00:00 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.

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. 

00:49 Maddie: On today's episode, I'm joined by Manny Marcheson. Manny's husband, Claude, passed away from a type of cancer in his appendix in 2019 and despite his diagnosis, was able to donate his eyes, giving the gift of sight back to others. Welcome, Manny. 

01:02 Manny: Thank you. Pleasure to be here. 

01:05 Maddie: You'll also hear from Sofia Karageorge, our Associate Nurse Unit Manager on our Palliative Care Ward, who will talk about this type of donation and why you can still donate despite a cancer diagnosis. Thanks for joining us, Sofia.

01:17 Sofia: Hi, Maddie. Thanks for having me.

01:18 Maddie: Manny, let's start by talking about Claude. Can you tell me a little bit about him?

01:22 Manny: He was a beautiful man. He was very kind, very loving. He was a beautiful dad, gorgeous husband. He was a giver through our whole 30 years together. He was someone that was always going out of his way to help people, and it didn't matter how well or how little he knew them. Yeah, that was the kind of guy he was, and he definitely had an impact, I think, on everyone that knew him.

01:49 Maddie: When did you first realise or find out that he was unwell?

01:53 Manny: 2018 was when he was diagnosed, but he had been ill for about a year and he'd had, I don't know how many tests and imaging done, but nobody could find what was wrong. And then finally, one of the doctors noticed that he had an enlarged appendix, so they decided to remove that, and it happened here at the Austin, and yeah, and it was after that that they said, you know, he's riddled with it, it was like from his diaphragm down to his rectum. 

So he was just, and it was stage four by then, and so he was given a year at most, he still decided to go ahead and have this awful surgery. which removed, I reckon, half of what was inside him and he only lasted eight months after that. And I kind of blame the surgery for that.

02:45 Maddie: And so when you found out, or when yourself and Claude found out that he was unwell and his cancer was going to be terminal, did you even think about organ donation at that point?

02:56 Manny: No. Neither of us realised that someone with cancer could donate. You think about the organs and you think about people being on life support. So it was just not something we talked about in relation to his cancer, no.

03:09 Maddie: And so how did you find out that it was possible?

03:12 Manny: Because he was... In his last couple of weeks was at the Olivia Newton-John Centre in palliative care there and just wandering through the foyer there, I just noticed this pamphlet for organ donation and I thought that was really odd to have that in a palliative care unit because I thought these people are on life support. 

So I asked one of the staff and they said, no, it's very possible for someone with cancer to donate eyes or various tissues I guess, I'm not quite sure what the other tissues are, but so yeah I brought it up with Claude and we had a good talk about it, yeah. 

03:53 Maddie: And what did he say when he spoke to you?

03:54 Manny: Absolutely, straight away because it was a conversation that we've had in the past as a family about organ donation and even the kids we were all on board that if anything was to ever happen that we would all be keen, for us to be donors.

04:11 Maddie: And so did you then approach the nursing staff and say, "Hey, we've seen this pamphlet this is something we want to do."

04:15 Manny: Yeah we did, we did and I can't recall now, it was such a difficult time and I can't remember what the procedure was, but once he passed away, it was almost like they were waiting, they gave us some time to be with him as a family and then yeah, shortly after they were there, you know, ready to take his eyes, I guess, yeah.

04:40 Maddie: Is that a weird thing to think about, that someone could be walking around? 

04:44 Manny: I think it's a beautiful thing really, he had gorgeous looking eyes and so I don't believe they actually have his eyes, but the corneas or whatever they take. But I love that there's a piece of him still out there, you know, and that he's given that gift of sight and as he was a giver, but his last act was to give to a total stranger or maybe more than one. I think that's beautiful. 

05:10 Maddie: This wasn't the first time that you were also faced with a conversation or a decision about organ donation. Can you talk to us about Jack, your son? 

05:19 Manny: So as I said, it was a conversation that we'd had as a family. So we all knew that how we felt about it, but we never really thought that we'd have to think about it in the context of our children. So, in 2010, my 13-year-old son Jack was out cycling with his dad and he was hit and run over by a truck not far from here and he died instantly so it wasn't an option for him to be a donor.

But I do remember having a conversation that afternoon with the coroner's office and I asked them if it was possible for them to take his eyes or anything else, and they said no, because of the circumstances around the way he passed. So, yeah, that was sad for us. I think it was probably not the right word, but a waste, I think, yeah.

06:16 Maddie: Do you think that experience of Jack not being able to donate almost pushed you to donate, or pushed you and Claude to donate, given it was an option?

06:26 Manny: I honestly don't think so, because, you know, as soon as we saw it, it was an absolute, you know, the pamphlet, we thought, yeah, absolutely, it would be something that Claude would want to do. We were all on board with the idea. So, perhaps in a way, it was nice for Claude to be able to do it, because, you know, he was maybe doing it for his son as well, yeah. That makes sense?

06:50 Maddie: Yeah. Sofia, let's talk about eye donation because I don't think it's something that people think about when they think about organ donation. And it isn't donating an entire eye to someone who might be missing an eye or had trauma to that eye and they're just replacing the entire thing. You know, similar to like if someone was to donate a kidney or a liver and that kind of kickstarts your normal bodily process. Can you talk to us about, when we talk about eye donation, what we actually mean?

07:16 Sofia: Yeah, so that's exactly right. You can't transplant an entire eye and the reason for that is because that won't be able to restore sight. There's no optic nerve signals being sent to the brain which is what allows you to see images. So when we talk about eye donation, it's eye tissue that's being donated, so it'll be either the cornea which is like a clear lens on the front of the eye or the sclera which is the white part of the eye. 

So the cornea is that's the bit that restores sight and that's removed in a similar way to a contact lens being removed and the sclera would be used for example in patients that have had some sort of traumatic injury to the eye and that's just a white bit that would maybe cover like a orbital implant something like that, can be also used to treat glaucoma amongst other conditions.

08:14 Maddie: So one donation could help multiple people? 

08:16 Sofia: Multiple people, yeah, so corneas, usually it'll be two, so one cornea per recipient, however with new technology, one cornea can be actually sliced into three different layers so there can be multiple recipients from just the one cornea and the sclera I think from memory can be used up to ten recipients.

08:39 Maddie: Can you talk a little bit about the history of eye donation at Austin Health and the O&J Centre? Because it's not something that we've done for a significant amount of time.

08:50 Sofia: Yeah, so I started work at the Austin in 2015 and I just remember, you know, seeing paperwork amongst, you know, like the nursing packs for, like a consent form for eye donation. So I just didn't know any different. I just assumed that was the process. That's something that was expected of me as a nurse in charge. So I just started asking families or, you know, following the instructions, calling the Lions Eye Donation Service. 

But then after a while, I realised that I was kind of the only person on the ward doing it, bar maybe one other nurse, which was Hayley, who's, you know, helped me on this project. So yeah, after a while, I sort of started thinking, you know, like we, as a palliative care unit, we have by far the most number of deaths of any ward in the entire hospital. At that time, I think we had between 500-600 deaths a year on our ward. That's gone up to about 800 now.

09:54 And none of these patients were being screened for eye donation. So we just, you know, saw that that was actually a really huge gap in, you know, our process. And, so, let's see if we can do something to bridge that gap. So, we started this project where basically the aim was to make sure that every patient that's admitted to our board is screened for eligibility to be a donor, and then that every family gets offered that opportunity, and we've developed a screening tool that goes into the admission pack. 

And the aim is that every patient is screened on admission, and then eligibility is checked with the Lions Eye Donation Service, and families are offered the opportunity, or maybe see the pamphlet on the ward.  That's quite rare. That was one of the reasons that we did have the pamphlets there, but not many people actually look at them, so it's good that you did find that.

10:54 Manny: And I think it is because you don't associate it with someone who's dying of cancer.

11:00 Sofia: It's really surprising, well, yeah, surprising how many people just had no idea that, you know, I thought because I had cancer, I would, you know, it wouldn't be something they'd ever considered.

11:15 Maddie: Have we seen numbers or rates increase in the past couple of years of eye donations? So now that the eligibility and the screening tools...

11:22 Sofia: So, before we started the project, I think there was four donors for the year prior.

11:28 Maddie: Oh, for the year prior.

11:29 Sofia: The year prior, yeah. I don't know, beyond that, I don't know what the numbers were because I wasn't there. Then before introducing the screening tool, there was 11 donors that year that we had started talking about it. And then I think to date we've had 390 families consent. So that's since 2018. So, that equates to about 780 people having their sight restored in that time.

11:57 Maddie: Some of whom would have benefited from Claude.

11:59 Sofia: Yeah, absolutely. Yeah.

12:02 Maddie: So let's go back and talk about donation when talking about cancer. So, you know, when you're diagnosed with cancer like Claude was, donating organs seems like it's off the table because you have cancer. Why are eye donations different and why can you still donate?

12:19 Sofia: With organ donation, cancer can be passed on through the bloodstream, which is why patients are generally excluded from organ donation, whereas with the corneas, there's no blood vessels in the corneas, so there's no risk of transmission, you know, the cancer cells being passed on through the cornea. 

12:39 Maddie: And it's simple as that.

12:39 Sofia: Simple as that, yep. The only exclusions to that rule would be blood cancers and metastatic melanoma. They're the only two exclusions to eye donation, but pretty much every other cancer is acceptable.

12:52 Manny: So what other tissue can they take?

12:55 Sofia: The criteria to be an eye donor versus the criteria to be a tissue donor are very, very different. So it's much, much easier to be an eye donor. Their criteria is, like, maybe, you know, ten things. No blood cancers, no neurological conditions. No IV drug, you know, like, it's pretty basic, whereas for tissue, they literally have a folder about that thick. So it is bone, skin, heart valves, tendons. Yeah, it is much harder to have a tissue donor accepted. We've only had three in the time that we've had 390 eye donors, we've had three.

13:37 Maddie: Do you know if Claude was a tissue donor?

13:40 Sofia: He would not have been eligible because of the cancer. Yeah, cancer's an exclusion, an automatic exclusion for tissue as well. 

13:47 Maddie: Okay. As you've said earlier, you as a family had spoken about organ donation multiple times. You know, your 13-year-old son Jack said that he would want to donate if given the chance. Do you remember having the conversation about it as a family and what would have sparked it?

14:04 Manny: I guess it would have been the fact that maybe a loved one or someone we knew perhaps had passed away suddenly and it might have triggered... I don't really recall what triggered it, but we did definitely have the conversation several times. 

I think it's important anyway because certainly, I wouldn't want my son or my husband to have been thinking, would she want to, would she not want to, and then perhaps live with guilt because we turned off her life support or something like that. I even, and this is going to sound crazy, but I still say to my older son now, "If I'm on life support and the doctors tell you mum will never be able to put her lipstick on again, that is a sign to let me go." 

Because it's about the quality of life for me, and yeah, like I said, I don't want him to then have the guilt that, "Oh, should I have, is that really what she would have wanted?" Yeah, I think it's really important to have that conversation with your loved ones.

15:05 Sofia: And in fact, by far the number one reason families give for declining donation is because they never had the conversation and they didn't know what their family's wishes were. Yeah. 

15:18 Manny: And we had the conversation from when they were young. I mean, they were simple sort of conversations, but when they were perhaps six or seven, it was around when you die, you don't have a need for your heart or for your lungs or whatever. And it could help someone who's really sick, you know, and why not have those conversations with kids? I mean, I think kids are pretty resilient and get it. 

15:45 Sofia: The other thing as well I think a lot of people don't realize is that just because you've registered your wish to be an organ and tissue donor on the Australian Organ Donor Register it doesn't mean that your family knows that you've done that if you haven't told them and also doesn't mean that your family can't override that decision. 

16:05 Maddie: Well, no, it's their decision at the end of the day. 

16:08 Sofia: It's your family's decision. So it's really, really important that you let them know that what you want and don't just assume that because you registered that that's enough because sometimes it's not. 

16:20 Manny: And that's what I loved about the situation with Claude was that he actually was able to make that decision at the end, which is great, you know.

16:31 Maddie: I guess it's, yeah, it's a unique position to be in in the palliative care ward because they're usually awake and talking and cognitively still there whereas for a lot of other people who might end up in ICU it's their family who are making the decision for them. Manny, do you think about the people or the person, or however many people that Claude would have helped? Do you think about them and what their life might be like now?

16:56 Manny: Yeah, I do. I think, you know, I think they're lucky that my husband was such a generous human. I think it's great that he's, as I said before, that his final gift was something so personal and part of himself, and that, you know, he was able to help those people. And yeah, I do think about them. I do.

17:17 Maddie: If you could say anything to them, what would it be?

17:18 Manny: I'd tell them that the donor was a beautiful, beautiful man. You know, he didn't hesitate for a second. When it was time to make that decision, he made it without any second thought. So yeah, and I hope that they're well and I hope they're seeing stuff that they wouldn't have seen without his help. So I wish them well. I really hope they're doing well.

17:44 Maddie: Sofia, is there anything else you wanted to add on to that? If someone's listening and they're sitting on the fence and they're not sure if donation is for them, what would you say to them?

17:55 Sofia: I would say, you mean if being a donor? Yeah, I would say do it. Just consent, tell your family. You never know when even one of your loved ones might be in a situation where they need an organ or tissue.

18:10 Maddie: One of our past episodes, one of the clinicians or the guests who was on it had said, it's not about whether or not you would want to be a donor. It's about whether or not you would want a loved one to receive a donation. And that should be the driver behind your decision.

18:25 Sofia: Yeah.

18:25 Manny: Absolutely.

18:27 Sofia: I agree.

18:30 Maddie: I think that's all we've got time for today. Thank you both so much for coming along and telling your stories and being so open and honest. It's a really powerful episode. Hopefully everyone listening also likes it. So, thanks, Manny.

18:41 Manny: Thank you. And thanks, Maddie.

18:44 Sofia: Thank you

18:46 Maddie: If you liked today's episode, please jump on and listen to our other episodes. We've got so many others that are jam-packed with advice and tools and generally just some great information. 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 the link in our show notes to everything we've mentioned today and where you can find out more.