Hello and welcome to the gifted life podcast where we have conversations about organ, tissue and ideonation. I'm Roy Steele. I'm Joey Boudreau. I'm Sally Gentry.
And today guys we are focusing on a miracle of transplant joining us in studio, a doctor and a recipient mom. We're going to break it down. Amazing. And then we're going to talk a little bit about the complexities and transplantation.
What happens when things don't go exactly as planned? And then we're going to talk about the top five phrases that tend to turn people off and what you can say instead. I just say it. I might have all five.
I just say it. I'm going to say it. I'm nervous. I'm nervous.
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Here on the gifted life podcast we are talking about the complexities of transplantation. Things don't go as planned. We have a specific example for you guys on this on F podcast who can make life happen. Yeah.
Unfortunately, Laura, we've got one of these clinicians with us here today who happen to be heavily involved in multiple breaks operations. We've got Dr. John Seale, who is an abdominal transplant surgeon out of Ashener Health System in New Orleans, Louisiana. He is right here in studio with us.
Thanks for coming, doc. It's a pleasure, thanks. How do you feel about this guy, man? I like him.
It's pretty cool dude. It's my favorite. All right. Yeah, so he was a month old or no, I guess he was a little bit younger at that point who's about two weeks old.
And we first heard the word, it's Billiaria-trisa and at that visit with that GI doctor, he mentioned transplant and that was the first time I was like, wait, what? What are we going to do? And he said, don't worry about that. That's a long way away.
We have some things that we can do beforehand and hopefully he'll grow and he won't need a transplant for a very long time. So we had a major surgery at one month old and then that's kind of when you kind of watch and see if you know, if you are going to get to grow a little bit older and wait to have a transplant or if you're going to need a transplant sooner rather than later. And just like everything that breaks his life, it seems like we need things sooner rather than later. So we got started to do testing probably around four months old for the CFP was eligible to have a lower transplant.
And so I'm sure just knowing you, you're doing the research, you're starting to figure out what's happening, right? Do you know about donation? Were you pro-donations? No, I had actually removed the heart from my license when I was pregnant with Briggs because I believed in the myths that they weren't going to save me if something happened.
So I removed it and put it back on very quickly right afterwards. So my goodness. All right. So Joe, we're going to bring you and Dr.
John in now to talk about these complexities and how do we get to a four year old thriving boy from all these complications? Yeah, one of my questions, Doc, is I know, you know, in Briggs' journey from what I understand his first transplant was from what we call a split liver donation. Can you tell us a little bit about what that is and the differences between the different types? So one of the challenges we have with pediatric transplantation is obviously most of our patients are very, very small and a vast majority of the donors are adults and those livers, those whole livers are too big to transplant into small infants and even into younger children.
And so if we relied only upon pediatric deceased donors, that donor pool would be extremely small. So in the late 1980s and early 1990s, we developed a technique where you can separate a small piece of the liver and transplant that piece of liver into a recipient. And that has really opened up a huge opportunity to transplant very small patients, particularly infants like Briggs. So this type of technique, I guess you guys have perfected it to the point where it's okay.
Yeah, yes, I've perfected every single operation you ever do in transplant brings you a great deal of humility as this story illustrates. But we have made a lot of progress with a lot of the techniques and tools available to do this operation with a very high rate of success. And there are two main categories of split liver transplantation, living donor, split liver transplantation and deceased donor. And there are some advantages and disadvantages to each.
The real advantage to living donor is that you can be very selective about the donor with respect to anatomy and size. So in this case, we take potential, someone who's willing to donate a piece of their liver, they go through a series of tests, a lot of that involves imaging of the liver because we have to make sure that the blood vessels that go into the liver and that drain out of the liver are suitable to split in half. Okay. So the amount of every four donors that gets evaluated for living donation is suitable.
But in those situations, we can actually schedule the operation. We can do it in a very controlled setting. And there may even be some immunologic benefits to having, say, a mother donate to an infant. So that is something that we see quite a bit in the pediatric world.
The problem, the sort of Achilles heel of that is that the blood vessels on living donor split liver is into being very, very small. And they're very prone to thrombosis. And the reason for that is why would that be different from a disease? Yeah, no, it's a great question.
The reason is that when you do a split liver in a living donor, you have to keep the remaining liver alive for the donor, right? And so you have to preserve blood flow to the remaining portion and you have to have adequate blood flow to the piece you're going to transplant. So that's what becomes challenging. And so in those situations, you have to cut the artery much higher up than you would for a deceased donor.
And at that point, it's much, much smaller. So a lot of pediatric centers will do that under a microscope. They'll have plastic and reconstructive surgeons come in and help with that part of the operation. And one of the things that's really helped advance that part of the field is the really robust network of pediatric transplant centers in the United States.
One of those consortions is called split studies in pediatric liver and intestine transplantation. And Brittany and I are both heavily involved in that. And one of the benefits is you get shared practices. And so if you relied only upon your single center's experience, you would have a much smaller experience.
You go to these conferences, you learn best practices. And that's allowed us to advance living donor split liver transplant. So the second alternative and what Briggs had was a split liver from a deceased donor. And there's a couple of advantages to using a split liver from a deceased donor.
This operation goes a lot like a standard organ recovery from a deceased donor. It needs to be relatively young and healthy adult. And we do a CT scan just like we would in a living donor to map the blood vessels and make sure they're suitable to split. But the main advantage is when we do the split, we're able to recover extra vessels from the liver as well as additional blood vessels from the deceased donor that we can use for that vascular reconstruction.
So from a technical standpoint, it gives you a lot more options and allows you to do potentially a safer anastomosis. In fact, we just did a very complex recipient who had a pediatric recipient who had cytosin versus meaning that all the organs in the abdomen were on the opposite side that they normally are and the child had biliary atresia and required a split liver transplant. So in that case, we were very reluctant to do a living donor because we didn't have as many vascular reconstruction options. So the deceased donor split in that case worked out well.
So the success rates for each of these talking the sea stoner versus living donor? Sure, sure. Rit large, the success rates are great for both. Okay, so when you compare that to a standard organ transplant, there at least is good and in some cases better.
If you can get through the early technical phase, there's some, there are very high quality livers and there's some potential with immunologic matching that allows those graphs to have lower rates of rejection, less injury and last longer. So some of the complications that are common with split livers, I'm assuming I know from talking to Brittany that Briggs split liver, his first donor liver was lasted for four days or some of these the common complications that you guys usually see? Yeah, that's a great question. So the first thing that I would say is fortunately none of the complications are common.
So they still end up being relatively rare, but certainly when they happen, it's a really big deal, potentially life threatening. And we have a system in place to make sure we address him with the highest priority. With Briggs's first split liver, things initially went very well. In fact, all the blood flow and the ulcer sounds looked good, the liver itself re-perfused very nicely.
The initial function of the graph was very good. The complication that we ran into on the first liver is related to the blood flow through the portal vein. And in liver disease, particularly biliary atresia, the liver scars and when the liver scars, there's a lot of resistance to blood flow through the liver. So you get something called portal hypertension or very high blood pressure in the portal vein.
And the way the body responds to that is it forms colaterals or it forms extra vessels that bypass the liver and go back to the heart. And that brings that pressure closer to normal. Okay. And when we do the liver transplant, we take that diseased high resistance liver.
We take that out of the circuit, if you will, it's really a plumbing phenomenon here. And then we put back into the system, a graph that's totally normal and even a little bit bigger in size than the original one. So the resistance to flow goes way down. So it's really easy for blood to flow through the liver.
And that means it tends to flow a little slower. And when blood flows slow, it does have a tendency to form clots. And so there are a number of things that we tried in those first couple of days to augment that flow to make it a little more robust. But ultimately, it was a flow phenomenon that led to that portal vein clotting.
And when that happened and we weren't able to correct it after a couple of surgeries, then the best option is to have a new graft with a different flow physiology. At that point, we've got a beautiful little baby boy who's just gone through this major surgery. And now we're a couple of days out, guys have done a couple of different surgeries to try to get the clots broken up and get the blood flow back to normal. So and you mentioned, you know, looking at possibly another transplant.
So what's the process there? Does he get put closer to the top of the list now that he doesn't have a lot of time or does he get put back at the bottom? Yeah, that's a really great question, Joe. I'm glad that you asked it.
One of the things I think we should be really proud of as a transplant community is that we have designed a system with the top priority being keeping people alive. And so, and that's important for everyone, but in my opinion, it's particularly important for children because they're technically challenging operations. And if you do run into a complication, we want to make sure we make that the absolute priority. So when Briggs was listed for his second transplant, he got a category, a 1A, which is a very high priority.
Basically, he goes to the top of the list for any options in the region. And that is basically a way to ensure that whatever the first available opportunity to safely retransplant him is afforded to him for every donor. Right, Brittany. So all these emotions and feelings are coming back up from four years ago from me just reading on social media, but you were going through, you were living it.
So tell us what you were thinking, what you were feeling. Yeah, it's kind of a weird spot to be in because I know what has to happen in order for the surgery to happen if we're dealing with the sea stoners, especially. And so for us, it was always kind of in our mind, in our back mind of, you know, this has to happen in order for my son to stay alive. But on top of it, you know, we knew that this was the only hope for him, that having a normal life or even getting to stay with us for a few years, you know, that was our only option at this point.
So we went into surgery with him smiling, flirting with the nurses that night, just being a normal little six month old baby. You know, I remember holding him, I remember looking at him and just thinking, it's all going to be okay. It's all going to be okay. I mean, we knew we were in the best place that we could be in.
We had done our research. We felt like we were in the right spot. We then am off with, you know, hug and a kiss and we just trusted that these surgeons and these nurses were going to take the absolute best care of our baby. And we knew that they were just from meeting with them before and stuff.
We knew that they were going to do everything possible to save him. So when we got to see him afterwards, it was a joyful occasion. I mean, we got to extubate him pretty quickly right after surgery. We got to hold him.
We got to feed him. Always going well. I remember we had gone back to our apartment that we were staying in and we got a call from Ochner that day saying, you need to come back. We're going to have to take him into surgery.
At that point, I don't think we knew. I mean, we didn't know what was going to happen. So, but thinking back on it, not knowing that you were not going to see your son awake for the next month and half, always took me up still four years later. And just that last time getting to hold him before we brought him back into that surgery to try to repair and reestablish blood flow was probably the hardest day, just because, you know, we've gone from such a low to such a high high to now back to such a low and we were so scared and didn't know what was going to happen, but we still had complete faith that it was all going to work out.
All right. So now you're facing a third transplant. Yeah. So we had had the second transplant at that point.
We had had, you know, we were back to our high high and then finding out shortly afterwards that he was relisted again was sort of a low again, but still having faith that it was all going to work out and still trusting that he was going to keep fighting and he was going to stay well enough to receive a transplant because we do know that there's all kind of things that have to happen for him in order to be well enough to have a transplant. So even though we were facing those obstacles, we still felt like it could happen. So you're from her perspective. You remember this doctor coming in?
Oh, yeah. Yeah. Yeah. And so then were you part of that delivering that news that we have to go back in?
I was a part of the team and I was involved in the donor operation for the second surgery and sort of to go back to the point we were talking about prioritizing options for kids who need an urgent retransplant. The challenge from the surgeon's perspective is that particularly when you've had a second graph that is struggling is you want to get them transmitted quickly, but you really have to make sure that it's a perfect graft. And that can be really difficult because the graphs don't come labeled as perfect and nonperfect. They don't come labeled as well work and will not work.
There's a whole spectrum of variables that you have to consider very carefully. And when you have a kid who's this sick, there's a real urgency to it. And that can be really, really challenging to make those decisions. You obviously want to do the right thing for the kid.
You don't want to wait too long, but you also don't want to rush into something. And for his second transplant, that was really challenging because we really had carefully evaluated the donor and was by all the things that we measure was really a high quality donor. We did a split liver for that as well. Technically, it went fine and all the blood vessels were fine.
And unfortunately, when we did the transplant, it fell into a category called primary nonfunction, which is particularly rare in, and I think, the pediatric world because we often have really high quality donors. But occasionally you do see it and it's not always well understood. So that's what put us in the situation that Brittany was referring to, where you've got a second graft that went in and your hopes are really high. And then you're really surprised, the medical team, very surprised that the graft was struggling and obviously devastated that you're back in the same situation.
But this second transplant did enable Briggs to live long enough to get that third transplant, which is still the liver that he's gotten now. Yeah. Which is the one that stops her right. Right.
Right. And that's exactly right. And I think that's exactly the way to look at it. At the end of the day, the system worked despite having complications with the first two graphs.
The remarkable gifts from the donors that made all three of these liver possible is why Briggs is alive today. So that's really a credit first and foremost to those donors and the donor families and then also to the infrastructure of transplant and the allocation system that we have in this country. So for those of you out there listening, I don't want to alarm anyone. I know we are talking about complications and complexities in transplant.
The numbers in Dr. Seale mentioned a couple of times are very, very low on this. You mentioned primary non-function when the organ doesn't function, when it's transplanted and the complications with the blood clotting. We're talking very, very minuscule numbers, considering the amount of patients that are on the waiting list and the success rates that are all with transplant.
Right. That's exactly right. The only thing in that most high volume experience centers is 2% or less the rate of portal vein thrombosis in the same range, 1 to 2%. I think even lower.
Yeah. So to put those folks, the poor Briggs was able to slip into the 1 to 2% on both of those. He's meant to stand out of this. In this case, yeah.
Yeah. A vast majority of patients in liver transplant and other organs as well have a very high rate of early success, very high rate of 1 through your grass survival. So I'm listening to this in these big terms and these major surgeries and thank goodness these clinicians know what they're doing. But Brittany, when you talk about this guy, Dr.
Seale, he's just a cool guy. He's like, right? He's part of the family, right? Like you trust him with your baby.
That's amazing. It's not just a doctor patient relationship. There seems to be more after all you guys have been through. Oh, yeah.
I mean, whether he wants to be or not, he's part of the family. He's got to be so excited to be in the same room. We're going to talk about this. You want to teach?
Yeah. No, he's definitely a part of our family. Just like all the other doctors and nurses really that worked on Briggs and kept not only him alive, but I feel like me alive as well. Just because at that point I was four months postpartum in not necessarily eating or just really stressed out.
I think it took a village to help us and we definitely had that village behind us. Yeah, and you seem involved. Not just medical side, but supporting his family. Yeah.
Well, I mean, that's fantastic to hear. Brittany knows that I have an extraordinary respect for all the things that she's doing for transplant. And you do have that question. It's really, really important because there's no way as a parent to ever imagine what this would be like.
And I'm a parent myself. And even though I live it from the doctor side, I just can't imagine having to go through what Brittany and her family had to go through. And it's a real testament to the strength of their own family to go through that. And you're exactly right.
It isn't like a standard doctor-patient relationship. There is not just one doctor. There's multiple. There are nurses.
There are texts. It's really a robust team of people providing for Briggs. And we're all a part of one big family. And it's also important to acknowledge that not every patient has that degree of support or tools available to manage through this.
And the psychosocial professionals in the healthcare world are really important in helping provide that. Now, Brittany, at the beginning, you said you had taken your heart off your license because you believed the miss. That was a way back then. Now we know you have the heart on your right leg checked, right?
Yes. You're one of our biggest advocates. And what I love about you is that when you go out, you honor all three of the donors. And you talk about these clinicians and you tell people, learn the facts because that's what you turn to.
That's what you relied on, right? Yeah. And so why do you do what you do? Why do you continue to press forward?
Just knowing that there is support out there through other moms that have gone through this or other dads that have gone through this and support within our own liver community. And that there's people who've been through what you're about to go through and you don't have to do it alone. And I like you because you said there will be complications. Yes.
And then paid for work. I love that because you're one of our biggest advocates and we appreciate that. Now guys, we're going to continue this story on our next podcast. That's going to be episode 102.
We will actually talk to one of the heroes moms that saved Bridget's life that more time we thank Brittany and Dr. Seal for joining us today. You're on the gifted life. Turning people off is what we hope not to do, right?
But we're learning from Sally. Joe, she said she had some phrases, phrases that turn people off. She was looking in your direction. I'm thinking with the idea of the five.
All right, we are all ears, ma'am. Well, you know what, Lori and Joey, sometimes we say things that we think we're sounding kind and empathetic and kind and tune with what we see going on for people. And then I read this piece of research. I thought, oops, I am guilty of doing this too.
Do you ever say something like, I just calm down. It'll all be okay. Oh, no, that was this morning. Calm down.
Why don't you chill out? Chill out. Well, about the same thing because you know, something that we're not talking about your kids. Okay, we're talking about your old task.
Yeah, yeah, go ahead. We'll pass on that one. You're upset, you just want an event and you just want somebody here what you got to say. And the last thing you want to hear is we'll just calm down.
You'll be okay. You know, when you stop and think about that and I thought, oh my God, I'm making angry though. Somebody will come in. I'm in a feeling.
There you go. Instead, what you can do is when somebody is saying all this, just say, is there something I can do to help? It changes the whole dynamics of that conversation. Okay.
Makes sense though. I'm probably emotional by this point. Okay. And then I'm really guilty of this.
You're looking tired. I think I've said that to you before, have an eye. Oh, you did it, Sally? I'm not a ty.
I thought you can feel her because of that. Yeah. Now, see, I just thought that I was making a good observation, who I probably really was, but I agree. I agree.
But the thing is this, you know, it's really best to avoid commenting on people's appearances. Unless it's positive. Unless it's positive. Unless it's positive.
Unless it's positive because when you do say things like that, most of us automatically go to the negative. Whether that's meant that way or not, that's how we perceive it ourselves. So next time you're just like, wow, you're looking really good, even though you might look a little tired. Let's go.
Let's go. Yeah. Go girl. I think everyone is guilty of saying, well, that's just not fair.
Well, you know, there is the fallacy of fairness. There ain't none. It's all what we place our judgment call on, whether we think it's fair or it's not fair. And you know, now if you're calling out major discrimination that might be of illegal or ethical sense, now that's one thing.
But if I don't like the way you just said something to me and you want me to do something, so that's not fair. Why does it truly have to do that? Well, in reality, that's really not a good thing to say. You know, so you just want to pick your battles very carefully when you're saying things like that.
Now, you ever say it's always or never? These are absolutes. And try to stay away from absolutes. Absolutely.
Tough though. You always do that, Joe. Because sometimes we never do this or you're always doing it. I mean, I don't know how many times I would have, you know, well, just discussions I'll say with my husband.
You always say that. And I go, well, that's not true. He doesn't always say that. I mean, so, you know, we need to now, if it's something that really hurts your feelings, the really good thing for everyone involved is to be able to say, you know, when you said that to me, it did hurt my feelings.
And that way because maybe the individual talking with you was just kind of, you know, throwing it off the top of their head. But if you just address it in a very nice way, you know, not really. Really? Because I'm famous for saying 80% of the time you do this.
Well, at least you're not saying always. Also, 68.2% of the time it happens this way. Never say that, Joe. But, you know, we can always say that when we're addressing other people's what we perceive bad or negative behavior.
But when someone says it to us, right, how that goes over. So, calm down, Sal, calm down. And then the last thing is, cheer up. It's all going to get better.
Now, we're all guilty of saying that to people. And the thing about that is maybe they just really don't want to cheer up. Maybe that person just needs to kind of go through feeling, you know, sorry for themselves or feeling badly about a situation. So rather than doing that, why don't you just say, well, we're just here to help.
I'm here to help if I can be of any help to you. Here if you need me. Always. Always or never.
Everybody calm down. Yeah, there you go. Good job. Look tired.
Yes, that's it. All the time. Not fair. The cheer up.
There you go. Now, maybe I won't use them again in 2019. I got my list. Hope you got those down too.
All right, more to go. In today's episode, our hero is Steven Green. Steven passed away on March 11, 2017, at our Lady of the Lake Regional Medical Center in Baton Rouge. It was 35.
It was a native and resident of thin springs. He was very giving, funny, and caring. He never hurt anyone. We will miss him greatly.
And now we pause to say thank you to Steven for the gift of life. And our question and answer segment today, we're going to keep Dr. Seal here because I think he's the best one to answer it. Why not?
He is the perfect one for this. The question that came in was, how does someone get listed for a transplant? Right. That's a great question.
The number is a lot of ground. So you can be listed for a number of different types of organs, heart, liver, lung, kidneys, pancreas, intestine, correct. And so for each of those organ transplants, there's a set of indications or reasons to get that transplant. And that evaluation starts usually with your primary care doctor.
And if you have a medical condition that affects one of those organs, then you'll probably be referred to a specialist. And that specialist will conduct some further testing and determine whether there's really an issue of end organ failure. And if that is the case, then you can go through a process of being evaluated for transplant. And that's a pretty robust process where we look at each potential candidate from a lot of different angles.
And ultimately, you want to ask the question, are there more benefits from transplant than there are risks? And if the answer is yes, then it goes through a committee evaluation at a particular transplant center. And then you get listed through a national organization to be on the waitlist. Okay.
Thank you so much. That was some wonderful information to share with our listeners. And if you happen to have a story or a question that you would want for us to answer, you can find us on social media, email info at thegiftedlife.org. Or remember, you can always give us a call, 5046483477.
And that'll do it for this episode of the Gifted Life Number 101, guys. It was a unique one too. Yes, it was. We thank Brittany Elleser and Dr.
John Seale for joining us in studio and talking about the two different perspectives of such a unique case. First, you have the medical team perspective of how he navigated the challenges and then, of course, the mother's perspective during that same time. Now, we're going to continue this story on the next episode of the Gifted Life. That'll be number 102.
We bring in Briggs's donor family, one of his donor families to the Gifted Life Mike. So you won't want to miss that, the hero perspective. Or if you'd like to know more about their story or maybe more information, you can always follow us on social media. And hey, did we inspire you today to sign up?
To be a donor, register me.org. Register me.org. Just takes a couple of seconds and you can help make life happen. We certainly appreciate you listening and we hope that you go out and do something that you wouldn't normally do to help us make life happen.
Thanks for listening. This is a production of the Louisiana Organ Procurement Agency or LOPA. The Get to Life is hosted by Lori Steele, Joey Boudreau, and Sally Gentry. Our executive producer is Kirsten Heinz.
Producer is Shalom Caraway. And we are recorded, engineered, and mixed in our Covington, Louisiana studio by Troy Perez.