00:00 Maddie: Hi, and welcome back to Talking Transplant, the podcast all about organ and tissue donation. My name's Maddie and I'll be your host for today.

00:13 Kyralee: Hi, my name is Kyralee Murray. I'm a proud Wakka Wakka, Gunggari, Yorta Yorta and Wamba Wamba woman and one of the Aboriginal Health Liaison Officers at Austin Health.

We acknowledge over 80,000 years of continuous care and custodianship by the Wurundjeri people of the Kulin nations of these skies, land and waters. We pay respect to their elders, past and present, and acknowledge the Wurundjeri people as the traditional owners of the country we live on in Naarm. We pay respects to all Aboriginal and Torres Strait Islander peoples. We note that sovereignty has never been ceded, and it always was and always will be Aboriginal land.

00:50 Maddie: After a short hiatus, we're back for the first episode of season two. Last season, we covered everything from family members making the decision to donate their child's organs to new tech and how Austin Health is paving the way in the transplant space. What better way to start season two than talking to two incredible people who were involved in an Australian first way back in 2010? 

I'd like to welcome Brendan Cole. Brendan is our first-ever multivisceral transplant patient. He received a new small intestine, liver, pancreas and duodenum all in one hit almost 15 years ago and hasn't looked back since. Welcome, Brendan.

01:24 Brendan: Thank you for having me.

01:25 Maddie: We also have the man who made this happen and continues to make it happen, transforming the lives of people in Australia and New Zealand. Professor Bob Jones, our Director of the Liver and Intestinal Transplant Unit. Thanks for joining us today, Bob.

01:37 Bob: Thanks, Maddie.

01:39 Maddie: So to start, Brendan, I want to chat about life pre-transplant, life wasn't smooth sailing from the beginning, was it?

01:46 Brendan: Well, right from when I was born, I had issues. Born with a rare bowel disease and also blockages to both kidneys, numerous issues. By the age of three, I'd had at least 16 operations, a removal of a kidney. So majority of my life I've only had one kidney. Yeah, it wasn't easygoing.

02:09 Maddie: What was your quality of life like as a twelve-year-old let's just say, what was life like for you then?

02:14 Brendan: Well, leading up to twelve, in some cases, I was a normal kid, but then if I'd get sick, if I'd had a blockage in my bowel, in hospital for three weeks at a time, two weeks at a time, then as I hit my teenage years, that's when it sort of progressively started to get worse. 

You know, the blockages became more severe. Different surgeries opened me up, basically, and to have a look to see what was going on, cut a bit out and then close him back up, cross fingers, hope that things would go right. I did my best. I got dealt in life with a hand of cards and I just played them to the best of my ability.

02:57 Maddie: Do you remember how many surgeries you had before this big one that we're going to be talking about today?

03:03 Brendan: To be honest. I've lost count. 

03:07 Bob: Yeah, I did a timeline for you, Brendan and I lost count.

03:11 Brendan: We just stopped counting. It was like, okay, Brendan's going to hospital. He's having this done. Let us know when you'll get out. And I've got two brothers, two sisters, all older, and it's a case of, "Oh, Brendan's in hospital again." And it was just part of life.

03:28 Maddie: Yeah. Bob, for someone like Brendan, who's born with a genetic condition, what's the long-term prognosis?

03:37 Bob: Well, Maddie, look, it's a really interesting question, but the moment Brendan's born and that diagnosis is made, we have a feel we know what the future is going to be for Brendan over the next few months or years. So, I think Brendan had his first surgery within months of life, and it gets repeated and repeated. So Brendan really spends his time bouncing from one medical problem to another. And some of these are really serious and life-threatening without surgery.

04:07 Brendan: If I could just jump in there, Maddie, repeatedly throughout my life, I was told, "Oh, you'll never see 13 years of age" or  "You'll never see 20 years of age" and it was mostly if a doctor was trying to get a point across to me to say, you need to have this done, and it was, "You'll never see 30." And, yeah, as Bob just said, you'd bounce around and you sort of don't know what the future's going to hold

04:35 Maddie: Yeah. So how did you end up in the care of Austin Health, then? So you're at this point, the blockages are getting worse, I believe you weren't even living in Melbourne or Victoria at the time.

04:44 Brendan: So I was born in Victoria, born out in Traralgon, and moved around a bit, mostly on the east coast of Australia, was living on the Gold Coast, Tweed Heads, Coolangatta area. And I was doing a conference in Brisbane, and I was introduced to a lady called Julie Bines. And she came up to me after I've spoken. She goes, "I've got someone for you to meet." 

Because back then, doing an intestinal transplant or a multivisceral transplant was an absolute pipe dream. Basically I was told it was the only hope I'd have. So I'd asked around, but no one was doing them.

05:25 It was always a case of, "You need to go overseas." In the back of my head, that didn't sit comfortable with me, so I wanted something done in Australia. So, Julie said, "I know this person in Melbourne, next time you're down, contact me." And we were down in Victoria and I messaged Julie and she goes, "Oh, come to Melbourne on this day and I've got someone for you to meet." And I walked into this room and here's Bob. And since then we sort of haven't looked back. 

05:56 Maddie: When you met Bob, what state was your health in? Because this was kind of your last, your last chance, in a sense, wasn't it?

06:03 Brendan: Yeah. So I was on a drip, a nightly feed of what's called TPN, and it would basically keep me alive. That feeding would go for about 13 hours overnight. So it'd be sort of a thing where I'd hook up, sleep and then disconnect and go about my day. I was slowly running out of access points. The veins in my body were breaking down. I was still reasonably healthy to get around during the day and do a gamut of different things. But meeting Professor Jones sort of was this hope. Yeah, it was a momentous occasion

06:45 Maddie: Bob, do you remember meeting Brendan?

06:47 Bob: Of course I do. Yes. And we had this young, bright, active man who was totally dependent on parenteral feeding, intravenous feeding. I mean, Brendan's life was made up of doing his daily activity, but then hooking up to these lines overnight and needing quite substantial volumes of fluids. I mean, ten or twelve litres sometimes per day, and that included everything that he needed to live. 

And I think Brendan originally when I saw him, I thought this is a man who really spends his, wakes up in the morning, thinks how am I going to survive another 24 hours?

07:22 Maddie: When you first met Brendan, was transplant an option at that point? You meet this gentleman who's very unwell, what is the next kind of course of action?

07:36 Bob: Well, we've been thinking about intestinal transplantation because of patients like Brendan. It's a very unusual condition to be. I mean, if you get renal failure, you get a kidney transplant possibly, or dialysis or liver failure or heart failure or lung failure, there is a treatment available. But for intestinal failure there's really no treatment other than intravenous feeding. And there's a time limit on that, how long you can actually survive. 

So when we met Brendan, we'd been thinking along these lines. There were a small group of patients in Australia who really needed this therapy, very small number. And it's very easy to ignore it and say, it's all too difficult. Let's just, you know, we don't have to worry, these patients are scattered, we don't know them, we don't see them until occasionally they turn up from Queensland and we do see them.

08:18 Maddie: We mentioned right at the start that Brendan was Australia's first multivisceral transplant. For those listening at home, that might not know what that means, what does it actually mean to have a multivisceral transplant?

08:29 Bob: Well, it's multiple organs all transplanted together.

08:33 Maddie: And from the same person.

08:33 Bob: They come from a donor. So a donor who's donated, maybe liver, stomach, intestine, pancreas, small bowel, large bowel. And that entire group of organs are going to be transplanted into the patient who's getting the multivisceral graft.

08:46 Maddie: No one in Australia had performed this type of transplant before. In fact, no one in Australia or New Zealand at this point. And so you're met with Brendan and you think, okay, he could be someone who could successfully have one of these done. Did you feel the weight of the prep like that on your shoulders?

09:03 Bob: Well, exactly, because there are only a relatively small number of centres around the world doing this, maybe up to 40 or so worldwide, and they're not doing it because the results had been not that brilliant. Incredibly difficult to do, very difficult patients to manage. But when Brendan turned up, we thought, Brendan is exactly the sort of patient that we really need this therapy for, if we're going to do it. Brendan is heading toward the corner where he really needs this.

09:31 Brendan: Do you remember what I actually said to you on that first day that we met? I think back to it now, and it's actually really, really arrogant. But I said, if you do this, I'll make it work. And all my life I'd had all these different procedures and gone through all these different things, and it was a case of, I know what it feels like to go through big surgeries and push myself to get better. 

And I thought, see, I'd seen so many young kids like myself go through illnesses and not make it and pass away. And growing up with that, it sort of sits like a monkey on your back. And so that was part of what really pushed me to go, you know what, I'm going to do this. It's going to be a success.

10:26 Maddie: Were you nervous?

10:28 Brendan: A percentage of me was. Part of me was, no, this is getting done. This is going to be done right. Seeing the professionalism that they took in their jobs gave me the confidence in knowing that I was in the right place.

10:44 Maddie: So, Bob, how does a surgery involving four organs differ from one? Obviously the number is different. But in terms of the complexity, the risks, the challenges.

10:55 Bob: Well, it's enormously challenging. You've got four organs to deal with that all have the potential to go wrong or reject. So Brendan might have been very confident and not nervous. But I tell you what, Brendan, we were pretty nervous. There are some advantages to having a multivisceral graft. In that sometimes the immune system can be overwhelmed by the sheer volume of tissue. And so there's some sort of hidden advantage, potentially.

But what drives it is the fact that Brendan was at the end of the road. And without this treatment, he was going to die. Otherwise, we wouldn't possibly even consider the risk, the risk was not going to be worth taking.

11:31 Maddie: So from the moment that you decided that you were going to give this surgery a go, what was the waiting time between finding a suitable donor?

11:40 Bob: Well, we were pretty nervous, and we wanted to make sure Brendan really needed this transplant. We kind of sat around for a bit, Brendan, didn't we?

11:48 Brendan: Yes, we did.

11:50 Bob: We were pretty nervous. We thought we didn't want to shorten your life, Brendan. I mean, we could have picked you up and transplanted you straight away, and you could have died, and we would have actually shortened the amount of time you had to live. So we left it for a couple of years, almost. 

And during that time, Brendan started to deteriorate. And in fact, toward the end, we thought we'd maybe overshot and left it too long. Because you still then have to wait for a donor, someone who's died, who's going to donate their organs. So even when you decide to do it, there's often a prolonged waning period.

12:17 Maddie: How come all of the organs have to come from the same person?

12:22 Bob: Well, it's the nature of, they're all hooked together. So rather than transplanting them one at a time, we're actually transplanting them all together on block. So they come together. 

12:31 Maddie: Right, okay. 

12:32 Bob: And that actually makes it a much simpler procedure. Rather than doing four or five separate transplant operations.

12:39 Brendan: It was originally, when I was first told about it, it was described to me like emptying a suitcase and then refilling the suitcase back up.

12:48 Maddie: It's a strange thought to think about, isn't it, when you think about your own body?

12:52 Brendan: That conference that I originally did back up in Brisbane, I met a surgeon from overseas, from the US, who had done a few of them, and he actually showed me photos of past intestinal transplants that he had done, and it was phenomenal. The body looked like an empty suitcase. 

13:11 Bob: That's a good analogy.

13:11 Maddie: Wow, that's a strong visual to those listening at home.

13:14 Bob: There's nothing in there. It's really quite traumatic. 

13:15 Maddie: Yeah. 

13:16 Bob: Not too many other operations where you're going to see something like that.

13:19 Maddie: No. So, we're at surgery day. Can you tell me a little bit about it, Bob? So I read that it lasted more than 12 hours and I'm sure that there were dozens of people involved in it. Is there a method to the way that you do things?

13:32 Bob: Very slowly, very carefully. Look, it's challenging because we don't really know what Brendan has left in his tummy. It's extraordinary. After there's multiple procedures and operations over 25 years or so, we didn't actually know what was in there. We thought we did, but we were only going to find out when we actually operated on Brendan. 

So it took quite some time to remove everything that was in Brendan that remained there. His liver, his bowel, all the other bits of pieces that had kind of got stuck together. And it's quite a difficult and delicate operation. And that's probably one of the more difficult parts of it. Once it's empty, once you've got that empty suitcase, you've got plenty of room to sort of think, what am I going to put back in there?

14:10 Maddie: Was there a celebration once the surgery finished? I'm imagining like everyone in the theatre kind of doing a little jump...

14:17 Bob: I think it's more an extraordinary sense of relief that Brendan's alive and that we've ticked all the boxes that we needed to tick. In other words, we've really started where we wanted to start. And that's the best way to start after a transplant. You don't want to start off on the back foot, you know, already in big trouble before you get going.

14:37 Brendan: It's a bit of a case of once doing the surgery, it's then, okay, we've done all we can. Now let's see what happens from there. Because as Bob said earlier, there are a lot of things that could go wrong.

14:49 Maddie: So the surgery is almost the easiest part in a sense, it's what comes next. I mean I don't want to downplay the complexity of the surgery, but...

14:55 Bob: It's a good analogy. Yeah, 'cause it's the uncertainty. The problem with transplantation is you can have a fabulous donor, you'd have a fabulous operation, everything's going very smoothly. But the outcome still remains uncertain because it's immunological, it's infectious disease, it's how Brendan's body is going to react.

15:11 Maddie: And you can't plan for that necessarily.

15:14 Bob: You can plan for it only in being prepared and knowing everything you possibly can know about Brendan. In other words, there are no surprises. There's nothing down the track where we said, I wish we'd sorted that out beforehand. We've got to sort it all out beforehand and actually have a plan for how to manage it if it happens.

15:28 Maddie: Brendan, do you remember waking up?

15:31 Brendan: I don't actually remember. I've been told stories. Apparently I woke up a lot sooner than everyone expected. And yeah, I actually asked one of the junior doctors because I didn't actually believe it happened. I woke up feeling like something had gone wrong and they closed me back up. I felt fine. I thought I'd feel like I'd been hit by a truck.

But I woke up feeling absolutely normal, like, I had tubes sticking out of me. But I'd had that before. And it wasn't until he goes, no, no, no, relax, it's done. 

16:10 Maddie: And it worked, I think.

16:11 Brendan: Well, yeah, I'm still here.

16:14 Bob: Well, Brendan was in big trouble, Maddie. And as I said, we'd left, we'd delayed and sort of sat on our hands, partly because we were nervous. And your liver, Brendan, was actually in terrible shape. And we knew that by the time we finished the transplant, you will have a new liver that's doing all the things that your liver didn't. And that's why you felt better. You actually had organs that were working, and despite this huge operation, you actually feel better.

16:39 Maddie: Bob, how precarious were those first few days after surgery? Was everyone kind of on a...

16:46 Bob: Exactly, Maddie. We were very, very nervous to see what was going to happen. It was the first that we had done. There hadn't been that many done around the world. And even if we had had a lot of experience, we'd still be nervous because you're never quite sure this experiment's going to work and how Brennan's going to react to these organs. So we spent many days waking up in the morning and wondering how the night went for Brendan, logging onto that computer at 06:00 a.m. to see if everything was okay.

17:10 Maddie: What were the sorts of things that you were looking out for?

17:12 Bob: Well, rejection is the first one, infection is the other, and any sign that these organs may not be functioning. So we have multiple things we looked at for each of these and very reassured, you know, by 10:00 in the morning, when we felt that ticked all the boxes for the day. But it was an hour to an hour thing. It wasn't even like just looking at Brendan once a day. We were sort of watching hourly, virtually, especially the first few days.

17:38 Brendan: So when we worked up for the transplant, I was actually told I could be in ICU for a long period of time. I could be in hospital for a long period of time. Do you remember how long all up I was in?

17:51 Bob: You tell us.

17:53 Brendan: I was in ICU four days.

17:55 Maddie: Oh, wow.

17:58 Brendan: And we actually had to wait a day for the room on the ward to get ready.

18:03 Maddie: Okay, so you could have gone earlier.

18:05 Brendan: And I was out after 40 days. Now, that's not to say every transplant like this is going to happen.Things worked. It just worked.

18:15 Bob: Yeah, sometimes you're lucky. And Brendan, you were lucky.

18:17 Brendan: I was very lucky. 

18:19 Bob: Everything worked brilliantly. So we're kind of very grateful for that.

18:23 Maddie: At what point did you, Bob, relax a little bit into thinking, okay, this is going well.

18:30 Bob: Look, incrementally, it's almost every day. It wasn't like it was a set point. It was just that every day things were good, tomorrow's good, and the next day was good. And so we kind of gradually relaxed and there's no really set... Because you can really be doing brilliantly, but even at one month, suddenly have some problems. So it's really one of those things that you take day by day. Just cross your fingers that we're not going to have any problems in the next 24 hours.

18:53 Maddie: Brendan, before you had this surgery and as we were talking about earlier, you were getting all of your nutrition, so all your food through your IV at night you couldn't really eat for over a decade. That's a really long time. How did that impact you?

19:08 Brendan: So I could physically eat, I just couldn't absorb anything from what I ate. So in the early days when I first started to try and eat again I'd end up vomiting it back up. When I was 21 I was left with a bag and so it was a case of try it. If it passes through, fine, but you're not getting anything from it. 

It was pure enjoyment and it was really an adaptive process because my family didn't know how to celebrate moments in life. So if it was my birthday I can remember birthdays where we didn't have family dinner anymore because, "Oh, Brendan doesn't eat, what do we do?"

19:49 Maddie: How did that impact you, though?

19:53 Brendan: Oh, look, my family loves me regardless, and it wasn't a "poor me" sort of thing. It was like, okay, we've just got to find a new normal. And I think that's the mindset that has got me through everything that I've been through, is finding that new normal, being able to be adaptive. It wasn't easy. It really, really wasn't easy at times, but you push through, you find what works.

20:20 Bob: Not being able to eat is an extraordinary social implication. Just think, our whole day is based around eating, and all our socialising is about eating. And being able to actually eat is a pretty profound, profound quality of life issue for the patient.

20:34 Maddie: And so, Brendan, because of this surgery, you can now eat and absorb.

20:39 Brendan: I can eat, I can absorb and I can definitely put on weight.

20:43 Maddie: Do you remember the first meal that you had? First proper meal, should I say? Because I know you would have started off quite slowly. First proper meal you had after surgery.

20:53 Brendan: So I remember doing an interview once and the interviewer actually offered to pay for me to go out to a restaurant. I couldn't help it. I picked my favourite steak restaurant in Melbourne and it was fantastic. My now wife, Kirilli, she and I, we went and enjoyed this great steak dinner and fried onions and then I thought, oh, we'll order dessert as well. And anyway, about a week later, he rang back up and we're doing an interview on the air, and he goes, "Oh, you didn't tell me you were ordering a dessert as well." 

21:37 Maddie: Is there anything else that you could do in those kind of early days after surgery that you couldn't do pre-surgery besides eating? 

21:44 Brendan: Sleep comfortably. It was funny because there would be moments I'd be sitting at home and it'd come nighttime, and I'd go, oh, I've got to go hook up to my machine. And then Kirilli, my wife, she would actually go, no, you don't do that anymore. You don't have to be confined to your bed for 12, 13, 14 hours. And, yeah, it was a release. It was a freedom, it was, yeah... 

22:13 Maddie: How do you feel, Bob, knowing that you've been able to so drastically improve the quality of life for Brendan?

22:20 Bob: Well, I think that's kind of why we do it, to hear the story that Brendan's telling. Just that as a man who could actually get up in the morning and have breakfast and then maybe have lunch, go out to dinner and then go to bed, that's the big achievement. He goes back to being sort of normal. 

But it's watching and being involved with patients like Brendan before they're transplanted where we saw incredible performances. I'm not sure I could have gone through what you had been going through before the transplant, Brendan.

22:47 Brendan: Well, just before the transplant, I was told by I'm not sure who, a figure was thrown around that I probably had about three months to live, and it was sort of a case of one more infection and you're probably not going to be here. You know, I was yellow, I was... My liver had pretty much packed it in. And, yeah, everything just happened at the right time. And I'm still here. Thank you.

23:14 Bob: You were in big trouble. I've got some photographs of your organs, particularly your liver. We haven't got much to show for your bowel because there really wasn't much in there, but your liver was pretty awful.

23:23 Maddie: Bob, we're the only place in Australia or New Zealand that do these sorts of transplants. How many multivisceral transplants have we done since Brendan's?

23:31 Bob: We've done 13. And again, it just reflects what we're saying. The very small number of patients who really are ultimately going to need this. 13 in twelve years.

23:40 Maddie: What's next for transplant?

23:43 Bob: Well, that's a tough question. I might be pretty brave to predict. I think maybe we'll all be put out of business by stem cell therapies and, you know, we won't be needed anymore. But that's going to be a long, long way away

23:55 Maddie: What do you mean by that? Is that where you can regrow?

23:58 Bob: Yeah. You might be able to regenerate organs and it's not going to be so easy if you're going to try and regenerate multiple organs. But you could imagine maybe creating a pancreas, or a functioning organ that worked like pancreas. Absolutely.

Being able to reinstill into the liver stem cells that will grow again and regenerate some form of liver function. So it may be that some of the components of transplantation are going to disappear. And there's experimental work in that area, but it's going to be a long time before that becomes a viable option.

24:28 Maddie: Brendan, what's life like for you now, with 15 years, 14 years?

24:34 Brendan: We're coming up to 14 years. Well, I work full-time now. I'm a postie. Which if you had said that I had a full-time job back before the transplant, I'd look at you and shake your head and go, no, I didn't have the strength, I didn't have the energy. It was impossible. Now, not only am I working full time, I have a son. Now, before the transplant, we were told to freeze and lo and behold, we did IVF.

And he came along and first go, he's nine now, and we've actually got a nephew living with us who's twelve, who is like our son. So, yeah, I've got a family. I've got a future. I've got a future with, thanks to Bob and the team at the Austin hospital. I wouldn't have had that before.

25:29 Maddie: Did you ever think that you'd get to this point?

25:32 Brendan: No.

25:32 Maddie: You wouldn't be here without your donor. Do you often think about who that person might have been?

25:38 Brendan: I do. I...

25:50 Maddie: You can take your time.

25:53 Brendan: So, my donor, I actually do know a little bit about him. I'm very protective of him and his family, and he's a hero. He not only saved me, but he saved others. And he made the choice to donate and then let his family know. And that's part of the battle, is even if you want to be a donor, you need to let people know. You need to do what's required. Fill out the forms, let your loved ones know. 

26:31 Maddie: They're the final decision makers at the end of the day.

26:32 Brendan: Of course, and stories like mine can happen. I now have a son. I work full time. I volunteer into the community. I do voluntary work with Apex Horsham, Club 15. So, yeah, I've been given a chance, and I'm running with it.

26:52 Maddie: Bob, if you could speak to anyone who's listening at the moment about signing up to donate, what would you say to them?

26:58 Bob: Well, Brendan's an extraordinary example of why we'd want to donate. Actually, Maddie, it isn't whether we want to donate, it's whether we would be an organ recipient. Because if someone in your family you loved, close, near, was dying, would you want them to have a transplant? 

I've talked to kids in school, and of course, a few kids have put their hand up to be a donor because they're the ones the families have spoken to. But when you say who's got a brother or a sister? And if they needed a transplant and they were going to die, who would want them to be transplanted? All the hands go up.

27:26 So it's not so much whether you want to be a donor, it's whether you or I want the ability to transplant someone we love. And so it's sort of like a big game. We've got to be in it so that we can be protected. And the other thing, as a surgeon, it's a utility thing, because the organs are so beautiful and wonderful. 

And it's an extraordinary waste to think that within minutes of dying and your heart stopping, that these organs are no longer usable. So I think, just on a practical terms, as a surgeon, it's rather nice to think they're going to keep going for a while, even though I'm no longer there. So it's an extraordinary gift.

28:01 And the third thing, I think, it's often extraordinary that it happens at all, Maddie, when you think about it, you've got often someone who's died, who's youngish, unexpected family catastrophe. It's absolute disaster. And in the middle of all that chaos and disaster, decision's made that they will donate organs to someone else, and they don't even know who that other person is. They might not even like that other person, and some of their organs are going to go to save a life.

28:28 Maddie: Yeah, it's the ultimate gift.

28:29 Bob: It's an extraordinary gift.

28:31 Maddie: I think that's the perfect way to end this episode. So thank you both for joining me, and Brendan, sharing your incredible story, and Bob, sharing your expertise. If you liked today's episode, jump on. Please listen to the others. Give it a like and everything we've spoken about, all the links will be in the show notes. Thank you.

28:50 Bob: Thanks, Maddie.

28:50 Brendan: Thank you.

28:53 Maddie: If you liked today's episode, please jump on and listen to season one. We've got five other episodes jam-packed with advice and tools and generally just some great information. Also, check out our website to find out more about the exciting work we're doing in the transplant care and research space.

And most importantly, if you haven't done so already, please sign up and join the organ donor registry today. Visit donatelife.gov.au and help save a life. We've included a link in our show notes to everything we've mentioned today and where you can find out more.