room right next door to the recipient, the patient. The organ goes from one room to the next—walk me through what happens to the donor, the living donor, with respect to their recovery. Is it as fast as what you’ve just described?

Toledo: Basically, yes, they’ll recover as quickly. However, the first couple days, I’ll always tell the donors not to be too discouraged because the recipient is going to be very excited, they’ll be sort of coming from a different perspective. The donors are coming from absolutely, perfectly healthy, and then they kind of feel like they just got hit by a truck, whereas the recipients immediately feel better. They usually tolerate their surgery really well, and they’re running over to the donor’s room to thank them, and the donors…maybe it takes them an extra day—but eventually they’ll be up in the halls walking with the recipient.

True: A kidney transplant, remember, goes in the pelvis, so they don’t actually have to operate in the abdomen to place a kidney, but to get a kidney out, they have to go into the abdomen, and that always takes a little bit more time to recover from, just until your gut starts to work again, so that’s the issue generally that the donors run into.

Falk: The living donor now, who most graciously provided a kidney, when should they expect that they’ll be back to their normal lifestyle?

Toledo: They’re usually back to their normal lifestyle between two and four weeks, with the caveat being, that we don’t want them doing any strenuous activity to stress their incisions, until a minimum of six weeks. Once they get to about two to four weeks, though, we usually are soliciting help from members of the family to kind of hold them down. They’re feeling good, they want to be active, and they want to be doing stuff, but we tell them not to lift anything heavier than a jug of milk until that six-week mark. We want everything to heal right the first time.

Conversations for Finding a Living Donor

Falk: How do you counsel a patient on conversations about living donors? Patients are pretty leery of asking for help.

True: It’s very true. It’s an awkward conversation to have with someone, and a lot of patients are very hesitant to do so. What I have found to be helpful is, particularly if there’s friends or family in the room when I’m seeing a potential recipient, is I engage those people to speak on behalf of their loved one. I tell them— It’s sometimes hard for patients, they don’t want to tell everyone that they’re sick, maybe people don’t even know they have kidney disease, because sometimes it doesn’t show when you have kidney disease a lot of times. They may not know, particularly if a patient isn’t on dialysis yet.

We talk about ways to let people know in their community, whether it be people at church, or their close friends, and a lot of times their friends and family can start the conversation with other friends and family about what’s going on with the patient and sort of bringing up, “We went to a kidney education class and they talked about living donation and what a benefit it is to have a living donor, and we’re just trying to talk with everyone about finding a living donor for our family member or loved one.” Generally, if the family and friends who are present can’t be donors themselves, they will go out and advocate for their patient if the patient feels that they can’t do it themselves.

We also have a program where people going through the process of being listed for transplant can get a transplant mentor—a patient who has already had a transplant who can talk to patients. It’s easy for us to talk about all of these things, but we have not walked in these patients’ shoes, and sometimes it’s really helpful for them to talk to someone who’s gone through the whole process and come out on the other side. Sometimes they can have a lot of helpful hints for things like this about getting out and figuring out how to approach people about donation.

Falk: Now the person has gone through an entire work-up—the recipient—they’re on dialysis, they finally get on the waiting list, and you said they can wait three, four, five, six years. You see them intermittently. How do you keep somebody motivated to stay on the list, to stay healthy, on dialysis, realizing that that’s a long period of time to wait?

True: Actually, I have not had a hard time keeping people motivated for the most part, because they see transplant as the light at the end of the tunnel, even though the tunnel is very long. It gets difficult when people have had a lot of medical complications—they may have been sick for a while, or have been in the hospital and they get discouraged about transplant and, “Am I even going to get there? Am I ever going to get this kidney?” I think that’s a good time when the transplant mentor program comes into play, if they can talk to somebody who went through the process and waited a long time, and now has a successful transplant, sometimes that can help keep them motivated.

I know that I encourage patients, particularly my patients who are on dialysis for a long time before they got transplanted, I encourage them to go back to their dialysis units, visit with the staff, visit with the patients, show them how well they’re doing. That really helps, it helps keep people motivated more than anything that I can say—to just show them and keep in their minds, what they’re working for. But yes, it is a long time. When they’re coming back to see us, as they’re waiting to readdress living donors. Maybe somebody doesn’t have a living donor at the time they were listed, but that doesn’t mean someone didn’t come into their life during those years in the meantime who might consider being a donor for them. Patients are sort of like—their head’s down, they’re on the waiting list, they’re waiting for that deceased donor, and they don’t think, Hey wait a minute, there’s somebody now who would be considered as a donor. So, I try to bring that up at every visit, because that’s another way to decrease the waiting time.

Living Kidney Donation in Pop News

Falk: It’s interesting that Selena Gomez, just on national TV, was shown with her recipient, side by side with her living donor. That’s pretty cool.

True: It’s amazing. I knew that she had lupus, she’s been very open about her battle with lupus over the years, and it turns out her living donor was another actress who’s a very good friend of hers. As far as anyone can tell, they’ve both done amazingly well. She tweeted a picture of her renal transplant scar, so if anyone’s curious as to what that looks like, they can look up Selena Gomez on Twitter and look at the picture. Looks like she’s doing well, and I think she’s 25 years old, it is certainly awful that she has renal failure, but of all the courses of treatment for her, she has the ideal one, which is a kidney transplant—I presume before needing dialysis, I don’t think she was on dialysis prior to her transplant.

Toledo: That’s the beauty of living donation sometimes, because patients don’t even miss a beat. They recognize they have kidney disease, but before they really get sick and are on dialysis and in the dialysis center for several hours three times a week, before any of that ever happens, they have some noble, generous person in their life who steps forward and they’re able to get a second chance before they had to truly suffer too deeply with kidney failure.

What Dr. Toledo and Dr. True Like Best About Their Job

Falk: Alex, what do you like best about what you do?

Toledo: Without a doubt, I’d say it’s getting to interact with these families who are going through a difficult time and being able to help them, with the team. As we said, we have a huge team. There’s something special about doing something in such a collaborative fashion with Karin and the nephrology team and all our coordinators, the anesthesiologists, the other surgeons. There are so many people helping these patients get from A to B. When we finally get to do the transplant, I’d say one of the highlights is just watching the reperfusion of the kidney in the operating room, when we take the clamps off. The kidney is white after we’ve flushed all of the blood out of it before it goes in, and as soon as we sew it in, the moment of truth is when we take the clamps off and the recipient’s blood rushes into the kidney and it pinks up. Hopefully at that point it starts making some urine over the next couple of minutes. Once it does that, it’s a pretty exciting moment. To be able to be part of the team that gets the patient from A to B is always pretty exciting.

Falk: Karin, what about you? What do you like best about what you do?

True: Definitely the patients. These are patients who have received this amazing gift and it has absolutely taken them from a really bad place to a really good place—it’s life changing. To be a part of that is pretty amazing. For me, once these patients recover from surgery, they come and see me for the life of their kidney, and as you’ve heard, that’s a lot of years. As I get older, I have these patients who I’ve taken care of for ten or fifteen years now. I show them pictures of my kids, they’re a part of my family, it’s a really beautiful relationship to have and I’m so lucky to have that. I would echo what Alex said—we have a great team and it’s fun to come to work. We are doing a wonderful thing, and we have a good time doing it, so it’s a pretty amazing job.

Falk: Thank you, Dr. Toledo and Dr. True.

Toledo: Thank you.

True: Thanks so much for having us.

Falk: Thanks so much to our listeners for tuning in. If you enjoy this series, you can subscribe to the Chair’s Corner on iTunes or like the UNC Department of Medicine on FaceBook. Thanks so much.