Domino Liver Transplant

Hello, and welcome to the gifted life podcast where we have conversations about Oregon tissue and eye donation. I'm Lori Steele. I'm Joey Boudreau. And I'm Sarah Blakemore, which is not Sally Gentry.

What? I'm Sally. I'm Sally. I'm a really great, happy to be here.

Well, I'm a family advocate here at Lopa. Yep. And I've been a long time proponent in advocate for Oregon donation and you discovered me, luckily enough. Oh, see, I like when they remember the little people.

Alright, graduate of LSU, social worker. Yes. And I knew one day, I know you're meant for great things. So you are touched by donation, your brother is a hero.

Yes, my brother, Dougie, was an Oregon donor. He is the reason that we are all here and my family is such an advocate for Oregon donation and making life happen. And when she was in college and trying to figure out her path, you just, her passion, she was going to do something good. And I'm so happy and pleased that she was choosing to help us make life happen.

So amazing. Now she's here because who's out? Who are we missing? We're Tarki.

That girl. That's very nice. So Sally is off at a conference learning more great things to bring back to the gifted life. So Sarah, we appreciate you.

Glad to be here. Yeah, here on the podcast, lots to talk about today. First, Domino liver transplants. Yeah, what is that?

Exactly. It's all about no argan being wasted. How this rare procedure is saving more lives and who's your greatest critic? If you're like most people, it's you or my boss, Joey.

So how do you take back control and silence here in a critic? All right. We have lots to get to here on the gifted life. We hope that you share what we all learn here on the gifted life.

We try to make it as easy as possible. We're easy to find once you find us. Don't forget to rate and subscribe to us. You can find us on Apple podcast or whatever your favorite podcast that might be or you can find us on our website at thegiftedlife.org.

Good. Active on social media guys. Joey, get better at that. That's a no Facebook.

Sarah, I'm doing my best. That's for the young kids live, right? We're there too on Facebook. They get to like podcast Twitter and Instagram at giftedlifepod.

Like I said, we try to be as easy as possible to find our goal is to spur those healthy conversations about organ tissue and eye donation and we are ready to share now. Hang on to your hats. Here on the gifted life, we are so pleased that Dr. John Seal is joining us once again.

Hey, doctor. Hey, good to have you back. A domino organ transplant surgeon at Ashner multi organ transplant Institute. And we are picking this guy's brain again.

You've listened to the podcast before he's a great interview, but a domino liver transplant, which is rare, right? You're out there asking yourself, what is it? I am too, doctor. What?

What is a domino liver transplant? That's a very good question. And it's a little bit of a complicated answer, but it's something that I think we can talk through here. I think the first point that I would want to make is that even though there are very few of these performed every year in the United States and even worldwide, it is a really important example of our overall goal, which is to use every organ that we can every time.

And even though it's a handful of livers that matters quite a lot to those, you know, five to seven people a year who receive those livers. And I think our overall strategy and transplant and certainly among the OPOs across the country is to find ways to use every organ we can every time. And this is a great example of being creative about figuring out how to use organs in domino liver transplant. So what is it?

What would cause you to need a domino or need to enact a domino transplant, I guess, for a liver? I'm familiar with the kidney paired. This is very unfamiliar. Yeah, this is a little bit different than living donor and a little bit different than a paired exchange.

So it's a really unusual situation that occurs in just a handful of medical conditions. And in this case, the case that we're kind of prompted this discussion is a case of an alloidosis. And that's a very long tricky word. And it basically means that the liver in these patients produces an abnormal protein called an alloid.

And this an alloid is folded in a weird way. And this protein, over time, can stick to other tissues in the body. So it gets stuck in the heart, it gets stuck in the nerves, and it gets stuck in other tissues and causes different types of problems. And it builds up slowly over time.

So it's not something that causes an immediate problem. But over the course of several decades, 30, 40 years, it can cause heart failure and it can cause really severe debilitating neuro-opities. So in these situations, the best treatment for that is to remove that liver that produces that abnormal protein and replace it with a liver that does not produce that abnormal protein. And those livers produce a normal protein.

So that's the indication for the liver transplant. The liver that they have, though, aside from producing this abnormal protein, actually works great. They have normal bilirubins, so it manages biol normally. They make normal proteins.

They have normal coagulation. Structurally, the liver looks perfectly normal. If you look at it, you wouldn't even know that they had any problem. So essentially, the transplantable liver, you know, in the simple world.

So yeah, so exactly. When we look at it from that standpoint, someone else who has liver failure could use this liver, and it would work totally normally in that patient. The only caveat, the only catch is that you want to put it into someone that you don't expect to live for 50 or 60 years. So when we look for a good recipient for a domino transplant, you wouldn't put this in someone who's 18, 20 years old.

You would imagine that that abnormal protein in the recipient could cause symptoms. Okay, so we typically look for recipients who are over the age of 60, who otherwise would not likely experience the effects of the abnormal animal protein over the remainder of their lifetime. So you mentioned... I'm in awe that we know all this.

Yeah. Goodness. It's definitely weird to understand. It is pretty incredible.

And the first one was done back in the mid 1990s out of King's College in London in the UK. A really smart group of folks put their heads together to try this. And then worldwide, a number had been done and followed up and was found to be really safe and effective. And now I think at most major centers in the United States, when they have a candidate whose indication for transplant is amyloid, then they'll often look at suitability for doing a domino.

So you guys have partaken in the domino liver transplants. Can you tell us a little bit about how that went? Yeah, right. So we had a situation.

We had a patient who was on the waiting list who had amyloidosis. And in his situation, the amyloid protein had primarily affected his heart and he had progressive heart failure. And his heart function had gotten bad enough that he needed a combined heart and liver transplant. And so in this situation became a little more complicated because we had to coordinate the possibility of a domino transplant with a heart transplant as well.

And so the way that it went in this case is we went through an evaluation with both the liver team and the heart team. And we got our teams together and we coordinated how we would first perform a combined heart and liver transplant. And in that case, a donor became available and the heart transplant was performed with a heart from this deceased donor. And that went first and once the heart gets put in and restarted, then we do the liver transplant.

And so the liver transplant in the situation is a little bit different because we have to think about taking the liver out in a way that we can fill it back in in someone else. So you have to do it a little bit differently than you would normally, preserving as much of the length of the blood vessels as possible so that we have enough to sew into another recipient. So we very carefully took out the liver from the patient with amyloid and we transplanted that deceased donor liver into that patient and then the liver from the amyloid patient was taken into an adjoining room with another recipient and that transplant was performed in a standard way. So there was two recipient teams for livers and a recipient heart team as well as the deceased donor team.

So a lot of coordination of a lot of teams. My jaw is on the floor, right? But so how long, I mean, is this all done in a couple of hours since you have these teams or can you walk us through that? Yeah, well it takes several hours and the heart transplant portion usually takes a lot of around three hours and then after that we performed the, we take the patient off of bypass and restart the heart and then we perform the liver transplant.

A normal liver transplant takes around four hours. This one took probably around five or six hours because of the extra attention we had to pay to taking out the liver in a safe way to be transplanted again and then the other recipient surgeon surgery takes about, you know, four to five hours. So all in all it was probably close to 15 to 16 hours of operating. Wow, this is also incredible.

I have a question. Sure. Or the patient who's receiving the amyloid liver. Do they have to, does that have to be disclosed that this is coming from a domino procedure as well as?

It does. Anytime, basically in transplant in general, it's only the approach that we take at our center and I think at most centers do. Anytime there's some factor of the organ that you're transplanting that might affect the outcomes, it's important to disclose that variable. And so we do that for a number of different conditions for standard donors and I think you've had podcasts on that with some of our other infectious disease specialists.

In this case, you know, the amyloid was disclosed to the recipient and we went over in detail that, you know, we didn't expect that this would cause any problems for many, many decades. That it's an opportunity to, you know, get a transplant sooner than he otherwise would have based on his medical score. And that otherwise we thought it was a, you know, a really good high quality liver. And we had had this discussion with him prior and anticipation of the possibility of the domino happening.

We had to look at our list at the time and took the first patient who took the criteria based on age and surgical complexity. So he was a little bit prepared already to, to, for the situation and, you know, was willing to accept the liver. I was thinking, you know, obviously those patients will be on the same match run, on the same list. So you can go to that next patient.

So is there, are there certain things that you guys have to do with the second patient now with the amyloidosis now impact or, you know, I know you said it's going to take a long time, but is there any treatment variations that you do besides just the typical immunosuppressants? Yeah, no, that's a really good question. And I think that's something that's evolving over time. Right now we don't have any good treatments for amyloidosis in general.

So there's not a lot you can do, you know, to mitigate the development of the symptoms over time. There are, and it's kind of beyond the scope of this podcast, but there are a lot of different molecular subtypes of amyloidosis and they each come with different death or risk factors. So it's something that we monitor closely. Certainly, we look for any early signs of neuropathy or, or things like that that we would expect as a possibility.

But we do have enough experience worldwide now to know that development of symptoms in the recipient is actually pretty rare. The most recent publication on this was just a couple of years ago and they looked at over 500 cases of domino liver transplant worldwide over the past couple of decades and only two out of over 500 developed any type of symptoms at all. So as long as you select the right recipient and carefully evaluate the liver that you transplanting, the overall outcomes are really great, even better than average. Well, I'm sure you also had to build a level of trust to between you and the patients, which I think is commendable that you were able to agree with that as well.

Yeah, it's really important to be able to do that. And what's really touching about this event is that they didn't know each other going in in both of the domino participants, the donor and the recipient. And just last month they met for the first time and we were able to capture some of that on video. It was a really emotional moment.

It's a lot like an anonymous living donor, but they both had gone through a liver transplant in this case. And it was really an extraordinary human connection there between the donor and the recipient. Really something special will be a part of it. Wow.

Well, Dr. Seal, you were on. We were talking about a little boy named Briggs who needed three transplants and that thing that you were part of their family. Now you're not just a doctor who just knows lots of things.

Yeah. While you were here, I said, so what's next? Dr. And you said, you never know.

I did not see this coming. If you got me, you got me. Yeah, yeah, that's really great. That's one of the great things about being a part of a transplant in general.

Or an ordination or recipient surgery is a really special human connection that you don't get with every branch of medicine. And I know we all feel pretty blessed to be a part of that. Well, we are active on social media. A lot of the folks who were tied to donation in some way, shape or form.

And there was a picture of you from a party or something like that. And I just love, like I feel like I know you're my buddy now, right? So, but you're up there. And that's my doctor.

He helped me with this. Oh, he was so kind. And I thought, my goodness, you know, you hope to leave your legacy, right? We talk about these heroes and you're that one person making a difference in a different way.

Yeah, well, I appreciate that a lot. But yeah, I'll tell you what, there's a lot of people who go unnoticed in this process because they work behind the scenes. And you know, what I really want to do is turn attention to, you know, how many people it takes to make Translion possible. And you know, how many people it's hard work to unnoticed.

You kind of get all the attention if you're the one they're doing the operation. But the reality is that there's dozens of people with every transplant that play a critical role making it happen all the way from the organization teams, you know, in our case, over at LOPA, who do a lot of hard work to identify and work with the donor families and then all the people who get patients ready for transplant, make the transplants happen. And then that real critical care that happens after transplant. So really is the whole team.

And I think a lot of the other people should get as much attention as the surgeons do, to be honest with you. The humble doctor, see, I see why people like you. Obviously, you guys have done one, you know, this past year. Is there anything that we can do to help spark more of these?

Yeah, I think that's an interesting question. There are a number of people looking at other potential opportunities to do a domino. There are a couple of other metabolic conditions, all of which are pretty rare. But other conditions like amyloid where you potentially could use it as a domino.

A lot of the other ones though, raise some concerns about how well it would work long-term in a recipient. And I think that's called some reservations. There's a couple of pediatric metabolic conditions, one called maple syrup urine disease. And that could potentially use for domino.

And that's been done as a couple of pediatric centers. It is a pretty rare event. I think that I think you all do really well at LOPA, and I'm sure a lot of OPOs around the country, is, you know, and that's what I led with, is you've got to look at every organ every time. And you've just got to think about what can be possible.

And you have to question things that have prevented us from doing stuff in the past. And so there may be a liver or a kidney or a heart or a lung offer that we normally would pass on, and we should think about why we pass on that. And is it something that we can modify? And it is something that would work in a certain recipient if it doesn't work in another.

And keeping your frame of mind like that for every donation possibility, I think, is the key to increasing donation across country. So, Dr., is there a video of those patients that are meeting? I'm sure people are going to want to learn more about this. Yeah, it's really touching.

And I can get the link to you. I know that our marketing folks have that, but we can make sure that you get that. And if you want to include that on the website, I think it'd be great. I know I was really moved by it.

I think it'd be a great thing for people to see. And we appreciate you. And I'm going to ask you again just because I said you had last time and look what you came back with. Like, what's next?

One second. Oh, that's a great, great, great question. It's hard to top a liver, heart liver domino. That is a trifecta that I think doesn't come around too often.

But I think we'll use our imaginations and come up with something good. And always there are winners. There's lives being saved and those lives being celebrated. Dr.

John Seal with Ashener. We appreciate your time and your talent. Thank you. Thank you very much.

At this point in the episode, we usually get some mental health advice from our girl Sally. But since she's not here, we've got Sarah. Oh, and he's covering Sarah? No, it's so sad.

But she'll be back. And so will you. We're going to be back. I would love to come back.

What are you talking about today? Go ahead and talk about combating our inner critic. So can y'all all agree that most people in this world are their own worst critics? Yeah, when it comes to things like work and body image, there's so much pressure and stress on us today, we're going to talk about some ways that we can combat taking a little bit of the pressure off ourselves.

Yeah, that would be nice. I could use that. Yeah, it's true. You know, we get a lot of pressure.

Like I said, so why not have some quick little tools that we can use to help ourselves, okay? So essentially the idea behind this is being able to recognize your own thoughts, which sounds kind of crazy. We're thinking about ourselves all the time. That's working really nice.

Yes. I have that mental. I talked to myself daily too. It's recognizing the thoughts that are harmful to us because I think it's good at a certain level to be your own credit because you can feel motivated and prepared better.

But what happens when your inner critic is the loudest voice? Our thoughts control our feelings, which control our actions. I get that before a big presentation. I got to put myself up, you know, calm, breathe, calm down.

You got this, right? She's like, you're the greatest. You got this, Laurie. I do.

But I have to, if I'm going to go out and I think make an impact, a positive one, right? It's absolutely right. And if you sit there and tell yourself continuously, I'm going to fail. You might fail.

Joey. Yeah. I'm my own worst critic in those things in presenting when I'm on the golf course. I see a big body of water on the right side.

Of course, I'm thinking I'm going to be terrible. So what do I do? I hit a big old body of water right there instead. I should be saying even a pound of 300 yards right now.

Right. You can get the green jacket. I believe. Just growls.

Okay. Thank you. So I think it's, I think it's so important to not only have positive thoughts and inner dialogue, but have helpful thoughts as well. So I don't know how good of a golf player you actually are.

I'm not to be the best. You can actually do it. But a helpful thought might be I'm having fun and I'm going to do the best I can. Maybe not.

Yeah. No, I'm going to do the one. See, that's more attainable. I think for you to do that.

Right. But this is actually good. This is good thinking. So I have a middle schooler.

So there's a lot of body image like everybody's built differently. And I mean, she's taller there, but she's just bigger than everybody else. And so I'm trying to help her see things. Like what you're talking about, right?

And I think, you know, there's a push right now about positive body image, but we still in this country, we have so many standards that are hard to reach up to. So how do we help our young women who are doing that? We're criticizing themselves for how they look. And I think it's really important to point out that they're loved and that they can love themselves.

And that's helpful. I keep it real. Like, right. I have laws, quiet, Joey, as well.

But just talking it through like everybody is going to question whether you look at that swimsuit or that dress or, you know, those kinds of things. But how do you feel? Right. You know, and teaching her to recognize when she has that negative thought about herself, to combat it with something that's going to make her feel better and for the long term as well.

Yeah. The funny thing is most of the time I find it's the people themselves. It's in, you say your own worst critic. Other people are fine with the way you look in a bathing suit, but it's just, it's you and like me and we look, we see every little flaw that we've got.

Oh man, I wish, you know, this would be different. And it's funny if you just realize, okay, look, nobody else's care. Nobody cares what you look like in the book. Right.

And they're not going to do those jeans. They won't. They're not going to notice that, you know, skin tag you've got on your elbow, you know, so it's right. Right.

And it's that idea of, you know, do I look bad, but do I feel good? So it's getting to a place where we can challenge those negative thoughts that we have about ourselves so that we can prepare to succeed. Not because we're about to take a selfie after this episode. So I'm in the mirror.

I'm like, man, right? But then that's something that camera and I'm like, why? Why? Because when they're wrong with a nice filter, that's going to make yourself feel better.

I just want to make sure everybody was okay with that because I will put the filter on there. Awesome. We appreciate it. Sorry.

Any other words of wisdom? What do you want to leave us with? I think just don't judge yourself too harshly. Just be there for yourself and be there for others and you'll succeed.

Let's try to be a good human every day. That's it. Make the world a better place. That's what we're trying to do.

All of us and you listening there too. Alright, we appreciate you hanging with us. Where to come? In every episode of the get the life we honor a hero.

And today's hero is Carter Lorett. We learn more about Carter from his family. Carter Lorett was born June 16th, 2016 and passed away. February 27th, 2019 at the age of two.

Carter was diagnosed with autism one month before his accident. Carter had many struggles such as not being able to speak or follow simple commands. But other than that, Carter was very smart. He loved to laugh, play with blocks, swim, climb on things, run, and play on his swing side.

He was rough and tough. Not many things could hurt Carter. He was a joy to be around, sweet, kind, and lovable. Carter's favorite bear was his green gummy bear.

Although his family loves and misses him, they were very glad that they were able to give many people a better quality of life. Carter was able to save four lives through the gift of organization. To learn more about Carter's story, visit the here is page at lopa.org. And now we pause and say thank you to Carter for the gift of life.

And our question and answer segment today, I've heard that the liver can regrow or regenerate. Is this true? And I toss that over to our chief clinical officer, Joe, what do you got for us? Well, the answer is yes.

Fortunately, because of the amount of damage that we put into our bodies, it is very nice that it can regrow and regenerate. So the toxins and things, it basically repairs itself. And in the organ transplant world, we obviously use that to our advantage because we can split the liver and put it into someone who it might be just a little too small for initially. And then usually four to six weeks, it regrows and regenerates to fit the size that it really should need.

Incredible. So incredible. We want to hear more from you about more questions you have. So reach out to us.

You can reach us on social media, email or you can give us a call at 504-648-3477. We may even be able to play your message on the podcast. Another episode of the get to like in the books, guys. Special thanks to Dr.

John Seale for putting our model of every organ every time into action with this domino liver transplant coming on and explaining a little bit about what it really is. And I'm like, my jaw is still on the floor. It's incredible in our presentations. But we never know what's going to happen tomorrow.

And when something like this happens, it's like, whoa, it's happening. The weird thing about it, besides that, is that you've got a perfectly healthy liver of someone that you recover from that person because it's no longer useful for that person and transplanted lives for another 20, 30 years. And what's even more incredible is that these medical experts know that this process works. It's incredible.

It's just another way to make life happen. Yeah. And so we're going to have them back on to see what other miracles are being performed there. And then we have to think, Nissara.

Nissara, more as she's known around here, Sarah smiles. Yes. I want to thank you all for allowing me to be here. I've had fun.

It's good. Well, we just love that you've taken up our calls with such passion and are helping these families and making your own journey. We like that. We miss you, Sally.

I do miss you, Sally. This is tough. You know, you get them. Miss you, Sally.

There you have it. Hopefully you enjoyed this episode. You learned with us in this ride here. And if you were inspired to register as an organ, I, and tissue donor, you can do that now.

Register me.org. It just takes less than a minute guys. It's really quick. And hopefully you'll go out and do something that you would normally do to help us make life happen.

That's what this ride is all about. Thanks for listening. Until the next time. This is a production of the Louisiana Organ Procurement Agency or LOPA.

The gift of life is hosted by Lori Steele, Joey Buudro, and Sally Gentry. Our executive producer is Kirsten Hines. Producer is Shalom Caraway. Intern is Rebecca Rannem.

And we are recorded, engineered, and mixed in our Covington Louisiana studio by Troy Perez.