00:05 Maddie: Hi, and welcome to another episode of Talking Transplant, the podcast all about organ and tissue donation. My name is Maddie, and I'll be your host for today.

Austin Health acknowledges that this podcast is recorded on the lands of the Wurundjeri people of the Kulin Nation and pays respects to all Aboriginal and Torres Strait Islander nations. We also extend that respect to Aboriginal and Torres Strait Islander people listening today.

Have you ever had to wait for something? Have you had to wait for months and months and in some cases years?

For those who are on the transplant waiting list, this is their every day. The question, though, is how do you wait for something that may not come?

On today's episode, I'm joined by Associate Professor James Olver, a psychiatrist here at Austin Health that works specifically with liver transplant recipients and helping them navigate the world of waiting. Welcome, James.

00:59 James: Thank you very much.

00:59 Maddie: You'll also hear from Peter Quinn today. Peter has had two liver transplants in the last six years, and he's no stranger to being on the transplant waiting list. Thanks for joining us today, Peter.

01:09 Peter: Well, thanks for the opportunity to discuss two very unique events in my life.

01:13 Maddie: You've been through a lot since 2017. What was your life like pre-transplant?

01:18 Peter: Life was pretty hectic, normal. Kids, I've got five children. I was working overseas at the time on a major project, and I was just tired. And that triggered a whole series of events which later ended up into the transplant and getting on the list and going through that. But prior to that, I had no idea I was sick.

01:38 Maddie: When did you notice something was wrong and that you were going to need a liver transplant as a result?

01:44 Peter: Well, I was working in New Zealand at the time, and I went to the doctor because I actually had a sore foot and a bit of arthritis in the ankle, and I wanted a cortisone shot.

So at the end of the discussion, he said, "Anything else?" And I said, well, I'm feeling really tired, and I didn't know if that was from work or what would have contributed to that. So he did a blood test, and that blood test was testing my ferritin, which then identified that I had hemochromatosis.

02:15 And I didn't just have a normal bad case of hemorrhromatosis, I was 20 times the scale, and that eventually had generated three cancerous tumors in my liver. And when I saw the specialist in New Zealand, she was very quick to say, "You need a new liver."

02:36 Maddie: And for those listening who may not know what hemochromatosis is, can you give us a little bit of an explanation of that?

02:42 Peter: Simplest explanation would probably be that it's genetic. I got it from my parents. It is an accumulation of iron in organs, as opposed to iron, your normal iron levels in the blood.

It has a potential to clump and then become corrosive and then cirrhotic and then cancerous. And the reason I was transplanted at the time I was, was because one, easiest way to describe it is like a pimple bursting.

It was bursting through the skin of the liver, and had that come out, it would have been a secondary, which meant I would not be able to go for a transplant, because it's only primary source reasons that would enable me to be on that list. So it was, to me, sort of life and death situation at that time.

03:33 Maddie: Yeah. So stepping back to when you were first diagnosed with hemochromatosis and they found the three cancerous tumors on your liver, what went through your head at that point?

03:44 Peter: I think the first thing I did was not tell anyone to give myself time to actually think and process, and I didn't want to walk in the room every day and for everyone to look at me and say, "Oh, he's the one that's got cancer."

And so I was selective in who I did tell, and I didn't tell very many people at all, because at that time, I'd been given between six weeks and six months to live. So I thought I'll value that time. And then I started to assess people around me and people that contributed to my life and and started to make some decisions that I'd spend more time with those people than ones that didn't.

And then I continued working, but I wasn't actually sick, if that makes sense. It was a condition I had which was life threatening, but it wasn't actually affecting my performance other than I had a lot of fatigue.

04:30 Maddie: And once you were told you needed a new liver, you moved home to Melbourne?

04:36 Peter: I was fortunate the associate professor at Christchurch Hospital knew Peter Angus here, Professor Angus. And she was able to contact him and say, "Look, I've got an Australian here." I was put on the list.

I came over, Peter worked through the necessary paperwork, and then I was referred across and admitted here. And for a period of time, I'd have to fly over for treatments, little minor treatments, but more about managing the condition I had.

And I continued doing that for a period of time. And then Peter said, you need to be here. If you're on the list, you need to be here. So I came across and moved back, did the work up and then went back on the list.

05:22 So I just went back to work and I lived life as best as I could, as normal and then a number of months later I get a call on a Friday night and it's from the hospital and I wasn't expecting it, and they said "What are you doing?"

And I said, "Well, I'm having a pizza up in Carlton." And they said, "Well, can you finish your pizza and come in here in 2 hours, we think we've got a match."

05:47 Maddie: James, every day you're working with patients who are waiting to get that call to say that an organ is available. What's your role in the transplant process and what's life like for those who are waiting to get that call?

05:56 James: Yeah, so as part of the process of transplant, everybody gets a very extensive workup and I'm a psychiatrist and part of that workup is to see either myself or one of my junior colleagues, so our role at that point is to try and determine how the person is coping with their illness and also to predict what kind of risks for mental health consequences might be coming up, either on the waiting list or after transplant.

And it also is a role in helping the team understand the needs of the patient. My other roles would include seeing patients who are struggling whilst on the waiting list, struggling emotionally, and that may be that they can't access their GP or their community psychologist for support in that struggle and they might come and see me.

06:55 And finally, I would also have a role in looking after or assessing the mental health consequences of the transplant, which are many and varied, and it's a difficult journey afterwards, which surprises a lot of patients. They think the difficulty is getting there, but actually, on the other side, there are other challenges, quite different challenges.

07:18 Maddie: And what are some common, I guess, emotions that people feel or common feelings that people experience while they are on that waiting list?

07:24 James: Yeah, so whilst on the waiting list, there are a number of things that people struggle with. Firstly is the physical symptoms of the illness, and Peter's talked about this. Very commonly, fatigue and tiredness, poor sleep, and a number of other physical symptoms, such as pain some people have, and dealing with multiple appointments and multiple procedures.

It's almost like a full-time job for some people, being on the waitlist, it takes up that much time. Associated with that is quite a lot of grief for the losses that people undergo because of their energy and their pain and them being sick that they've had to give up quite a lot in many cases.

08:13 And then there's for everybody, there is this uncertainty. So dealing with the uncertainty of whether it's going to happen, when it's going to happen, no one knows. The patient doesn't know. We don't know. The transplant team, the carers don't know.

So this sense of limbo, of putting things on hold when you don't know when the event is going to occur, and the fear is that maybe it might not occur for you.

08:43 Maddie: For people who may be on the waiting list, who, you know, they have that physical decline and they're not able to continue. Like what you said before, James, like life as normal, essentially, and have to give up some tasks.
What are some of the other things that you would do to help yourself get through that waiting period?

08:59 Peter: You focus on the things that are important. You deal with those things because you do have to plan for the time that you're not going to be able to do things. And if you can do that, you actually started, your body's accommodating the challenge ahead.

You're starting to deal with it. You're starting to say, "Right, well, I'm part of this now." And you're given options, not results. So you have opportunities to go and do things that benefit you and that you can start to expand on, and it may be getting all your finances. I mean, one thing, I did a simple thing, I knew I'd be out of action for three months, so I started paying all my bills three months in advance.

09:39 So I knew that the family would never get affected or all my regular payments were always, you know and not everyone can do that though. Some people require their income weekly and so you've got to look at how you do that or you look at the people that can support you and how they can start to contribute and you to a degree, assess them in that process, taking some of, you know, your roles.

10:00 Maddie: James, are there any other tools that people who might be listening, who are on the waiting list can do? Whether that's research or talking to a range of people, joining community groups?

10:10 James: I feel like maybe the best way to see that is to think of it as a collaboration, being on the waitlist, as a collaboration between you, your carers and the transplant team.

And in that collaboration is the opportunity to ask a lot of questions, which is what you did, Peter, which I think is fabulous, to always take the carer into reviews with you so that you don't forget what is said because a lot of things are said during those reviews and you can't keep up with it all.

So having a carer there as a second pair of ears, for example, is a very useful thing. And also I like to get patients to have a notebook, a question and answer, Q&A notebook because there will be many questions that come up in between the reviews that you forget to ask.

10:58 You come away from the review thinking, "I should have asked that." And so having a notebook is an opportunity to write those questions down in between reviews and also to note down the answers to the questions that you've already asked so that you can remember what was said.

The next thing is the carers and engaging them. And what I like people to do is to create a list of important support people and their phone numbers and put them in their contact list so that they're ready to go and to have the carer who those people are, to have a plan to know what to do when things go awry, if they do go awry.

11:44 And then there's a whole lot of things, I think, that Peter's touched on somewhat in looking after yourself on the waiting list. And that's a very long list of things.

But essentially things like, first of all, looking after your wellbeing, that is basic things like building in some exercise on a day daily basis. Sometimes it's really hard to do that because there's not much energy left in the system, prioritizing what energy you have to the things that are most meaningful and important to you.

And I think you said that, you decided that family and some things were more important than others. You have to decide what to keep and what to let go, because he can't do everything.

12:29 Peter: I prepared a list, an Excel spreadsheet. When I got a pathology request or slip, I put all the codes down, looked them up on Google, and then I saw what the doctors were looking at. And so when I had the next discussion with the doctors, I didn't just accept that, I walked into a clinic and everything just happened.

And you walk home and as you say, writing that book was important. But the questions and answers that I had were more informed, and I made it my point of understanding more about what was happening and not waiting till I got to the clinic to be told, "You've progressed from this stage to that stage."

13:03 And it was interesting, in one of the meetings with the surgeons, they said, "You're asking questions we can't answer, but that's a good thing, because we've now got to go and look it up ourselves."

And other opportunities people have here that are available readily. You can go and speak to the dietician. You can go and speak to the physios. I mean, people don't understand when you've had the transplant and I've never had an operation in my life, it's hard to move around in bed.

13:28 I didn't think about rolling out of bed. It was a simple thing. The physio said, "Right, well, here's the process." And we practiced and did those sorts of things and build up the strength in your arms to pull yourself across. So people have to start continually thinking ahead and not just accepting where they're at.

13:44 Maddie: So you were almost your own advocate in a way throughout that entire process of making sure that you were as informed as what you could be?

13:51 Peter: Well, you're then part of that process and you're part of that team you were talking about, you're all talking the same language and it's up to the individual to say, "Right, some people have access to Google and things and some people are too sick to actually sit there and do it because it is draining doing it."

But if you do it bit by bit, you start to build that catalog and you go and look for something that's on your pathology slip, you're provided with that. You go and look it up and you say, well, they're looking at this, does that mean I've got this?

And then Google will have a number of responses to that test and you start to feel like you're part of that process and you're actually engaged in it. So you have a more rewarding conversation each time you come to clinic.

14:34 James: I love that you had a list and that you looked through things and did some research yourself. You've got to be a little careful though, in when you get information from the internet to know that it's a reputable source or not.

And some patients have gone down rabbit holes and got wrong information, which has made them more anxious. So I think it's always good to cross-reference what you're reading on the internet or finding out on the internet with the treating team to make sure that they are the same thing.

15:09 Peter: And I think part of that was I focused on clinics or reputable clinics here in America and whatever that wouldn't be, because there was misinformation and I did see that too.

15:20 Maddie: I think we've all been when we've done the googling of something and it's shown up something quite shocking and you've gone into that rabbit hole, definitely.

15:28 Peter: But the more you do, the more you anticipate the response, because it starts to fit in that jigsaw, and the jigsaw gradually comes together into one whole, and then you see how you're going and where you're at.

And you're talking about, you know, people and how they survive on the waiting list. And there's people there that you will see, that you believe will be well ahead of you, you know, when it comes through.

But everyone's assessed in a different way. And I saw people and there's people that I continue to engage with. There was one lady who had been on the list for a number of years and had not got the transplant because she wasn't, her need was not where it took her to number one, and she looked quite ill where I wasn't.

16:16 James: Can I say two things about what you just said, Peter? Firstly, I love that you asked questions that we couldn't answer and that prompted us to think about what those answers might be. And that's a magnificent example of how a collaboration works between the patient and ourselves because it's a two-way thing.
I love that.

The next point that you were just making is the comparison between your situation and other patients' in the waiting room. And that is really common. And understandable that people do that. It's often quite mysterious for patients about why they are not being prioritized, whereas other people are. Even though other people might not look as sick, it's very important not to compare yourself with every other person on the waitlist because everybody's issues and illnesses are different.

17:14 And you've mentioned a classic example that people with tumors, for example, might not look sick, but are in great danger if they don't get a transplant, whereas people who have got a failing liver can look increasingly really sick.

And if you were to compare the two, you might say, well, that person doesn't look so sick, but in fact, what is lurking in their body is actually a huge threat to them, even though they're not physically suffering illness.

17:42 Maddie: Peter, I imagine that the negative side of being on the waiting list or the hard side is that you may never get a call. You know, that call may not come through and time essentially, in a sense, can run out. Did that ever cross your mind at all while you were on the waiting list?

17:58 Peter: I was aware of people that didn't get the call and people that I'd met in clinic, that some people had been on the waiting list for a number of years and didn't get the call and didn't survive.

My destiny is in my hands to a degree and I tried to do initially what I could best, continued my life as best, doing the best practices. Listening to the advice I've been given is another thing. Some people will always think, I don't need to do this and I don't need to do that, or what they've been told in clinic.

But listening to that and following the advice and changing your lifestyle and doing things that will benefit you longer term, I think it's just taking those challenges on and making sure... I think the most important thing I found, especially second time round, was that I was part of the decision making process because I was actually informed and I knew a bit about what was going on and what to expect.

First time round, I didn't have that, so I could only encourage people to, it's up to you to go and make yourself informed and read and listen to the correct people and not the hearsay, so to speak. There's simple things you can do and there's teams of people here in the pre-transplant group in their clinics that can assist you.

19:27 As I said, like the dietitians that I said, "Right, what should I be eating?" Should I be on, and they're talking about high protein foods which you had to blend into your diet because there's so many people and so many ethnicities that their diets are different.

19:38 Maddie: James, if someone is listening who may be really struggling with being on that waiting list, what can they do?

19:44 James: First of all, recognizing it is really important. So not to just dismiss it or hope it goes away, if it's persistently distressing is to seek some help.
And there are a number of sources that you can seek help from. There are your natural support systems, I think you had a team really, of supporters, and they're important people, carers, family, friends to share those problems with them.

Then there are community resources that may be available, GPs, psychologists in the community, if you reach out, then you can seek help through that way. And, of course, there's our team, so we have a number of people who can maybe help with distress that occurs on the waiting list.

The first step, though, is to talk to the coordinators of the important contact people within the team, and they can then initiate a more expansive review, if you like, so that we can get involved, for example, or we can organize for other contexts to be mobilized.

20:54 Maddie: Peter, you've had two transplants as we've touched on a couple of times. The first time, it didn't have a large physical impact on you, but in the lead up to the second transplant you had, you were essentially living in hospital for a few months.

Did you struggle to give up any of your household roles or struggle with the fact that you were sicker than what you had ever been and you weren't able to support your family the way that you had done previously and in the lead up to your first transplant?

21:23 Peter: The second one was unexpected. I'd had five years of successful living from the first one, I was able to return to work. You know, and take on responsibilities, make decisions, do things that I did before, so it didn't limit me.
The time in hospital was debilitating.

I mean, I had an abscess that had formed in the liver that had burst. It was the size of a tennis ball that had grown through an infection. It burst and it blew up my liver.
It sounds a bit strange, but I was living on probably 20% and a liver at the time. As far as the roles that I had for the family and home, I tended to follow on from the first time to keep paying things in advance, making sure that they had minimal impacts.

22:11 You look at what roles they were. And my family, I like cooking and they love my food. So they had to find their own food for a change, learn their own recipes. And so part of that is that it's an education process for them of what you're saying that you can do and what you can't do, and progressively what becomes more unachievable.

22:33 Maddie: I imagine lots of people would struggle with that. The idea of they're almost losing a part of themselves while they're waiting, is that a common experience?

22:43 James: It's really common and depends on everybody's journey and how sick they are on the waiting list. As I said, there are some people who have their transplant not because they've got a lot of illness and tiredness and sleep, but because they have maybe tumors or inborn errors of their liver that need the liver replacing.

But for many people, there is a progressive decline in their physical health, and this is progressively having to to give up certain roles. And some of the most difficult roles to give up are the work role, for example, because many people derive a lot of their identity out of their work role.

And it's also a purpose for them, but also a source of income. So income is diminishing, and that's tricky. Then there are giving up roles of hobbies and leisure. So many people have to give up things like travel or activities that require a lot of energy, and they feel sad about giving up those roles because those roles can often give them meaning and joy.

23:55 Maddie: And independence in a sense, as well.

23:58 James: Yes.

23:59 Maddie: Did you struggle with, I guess, losing a part of your independence?

24:03 Peter: It was an opportunity to allow the people around you to do what they wanted to do to help you as well. People come forward and step up and they do want to assist you and do want to make your life easier as you're going through that process.

And it could be like people driving you out to clinic. It could be picking things up for you. There's a whole lot of different things that you would have just done naturally, which become a chore, and you've got family and friends and others that say, well, if you want anything, or can I drop things off?

And then I think people started dropping off a lot of food, which didn't help because I was trying to lose weight at the time, but it's just engaging with everybody. You've got to allow people in too.

You can't hold that barrier and say, "No, I'm the head of the family and I'm doing this and I'm doing that, and I'm the bread winner." And there are people financially challenged that this comes out of the blue.

And I had probably, last year I probably had six to eight months of disrupted life. I was the two extremes. I looked healthy the first time around, second time round, I had jaundice, I had people that have moved their children across the road, the footpath, because I looked diseased, I was right yellow.

25:19 James: So I wanted to come back to the role in the family that is the third group of losses that many people have, where they may see themselves as the head of the family or a critical hub of the family, that they just don't have the energy to do anymore.

And that's often the hardest thing to give up, those sort of roles. I always encourage people, though, to also think about whatever you give up, it's a temporary pause. And like you said, you know, getting on the list is the first step towards recovery.

I like to think that if you're giving up things, you should also think about how how are you going to take them back when you get your transplant? This is only temporary, and I know I need to ask for help now and be cared for now, but how can I take back my role as the carer in the family when I'm well enough to do so?

26:15 Peter: One interesting thing getting back onto the food was that the children who would like me to cook their food started to realize they had to cook for themselves and I'd given them cookbooks or whatever they needed. And so now we actually exchange photographs of what they have cooked themselves, and it's all about presentation.

26:34 Maddie: Peter, do you remember the first meal you cooked for your family when you got home from hospital?

26:39 Peter: My first transplant, as I said, I wasn't sick. I looked like I did 14 days, I think 21 days after my operation, I was home after, I think, seven or eight, I cooked a dinner party for eight people.

26:54 Maddie: Oh, wow.

26:56 Peter: And the physios asked me, I showed them myself cooking and whatever. They said, "Can you do a photo for us of you cooking, we want to show other people you can actually do this." I did make one mistake, though.
I tried to lift a tray of potatoes out of the bottom of the oven and I realized I didn't have a stomach muscle to do it.

So I did learn from that experience. But, yeah, the first meals, I can't actually remember the first meal, but you had to plan for it. You had to go and buy the food.

27:27 Maddie: Touching on something that you said before about, you know, family members or friends were dropping off food for you. I think, you know, a part of this process that often gets overlooked is that an individual's illness also affects the people around them as well.

They're going through that waiting period. James, what advice would you give people who, you know, family members who might be listening? What can they do to keep themselves busy as well?

27:51 James: Yeah, so it's very important to recognize that whilst the patient is the patient, the carer is going through that journey. It's a slightly different journey for them because they have an added level of helplessness as well, because they're watching and trying to support and it's very difficult.

And so recognizing that for carers to recognize that it's a really tough journey for them as well is important, and for us to recognize that for carers as well.

So we always encourage self-care for the carers. And that's monitoring the same sort of things, monitoring their routines, like making sure their wellness, their exercise, diet, et cetera, sleep is all as under control as much as possible to prepare for a long haul.

28:43 It's not necessarily going to be a short one. Sometimes it's months or even years. So it's getting into a routine. It's making sure that you also monitor your own mental health needs and knowing when and how to reach out and who to reach out to.

And again, those support systems that we talked about for patients should also be present for carers, GPs, community psychologists, friends as well. And it's very important for carers to recognize that need because they can become quite isolated and just doing the caring role all the time.

And forget the friendships that are very important in sustaining them and their own routines, their hobbies, their leisures, activities that sustain them as well so it's important that the carers don't let those things go as the patient shouldn't either.

29:36 Maddie: Was that true for you, Peter?

29:38 Peter: I had another unique experience at that time, not a pleasurable one, but the mother of the children had been diagnosed with potential breast cancer at the time I was diagnosed with the tumors in my liver and I didn't know at the time that my children came, told me later that they thought they wouldn't have parents by Christmas.

And had I been aware of that, I would have engaged differently, potentially, with them on that because I felt really bad that I didn't know that afterwards. And so they were suffering in their own way, they lived around the world, some of them.
They were all coming home because they said, "We need to be with you and with Mum."

There's things that are still happening in their lives which aren't obvious, but they don't want to share that with you because they don't want to stress you out either.
And you've probably got to encourage and I'm lucky. I have a good communication with the children that they talk openly about most things, but they didn't tell me that, and I felt a bit sad that I hadn't actually been aware of that.

30:41 James: Would you have preferred that they had Peter?

30:44 Peter: Yeah, because then I could have reassured them--

30:46 James: They were trying to protect you. But on the other hand you would. have felt--

30:51 Peter: That they're suffering.

30:52 James: I think that it's important for you to know that, to have a role in helping them as well.

30:58 Maddie: What would be one piece of advice you would give someone who may have just been put on the transplant waiting list and doesn't know where to begin?

31:07 Peter: Keep positive. There's a positive in everything and through my journey the positives were that I found I had hemochromatosis.
It didn't help me, but it's helped the family because we've all been tested, there's always something happening that you can find. It's not all about negativity, it's all about there's opportunities.

Look into the future. I always have a date set into the future. And I even had that discussion with the specialists and surgeons in the hospital, where the second time round I kept saying, I'm back at work on the 1st February, you've got a couple of months to sort this all out.

31:43 And they looked at me as though like, "What do you mean?" But we worked at it, we kept talking about it and we worked out a plan and we've got to that plan and it's being able to feel comfortable to talk with these people, don't think that they're someone that is just looking at you and you're just a number. They're interested in what you're doing and they're part of that.

32:03 Maddie: And James, what's one piece of advice?

32:06 James: Well, I find one piece really difficult, so I'm going to give three. I'm going to go back to number one, engage as a collaboration between you, your carers and the team.

Number two, make sure you prioritize yourself. And number three, get your care team sorted out early. People you can rely on, communicate with and have their numbers ready and available to ask for help.

32:36 Maddie: I think that's all we have time for today. So thank you both so much for joining me on this episode. There are a heap of really practical tools and tips in this episode for anyone who might be embarking on transplantation or in the midst of that process now. And thank you so much, Peter, for sharing your story with us today as well.

32:50 Peter: Well, I hope it's a benefit to many people.

32:55 James: I'm sure it will be Peter. And hearing like a lived experience, as we call it, is priceless, really. We can talk about it as much as we want, but no one knows it like you know it.

33:08 Maddie: Thank you so much.

33:09 James: Thank you.

33:09 Peter: Thank you.

33:12 Maddie: If you liked today's episode, please share it with your family and friends. And 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 the link in our show notes to where you can find out more.