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.

As we've spoken about throughout all of our episodes so far, transplant is transformative and it gives someone a second chance at life.

But with that comes fear, and, for some, a bit of a road to recovery as well. Life will never be the same, but you have no choice but to make the most of your second chance. Today, I feel very lucky to have two special guests with me, including Jess Chappell.

Jess had a liver transplant in 2022 after her pregnancy caused a life-threatening condition. Welcome, Jess.

01:07 Jess: Thanks for having me.

01:09 Maddie: We will also chat to Nada Ferfoglia, who had both a kidney and liver transplant after doctors discovered a rare genetic liver disorder. Thanks for joining us today, Nada.

01:18 Nada: Thank you, and thanks for the invite.

01:21 Maddie: Before we jump into this episode, I wanted to chat a little bit about life pre-transplant and life pre-illness for both of you as well. So, Nada, were you always relatively healthy?

01:31 Nada: Yes, I was. I actually was very active. I used to do boot camp. I'd do fun runs. I'd go to Fernwood four times a week. I actually had a very good life and I was healthy.

01:46 Maddie: And, Jess, you weren't sick at all initially, is that right?

01:50 Jess: That's right. I was your average career woman. I loved playing sport, and apart from the odd sports injury here and there, I had a relatively healthy life.

02:03 Maddie: Jess, things were quite dire for you. The doctors said that you have two options a transplant or death, essentially. Can you tell me a little bit about what happened to you after your daughter was born?

02:16 Jess: Unbeknownst to me, quite shortly after the birth of my first child, I became quite unwell and I did not know it. I put down the symptoms of fatigue and weight loss to being a new mum, and I didn't consult my GP or anything.

I just thought I needed to soldier on. And it wasn't until the christening of my daughter when a family member who is a nurse spoke to me and expressed her concern for me on site and that she thought I needed to go to the hospital immediately.

02:57 And subsequently I found out that I was suffering from a chronic autoimmune condition, which I found out afterwards was quite rare and was triggered by childbirth. So quite a shocking time. I thought I was going to celebrate the christening of my daughter, and I ended up in intensive care within 24 hours. So quite a shock.

03:25 Maddie: It's such a difference from what was meant to be one of the happiest times of your life, the birth of your first daughter and ending up going through this. You put your life on hold for more than a decade. You fought this for twelve years. What did that twelve years look like?

03:40 Jess: Going from relative health to being told that you have a chronic condition that is most likely not survivable is a traumatic experience. You lose a lot of things. So I lost the ability to have any further children. I lost the ability to work because of the condition. I lost my immune system. And so I lost the ability to be in the general population and to be active in the community.

So I couldn't go to the pool. I couldn't do the groceries. I couldn't drop my daughter off at school. It was a challenging set of circumstances. And I'm sure anyone out there waiting for a transplant because of a chronic illness understands what I'm talking about.

04:31 It's quite a fearful experience and I slowly and progressively declined over those twelve years and after about eight years of being able to control the level of decline, I had some severe episodes which required hospitalization for a number of months.

And about four years ago the doctors told me that I really only had the choice of transplant or that my health would decline to a point where it would not be survivable.

05:12 Maddie: Twelve years is a long time. Did you at any point have a thought of just enough is enough? You couldn't keep going through it?

05:21 Jess: To be honest, all the time. It's not like treading water, it often feels like you're losing yourself and the deep that you delve into being unwell more of the time than you are well, you lose the connection to the people around you, to my family, to my daughter. That's probably the most challenging part of being unwell. It's an incredibly lonely experience.

06:01 Maddie: What kept you going?

06:03 Jess: Hope. Hope is the thing that drives you. And whenever I started giving up on myself, my 10-year-old and my husband would hope enough for me. The love and the extraordinary patience, the small things, the cups of tea, the dance shows and performances that my young daughter would do to cheer me up just briefly.

I would be on the phone to my mother every day, if not three times a day, just to pull myself back to that place of hope. Because waiting is challenging. And I'm sure, Nada, you would agree that waiting, it's challenging to watch the clock tick.

07:01 Maddie: And Nada, you were on the list for about three years for a transplant. Can you take me through when you discovered that something was wrong?

07:08 Nada: It all started about well, actually, it started when I was around 55 years old. I started to produce kidney stones at a massive degree. And I'd always be in hospital, they'd always clear my kidneys out.

And I was told that's just you, was it? Anyway, I'll continue. Then the doctors decide it to check my kidneys out, to see the function of the kidneys, how they were functioning. And lo and behold, my kidney function was down to 12%, and that's usually called stage five, end of life.

07:43 And even now I get goosebumps when I say that, because that absolutely, I couldn't believe what I was hearing. And the doctors and the renal nurses said, right, you need to go on dialysis. You need to go on it every second day and you need to be on dialysis for 8 hours, every second day.

And I thought, oh my goodness, this eats into my life. And I thought, how am I going to cope? Because I had the dialysis machine at home, so everything had to be prepared at home and for myself, my husband assisted tremendously, please, I've got to say that.

08:22 And then I got onto the machine and then that was it. 8 hours I lost every second day. I was sent up here to the Austin and I was asked to see a doctor John Whitlam. Upon seeing him, he's fantastic.

Can I just say that? He's fantastic. He organized a DNA for me. He said something's not right, but we don't know what.

08:46 Maddie: To find out about why you were producing kidney stones.

08:48 Nada: Kidney stones, but why did my kidneys just stop working so quickly in such a short period of time, they don't just nosedive. There's got to be a reason why the kidneys are failing. And he decided on a DNA testing and to which I totally agreed. We had that done and the results came back and it was I had a rare genetic disorder.

It was actually a genetic liver disorder and it was a one in a million. So I went, wow. Anyway. And then he went away and that was left at that. And I thought, oh, I'm sure there's medication. I'm sure there'll be something they can do.

09:29 And I just assumed, I was assuming so much. Then one day we had a telehealth conference and he was on the other side and he just said, Nada, you need a liver and kidney transplant. I'll be honest with you, from that moment when I heard those words, I don't even remember what else he said.

Thank goodness my husband was sitting next to me because he took in all the information. And I just kept saying no. In my mind, "No, this can't be, I'm surely not..." I actually started thinking, would my life be better if I stayed on the dialysis machine?

10:08 But the problem is, how long can you survive on that? And constantly I kept coming back to, I think I need a transplant. There is no medication. I think I need a transplant. So it was a long three and a half years and waiting for that call.

When I was working, I always had my phone next to me because I was still working. And the only reason I was working was because it felt like respite. Because I was so busy at work. I literally forgot, maybe intentionally, but I was busy and I forgot about my problem and my health issue and all that.

And I didn't want to give up work. I thought, if I give up work and if I give up seeing my friends and what's going to happen...

10:52 Maddie: Did you often, I'm guessing from what you just said, but you often thought about what it would be like to get that call, to say that there was organs available?

11:00 Nada: I did, actually. But I kept thinking, and again, these are all my assumptions, I thought people need either a kidney or a liver and that they will be first in line, to have a dual transplant, I thought that's using up two organs for one person and I thought, I will be on this waiting list for a very, very long time.

That was just the way I thought, I didn't assume. And the problem was because I came across as being healthy, nobody at work knew that I was even sick because I looked the same, I behaved the same, I did all the same work I'd always been doing.

So there was no signs of me being ill or anyway, so I thought, maybe I'm not going to get a transplant because I might not be ill enough. I thought maybe they'll think, no, the lady's fine.

11:55 Maddie: Jess do you remember thinking about what it would be like to finally get that call?

11:59 Jess: It was slightly different for me, actually. I was incredibly unwell. I was really struggling to be alive. And so I didn't think about the phone call. My focus was actually very literal and I was thinking about the next moment. I didn't look forward because my focus really was surviving that day.

12:27 Nada: So you were in hospital when you were told that an organ was available?

12:31 Jess: Actually, I was isolating at home. So my transplant occurred when the lockdowns were occurring. And because of my compromised immune system, most of my time was actually spent in my bedroom at home on my own, isolating. Because at that time, and I'm not sure if circumstances have changed, but to contract COVID would mean being taken off the transplant list for a month.

13:05 Maddie: You just didn't have that time.

13:06 Jess: I didn't have a month and could not risk being exposed, so I was not exposed to anyone except for the community nurses that came to my home every day to treat me. I had no direct human contact apart from that. So I got the phone call at home.

13:27 Maddie: During that period of time, were your husband and your daughter staying out of the room that you were in as well? Were you isolating from them?

13:36 Jess: Yes. So. Both my husband and my daughter were living at the opposite end of the house. And I had a meal service and community nursing to take care of all of my medical needs. And my husband would completely dress in appropriate attire to help shower me, change the sheets, change my pajamas, et cetera at that time.

14:02 Maddie: Nada, do you remember getting the call?

14:05 Nada: It's etched in my brain.

14:08 Maddie: Take me through it. What happened?

14:09 Nada: I was on my machine. I was on the dialysis machine and the phone rang and I just assumed it was a friend of mine. And all of a sudden, I heard, Austin Hospital. The fear, as soon as I heard that word, I don't know why, the nurse hadn't said anything, but I thought, oh, my goodness, it's the call. And I literally just froze for a second because I thought, I can't move. I can't move.

And then they said, "We have a kidney and we have a liver for you, we'd like you up here at the Austin within about an hour or so." My husband was in the bedroom at the same time. Nothing came out of my mouth.

14:49 My husband took the phone and said, "Yes, she will be there, I promise." And a few more things were said, and then I had to get off the machine. So then I had to reverse the whole system so I'd get my blood back and get off and have a quick shower and get changed.

But I remember coming, driving up the highway, and I was looking out the window, and I really was thinking, where is my life heading now? What am I heading into? What's going to happen to me? Fear. It truly is.

15:21 It grips you, and then you question everything. And then you go, I'm sorry to say, but, "Will I survive this?" It's a legitimate thought. Will I survive? And I made my husband promise that when I woke up, he'd be there.

I had to see him. I just had to because I could only have one visitor. So my sons had to stay away because of COVID, but I just needed to see my husband's face to say, yes, you're okay. You've got through it. Because my operation went for over 12 hours, and just that in itself, I couldn't process, couldn't process it.

15:59 Maddie: You keep talking about the machine that you were on, which was at home dialysis. For people who are listening, who might have absolutely no idea what that is, do you want to tell us about what it was like and how long you were hooked up for to that machine and what it actually did for you?

16:10 Nada: My dialysis machine was actually cleaning my blood of oxalates because oxalates was the item that liver was producing, and it was killing my kidney. So Dr. John Whitlam said, we've got to clear your blood. We got to get rid of as much oxalates as possible, also, because if I was going to go in and get a transplant, I didn't want my whole body to be riddled with oxalate because Dr.
John Whitlam was afraid, well, that's not good.

So that was the other reason why I had to be on the dialysis machine. As I said earlier, every second day for 8 hours. The process is I was connected here, which went into my heart and down here, and that's where the blood came in and the blood went out, and you just literally sit there.

The only part that's really scary is when the machine either malfunctions, starts beeping, and you've got to figure out really quickly what's wrong with machine. It has to work. I'm attached to the machine or the fear, which I checked every day, if there was going to be a thunderstorm and if we lost power.

17:23 I only had a very small window of time to get off the machine before the machine decided, yep, no, can't do anymore. And then a certain amount of my blood could still be remaining in the system of the machine.

17:37 Maddie: So your life for those three years essentially was completely surrounded by this machine and time spent on it.

17:42 Nada: Absolutely. And every day I'd walk in and I'd go, okay, we're here again.

17:48 Maddie: Hello, old friend.

17:48 Nada: That's exactly how it was, at the beginning, I was resentful because I lost time and I lost the ability to have my life the way used to have it. But then, as my sons both said, "Mum, it's keeping you alive." And that's when everything changed. And I thought, I'm being so disrespectful to the machine, I should be grateful that I've got it. I should be happy that I'm actually on the machine and it's keeping me alive until the day of the call.

18:18 Maddie: So you're through the hard bit now, both of you, you've had your surgeries, they're done. You're on that road to recovery. Nada, I imagine that you would feel some sense of freedom of not having to be hooked up to a machine every second day for 8 hours.

18:28 Nada: Absolutely. That's one of my firsts that I was happy to say that I have my life back in the sense I don't have to regulate, no, I can't visit anybody today, I'm on the machine. Or I can only see you on the odd day, not the evens day, because I'm on the dialysis machine. So that's one of my firsts that I was grateful for, was I had my life back.

18:54 Maddie: Jess, what do you remember when you woke up in hospital after your transplant?

18:59 Jess: I remember the relief. And I was very, not emotional, I was actually very drained, like I'd been running a marathon for the longest time. And if you asked my intensive care nurses, I was ridiculously happy. And Nada. You'd appreciate this, you're not comfortable.

19:27 Nada: No.

19:27 Jess: Those first few days post-transplant surgery, monumentally painful. It's painful to exist, it's painful to breathe, it's painful to open your eyes, it's painful to swallow. At times it was almost overwhelmingly painful, but there was such a relief, such a peace within myself that felt like the race was over.

And not that by no means that I had won the race, but that I could stop running, if that makes sense.

20:10 Maddie: And you prior to transplant, like you said, you'd pretty much been isolating away from your husband and your daughter for two years. You had your transplant last year, COVID, as we know, started in 2020. Do you remember the first contact you had with them post-transplant where you weren't fearful?

20:23 Jess: I think they were more fearful than I was, to be honest. I think my daughter, she held me so tightly and she expressed to me that she was trying to make up for all of the cuddles that I had missed.

And it's one of the reasons why to people that might be listening, that might be waiting, that there are people in the world that understand how alone you feel and how being without touch and hugs and laughter and couch time and story time and bath time with your children, how all of those things chip away at your hope.

21:18 And I know for me, when I woke up, I couldn't be around my family quick enough. And again, because of COVID I could only see one person per day and I'm really grateful to all of the people within the hospital that perhaps did not quite do protocol entirely correctly to allow my daughter to sneak in with my husband, because it helped her recovery as much as it helped mine.

She could see that I was real and I was getting better and that the substantial part of the trauma was beginning to end. So immense relief and immense gratitude.

22:06 Maddie: Nada, what did you most look forward to besides not being connected to the machine anymore?

22:13 Nada: Well, okay, while I was on the machine, I also had to be on an oxalate diet, which pretty much meant that all the food that I love the most, potatoes, spinach, nuts, you name it, everything that I love eating was off the list. And I was stuck with broccoli, cauli, and a little bit of carrot.

22:36 Maddie: Delicious.

22:37 Nada: Delicious. I couldn't eat any meat and any fish, whereas now what I'm waiting for is to get the green light that my oxalate levels have lowered in my body and that I can be off this diet and I can eat anything I want.

I just cannot wait for that day. So that is something that I am holding on for dear life, because potatoes, potatoes, potatoes. That's all I'm going to say. I am going to eat myself silly.

23:08 Maddie: Do you know how long it would roughly take to get that approval?

23:10 Nada: December this year.

23:10 Maddie: Okay.

23:13 Nada: So I'm still stuck on the diet from now until December.

23:15 Maddie: Just in time for Christmas.

23:17 Nada: Absolutely. And all I'm waiting for is for John Whitlam to say, Nada...

23:20 Maddie: You're good to go.

23:22 Nada: I'm good to go, you can have anything you want to eat. And I'm going to give him a hug. I truly will, if he's with me.

23:30 Maddie: It's really common for people who are transplant recipients to feel something called survivor guilt. You almost mourn the loss of someone else even though you didn't know them at all. Is that something that either of you have struggled with?

23:44 Nada: The only way I can deal with survivor guilt, is that in my mind, anything that I'm doing that I'm enjoying or having a good time or feeling good, I think of my organ donor.

And my organ donor is with me all the time. So whenever there's wonderful moments that are happening, I truly, truly, I don't know how to express this enough. My organ donor is with me and I feel like we're taking these steps together and I actually feel my organ donor with me, if that even makes sense to you. I just feel the person. I just totally do.

24:22 Jess: It makes complete sense.

24:24 Nada: Really, thank you.

24:25 Jess: I understand exactly what you're saying, Nada, and I think probably people post-transplant will relate to exactly what you're saying.

24:33 Nada: Thank you.

24:34 Jess: Rather than people that might be preparing for transplant because it's a unique experience. On the day that you are taking steps towards the rest of your life, someone somewhere in the community has suffered the end of their life and a family and a community are in shock and are deeply emotional and traumatized at the loss of this significant person.

And I know that the term survivor guilt is what they use to describe some of the feelings that you may experience post-transplant. I found that I, not just myself, but my family, grieved the loss of that person.

25:31 Nada: Yes, totally. I agree with that absolutely.

25:36 Jess: Because life is precious. Your family have been praying for your own life. And to be able to step back and understand that somewhere there are a group of people that are so deeply affected, just as your family are due to one moment in time and that you're connected by that one moment in time.

And there's nothing that either side of that moment, that family and my family are forever connected. But not any sequence of actions brought my family to that place. And there's no sequence of actions that brought that family to the same moment in time.

26:26 And so I live with the understanding that the life of my donor ended suddenly and tragically. And I am extremely grateful that my life was able to continue because of their generosity and their desire to give the gift of life.

I don't carry a burden around with me. I don't feel obligated in any way. But I feel morally responsible for that spirit. I feel really responsible for honouring that decision of that person and not just their choice, how brave their family was at that moment in time to consent to organ donation, to be able to liaise with their hospital and the organ donation nurses and support staff, to affect the donation of their organs and tissue.

27:36 And that not just myself, but many, many people have a better quality of life today because of the gift of that one person. And I am very grateful.

27:47 Maddie: Do either of you feel a sense of responsibility now, knowing that you've had this second chance, that you almost have to make the most of it?

27:53 Nada: I certainly do. I actually feel I have responsibility for the donor, what the donor gave me. But I also will look after my kidney and my liver. I respected my kidney and my liver, and I will do everything my power to make sure that I and the kidney and the liver were all healthy and to take care of it, because I don't want to show any disrespect to the person that donated it for me. I wish I could thank that person or the family. I really do. I wish I could verbally say it.

28:29 Maddie: What about you, Jess?

28:30 Jess: I'm in a slightly different circumstance. I know who my donor is, and I have been able to have an exchange with the family. So I have shared not only my gratitude, but the gratitude of my family. And I don't think it's a responsibility. I just think that it is an approach to life. I'm trying to be the best version of myself.

I'm trying to be kind and see kindness in all situations, even when it's difficult. Even little things, like I try not to sweat the small stuff because time is precious. Life is precious. It's a bit rainy outside. Grab an umbrella, put on some gumboots, move on, get on with the program.

You have a choice to do better, to be bold, be brave. And my donor was a shining light. She was a giver. Children looked up to her. She had a community that had overwhelming love and respect for her. And I won't ever forget that. I won't ever take that for granted.

29:59 Maddie: Is it hard for you at times, knowing who she was?

30:03 Jess: It probably is, if I'm honest, because I know that she was young and that she was in the prime of her life. And I think it's always difficult to know that someone's life was cut short so that yours could continue. But it also provides me with a great insight. Like, we have a lot in common just by chance, and so I try and nurture those parts of myself.

I've become a volunteer. I'm really into baking. I'm an avid book reader. And these are all things that I have found out that were deeply meaningful for that person. And so as much as I'm trying to nourish my soul moving forward, I'm also trying to honor hers.

31:03 Maddie: If both of you could say something to your donor, what would it be?

31:08 Nada: I have no words of how to thank my donor. That's the first thing, I can't, thank you seems so minimal. And for that donor to have actually signed on the dotted line to become a donor and for me to have life, my donor will be in my mind and in my heart forever.

The two of us are now connected, and I would love that donor to know that they will never, ever be forgotten in my mind. Never. And with my sons and my husband, it was a gift. It was a gift of life that I can't thank the person enough.

31:52 But I also would love that we could advertise more about donation, becoming a donor. I want everybody to know how important it is and how it gives us life. And at work, a lot of my close friends at work have all signed up after what I've been through, and they've seen my journey, and they said, we're signing up.

And I think that's wonderful. Absolutely. It gives me goosebumps because I think that I've helped people come to that decision. I've never asked them, of course, but they, of their own accord, have decided that they want to be in this situation where if anything occurred, yes, my organs can go to somebody else.

So for that, I'm just grateful that someone else will one day be sitting in this chair, being able to tell their story because of the organs that they got.

32:52 Maddie: What about you, Jess? I know you've probably said a lot to the family of the donor, but if you could speak to her, what would you say?

33:01 Jess: I wouldn't just and I haven't just been speaking about the change it's made to my life. I'm forever grateful for her generosity, and I am so appreciative that her family was so understanding in such a difficult time for them.

But the gift of life is many things to a recipient. Obviously, it has saved me, saved my life, but it's also done many other things. My daughter has a mother. My husband still has his wife, and he hasn't become a single parent family.

My parents did not have to bury their child. My twin sister didn't lose her twin. There are so many people in my family that are walking through life with more appreciation, with more gratitude, with more wisdom, with more kindness and understanding about the plight of the people around them. And that's why the words "thank you" feel...

34:25 Maddie: Inadequate in a sense...

34:27 Jess: Well, just not quite enough. I'll be saying thank you, every day, for the rest of my life. And I will be an active advocate for organ donation for the rest of my life. My family are already ambassadors in their own lives. They speak about transplantation. They speak about breaking down some of the misinformation that's out there about being eligible to donate.

Perhaps I'm too old, perhaps I'm too young, perhaps I'm too overweight, I'm not fit enough. I've lived overseas... Some of the misunderstandings that exist about eligibility to donate, and it's not lost on me that you are more likely in your lifetime, statistically, to require a transplant than you are as an organ donor to ever donate a single thing.

35:32 Maddie: We're going to end on a happy note. You're both post-transplant now, and you're both healthy. Is life what you expected it to be like when you were waiting?

35:42 Nada: I'm just grateful. I don't know what else to say. I'm just so grateful. It feels like a new beginning for me. Every day is like a new day for me. That's how I feel. That's truly how I feel every day. It's new. I'm here.

36:00 Jess: I understand where Nada's coming from, again, I look at life differently. Every day I try to act with purpose. I am very mindful with my decision-making and the impacts that I have on the people around me. And I said to my husband quite quickly after the transplant, I almost feel 18 again in many ways, and that's 20-something years ago.

And I feel that way because I feel like I'm on a constant journey of discovery, because my perspective has changed so much. Our family is closer, I thought illness brought together a family tightly and that you wrap around one another, but wow...

36:55 Nada: I agree.

36:56 Jess: You know, when you've got the opportunity to have life again and to be well again and to be well on a regular basis again, I feel like I could take on the world and that I have the responsibility, but I have the love and the energy and the drive to make a difference and be at my best.

37:20 Maddie: I think that's all we have time for today. Thank you both so much for joining me. Oh my gosh, that was such a hard episode to get through and I really tried my best to not cry. But it did struck a chord with me and I'm sure it struck a chord with everyone who's listening as well. So thank you so much for joining me today and sharing your stories.

37:39 Nada: Thank you.

37:39 Jess: Thank you.

37:40 Maddie: Thank you so much. 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.