Living donors can make a huge difference

[00:00:00] Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. Dr. Toby Le Nguyen recently joined the transplant team at Upstate University Hospital, and one of the things he specializes in is pediatric kidney transplants. I'll talk with him about that, and I'll ask him about living donor kidney transplants, which are increasing in number. Welcome to "The Informed Patient," Dr. Le Nguyen.

[00:00:33] Toby Le Nguyen, MD: Thanks for the invitation.

[00:00:35] Host Amber Smith: I'd like to start by asking you about probably one of the more rare kidney transplants, those that are done in children. You specialize in these operations. Can you tell us in general how a kidney transplant differs in a child versus an adult?

[00:00:49] Toby Le Nguyen, MD: So for kidney transplant, there are the basic steps for surgery. No. 1, we need to make sure that there's blood going into the kidney. No. 2, we need to make sure that blood's coming out of the kidney. And the kidney makes urine, so we need to make sure that the urine's going somewhere. So those basic steps are very similar between adult and a pediatric transplant.

However, there are more special attentions paid toward the pediatric population, given the fact, No. 1, their size. And No. 2 is the cause of the kidney failure. What that means is that there's a different approach from a surgical standpoint.

[00:01:32] Host Amber Smith: So there's different diseases that cause kidney failure in children?

[00:01:37] Toby Le Nguyen, MD: Correct. So in adults, the majority of time currently in the US, the kidney failure is due to severe high blood pressure, diabetes. We think in our health system, those are modifiable diseases.

In pediatric populations, most of the diseases that cause kidney are congenital or genetic diseases. And,depending on the congenital disease or native disease, the pediatric nephrologists sometimes recommend the removal of the native kidneys,either at the same time or before doing the transplant -- versus an adult, usually, most of the time, don't remove the native kidneys unless there are true indications. And usually the indications for that are infection or severely large cystic kidneys.

[00:02:37] Host Amber Smith: So with children with a genetic concern, if you remove both of the kidneys, do you try to transplant two kidneys? And do they have to come from the same person?

[00:02:48] Toby Le Nguyen, MD: So the discussion to decide if a kid is ready for transplant is a multidisciplinary discussion with a pediatric nephrologist, with surgeons, with social worker and everybody else. We decide that if there is an indication to remove the kidneys, the native kidneys, then we'll do that, usually at the same time, at the transplant.

Most of the time people have two kidneys, so we remove both kidneys, and we place a new kidney in. Usually kids can survive with one kidney.

[00:03:24] Host Amber Smith: I see.

Now, can children receive a donor organ from an adult?

[00:03:30] Toby Le Nguyen, MD: For sure. Absolutely. The majority of my work in training was that it was usually from a related adult.

So parents, family, who donate to the kids.

[00:03:46] Host Amber Smith: Are parents or family members always a good match for a child?

[00:03:51] Toby Le Nguyen, MD: Like I said, in order to determine if a kidney transplant is a go, we meet as a whole group. We decide if the patient, the kid, is a transplantable candidate, No. 1. And No. 2, we identify a donor.

Usually we push for a living kidney donor. What that means is that a healthy donor donates one of his or her kidneys to the pediatric patient. We look at the size, No. 1, and we look at the blood type match, and we look at the antibodies match. If everything works out, either from the family, usually, the parents, usually, they have a pretty good match based on the antibodies and blood type. Then we'll proceed with that.

Unfortunately, let's say one of the parents is not a healthy donor, and the other one is not a match. Then what we can do is that we can put that parent who is a possible donor and a pediatric patient into a pair exchange program, where we find an appropriate donor.

[00:04:54] Host Amber Smith: And then that donor provides for the child?

[00:04:57] Toby Le Nguyen, MD: Correct.

[00:04:58] Host Amber Smith: OK. Now are you looking at this, will this transplanted kidney be a lifetime organ for that child? Or how long do they last?

[00:05:06] Toby Le Nguyen, MD: So, for living kidney, we usually hope between the average, between 10 to 20 years. What I've noticed within a pediatric population is that it can last for 10 to 15 years.

The biggest component is the compliance of medication. So this is why we want to involve social worker, pediatrician, nephrologist, and everybody's involved because putting a kidney into a patient works fine, but they need to make sure that they follow up with medication, they follow up with labs, taking appropriate anti-rejection medications. Because if they don't, that can increase risk of rejection.

And non-compliance can be a big barrier for young pediatric patients because there's a lot of learning. And when you go through school and everything else, it's a change. So I think that's a bigger barrier to that.

[00:05:59] Host Amber Smith: Can you compare the outcomes for a kidney transplant from a deceased donor with that of a living donor, for a child?

[00:06:07] Toby Le Nguyen, MD: Yeah. Living donor kidneys always work much better in both adult and pediatric setting. Like I said, usually between 10 to 20 years for the living donors.

A deceased donor kidney -- what that means is that a patient who has irreversible brain damage or who is brain dead, he or she is an organ donor, and family approves for a organ donation, so then one of the kidneys will be up for donation. Unfortunately, with a deceased donor, there's many variabilities that can affect the what we call, how long it lasts for, or "shelf life." So compared to a living donor, deceased donor shelf life is a bit lower.

[00:06:53] Host Amber Smith: So let's talk a little bit more about who can be a living donor, and how do you go about doing that.

[00:07:02] Toby Le Nguyen, MD: So this is what I talk to every single potential transplant recipient who comes to see us for evaluation, is that a living donor's kidney works much better. And that should be your ticket to get a transplant.

Let's back up a little bit in the sense that transplant is basically putting a new kidney into a body that can take over the failing native kidneys. We can do that preemptively. What that means is that before they get on dialysis, or we do the transplant while they're on dialysis. Preemptive transplant before dialysis has better survival benefits in general.

And then, transplant also does better in the long term compared to being on dialysis for the rest of the patient's life. So I do believe transplants work.

[00:07:55] Toby Le Nguyen, MD: So where does a kidney come from? The kidney comes from a donor. The donor can be as a deceased donor or a living donor. We talked earlier, deceased donor has severe brain damage. They are organ donors. They can donate one of the kidneys. Living donors is a healthy donor out of friends, families, strangers, even, who can donate one of their two kidneys, and they can live for the rest of their life with one kidney.

The living kidney lasts longer, has better quality, and the surgery itself is more planned because deceased donor is unpredictable, is whenever there is an available organ, you get called in. Besides of that, there is a biggest disadvantage on the deceased donor because there is a wait list. It's making sure that there's fair for the entire system or everybody (who is) on the wait list. And when you get activated on the wait list, you start at the bottom of the list. You only move up on the top of the wait list based on how long you've been waiting on the wait list. So time, and your blood type. So usually in this region, central region for blood type O, we expect patients to wait between four to six years to be on the top of that disease wait list to be able to see good offers for a deceased donor. So that is a pretty big disadvantage.

[00:09:21] Host Amber Smith: Are children able to be living donors?

[00:09:24] Toby Le Nguyen, MD:

So living donors is 18 years old and above. In regards to what is the maximum age? There's a bit of nuances, but usually we have done people in the late 60s, maybe one or two patients who are healthy, 70 years old.

[00:09:41] Host Amber Smith: So they obviously have to be healthy to be a donor. Are there any other disqualifiers for someone who would like to donate?

[00:09:48] Toby Le Nguyen, MD: Yeah, so the main reason is living kidney donation -- this is coming from a donor who, this surgery is not needed for that person. There's no physical benefits. However, there are significant emotional benefits, either being, "I'm saving a child," "I'm saving the life of my spouse," or "I am supporting somebody, a stranger." So there is a huge emotional benefits in there. You know, we rely on that. So we want to make sure that patients are physically and mentally, emotionally, prepared for the whole process.

Usually the disqualifiers, the absolute contraindications would be if they have any risk factors that can affect the kidney disease. So as I said before, any severe hypertension, any uncontrolled diabetes, any recent cancer. And also, at the same time, significant obesity. So those are the absolute contraindications. When I said it has to be severe and uncontrolled diabetes, we do see people who are sort of pre-diabetic or maybe just have hypertension is not monitored by one blood pressure medication. Those patients can still be evaluated.

[00:11:09] Host Amber Smith: Does a donor have to have health insurance?

[00:11:14] Toby Le Nguyen, MD: No. So the donor's process, everything is covered by the recipient surgery.

[00:11:21] Host Amber Smith: Gotcha. Well, what sorts of medical testing is done? Once you have someone who's willing to donate, what lays ahead for them before you determine whether their kidney can be used?

[00:11:33] Toby Le Nguyen, MD: Yeah, so at Upstate, this is our process. They fill out a questionnaire. The questionnaires basically screen out people who are there are absolute contraindications. So again, significant obesity, severe hypertension, uncontrolled diabetes, or recent cancer.

After they pass through that questionnaire, our living (donor) coordinators will contact them and will do a 24-hour urine collection to see the function of the kidneys. There are patients who have overall poor kidney functions; then they cannot proceed, because if they have poor overall kidney function, they should live with two kidneys versus one, obviously. After we determine that patients have enough kidney function to undergo the donation, then we see them in clinic.

At that clinic visit,the potential donor sees a surgeon, a nephrologist, finance coordinator, and social work who supports and identify any issues that a donor has. We also have a living, we call it "elder," which is an independent living donor advocate. So that person also making sure that donor does everything in an ethical sense and not being pressured by anybody.

After that clinic visit, they will do basic labs. So we check for their diabetes, check for a cholesterol level, check for blood type. And we do a CT scan. And we meet as a group, the social worker, elder, the nephrologist and I meet as a group, and we determine based on the those data points, if the patient is approved to be a donor.

[00:13:24] Host Amber Smith: So you're really looking out to make sure that this person will be able to remain healthy afterward?

[00:13:30] Toby Le Nguyen, MD: Absolutely. And like I said, because this is a strict process, we always strongly suggest potential kidney recipients who are on dialysis or still waiting to be on dialysis, that they spread the word out a lot, significantly becausethe potential donors go through a lot of hoops to get to that point. So we eliminate a lot of people.

[00:13:53] Host Amber Smith: You're listening to Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith. I'm talking with Dr. Toby Le Nguyen from the transplant team at Upstate University Hospital.

Well, once you do approve someone and they're matched with someone who needs a kidney, can you walk me through what happens on the day of surgery? Both the donor and the recipient are at the hospital ready for surgery. Do you, as the surgeon, do you operate on both of them, one after the other?

[00:14:24] Toby Le Nguyen, MD: I would like to also get back a little bit after the process of approving them to be a donor. So the kidney (that) goes into the recipient, that kidney has to be blood type matched and has to match the antibodies of the recipient.

So let's say if that recipient has a potential donor who unfortunately doesn't have the same blood type or antibodies doesn't match well with the recipient, it's not an automatic rule out that donors can proceed. So what we do is that we participate in a national kidney exchange. It's another way to say that there's a kidney bank, run by a national program. What we do is that we take this pair, the donor and the recipient who are not a match, and put them into a kidney bank. And we sort through the whole national kidney bank to find an appropriate match based on size, age, antibodies, blood type to that recipient. And that recipient's donor is donated to somebody else who has a similar profile. Does that make sense?

[00:15:33] Host Amber Smith: So a donor here at Upstate, their kidney may not go to a patient at Upstate, correct?

[00:15:39] Toby Le Nguyen, MD: Correct.

[00:15:39] Host Amber Smith: I see.

[00:15:40] Toby Le Nguyen, MD: If that donor at Upstate doesn't have a matching profile, right? So that's, I think that's important to point out is that I think a lot of people have the myths that I have to find someone to match me. It does not need to be that. It needs to be, the kidney has to match to the person, but that kidney can come from anywhere.

So the more important bottom line is if you can find an approved donor, we will make sure the transplant can happen.

In regards to the donor, briefly, how do we decide which kid need to take? If both kidneys are similar in size and function, we usually go for the left kidney, remove the left kidney because it has more preferred anatomy for the recipient surgery. Let's say if one kidney is bigger than the other, we will let the donors keep the bigger and better kidney and proceed with removing a quote-unquote "lesser" kidney to the recipient. That's how we determine which one to remove.

[00:16:49] Toby Le Nguyen, MD: The day of surgery is a well orchestrated day in the sense that we make sure that the donors and the recipients are being seen before surgery. We make sure that they have all the lab tests and everything done. The day of surgery, the donor surgeons, usually either me or my partner, Dr. (Matthew) Garner, will proceed with the donor surgery first.

And then the recipient surgeon will go in usually 30 minutes to an hour after we start the donor surgery. We remove the donor's kidney, and we quickly bring it over to the recipient's surgeon to proceed with the recipient surgery.

[00:17:34] Host Amber Smith: So you have two separate operating rooms and two separate operating teams, it sounds like.

[00:17:39] Toby Le Nguyen, MD: Correct. Absolutely. The reason we do that is that want to make sure that No. 1, that the recipient surgeon, the recipient, can undergo surgery, make sure that we have identified appropriate anatomy for it to be transplant.

Let's say the recipient can't undergo certain things, or if something happens, we should not remove the donor's kidney for the recipient. Does that make sense?

[00:18:04] Host Amber Smith: Yes. So the kidney connects to the bladder by a long, thin muscular tube called the ureter.

[00:18:12] Toby Le Nguyen, MD: Yeah.

[00:18:12] Host Amber Smith: Do you connect the donor kidney to the recipient's ureter, or do you also remove the donor ureter and connect that to the recipient's bladder?

[00:18:23] Toby Le Nguyen, MD: I see you did your homework. So, the basic step, like we discussed earlier, there is an inflow blood going to the kidney, and then it's also blood draining the kidney. And then the kidney has a ureter, which makes urine. We have to hook it up somewhere. So there are three main connections for the kidney transplant.

No. 1 is to establish inflow, which is the artery, blood going in, and then establish the outflow of the blood, which is the vein. So we put two blood vessel connections. And then the third connection is the ureter. Most of the time, we hook it up to the the donor's kidney. We hook the ureters, we hook it up to the recipient's bladder.

There are a few instances where, let's say the bladder has issues, or we can't reach the bladder. Then we hook it up to the recipient's ureter. But most of the time it's the recipient's bladder.

[00:19:19] Host Amber Smith: OK. And how long do the operations take usually?

[00:19:23] Toby Le Nguyen, MD: So the donor surgery, the living donor surgery, technically usually takes between two to three hours. Then the recipient surgery, between three to four hours.

[00:19:33] Host Amber Smith: OK. And getting back to the size of the organ that's transplanted, if you take a smaller kidney and you put it into an adult that's large, does the kidney grow? Does it get bigger?

[00:19:47] Toby Le Nguyen, MD: It does not grow.

So there are certain special cases where we use what we call "en bloc" pediatric kidneys. So these are unfortunate events where very young babies who suffer severe brain damage and pass and have brain death. The parents proceed with organ donations. So the babies donate their organs. So these are deceased donors. We take these babies en bloc. That means we take both kidneys from the patient and we place them into, potentially, an adult patient, very small patients. So in those cases, you can see these babies kidneys grow over time a little bit. However, the majority of time when you put a adult small kidney to a adult larger person, that doesn't grow.

[00:20:43] Host Amber Smith: And I don't think I asked you this before, but does the gender matter? Does a woman have to donate to a woman and a man to a man, or does that matter?

[00:20:51] Toby Le Nguyen, MD: So I think this is where we talk about the nuances and the details of selecting the right match. So in a living donation we can have those discussions. We can make sure that the longevity of the graft can last long. So let's say for instance, the husband is a male, is the recipient, needing a kidney, and the wife is a donor.

Let's say when we do a workup, the donor, the wife has a very small kidney. And the husband is a larger man. Yes, technically you can put it in. However, the shelf life of that kidney may not last as long. So what we usually do in that living donor situation is we can put them into a kidney bank. Again, find an appropriate match to the recipient. Sometimes, most of the time, usually either the spouse, they're pretty well matched based on size, then we can just proceed without doing the kidney bank. But essentially with a living donation we spend more time trying to figure out a best match.

The deceased donor, unfortunately we don't usually have that ability to do that because as a deceased donor comes, we can make a decision based on if it's a very small kidney from a small donor, we can't put it in a bigger guy because that function doesn't work well. But sometimes we don't have choices because what if that person's on top of the list, and they need a kidney transplant? So, that's why it's harder to do deceased donor.

[00:22:28] Host Amber Smith: Well, let's talk about recovery, for the donor and the recipient. How soon can they each return to normal activities?

[00:22:36] Toby Le Nguyen, MD: Let me focus on the donor. For donor, I do laparoscopic surgery. So I make small incisions using laparoscopic tools. I do have to make an incision about 6 centimeters in order to extract the kidney out of the body. For the left kidney, there are three incisions. For the right kidney, there are four incisions. The fourth incision is very tiny incision to lift up the liver. It's about 5 millimeters. So basically they're very similar.

But donors, they stay in the hospital between one and two days. The criteria to be discharged from the hospital are if they can walk, if they can pee afterwards, passing gas, if they can eat, and pain well controlled, then we'll let them discharge from the hospital. They come back to see us at two weeks after surgery and six weeks after surgery. And we do labs every six months, 12 months, 18 months and two years. That's the donors.

For the recipient, they stay in the hospital between three to four days. Similar criteria to be discharged: pain control, walking, eating, and peeing.

Usually with a living donor kidney, they pee right away, which is how we know, that it works right away. With a deceased donor, that doesn't really happen all the time, so we usually monitor that more closely.They stay in the hospital between three to four days. After that discharge from the hospital, they see the surgeon twice a week for one month, once a week for one month and once every other two weeks for one month, and monitor very closely with weekly labs.

[00:24:19] Host Amber Smith: So are there any recommendations for lifestyle changes, or are there certain activities that they are advised not to do because of the kidneys?

[00:24:28] Toby Le Nguyen, MD: For the living donors, we usually recommend no heavy lifting and strenuous exercises for at least for six weeks to make sure that all the incisions are healed nicely. Otherwise, the biggest component about living donor is maintaining a healthy lifestyle for the rest of their life. What that means is that you live with one kidney. So this is about how long can you live with one kidney, and are there any medical risks? We, as a nation, we've done living donor kidney transplant over the past 40 to 50 years. So there are tons of data that show that this is a very safe surgery, and in regards to any risk of developing high blood pressure or kidney disease on the remaining kidney, the donors actually have a very similar or slightly higher risk than the general population. Very minimal risk. They actually, the donors, live longer than the general population.

What we encourage and emphasize are No. 1, healthy lifestyle. No. 2, making sure that not significant weight gains or weight loss. If you are slightly obese, start to lose some weight, essentially trying to save that kidney. So those are usually the recommendation for the donors.

For the recipients, with the working kidneys, you get off dialysis. You're able to do more things (that) are more enjoyable. But the most important aspect is that you have to change your lifestyle a little bit in the sense that you're taking anti-rejection medications for the rest of your life. And then you need to make sure that you are aware (that) you are basically immunosuppressed. Compared to general population, you have higher risk of developing infection. So those (are the) things that we impress on the patients.

[00:26:20] Host Amber Smith: I think you said that the native kidney is usually left inside.

[00:26:25] Toby Le Nguyen, MD: Correct.

[00:26:25] Host Amber Smith: If it is diseased, will that spread to the new kidney?

[00:26:30] Toby Le Nguyen, MD: Yeah, great question. So, like I said, if patients have kidney failure due to hypertension and diabetes, which are the highest causes of kidney failure in America, that shouldn't be transferred to the new kidney, if your high blood pressure and diabetes are well controlled after the transplant.

If your blood pressure and diabetes are poorly controlled after transplant, that can affect the kidneys for sure.

So, the third kidney disease such as polycystic kidney disease, or in other words, these kidneys have innumerable cysts, and they grow so large that disease should not be transferred to the new kidney. Otherwise, there are some genetic diseases, similar to pediatric, that adults can have, such as IgA nephropathy, or vasculitis. Those diseases can recur with a new graft, usually between 10 to 15%. So it's not that absolutely zero recurrence. So that's why patients do get to have a very close follow-up with a transplant nephrologist.

[00:27:36] Host Amber Smith: Let me ask you why people should consider becoming living kidney donors.

[00:27:43] Toby Le Nguyen, MD: I think that's a great question in the sense that there's still a lot of people on the wait list, and they can stay a long time. And then organs are, deceased organs, don't come around all the time. And like I said earlier, deceased organs also have very variable shelf life. So the best way for a patient to fully have the best benefits from transplant is through living donors. And there are people who willing to donate their kidneys out of the goodness of their heart. When I talk about the kidney chain, the national kidney bank, we have a lot of patients who have a lot of antibodies in the system. So these recipients are very difficult to match, or difficult to find a donors.

So the more donors who donate and put in a kidney bank, that can essentially set off a new chain. And the ability to increase availability to find a donor that matches that recipient.But yeah, that's why I think people should donate.

[00:28:48] Host Amber Smith: Well, Dr. Le Nguyen, thank you so much for making time for this interview.

[00:28:52] Toby Le Nguyen, MD: Thanks for all the questions.

[00:28:54] Host Amber Smith: My guest has been Dr. Toby Le Nguyen, a transplant surgeon at Upstate University Hospital. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe. Find our archive of previous episodes at ngskmc-eis.net/informed. If you enjoyed this episode, please tell a friend to listen too. And you can rate and review "The Informed Patient" podcast on Spotify, Apple, YouTube, or wherever you tune in. This is your host, Amber Smith, thanking you for listening.