Life After Death: The Impact of Organ Donation on Families
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About this episode
What if someone else's tragedy could become your lifeline?
In this powerful episode of Don't Be Caught Dead, we dive deep into the life-altering journey of Jessica Chappell, a passionate advocate for organ and tissue donation. Jessica's story is one of resilience, hope, and the profound impact of a second chance at life. After being diagnosed with autoimmune hepatitis, she faced the unimaginable reality of needing a liver transplant. Join us as Jessica shares her raw and emotional experiences, from the moment she received the life-changing call to the challenges of navigating chronic illness and the waiting game for a donor.
Jessica's journey is not just about her survival; it's about the lives intertwined with hers—the family who grieved a loss so she could live, and the community that rallied around her during her darkest days. She reflects on the importance of open conversations about death and dying, the emotional toll of chronic illness, and the incredible support system that helped her through it all. This episode is a powerful reminder of the gift of life and the responsibility we carry to honour those who have given us a second chance.
Remember; You may not be ready to die, but at least you can be prepared.
Take care,
Catherine
Show notes
Guest Bio
Advocate for Organ and Tissue Donation
Jessica is a passionate advocate for organ and tissue donation whose life was saved by a liver transplant in 2022 after a diagnosis of autoimmune hepatitis.
For years, Jessica lived with the uncertainty, exhaustion, and invisible toll of chronic illness—until the call came that changed everything.
Her journey from patient to powerful voice in the donor community has inspired thousands, with her story featured in Mamamia and Humans in Melbourne.
Jessica now shares her experience to raise awareness, break down misconceptions, and honour the gift of life she received from a complete stranger.
With empathy, honesty, and strength, Jessica speaks to the emotional realities of waiting, surviving, and living with purpose after transplant. Her message is simple but urgent: organ donation transforms lives—and every conversation counts.
Summary
Key points from our discussion:
- Jessica's initial health struggles and the diagnosis of autoimmune hepatitis.
- The emotional realities of waiting for a transplant and the impact on her family.
- The moment she received the call about her donor and the whirlwind that followed.
- The importance of organ donation and how it transforms lives.
- Jessica's commitment to advocacy and raising awareness about the donor community.
Transcript
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Someone's life ended so
my life could continue.
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And whilst my family were sitting in a
hospital room hoping for the best someone
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else and their immediate family, were
sitting in a hospital room grieving
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an unimaginable and unexpected loss.
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Welcome to Don't Be Caught Dead, a
podcast encouragi ... Read More
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00:00:02,130 --> 00:00:05,610
Someone's life ended so
my life could continue.
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00:00:05,850 --> 00:00:12,780
And whilst my family were sitting in a
hospital room hoping for the best someone
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else and their immediate family, were
sitting in a hospital room grieving
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an unimaginable and unexpected loss.
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Welcome to Don't Be Caught Dead, a
podcast encouraging open conversations
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about dying and the death of a loved one.
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I'm your host, Catherine Ashton, founder
of Critical Info, and I'm helping to
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bring your stories of death back to
life because while you may not be ready
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to die, at least you can be prepared.
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Don't be caught dead.
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Acknowledges the lands of the
Kulin Nations and recognizes their
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connection to land, sea, and community.
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We pay our respects to their elders
past, present, and emerging, and
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extend that respect to all Aboriginal
and Torres Strait Islander and First
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Nation peoples around the globe.
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Today I'm speaking with Jessica Chappell.
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Jessica is a passionate advocate for
organ and tissue donation, whose life
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was saved by a liver transplant in 2022
after a diagnosis of autoimmune hepatitis.
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For years, Jessica lived with the
uncertainty, exhaustion, and the
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invisible toll of chronic illness until
the call came that changed everything.
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Her journey from patient to a powerful
voice in the donor community has inspired
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thousands with her story featured
in Mama Mia and Humans in Melbourne.
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Jessica now shares her experience to raise
awareness, break down misconceptions,
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and honor the gift of life she
received from a complete stranger.
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With empathy, honesty, and strength.
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Jessica speaks to the emotional
realities of waiting, surviving, and
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living with purpose after transplant.
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Her message is simple but urgent.
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Organ donation transforms lives
and every conversation counts.
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Thank you so much for being
with us today, Jessica.
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Look, thank you for having me, Catherine.
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So can you take us back to the beginning
when you first realized something
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wasn't quite right with your health?
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Well, the really interesting thing
is Catherine, I didn't really notice
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that anything was seriously wrong.
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It was whilst I was pregnant with my
first daughter, meadow, and it wasn't
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until actually I went into labor and
went to hospital and delivered Meadow.
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That unbeknownst to me, my
illness had actually started.
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Shortly after delivery, and Meadow was
six weeks prem and we guarded her at
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home without any visitors and didn't
take her out into the real world.
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So I was plotting along at home
like all new mothers breastfeeding
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and up all hours and quite tired
and fatigued and losing weight.
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But I put that all down
to being a new mom.
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I thought this was part and parcel
of what motherhood entailed.
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And so I didn't actually notice myself
that anything was terribly wrong.
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And it wasn't until Meadow was 12 weeks
old and we had arranged her baptism, and
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whilst we were standing in the receiving
line to greet all of our family, my
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Aunt Linda, who is a nurse, she took
one look at me up close and she said.
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Jess, are you feeling okay?
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And I said, yeah, yeah, you know, happy
that you're here and a little bit tired.
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And she said, are you
sure you are feeling okay?
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You look a bit yellow.
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And I said, no, I'm okay.
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And she said, give me a look at your eyes.
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And unbeknownst to me, the whites
of my eyes were quite yellow, a
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very close to turmeric, yellow.
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And she had a look at my
gums, which were quite gray.
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And she said, look, I actually think
something is very seriously wrong.
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I think you need to leave
and go straight to emergency.
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So that's exactly what we did.
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And within 24 hours, I had
been diagnosed with a chronic
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illness that was life-threatening
called autoimmune hepatitis.
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So what does that diagnosis look like?
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What did you find out at that point?
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At that moment, it was a bit of
a blur, to be perfectly honest.
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If you can picture a, a new mom.
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And my husband Chris, and a newborn
baby in the emergency department
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at Geelong Hospital, listening to
a team of gastroenterologists and
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the emergency department, senior
chiefs, all looking very serious.
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And I was really focused on meadow.
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I was worried about breastfeeding, and
I was worried about, she was crying.
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And so I actually didn't
really absorb too much of it.
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And what I came to learn pretty
quickly is that life as we knew it was
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fundamentally going to change forever.
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We learned within 48 hours that
the condition was incurable,
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that the condition would one day.
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Essentially either take my life or require
a transplant and that my only prognosis
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would be transplantation or death.
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So it was very confronting news
for a new mom and probably even
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more confronting for my husband.
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And what happened then?
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How do you then go from that
moment of, you know, you had your
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daughter's Meadows christening.
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Yeah.
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And now 48 hours, this is where you were
at and this is what you're being told.
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What sort of supports were provided
and and what was the process that you
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found yourself in from there on in, in
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the beginning, it's fair to
say there's a lot of denial.
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Oh, it can't be as bad as what they say.
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And of course, I'm no medical scientist.
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And so a lot of the information sort of
sails over your head a little bit and.
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I really tried to understand what
it would mean in the immediate term.
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So my immediate concern
was what is treatment?
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What is going to happen right now?
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And so over the really short term,
because I'd gone untreated for 12
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weeks from the day of delivery.
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So autoimmune hepatitis can be
triggered by the hormonal surge
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caused by delivery hormones in women.
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Autoimmune hepatitis is a condition
that can be experienced by both men
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and women, but it tends to present
in women of childbearing age.
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Yeah, right.
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And
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so learning as I went, both for
me and my family, so two things
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crossed my mind immediately.
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One is that my identical twin was
pregnant at the time, and yet two deliver.
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Wow.
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Her first child.
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And so in that emergency treatment
phase, the treating doctors very quickly
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picked up that I was an identical twin.
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They very quickly contacted my
sister and her doctor, and she was
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screened immediately as someone
who was eight months pregnant.
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And so fundamentally, they have
saved her life and she went into
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preventative treatment before
delivery and close monitoring
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after the delivery of her daughter.
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So the immediate phase
for me was critical.
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I was then admitted to Geelong Hospital,
but like all new moms, I didn't
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wanna be admitted and did not wanna
be separated from my newborn baby.
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And incredibly, because we
had private health insurance.
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Geelong Hospital and Geelong Private
were able to structure a way for
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me to be admitted with Meadow.
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And our journey began, and Meadow
spent the next six weeks of her
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life in hospital with me, and they
structured my immediate treatment
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to stop what is called the flare.
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So essentially the scarring of
the liver that eventually leads
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to cirrhosis and liver failure.
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The treatment is enormous amounts
of medical grade Prednisolone.
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It arrests the inflammation, it
stops it in its tracks fundamentally.
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And we structured our treatment in
a way that meant I would have the
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treatment, the infusion in the morning.
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I would then.
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Breast pump and express milk to shed
the steroid load and then I would
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repu so I could then breastfeed.
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Meadow and I became a bit of a milk
factory for a while, all whilst
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trying to stabilize the condition.
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It's so amazing that the medical team
was able to work with you to make
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sure that you could still go through
those processes that you wanted
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to honor as a mom and a new mom.
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That's amazing.
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It was an incredible tribute to
the Geelong medical community.
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I had the chronic illness autoimmune team.
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I had the gastroenterology team,
both public and private because
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my case was such a rare case.
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And then I had the obstetric team
and the maternal child health team
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coming in to check on Meadow to test
my breast milk to make sure that I was
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allowing enough time between treatment
and feeding my mother and my husband.
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I always had an adult in my room, so I was
never directly lifting or bathing my baby.
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My mother and my husband, Chris, took
primary parental responsibility and I
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essentially was there for skin contact and
to continue feeding her during that time.
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And what do you think, looking back
on it now, that process allowed you
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to do, you know, bonding with Meadow?
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I think it did a couple of things.
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It gave me a 100% laser focus on
Meadow and actually not myself.
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And so I didn't process the enormity and
the seriousness of my condition until
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I was released with Meadow to go home.
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So I didn't really consider the long-term
prognosis for myself at that time.
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I did not know that my plans to have any
further children had been extinguished.
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I did not know my.
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Immunity was permanently compromised.
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I did not know that I would need to be on
a medical management plan and systematic
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blood tests and gastroscopies and medical.
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I had no idea what was coming.
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I had absolutely no idea.
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So whilst I had a brief moment of sheer
relief that I could stay with my baby
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and I could give her those precious early
weeks of, of nurturing and breast milk
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and give her the immunity that she so
desperately needed as a premature bub, but
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really I ended up delaying dealing with
my own reality, which is quite often the
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thing for patients that have a chronic I.
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Illness diagnosis.
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There is a lot of perhaps denial or not
quite accepting the enormity of what
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a chronic illness diagnosis carries.
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Not just for you, but for
your immediate family as well.
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And tell me what did that look like
for you when you had left the hospital
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after those six weeks and you were home?
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When did the reality hit of
what you were actually facing?
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I think I. We sort of fumbled
our way through that first year.
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There's a lot of learning that happens
with a chronic illness, so learning
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your treatment plan and getting to
know your primary practitioners and
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getting used to who's who in the zoo.
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And so the first 12 months
went by in a real blur.
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I got to know my treating
team really well.
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I got to know the team at Austin
Health, the liver transplant unit
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really well, and it became a new normal.
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So getting blood tests weekly, seeing my
gastro once a month, and I was stabilized
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quite well, which meant they stopped that.
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Critical flare.
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And by taking a series of
medications, I was able to stabilize
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myself and start parenting again
and actually returned to work.
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So in those early years, I was
able, with the help of an incredible
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team of doctors and allied health
specialists, was able to resume my
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normal life for a number of years.
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And at what point did you realize,
okay, maybe this is not going to be
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the way things are for the time being?
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What point did you kind of realize that
work was getting a little harder and
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Yeah.
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So if we fast forward from
2010 to about the Christmas of
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2018, I had been increasingly.
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Becoming unwell.
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00:14:07,785 --> 00:14:09,915
I was incredibly fatigued.
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00:14:09,944 --> 00:14:18,944
I was finding it more and more difficult
to recall information, and I was suffering
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from what many in the medical field
would understand is a toxic medical load.
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So by 2018, I was taking
11 different medications to
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stay well enough to function.
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Wow.
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And one day at home in
late 2018, I collapsed.
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I collapsed quite hard on the floor in my
bathroom, I smashed my face onto the tiles
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and I started hemorrhaging profusely.
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And meadow found me as an
80-year-old and screamed.
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And rang triple zero and the
ambulance came, and that's when
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we knew that it was pretty bad.
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So I was treated in Geelong and
I was transferred by ambulance
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00:15:16,395 --> 00:15:22,845
to the Austin, and I remained at
the Austin for a number of weeks.
212
00:15:23,595 --> 00:15:30,225
I was very unwell and so unwell in fact
that the conversation was not had with me.
213
00:15:30,465 --> 00:15:35,505
The conversation was held with my husband
and he remembers it quite distinctly.
214
00:15:35,925 --> 00:15:38,775
That head of the transplant
unit sat down with Chris and
215
00:15:38,775 --> 00:15:41,685
said, your wife is a young mom.
216
00:15:42,135 --> 00:15:49,485
This is not a quality of life that we
would anticipate for any young family.
217
00:15:50,055 --> 00:15:52,965
It's time to waitlist
her for a transplant.
218
00:15:53,385 --> 00:15:58,245
Her prognosis is critical, and once
she recovers from this incident.
219
00:15:59,400 --> 00:16:01,560
It's time to get ready for a transplant.
220
00:16:02,699 --> 00:16:06,390
And how did you feel that the
conversation was had with your
221
00:16:06,390 --> 00:16:07,800
husband and not yourself directly?
222
00:16:08,339 --> 00:16:09,990
I was critically unwell.
223
00:16:09,995 --> 00:16:10,135
Okay.
224
00:16:10,140 --> 00:16:13,199
I was in and out of consciousness.
225
00:16:13,410 --> 00:16:14,849
I was in a lot of pain.
226
00:16:15,120 --> 00:16:20,040
And at that stage I was suffering
from a medical condition
227
00:16:20,040 --> 00:16:22,560
called hepatic encephalopathy.
228
00:16:23,219 --> 00:16:26,819
And I lost my motor skills.
229
00:16:27,540 --> 00:16:31,229
I couldn't speak, I couldn't
be my own health advocate.
230
00:16:32,069 --> 00:16:35,160
I couldn't speak a coherent sentence.
231
00:16:35,430 --> 00:16:41,370
My husband had no idea what I was saying,
and I didn't recognize my own family.
232
00:16:41,370 --> 00:16:44,579
I was so incredibly unwell.
233
00:16:44,579 --> 00:16:51,630
I was in intensive care right at
the beginning of COVID at that time.
234
00:16:51,900 --> 00:16:54,990
And we knew it was pretty serious.
235
00:16:54,990 --> 00:16:58,530
And it wasn't until I'd
regained my faculties and.
236
00:16:58,590 --> 00:17:05,460
I knew where I was and understand how sick
I was that both the doctor and my husband
237
00:17:05,460 --> 00:17:08,190
sat down with me and said, yep, it's time.
238
00:17:09,780 --> 00:17:14,790
And had you had previous conversations
about your wishes prior to that time?
239
00:17:14,985 --> 00:17:15,105
I.
240
00:17:15,929 --> 00:17:22,200
Yeah, so it's one of the important things
that happens once you start being a, as
241
00:17:22,200 --> 00:17:27,060
a regional patient living in Geelong,
you have sort of a treatment team.
242
00:17:27,060 --> 00:17:31,649
So I was regularly having testing
and appointments with my team in
243
00:17:31,649 --> 00:17:36,780
Geelong and then periodically going
up to the Austin liver transplant
244
00:17:36,780 --> 00:17:42,210
unit for regular oversight and, and
management and tweaking of my medical
245
00:17:42,210 --> 00:17:47,790
plan or with the view to planning
when my transplant would eventually
246
00:17:47,909 --> 00:17:51,120
be, and choosing the real there.
247
00:17:51,149 --> 00:17:55,080
There's a really small, narrow
window with chronic illness.
248
00:17:55,169 --> 00:18:01,169
You have to be sick enough to be eligible
for the transplant list, but not too sick.
249
00:18:01,379 --> 00:18:03,270
That makes you ineligible.
250
00:18:03,535 --> 00:18:09,745
For a transplant, so there is a medical
sweet spot and I had unfortunately
251
00:18:09,805 --> 00:18:17,905
with collapsing at home, had fallen
well over the line for being eligible
252
00:18:17,965 --> 00:18:22,735
almost to the point where I was so
sick I was uneligible for a transplant.
253
00:18:22,765 --> 00:18:29,935
So I remained in hospital for a long,
long time, months, months, stabilizing
254
00:18:30,025 --> 00:18:37,615
at the Austin until I was well enough
to go home, recoup my strength, and then
255
00:18:38,485 --> 00:18:43,885
return to the Austin for what they call
and all transplant recipients will know.
256
00:18:43,885 --> 00:18:48,745
It's called workup week, where
you run a week long battery of
257
00:18:48,745 --> 00:18:54,505
tests to ensure that your body is
well enough to receive an organ.
258
00:18:55,255 --> 00:18:58,225
You are then placed on the
waiting list and you can wait
259
00:18:58,915 --> 00:19:02,665
anywhere from a day to 18 months.
260
00:19:03,390 --> 00:19:03,630
I did,
261
00:19:04,230 --> 00:19:09,270
I so wanna talk to that point
because that is a very long waiting
262
00:19:09,270 --> 00:19:12,540
period and and such a uncertainty.
263
00:19:12,570 --> 00:19:16,290
If you sort of like if it could be
anything from one day to 18 months,
264
00:19:16,590 --> 00:19:18,360
that's a very long period of time.
265
00:19:18,420 --> 00:19:22,560
But just before we go there, and Jessica,
you don't have to answer this if you
266
00:19:22,560 --> 00:19:29,940
don't feel comfortable, but something
that I do wonder is that sort of tipping
267
00:19:29,940 --> 00:19:34,380
point that you're talking about, it
must be a very challenging thing to
268
00:19:34,440 --> 00:19:40,380
work out at what point that is given the
fact that I. You know, from my limited
269
00:19:40,380 --> 00:19:45,150
knowledge and my understanding with me
developing, me, managing my chronic pain,
270
00:19:45,840 --> 00:19:50,100
anyone who deals with a chronic illness,
my understanding is, is that you are
271
00:19:50,100 --> 00:19:53,610
all your tolerance and your resilience
or maybe your tolerance actually
272
00:19:53,610 --> 00:19:56,370
increases sometimes as time goes on.
273
00:19:56,370 --> 00:20:01,410
So it really has to escalate to another
level before you really have to raise
274
00:20:01,410 --> 00:20:03,810
to another level if that's making sense.
275
00:20:04,200 --> 00:20:09,840
And so, by the nature of having a chronic
illness, it must be very difficult to work
276
00:20:09,840 --> 00:20:12,630
out at what point that tipping point is.
277
00:20:13,290 --> 00:20:13,800
Yes.
278
00:20:13,800 --> 00:20:19,470
And looking back on it now as a
well person that is not experiencing
279
00:20:19,530 --> 00:20:26,195
any symptoms whatsoever, there
is a real clarity around when
280
00:20:26,460 --> 00:20:28,440
chronic becomes critical.
281
00:20:28,500 --> 00:20:33,030
And it's something that I talk
about quite frequently when.
282
00:20:34,215 --> 00:20:38,865
I was first diagnosed and I had
a management plan and a series of
283
00:20:38,865 --> 00:20:46,095
appointments, and I was in control
of dosing myself and driving myself
284
00:20:46,095 --> 00:20:50,955
to appointments and taking my
own notes following appointments.
285
00:20:51,585 --> 00:20:56,205
I was able to do that until
Meadow was about eight years old.
286
00:20:56,205 --> 00:20:59,595
And then it became more
difficult to remember what was
287
00:20:59,595 --> 00:21:01,365
being said in appointments.
288
00:21:01,545 --> 00:21:05,955
It became more difficult to remember
if I'd taken my medication or if
289
00:21:05,955 --> 00:21:09,585
I had an appointment that day,
or maybe it was the next week.
290
00:21:09,615 --> 00:21:15,675
And when I found myself finding it
difficult to do the right thing or
291
00:21:15,675 --> 00:21:22,275
remember the right thing, my mother,
um, joy, who was retired, and I said
292
00:21:22,275 --> 00:21:24,315
to my husband, I said, I'm scared.
293
00:21:24,315 --> 00:21:25,575
I'm getting scared.
294
00:21:26,265 --> 00:21:29,685
I don't think I can be at home alone.
295
00:21:32,610 --> 00:21:39,899
Home alone with Meadow, I'm worried
that if something's happens to me, and
296
00:21:39,899 --> 00:21:47,399
so there is a real difference between
chronic illness and critical illness,
297
00:21:47,580 --> 00:21:55,800
and it's quite often that tipping point
is when you no longer feel like you are
298
00:21:56,610 --> 00:22:01,230
comfortably in control of your choices.
299
00:22:01,350 --> 00:22:05,940
And so I'm very grateful to
my husband and my mother.
300
00:22:05,940 --> 00:22:10,980
My mother dropped everything in the heart
of COVID when there was a ring around
301
00:22:10,980 --> 00:22:15,149
Melbourne and we had to write and get.
302
00:22:15,975 --> 00:22:21,345
Special permission from the premier of
Victoria for my mother to break the ring
303
00:22:21,795 --> 00:22:28,485
to drive out of Melbourne and cross,
you know, the line of police and defense
304
00:22:28,485 --> 00:22:33,375
force personnel that were guarding the
highway between Melbourne and Geelong.
305
00:22:34,905 --> 00:22:38,685
And every Sunday night she
would come down to Geelong.
306
00:22:38,745 --> 00:22:44,115
And so my husband could still
work, she would be with me all day.
307
00:22:44,205 --> 00:22:46,875
And at that time, meadow wasn't at school.
308
00:22:46,875 --> 00:22:50,745
All the children were at home
homeschooling at their kitchen tables.
309
00:22:50,865 --> 00:22:50,985
Mm-hmm.
310
00:22:51,225 --> 00:22:57,285
And my mother would homeschool
Meadow, wake me up, give insulin
311
00:22:57,285 --> 00:23:01,995
injections, have extended to daily
hospital in the home appointments with
312
00:23:01,995 --> 00:23:04,485
nursing staff and pathology staff.
313
00:23:05,205 --> 00:23:08,355
That's when you know, that's when
you know that you are no longer
314
00:23:08,355 --> 00:23:11,115
in the driving seat of your life.
315
00:23:11,685 --> 00:23:16,140
And that's when I. As my
mom and my husband both tell
316
00:23:16,140 --> 00:23:18,000
me I'm not a great patient.
317
00:23:18,090 --> 00:23:22,530
Not a great patient at all when I'm
not in control, but that's when I
318
00:23:22,530 --> 00:23:27,990
knew that's, that's when I knew that
I was fearful for what might happen.
319
00:23:29,130 --> 00:23:32,305
And during this time, what
was your conversations with
320
00:23:32,305 --> 00:23:34,860
Meadow around your illness?
321
00:23:36,135 --> 00:23:39,615
We tried to protect Meadow
for a long, long time.
322
00:23:39,705 --> 00:23:43,725
She knew that I was unwell and she knew
that I took tablets and she knew that
323
00:23:43,725 --> 00:23:49,515
I had really friendly doctors that she
really loved and that I had an illness.
324
00:23:49,845 --> 00:23:52,365
And we were tried to be
very sensitive to Meadow.
325
00:23:52,365 --> 00:23:55,845
So at that time she was seven years old.
326
00:23:55,845 --> 00:24:02,085
She, you know, was thriving at school and
so we just started to approach my illness
327
00:24:02,085 --> 00:24:04,725
with illnesses that she was familiar with.
328
00:24:04,725 --> 00:24:10,095
So she was very familiar with diabetes
and she was very familiar with nut
329
00:24:10,095 --> 00:24:12,345
allergies being in the school system.
330
00:24:12,345 --> 00:24:18,525
And so we compared my illness to those
illnesses and said, you know, mommy
331
00:24:18,525 --> 00:24:22,605
has to be very careful with what she
eats, and she has to be very careful
332
00:24:22,605 --> 00:24:24,615
about when she takes her medicine.
333
00:24:24,975 --> 00:24:26,685
And like diabetes.
334
00:24:27,165 --> 00:24:31,485
She tests her blood and she regularly
sees the doctor to make sure that
335
00:24:31,485 --> 00:24:33,585
she's well enough to take care of you.
336
00:24:33,675 --> 00:24:34,395
And so.
337
00:24:34,889 --> 00:24:36,330
Meadow knew no different.
338
00:24:36,689 --> 00:24:39,840
Meadow grew up joining
me at the appointments.
339
00:24:40,350 --> 00:24:42,899
There was no fear in
attending a doctor's surgery.
340
00:24:42,899 --> 00:24:45,659
There was no fear about
visiting mum in hospital.
341
00:24:45,659 --> 00:24:48,659
'cause that's where mommy
goes sometimes to have a rest.
342
00:24:48,990 --> 00:24:52,199
And it was a really
normal part of our lives.
343
00:24:52,709 --> 00:24:54,990
And I talked to Meadow a lot about it.
344
00:24:54,990 --> 00:25:00,179
Now Meadow's 15 years old and obviously
she can speak very articulately
345
00:25:00,750 --> 00:25:04,139
about how she reflects on that time.
346
00:25:04,800 --> 00:25:10,590
And it wasn't until I had that
collapse at home and the ambulance
347
00:25:10,590 --> 00:25:15,030
came that she thought that I might die.
348
00:25:15,389 --> 00:25:16,560
That's the first.
349
00:25:17,070 --> 00:25:17,790
Time.
350
00:25:18,000 --> 00:25:22,919
There was a real serious conversation,
and it initially was not with me, it
351
00:25:22,919 --> 00:25:30,060
was with my husband and my parents and
Chris's parents, her Nan and Pop, and her
352
00:25:30,090 --> 00:25:36,614
grandma and grandpa, who all sat down and
said, you know, mommy is very unwell, but
353
00:25:36,695 --> 00:25:41,429
she's in the right place with the right
people and everyone is doing everything
354
00:25:41,429 --> 00:25:43,649
that they can to look after mom.
355
00:25:44,370 --> 00:25:47,280
And that is not for you to worry about.
356
00:25:47,580 --> 00:25:50,100
It is for the doctors to worry about.
357
00:25:50,520 --> 00:25:55,020
And if there are any ever
questions that you want to ask.
358
00:25:55,020 --> 00:25:59,219
And our medical team were terrific
and the liver transplant team
359
00:25:59,429 --> 00:26:05,729
were terrific and our nurses and
our doctors, Stena and Damien.
360
00:26:06,120 --> 00:26:09,870
Didn't just speak to me
at my regular checkups.
361
00:26:09,990 --> 00:26:14,280
They would speak to Meadow as an
8-year-old and say, now Meadow, is there
362
00:26:14,280 --> 00:26:16,050
anything that you would like to ask?
363
00:26:16,649 --> 00:26:18,600
Is there anything that
you would like to know?
364
00:26:18,689 --> 00:26:21,600
And I still remember some of
the questions she would ask.
365
00:26:21,600 --> 00:26:25,889
She would say, is there anything that I
can do to help mom when she's at home?
366
00:26:26,879 --> 00:26:31,830
Or is there anything that I can bring
into hospital that you can give her?
367
00:26:32,280 --> 00:26:36,899
'cause during COVID, there was no visitors
in hospital, so is there anything that
368
00:26:36,899 --> 00:26:39,810
I can bring from home to cheer mom up?
369
00:26:40,020 --> 00:26:42,245
And so I'm incredibly grateful.
370
00:26:42,554 --> 00:26:44,965
They're amazing question,
incredibly questions.
371
00:26:45,450 --> 00:26:45,990
Yeah.
372
00:26:46,350 --> 00:26:46,649
Yeah.
373
00:26:46,649 --> 00:26:48,030
I'm very lucky.
374
00:26:48,090 --> 00:26:49,139
I've got a great kid.
375
00:26:49,800 --> 00:26:55,110
And as an articulate 15-year-old,
she's now, when she looks back on
376
00:26:55,110 --> 00:26:56,550
that time, what does she remember?
377
00:26:57,179 --> 00:26:58,169
Do you talk about that?
378
00:26:58,740 --> 00:27:03,060
Yeah, we, it's makes me incredibly
emotional thinking about it.
379
00:27:03,570 --> 00:27:05,460
We don't have to go there
if you're not comfortable.
380
00:27:05,820 --> 00:27:06,780
No, absolutely.
381
00:27:06,780 --> 00:27:07,440
It's important.
382
00:27:07,440 --> 00:27:10,230
It's part, it's part of it.
383
00:27:11,220 --> 00:27:18,210
I often ask her what part of the
experience she still carries because
384
00:27:18,210 --> 00:27:24,780
like all serious health conditions,
it's not just the patient that feels it.
385
00:27:25,140 --> 00:27:33,270
I definitely know that both my husband, my
mother, and my daughter carry the trauma
386
00:27:33,750 --> 00:27:38,280
of particularly the transplant experience.
387
00:27:39,450 --> 00:27:46,650
And Meadow still says that her biggest
fear was that daddy was going to be alone.
388
00:27:46,770 --> 00:27:47,730
She still,
389
00:27:50,370 --> 00:27:53,610
she still says, I just real
was really worried about dad.
390
00:27:53,640 --> 00:27:57,240
I didn't think that dad could live
with a broken heart, so she didn't
391
00:27:57,240 --> 00:27:59,100
actually think about herself.
392
00:28:00,254 --> 00:28:04,725
Children are incredibly,
incredibly resilient things.
393
00:28:05,175 --> 00:28:10,155
And she said, I was going to miss
you, but I thought, how am I gonna
394
00:28:10,155 --> 00:28:12,014
look after dad with a broken heart?
395
00:28:12,945 --> 00:28:19,695
And she still says that she, she still,
I don't know where that comes from.
396
00:28:19,965 --> 00:28:21,435
She still says the worst part.
397
00:28:21,465 --> 00:28:23,175
She said, I would've been
sad if you died, mom.
398
00:28:23,205 --> 00:28:29,475
I would've been sad, but I
was really worried about dad.
399
00:28:29,475 --> 00:28:34,125
And you know, I was gonna make sure that
I was gonna take really good care of him.
400
00:28:35,445 --> 00:28:37,514
And so it still breaks my heart.
401
00:28:39,135 --> 00:28:45,465
It sounds like you've had a
unbelievable community of support.
402
00:28:46,215 --> 00:28:53,295
Throughout this very tumultuous and, and
challenging time to not only support you,
403
00:28:53,295 --> 00:28:59,325
but obviously your meadow and, and your
husband, uh, you've mentioned your mum.
404
00:29:00,435 --> 00:29:05,055
How important was that to actually make
sure you had a support network around you?
405
00:29:06,405 --> 00:29:07,725
Incredibly important.
406
00:29:07,905 --> 00:29:13,965
I, I often, when I speak about
my transplant journey, I often
407
00:29:13,965 --> 00:29:15,345
reflect that it's not mine.
408
00:29:15,495 --> 00:29:17,865
It's not solely my
journey, it's our journey.
409
00:29:17,865 --> 00:29:19,755
It's our family's experience.
410
00:29:19,845 --> 00:29:27,285
And often now that I am post-transplant,
and I actually think about it a lot in
411
00:29:27,285 --> 00:29:34,005
terms of all the people waiting that don't
have the support that I had, waiting's an
412
00:29:34,005 --> 00:29:38,745
incredibly challenging time as a human.
413
00:29:39,015 --> 00:29:43,750
You draw on the depths of hope and.
414
00:29:44,685 --> 00:29:50,145
Strength and resilience that you have, and
there are so many days when you run out.
415
00:29:50,294 --> 00:29:56,175
There are so many days, and I always
had someone there to fill me up.
416
00:29:56,475 --> 00:29:59,655
I always had my husband.
417
00:30:00,345 --> 00:30:04,995
My husband never doubted in front
of me, never doubted that I was
418
00:30:04,995 --> 00:30:09,315
going to receive a transplant,
and every day that I wandered down
419
00:30:09,315 --> 00:30:14,385
that rabbit hole of thinking, this
was it, I'm not gonna make it.
420
00:30:14,445 --> 00:30:18,675
I'm too sick, and it's just
not on the cards for me.
421
00:30:19,365 --> 00:30:25,695
He would almost flippantly say,
Jess, she'll be right, mate.
422
00:30:26,205 --> 00:30:36,195
We've got this and to know what I know
now, and that he was terrified that how
423
00:30:36,195 --> 00:30:43,004
I was feeling might actually happen,
but he refused to let me show it that.
424
00:30:43,785 --> 00:30:52,125
Stubborn, lovely old fashioned man
that I've married, refused to give up
425
00:30:52,155 --> 00:30:55,515
hope for me when I had given up hope.
426
00:30:55,815 --> 00:31:00,165
And so my mother and my twin
sister, Catherine, and my dad,
427
00:31:00,315 --> 00:31:04,035
became an ecosystem of hope.
428
00:31:05,145 --> 00:31:09,675
My dad would turn up to my doorstep
when I refused to see people and I
429
00:31:09,675 --> 00:31:13,815
was being belligerent and difficult
and Chris couldn't handle it.
430
00:31:13,815 --> 00:31:17,355
And my dad would walk into the house and
say, come on Jess, we're gonna walk up and
431
00:31:17,355 --> 00:31:18,915
down the hallway until you feel better.
432
00:31:19,695 --> 00:31:24,855
My mom would sneakily make
me food from my childhood.
433
00:31:25,035 --> 00:31:28,905
'cause I was rapidly
losing weight by that time.
434
00:31:28,965 --> 00:31:32,295
And one of the really critical things
about being on the transplant lift
435
00:31:32,775 --> 00:31:36,855
is having enough weight left on
your body to survive the surgery.
436
00:31:36,855 --> 00:31:40,365
Because a transplant surgery
is between eight and 12 hours.
437
00:31:40,395 --> 00:31:41,385
It's a marathon.
438
00:31:41,385 --> 00:31:42,405
Mm-hmm.
439
00:31:42,960 --> 00:31:46,560
By that time, I'd whittled
down to about 49 kilos.
440
00:31:46,560 --> 00:31:50,580
Now for someone that's five foot
nine and a half, that's not enough
441
00:31:50,580 --> 00:31:52,140
weight to carry on my frame.
442
00:31:52,140 --> 00:31:57,270
And so my mum was lacing food with
thickened cream and slabs of butter
443
00:31:57,270 --> 00:32:02,070
everywhere, and I just refused to
eat, but she kept making it anyway.
444
00:32:02,070 --> 00:32:07,860
So when you talk about the power of the
people around a patient with a chronic
445
00:32:07,950 --> 00:32:15,180
illness or a really serious illness,
there is a superhuman power that comes
446
00:32:15,180 --> 00:32:18,030
from the hope that those people give.
447
00:32:19,410 --> 00:32:25,380
And I'm forever grateful to those people
that carry the trauma of that experience
448
00:32:25,380 --> 00:32:33,390
with them, of me not recognizing them,
me refusing to eat, me not knowing who.
449
00:32:34,440 --> 00:32:38,820
Was asking me questions,
not knowing how to respond.
450
00:32:38,970 --> 00:32:44,370
I think about all the difficult times
they must have been through, and
451
00:32:45,720 --> 00:32:51,570
you know, particularly my husband, I
still don't know how he did it 'cause
452
00:32:52,500 --> 00:32:58,440
it must have been incredibly hard to
see the shell of the person that he
453
00:32:58,440 --> 00:33:01,950
married, essentially wasting away.
454
00:33:03,389 --> 00:33:05,520
You do have me intrigued Jess.
455
00:33:05,879 --> 00:33:09,510
What were the childhood recipes that
your mum were, was bringing out for you?
456
00:33:10,020 --> 00:33:13,050
What were your favorite things that she
was actually trying to entice you with?
457
00:33:13,620 --> 00:33:16,440
Oh, she was trying to entice
me with all sorts of things.
458
00:33:16,620 --> 00:33:21,480
You can never go past, you know,
a good custard, you know, plenty
459
00:33:21,480 --> 00:33:24,210
of eggs whipping it through.
460
00:33:24,930 --> 00:33:29,070
She was making me like full milk,
the good old fashioned full milk
461
00:33:29,070 --> 00:33:32,460
milo, trying to force me to eat.
462
00:33:32,700 --> 00:33:33,060
Um.
463
00:33:33,570 --> 00:33:38,970
The good old cuddled egg, you know,
all of those old and you know, slabs
464
00:33:38,970 --> 00:33:41,310
of buttered toast with those eggs.
465
00:33:41,400 --> 00:33:46,710
I thought she thought she could
just open, you know, a slab of lu
466
00:33:46,710 --> 00:33:50,460
pack butter and just slap it on
everything that I put into my mouth.
467
00:33:51,000 --> 00:33:52,470
But also the treats.
468
00:33:52,470 --> 00:33:56,790
There was a ridiculous amount of, you
know, she used to make florentines.
469
00:33:56,790 --> 00:33:57,780
I would just have boxes.
470
00:33:57,780 --> 00:33:58,770
She would just arrive, oh wow.
471
00:33:58,770 --> 00:33:59,370
On a Monday.
472
00:33:59,550 --> 00:34:05,760
She would just arrive every Sunday night
with just boxes and boxes of chocolate
473
00:34:05,760 --> 00:34:08,909
covered cherry corn flakes, Florentine.
474
00:34:10,050 --> 00:34:15,659
And every time like breakfast, she
would be serving me breakfast and
475
00:34:15,659 --> 00:34:19,350
a Florentine and a milo, and then
it would get to morning tea and it
476
00:34:19,350 --> 00:34:23,520
would be husted and a full cream.
477
00:34:23,940 --> 00:34:26,220
Milo or a coffee and a Florentine.
478
00:34:26,250 --> 00:34:31,470
I had Florentines 24 7 for a
long, long time, and it's probably
479
00:34:31,470 --> 00:34:36,630
a habit that's crept into my
regular life post-transplant.
480
00:34:36,660 --> 00:34:41,460
And quite often if I went into
hospital, even after my transplant
481
00:34:41,490 --> 00:34:47,850
mom arrived into the transplant unit
post-transplant, she's like, are
482
00:34:47,850 --> 00:34:49,650
you allowed to eat florentines yet?
483
00:34:50,010 --> 00:34:57,090
Uh, I think it was, I think it was
as cathartic for my mom to be doing
484
00:34:57,090 --> 00:35:02,940
something and physically working out
her anxiety and knowing that it was
485
00:35:02,940 --> 00:35:04,445
something that I was going to eat.
486
00:35:05,430 --> 00:35:06,240
I love that.
487
00:35:06,450 --> 00:35:13,290
And your dad, you know, you, you, you
mentioned him when he came to you walking
488
00:35:13,290 --> 00:35:17,040
you down the corridor when you were being,
I think you used the word belligerent.
489
00:35:17,370 --> 00:35:17,580
Yep.
490
00:35:18,210 --> 00:35:18,390
And.
491
00:35:19,634 --> 00:35:24,285
I think that's a really good
example, that not everything is good.
492
00:35:24,285 --> 00:35:28,875
Is it the emotions, like there's
a whole spectrum of emotions you
493
00:35:28,875 --> 00:35:30,825
must experience during that time.
494
00:35:30,975 --> 00:35:36,165
Can you talk me through those range and
what you were experiencing and how that
495
00:35:36,165 --> 00:35:40,154
impacted on your, your relationships with
friends and, you know, you've touched
496
00:35:40,154 --> 00:35:44,535
it quite a bit on family, but just
more that sort of outer circle as well.
497
00:35:45,254 --> 00:35:50,595
It's fair to say that once you
are waitlisted for a transplant,
498
00:35:50,595 --> 00:35:52,424
your world becomes very small.
499
00:35:52,455 --> 00:35:59,504
For anyone that is listening who
is waitlisted or who is isolated
500
00:35:59,504 --> 00:36:04,964
because of their health status,
your world becomes incredibly small.
501
00:36:05,115 --> 00:36:10,935
And particularly at that time,
for me, I couldn't risk being
502
00:36:10,935 --> 00:36:13,575
physically in contact with people.
503
00:36:14,190 --> 00:36:18,839
Due to the risk of COVID or contracting
an illness, I was incredibly
504
00:36:18,960 --> 00:36:24,990
unwell and catching a cold could
have been life-threatening for me.
505
00:36:25,589 --> 00:36:32,100
And so the lack of contact and the
feelings of isolation and the loss
506
00:36:32,100 --> 00:36:36,810
of physical touch with my family
in particular, and as I became
507
00:36:36,810 --> 00:36:43,319
weaker and weaker, not being able to
hold my child, you know, you never
508
00:36:43,319 --> 00:36:46,620
knew when a bad day was coming.
509
00:36:46,830 --> 00:36:48,630
And it's really interesting.
510
00:36:48,630 --> 00:36:54,330
I talked to Chris about it a bit, and
he started to identify when a bad day
511
00:36:54,330 --> 00:36:59,549
was coming, because unbeknownst to
me, during the nighttime while I was
512
00:36:59,549 --> 00:37:07,380
asleep, I quite often called out in
pain and he would wake up and just
513
00:37:07,620 --> 00:37:11,250
wait and see if he needed to give me.
514
00:37:12,090 --> 00:37:14,610
Some pain medication to
put me back to sleep.
515
00:37:14,670 --> 00:37:20,160
And he said, I always knew when a
bad day was going to happen because
516
00:37:20,160 --> 00:37:22,170
it always started with a bad night.
517
00:37:22,260 --> 00:37:27,060
And it was those days where I would
wake up and I didn't realize that
518
00:37:27,060 --> 00:37:31,980
I'd been in pain for a long, long
time, but asleep and I would refuse
519
00:37:31,980 --> 00:37:37,800
to take my medication and I, Chris
would make me multiple breakfasts.
520
00:37:38,130 --> 00:37:39,360
No, I don't want that.
521
00:37:39,570 --> 00:37:40,410
He'd make a coffee.
522
00:37:40,470 --> 00:37:41,820
No, I don't want that.
523
00:37:42,420 --> 00:37:43,470
Make eggs on toast.
524
00:37:43,560 --> 00:37:45,000
No, I don't want that.
525
00:37:45,960 --> 00:37:50,310
And it got to the point where
Chris didn't know what else to do.
526
00:37:50,340 --> 00:37:54,240
You don't go to hospital 'cause your wife
won't take her medicine or eat her food.
527
00:37:54,960 --> 00:37:58,500
And that's when they called in the
big guns, you know, mom and dad.
528
00:37:58,560 --> 00:38:03,060
And you know, I'm very
grateful to my family.
529
00:38:03,150 --> 00:38:08,700
I'm actually very grateful to Chris for
being humble enough to ask for help.
530
00:38:08,700 --> 00:38:09,960
It's, it's really difficult.
531
00:38:11,415 --> 00:38:12,735
It's really difficult.
532
00:38:13,425 --> 00:38:18,135
I'm coming to learn for what a lot
of people treat chronic illness as
533
00:38:18,135 --> 00:38:24,105
a private, private thing that they
don't wanna burden other people with.
534
00:38:25,185 --> 00:38:31,815
But it certainly got to the point
where I'm sure Chris nearly broke
535
00:38:31,815 --> 00:38:37,965
down himself because everything he
did, I would just, I would refuse.
536
00:38:38,025 --> 00:38:40,245
And it was nothing to do with Chris.
537
00:38:40,335 --> 00:38:42,735
It was all about how I was feeling.
538
00:38:42,795 --> 00:38:46,635
And I just did not feel
well enough to do a thing.
539
00:38:47,145 --> 00:38:48,465
Not one thing.
540
00:38:50,175 --> 00:38:56,685
And it wasn't often until either my dad
turned up or my nursing team came to our
541
00:38:56,685 --> 00:39:00,405
house every day at 11 o'clock every day.
542
00:39:00,405 --> 00:39:03,885
At 11 o'clock they
would come into my room.
543
00:39:03,885 --> 00:39:06,960
I. They would take my obs,
they would draw blood.
544
00:39:07,560 --> 00:39:13,200
By that time I had a permanent
medical pack called a Baxter
545
00:39:13,200 --> 00:39:18,870
bottle that was intravenously,
permanently infused into my arm.
546
00:39:19,140 --> 00:39:23,790
And every day the pharmacy would
drop off the new me round of
547
00:39:23,790 --> 00:39:26,220
medicine to insert into my iv.
548
00:39:27,570 --> 00:39:32,760
And so quite often, Chris will
have tried to talk me into eating
549
00:39:32,760 --> 00:39:36,960
or taking my medicine for three
or four hours until 11 o'clock.
550
00:39:37,170 --> 00:39:40,140
And it wasn't until the nursing
staff arrive and the nursing staff
551
00:39:40,140 --> 00:39:43,740
would say, Jess, you need to take
your medicine and you've gotta drink
552
00:39:43,740 --> 00:39:45,390
that drink to have your medicine.
553
00:39:45,720 --> 00:39:46,800
And I would just do it.
554
00:39:46,890 --> 00:39:47,640
I wouldn't do it.
555
00:39:48,720 --> 00:39:56,250
And so understanding the enormous
level of frustration, I'm sure all of
556
00:39:56,250 --> 00:40:02,280
my family experienced at one point or
another, particularly in that last.
557
00:40:03,089 --> 00:40:06,779
12 months when I was really unwell.
558
00:40:07,140 --> 00:40:11,339
So I collapsed late in 2019.
559
00:40:12,029 --> 00:40:18,990
I spent most of 2020 regaining
consciousness and strength, and then I
560
00:40:18,990 --> 00:40:24,600
was well enough to go through workup week
and be waitlisted at the start of 2021.
561
00:40:25,259 --> 00:40:29,640
And I did not receive my transplant
until the February of 2022.
562
00:40:30,120 --> 00:40:34,620
So all of 2021 was a bit
of a blur for my family.
563
00:40:35,475 --> 00:40:39,134
You mentioned the allied health
professionals that you had around you,
564
00:40:39,915 --> 00:40:43,785
what did that look like at the different
stages as you worked through that and,
565
00:40:43,785 --> 00:40:47,775
and you mentioned earlier on that you
had private health insurance and that was
566
00:40:47,775 --> 00:40:50,415
very instrumental when you had Meadow.
567
00:40:50,865 --> 00:40:52,935
But if you can just talk
through the support.
568
00:40:53,025 --> 00:40:57,915
So we know the family was really
instrumental, but who outside that,
569
00:40:58,125 --> 00:41:00,675
that was helping you on a daily basis?
570
00:41:00,675 --> 00:41:03,015
Or what was the sort of regime like?
571
00:41:04,245 --> 00:41:06,825
So I'm very, very fortunate.
572
00:41:06,825 --> 00:41:12,105
I look back on it now and you know, they
quite often talk about the disparity
573
00:41:12,105 --> 00:41:18,645
between patients that are, you know,
situated in metropolitan cities
574
00:41:18,645 --> 00:41:20,925
versus rural and regional patients.
575
00:41:20,925 --> 00:41:28,005
And, you know, living on the surf coast
just outside of Geelong, you know, it's
576
00:41:28,035 --> 00:41:30,375
nearly a two hour trip to the Austin.
577
00:41:30,735 --> 00:41:34,125
It's very difficult to.
578
00:41:34,695 --> 00:41:40,185
Be a patient with a chronic
illness without a medical team that
579
00:41:40,185 --> 00:41:45,015
supports both regional appointments
and metropolitan appointments.
580
00:41:45,285 --> 00:41:51,465
'cause no one wants to take a very
unwell, cranky patient in the car up
581
00:41:51,465 --> 00:41:58,065
the Melbourne Highway for a four hour
round trip, for a half hour appointment.
582
00:41:58,545 --> 00:42:04,725
And so because of COVID, in many
respects, I was fortunate the rise of
583
00:42:04,725 --> 00:42:10,815
telehealth really until that time hadn't
been used a lot by the transplant unit.
584
00:42:10,815 --> 00:42:15,195
And all of a sudden everything
became a telehealth appointment.
585
00:42:15,195 --> 00:42:20,865
So I had a really crucial team,
my gastroenterology team, I had
586
00:42:20,865 --> 00:42:27,045
my pathology team, my gp, I had my
endocrinologist, I had a physio,
587
00:42:27,405 --> 00:42:29,895
I had a, a massage regularly.
588
00:42:31,335 --> 00:42:37,154
And also had to see the, the
dentist quite regularly as well.
589
00:42:37,154 --> 00:42:42,674
Because when you're taking the
medication, either a heavy steroid load
590
00:42:43,154 --> 00:42:47,985
or the range, the complexity of the
medicines that I was taking was a real
591
00:42:47,985 --> 00:42:50,384
draw on my natural store of calcium.
592
00:42:50,384 --> 00:42:57,345
So checking my bone density and my oral
health was also a critical part because
593
00:42:57,345 --> 00:43:04,904
again, any infection that stems from
the mouth or the bone could have put my
594
00:43:04,904 --> 00:43:07,575
eligibility for transplantation at risk.
595
00:43:08,355 --> 00:43:14,775
So by the end of it, you know, I started
off with three doctors and right before
596
00:43:14,775 --> 00:43:18,645
transplant, it's fair to say, and I
often refer to them as my footy team.
597
00:43:18,674 --> 00:43:24,075
I had well over 30 medical
professionals all having imports from
598
00:43:24,285 --> 00:43:26,595
my hospital and the health health.
599
00:43:27,120 --> 00:43:31,140
My hi guys and girls who would
roll into my house every day
600
00:43:31,140 --> 00:43:32,819
of the week, seven days a week.
601
00:43:33,420 --> 00:43:40,920
My pathology team, because of my status,
I couldn't just turn up at a path
602
00:43:40,920 --> 00:43:46,500
center and sit in the waiting area and
be exposed to the public, so my local
603
00:43:46,500 --> 00:43:50,069
pathology would open 15 minutes early.
604
00:43:50,160 --> 00:43:53,520
I would be the first one in
the door, no one else around.
605
00:43:53,580 --> 00:43:54,720
They'd draw my blood.
606
00:43:54,839 --> 00:43:56,490
I'd be able to go home again.
607
00:43:56,790 --> 00:44:02,700
All of that team, we definitely have
a bit of a moral contract for life.
608
00:44:02,700 --> 00:44:05,520
I often see them still in the circles.
609
00:44:05,730 --> 00:44:07,470
I still get my regular checkups.
610
00:44:07,470 --> 00:44:11,850
I still get my regular blood tests,
all part of making sure I'm taking
611
00:44:11,850 --> 00:44:14,250
incredibly good care of my new liver.
612
00:44:15,345 --> 00:44:20,174
And it is such a joy to
see them and be well.
613
00:44:20,774 --> 00:44:25,455
Um, Geelong, I'm very fortunate,
is still a bit of a small place
614
00:44:25,515 --> 00:44:30,555
and so it's really interesting the
relationship that we carry now that I am.
615
00:44:30,555 --> 00:44:30,884
Well,
616
00:44:31,395 --> 00:44:35,504
and let's, let's look at that time that
you're talking about, that waiting period,
617
00:44:35,625 --> 00:44:42,975
you know, from the, from the sort of day
one to whatever could be up to 18 months.
618
00:44:43,424 --> 00:44:45,105
What did that look like for you
619
00:44:45,884 --> 00:44:46,904
in the beginning?
620
00:44:47,745 --> 00:44:53,865
Once you are waitlisted, going
through workup week is no small thing.
621
00:44:53,955 --> 00:45:00,044
I know it just sounds like, you know,
five days in hospital and appointments
622
00:45:00,044 --> 00:45:06,495
and doctors, but it's incredibly
filled with all of the complex
623
00:45:06,495 --> 00:45:10,365
human emotions because every test.
624
00:45:10,920 --> 00:45:13,200
You are hoping that you are well enough.
625
00:45:13,350 --> 00:45:18,450
So every time you know, you do
a stress test on your heart to
626
00:45:18,450 --> 00:45:20,009
make sure your heart can survive.
627
00:45:20,009 --> 00:45:23,609
12 hours of surgery is
incredibly stressful.
628
00:45:23,609 --> 00:45:27,450
So every appointment that you're turning
up, you're hoping they don't find
629
00:45:27,450 --> 00:45:29,220
something that makes you ineligible.
630
00:45:29,220 --> 00:45:32,940
So that whole week, my mom came with me.
631
00:45:32,970 --> 00:45:35,040
My mom was with me for every test.
632
00:45:35,399 --> 00:45:42,000
She sat outside the door waiting,
talking to me before I went in,
633
00:45:42,450 --> 00:45:44,580
catching me and all of my emotions.
634
00:45:44,910 --> 00:45:48,990
Every time I walked out of a test,
whilst Chris was at home caring for
635
00:45:48,990 --> 00:45:54,509
Meadow, trying to carry on life as
normal, and once I was waitlisted,
636
00:45:54,540 --> 00:45:58,049
there's a moment of sheer relief and you
think, right, I'm done with that part.
637
00:45:58,049 --> 00:46:02,549
Now I've run that race and
I'm over the finish line.
638
00:46:02,819 --> 00:46:08,250
And then you just quickly realize you're
starting the next leg of the race.
639
00:46:08,985 --> 00:46:13,155
I became a professional patient,
is the only way to describe it.
640
00:46:13,845 --> 00:46:19,185
In those first few months, I
just really focused on what I
641
00:46:19,185 --> 00:46:21,795
had to do and I had structure.
642
00:46:22,275 --> 00:46:28,635
I, by then, they had returned to
school for moments for sort of couple
643
00:46:28,635 --> 00:46:31,155
of months at a time, and then there'd
be another lockdown and she'd be
644
00:46:31,155 --> 00:46:32,805
back home at the kitchen table again.
645
00:46:32,805 --> 00:46:38,445
But we found a rhythm and so I knew
that I just had to get up and do my
646
00:46:38,445 --> 00:46:42,645
blood test and take my medicine and
eat breakfast, and I could eat it
647
00:46:42,675 --> 00:46:45,555
nice and slow as long as I'd eaten it.
648
00:46:45,555 --> 00:46:49,695
By the time the nurse turned
up at the doorbell rang at 11
649
00:46:49,695 --> 00:46:51,705
o'clock, I'd have my appointment.
650
00:46:51,705 --> 00:46:55,695
It would always take about an
hour, and then I would ring my mom.
651
00:46:55,905 --> 00:47:00,975
I rang my mom probably three or
four times every day on the days
652
00:47:00,975 --> 00:47:05,925
that she wasn't physically with
me, and it's a really interesting.
653
00:47:06,870 --> 00:47:13,979
Looking back on it, I just wanted company,
the loneliness is really challenging
654
00:47:14,790 --> 00:47:18,060
and I listened a lot to podcasts.
655
00:47:18,149 --> 00:47:22,799
I would ring my mom on FaceTime
and she would sit me on her kitchen
656
00:47:22,799 --> 00:47:28,410
counter and she would just be making
quarantines or cooking lunch or
657
00:47:29,370 --> 00:47:32,220
sorting, washing or feeding the dog.
658
00:47:32,279 --> 00:47:37,560
And she would just be nattering
about all that was going on in
659
00:47:37,560 --> 00:47:42,509
her world, just so I had company
whenever my sister could be there.
660
00:47:42,839 --> 00:47:49,470
And to be honest, incredibly difficult
for my twin sister to see me get
661
00:47:49,529 --> 00:47:54,899
sick because there's nothing like
watching your mirror image, like the
662
00:47:54,899 --> 00:48:03,270
person who has been your person your
entire life, slowly disintegrate.
663
00:48:04,259 --> 00:48:08,009
There were quite often times when I
was chronically unwell and I was in
664
00:48:08,009 --> 00:48:09,960
the hospital for long periods of time.
665
00:48:09,960 --> 00:48:15,000
My sister would come in and depending
on how sick I was, she would refuse to
666
00:48:15,000 --> 00:48:21,120
leave and she would be sleeping in the
seat next to me, uh, particularly when I
667
00:48:21,120 --> 00:48:23,370
was in Melbourne and away from my family.
668
00:48:23,730 --> 00:48:28,140
I can still remember there was a time
where, and I didn't know who I was
669
00:48:28,319 --> 00:48:35,819
and I was kind of speaking gibberish
and I wasn't really coherent and
670
00:48:35,819 --> 00:48:39,990
she refused to leave and she slept
on the floor in my room because
671
00:48:40,020 --> 00:48:42,540
she meant to be my health advocate.
672
00:48:43,740 --> 00:48:50,580
And waiting takes a terrible toll on your
psyche, and as I've mentioned previously,
673
00:48:50,580 --> 00:48:53,879
I don't know what the answer is.
674
00:48:54,060 --> 00:48:59,759
Waiting 400 odd days is hard and
there are definitely the days
675
00:48:59,759 --> 00:49:02,310
where I didn't carry the hope.
676
00:49:02,925 --> 00:49:05,115
I had someone carrying it for me.
677
00:49:05,295 --> 00:49:11,235
And so if anyone out there is
waiting, you've still gotta keep
678
00:49:11,235 --> 00:49:12,705
living while you are waiting.
679
00:49:13,305 --> 00:49:21,525
And I'm very lucky in that I had a young
child in my life who, when I was at
680
00:49:21,525 --> 00:49:25,095
home, she filled my life with purpose.
681
00:49:25,455 --> 00:49:32,085
And so when I gave up hope for myself,
I kept fighting to be her mother.
682
00:49:32,325 --> 00:49:33,765
That's why I talk about it, right?
683
00:49:33,795 --> 00:49:38,445
Because there are so many people
that are living this experience.
684
00:49:38,805 --> 00:49:44,415
You know, 1800 people are on the
wait list for an organ and about
685
00:49:44,745 --> 00:49:50,355
7,000 more people that would benefit
from a kidney transplant that all
686
00:49:50,355 --> 00:49:55,575
on some level are tackling this
challenge of holding onto hope.
687
00:49:55,845 --> 00:49:58,275
It's a real thing and, and I think that.
688
00:49:58,695 --> 00:50:02,205
You know, people with
other serious prognosis.
689
00:50:03,225 --> 00:50:09,735
Uh, it's something that I had in common
both with my father and my father-in-law
690
00:50:09,765 --> 00:50:14,175
who's no longer with us when they
both had their cancer diagnosis.
691
00:50:14,175 --> 00:50:22,845
It's something that I acutely related to,
is the holding onto hope is an important
692
00:50:22,845 --> 00:50:30,795
part of any serious health diagnosis,
particularly when the prognosis is
693
00:50:30,795 --> 00:50:35,475
terminal or at least very seriously,
life-threatening without treatment
694
00:50:35,535 --> 00:50:40,875
or without medical intervention and
holding onto hope becomes your job.
695
00:50:41,445 --> 00:50:45,255
And if you can't do it for yourself, do
it for the people around you that are
696
00:50:45,255 --> 00:50:47,505
desperately holding onto hope for you
697
00:50:48,135 --> 00:50:51,285
and moving on to your.
698
00:50:52,245 --> 00:50:56,205
Notification that you had found a a donor.
699
00:50:56,355 --> 00:50:57,944
Talk me through that process.
700
00:50:58,365 --> 00:50:59,654
How was the news delivered?
701
00:50:59,895 --> 00:51:02,024
What was then that happened?
702
00:51:02,024 --> 00:51:03,225
What was the timeframe?
703
00:51:03,794 --> 00:51:07,785
I can remember it like it was yesterday.
704
00:51:08,024 --> 00:51:10,125
It was a Thursday afternoon.
705
00:51:10,334 --> 00:51:16,334
It was around school pickup time, so
Chris had just literally walked out
706
00:51:16,725 --> 00:51:18,584
the door to go and collect meadow.
707
00:51:19,544 --> 00:51:23,415
I was sitting at home
like I always did in bed.
708
00:51:23,415 --> 00:51:28,634
By that stage, I was pretty
horizontal for most of the day.
709
00:51:28,665 --> 00:51:37,605
By then, I was too unstable on my feet
to walk unassisted, and so I was in bed
710
00:51:37,995 --> 00:51:42,884
with my mobile phone and my home phone
sitting next to me like I always did
711
00:51:43,605 --> 00:51:49,245
with my go-bag at the front door that
had been sitting there for nearly a year.
712
00:51:50,070 --> 00:51:57,270
By that time and the phone rang and
I saw that it was the Austin phone
713
00:51:57,270 --> 00:52:04,110
number and I had had a telehealth
with the Austin that morning.
714
00:52:04,350 --> 00:52:08,490
And so I thought they were ringing
me back to tell me something, you
715
00:52:08,490 --> 00:52:11,820
know, whether I had a new script or
whether I needed to go and get another.
716
00:52:11,820 --> 00:52:15,480
But I thought they were ringing to
tell me something that they didn't
717
00:52:16,020 --> 00:52:18,210
tell me at my morning appointment.
718
00:52:18,570 --> 00:52:23,490
But it wasn't, the phone rang and
I picked up the phone and it was
719
00:52:23,640 --> 00:52:30,480
Angela, the transplant coordinator,
and I realized that it was Angela
720
00:52:31,200 --> 00:52:35,130
and it's like time stopped.
721
00:52:35,940 --> 00:52:42,690
I actually heard the words,
Jess, we have a liver for you.
722
00:52:43,500 --> 00:52:45,480
And then I don't remember anything else.
723
00:52:45,780 --> 00:52:48,840
I dropped the phone, I started.
724
00:52:49,500 --> 00:52:53,790
Crying and unbeknownst to me, Chris
and Meadow had walked in the front
725
00:52:53,790 --> 00:53:00,030
door as I'd answered the phone, and so
they've walked past the bedroom door
726
00:53:00,750 --> 00:53:07,080
and I'm crying and screaming, and on
the phone, the phone is talking, saying,
727
00:53:07,080 --> 00:53:09,480
hello, pick up, pick up, pick up.
728
00:53:09,810 --> 00:53:13,020
And my husband picked the
phone up and really quickly
729
00:53:13,050 --> 00:53:15,180
figured out what was going on.
730
00:53:15,720 --> 00:53:19,980
Meadow jumped onto the bed and
into my arms, and all of a sudden
731
00:53:19,980 --> 00:53:22,590
I realized that I might survive.
732
00:53:23,760 --> 00:53:31,440
And pretty quickly also realized
that for me to receive that call,
733
00:53:32,010 --> 00:53:36,300
that someone had lost their life
and that there was a family that
734
00:53:36,720 --> 00:53:40,380
were experiencing unimaginable loss.
735
00:53:41,130 --> 00:53:47,340
So I could receive that phone call, but I
didn't really have time to do much else.
736
00:53:47,865 --> 00:53:50,295
I held onto better for a long, long time.
737
00:53:50,505 --> 00:53:56,235
Chris hung up the phone and he said,
Jess, you've gotta get organized now.
738
00:53:56,295 --> 00:53:58,275
You have to do exactly what I tell you.
739
00:53:58,904 --> 00:54:03,915
And surprisingly, I was a very
good patient and I did everything
740
00:54:03,915 --> 00:54:05,535
that Chris told me to do.
741
00:54:06,285 --> 00:54:12,315
We had our bags ready, meadow, his
godparents, took care of her, and
742
00:54:13,065 --> 00:54:15,495
Chris drove me up to the Austin.
743
00:54:15,555 --> 00:54:18,825
We were in the middle of another
lockdown, believe it or not, at that time.
744
00:54:18,825 --> 00:54:24,165
And so Chris was not allowed into
the hospital apart from waiting
745
00:54:24,165 --> 00:54:27,315
with me in the initial waiting area.
746
00:54:28,245 --> 00:54:29,654
I didn't say goodbye to Meadow.
747
00:54:30,134 --> 00:54:31,485
I said, I will talk to you soon.
748
00:54:32,175 --> 00:54:36,525
'cause I couldn't say goodbye
and Chris stayed with me.
749
00:54:37,020 --> 00:54:38,550
I had my COVID screening.
750
00:54:38,850 --> 00:54:42,360
They would not take me through
without passing a swab and then
751
00:54:42,360 --> 00:54:44,130
an auxiliary secondary test.
752
00:54:44,130 --> 00:54:47,700
And once I had been cleared
that I was COVID free.
753
00:54:48,630 --> 00:54:49,920
Kristin didn't say goodbye either.
754
00:54:50,490 --> 00:54:52,170
He said, I'll see you real soon.
755
00:54:52,860 --> 00:54:55,110
And that's when I was taken away.
756
00:54:55,170 --> 00:54:56,430
I went into pre-op.
757
00:54:56,970 --> 00:54:58,170
The team are incredible.
758
00:54:58,410 --> 00:55:01,050
It's like a regular day
at the office for them.
759
00:55:01,200 --> 00:55:04,860
I think my life is fundamentally
changing forever, and they're
760
00:55:04,860 --> 00:55:09,000
all as relaxed and as, and it's
hard not to get sucked in, right?
761
00:55:09,090 --> 00:55:10,200
They're all really relaxed.
762
00:55:10,200 --> 00:55:12,240
I was like, well, maybe
I should relax too.
763
00:55:12,660 --> 00:55:13,830
I was still really nervous.
764
00:55:13,830 --> 00:55:17,700
I was still waiting for the
surgeon to come out and say,
765
00:55:17,700 --> 00:55:19,830
yep, the liver's healthy enough.
766
00:55:19,950 --> 00:55:22,050
'cause that is a huge
risk with transplants.
767
00:55:22,050 --> 00:55:23,430
And they talk you through it.
768
00:55:23,430 --> 00:55:28,050
It's part of the education that you
get as a waitlisted patient, is that
769
00:55:28,260 --> 00:55:31,410
you might get the phone call, but
by the time you might arrive, the
770
00:55:31,410 --> 00:55:34,950
surgical team might have assessed
the organ and for whatever reason.
771
00:55:35,265 --> 00:55:40,155
They've deemed that the organ
is unsuitable for transplant.
772
00:55:40,485 --> 00:55:47,535
And so I didn't really relax, even though
the pre-op team had me gowned up and
773
00:55:47,745 --> 00:55:52,155
you know, I had the hairnet on and they
were trying to keep it light and fun.
774
00:55:52,695 --> 00:55:57,675
It wasn't until the surgeons walked
out of the theater and said, well,
775
00:55:57,675 --> 00:56:02,505
we're ready when you are Jess,
that I finally let it sink in,
776
00:56:02,955 --> 00:56:05,385
that everything was gonna be okay.
777
00:56:06,255 --> 00:56:07,155
My goodness.
778
00:56:07,155 --> 00:56:08,595
What a moment, Jess.
779
00:56:09,225 --> 00:56:09,855
And then what?
780
00:56:09,855 --> 00:56:11,475
You had to count back from 10.
781
00:56:11,835 --> 00:56:12,370
Yeah, that's right.
782
00:56:12,915 --> 00:56:19,185
I did that part where I was actually very,
very weak, as my husband would say, quite.
783
00:56:19,590 --> 00:56:20,130
Cheekily.
784
00:56:20,130 --> 00:56:22,110
He would say, Jess, you
were a bag of bones.
785
00:56:22,110 --> 00:56:26,670
By the time I took you to hospital,
you were a living skeleton.
786
00:56:26,670 --> 00:56:27,930
You were so skinny.
787
00:56:27,960 --> 00:56:32,100
And so the whole medical
team transfer you in there.
788
00:56:32,190 --> 00:56:33,240
And they were hilarious.
789
00:56:33,240 --> 00:56:37,050
They were picking, you know, their music
and they wanted to make sure that I
790
00:56:37,050 --> 00:56:38,790
was happy with their music selection.
791
00:56:38,820 --> 00:56:41,550
And by the time I laughed
at their joke, I was out.
792
00:56:41,670 --> 00:56:42,360
I was gone.
793
00:56:42,420 --> 00:56:45,000
I was on my way to being.
794
00:56:45,000 --> 00:56:45,510
Well.
795
00:56:45,930 --> 00:56:48,930
And tell me, what was it like
when you came out the other side?
796
00:56:49,410 --> 00:56:54,750
I woke up consciously woke up
three days after my transplant.
797
00:56:55,020 --> 00:57:00,390
I'd been awake a couple of times
apparently, but was heavily,
798
00:57:00,570 --> 00:57:06,060
heavily sedated with a mixture of
medication, mainly pain medication
799
00:57:06,090 --> 00:57:11,220
and some antibiotics to prevent
infection post-transplant.
800
00:57:11,790 --> 00:57:20,234
But it was day three that I. Woke up and
started asking for Chris, my husband, and
801
00:57:20,415 --> 00:57:24,435
kind of reverted back to being that bad
patient again, where I just refused to
802
00:57:24,435 --> 00:57:26,714
do anything until I could speak to Chris.
803
00:57:27,045 --> 00:57:29,174
I said, I just wanna speak to my husband.
804
00:57:29,325 --> 00:57:31,484
I just want him to know that I'm okay.
805
00:57:31,995 --> 00:57:37,815
And I then after that, the
team came in and I still, I, I
806
00:57:37,815 --> 00:57:38,955
looked a bit like an octopus.
807
00:57:38,955 --> 00:57:42,855
I had lines coming out of my neck and
out of my arms and out of my legs.
808
00:57:42,855 --> 00:57:49,214
I was still in the intensive care
unit and they offered me some food
809
00:57:49,515 --> 00:57:51,674
and I was like, yeah, I'm starving.
810
00:57:52,395 --> 00:57:54,524
I'm absolutely starving.
811
00:57:55,274 --> 00:57:59,145
And then I started laughing and
the nurses were like, are you okay?
812
00:57:59,145 --> 00:58:01,904
And I'm like, I haven't
been hungry in a year.
813
00:58:02,565 --> 00:58:07,545
And so I knew that I was, well,
I knew that it had worked and I
814
00:58:07,545 --> 00:58:13,694
knew the sheer relief, the sheer
relief that just waves and waves.
815
00:58:14,970 --> 00:58:16,230
Waves of relief.
816
00:58:16,350 --> 00:58:22,440
And I'm sure that the intensive care
team thought that I was high on life.
817
00:58:22,470 --> 00:58:25,170
'cause I was for the first time.
818
00:58:26,310 --> 00:58:28,800
And this is another thing
about chronic illness, right?
819
00:58:29,550 --> 00:58:31,560
You never notice how sick you are.
820
00:58:31,920 --> 00:58:33,990
'cause you just get a
little bit sicker every day.
821
00:58:34,230 --> 00:58:38,460
A little bit sicker, a little bit
sicker, and you slowly retreat
822
00:58:38,850 --> 00:58:43,380
from your well life, but you only
do it little bit by little bit.
823
00:58:43,770 --> 00:58:47,610
So you stop making phone calls and you
stop meeting people for coffee and you
824
00:58:47,610 --> 00:58:52,080
stop emailing people and then you stop
texting, then you stop looking at your
825
00:58:52,080 --> 00:58:54,300
phone and then you don't watch television.
826
00:58:54,870 --> 00:59:02,220
And so that retreat had been so gradual
over those 407 days that all of a
827
00:59:02,220 --> 00:59:04,740
sudden I was well and I was like.
828
00:59:06,300 --> 00:59:07,350
I've gotta get to it.
829
00:59:07,380 --> 00:59:09,270
When am I getting out of intensive care?
830
00:59:09,270 --> 00:59:10,560
When can I go to the ward?
831
00:59:10,590 --> 00:59:11,880
When can I see meadow?
832
00:59:11,910 --> 00:59:12,990
When can I speak to my fa?
833
00:59:13,020 --> 00:59:14,760
I was like, I've, I've gotta go.
834
00:59:14,820 --> 00:59:16,050
I've gotta, I've got life.
835
00:59:16,350 --> 00:59:17,160
I've got stuff to do.
836
00:59:18,150 --> 00:59:24,150
And so it was really interesting that it
was like flipping a switch from night.
837
00:59:24,930 --> 00:59:30,960
Today I went from being almost on
death's door to having that door
838
00:59:30,960 --> 00:59:37,740
reopened and a whole long life being
there, waiting for me to embrace it.
839
00:59:38,310 --> 00:59:44,010
And so I leaned really,
really hard into my recovery.
840
00:59:44,070 --> 00:59:49,800
I made it in and out post-transplant
and back home in 28 days,
841
00:59:49,830 --> 00:59:51,750
which is an incredibly short.
842
00:59:52,320 --> 00:59:53,670
Recovery period.
843
00:59:53,790 --> 00:59:58,080
Most people are a month, five
weeks, six weeks post-transplant.
844
00:59:58,710 --> 01:00:00,600
I was desperate to get home.
845
01:00:00,720 --> 01:00:05,279
I was desperate to get home to
Meadow, and I treated being a
846
01:00:05,279 --> 01:00:08,009
patient like my full-time job.
847
01:00:09,210 --> 01:00:11,790
They came round and said,
let's do some physio.
848
01:00:11,850 --> 01:00:14,340
I did physio, I did extra physio.
849
01:00:14,370 --> 01:00:16,980
When they came round and
said, here's your meal plan.
850
01:00:16,980 --> 01:00:18,840
We'd like you to try and eat everything.
851
01:00:19,500 --> 01:00:24,509
I would sit there with my meal tray
and force myself to eat everything,
852
01:00:24,509 --> 01:00:26,430
even when I didn't really want to.
853
01:00:27,029 --> 01:00:30,509
I was desperate to get
home and restart my life.
854
01:00:30,509 --> 01:00:34,080
I was desperate to show Meadow that
I was doing everything I could to
855
01:00:34,080 --> 01:00:38,549
get back to her and to let Chris
know that he had his person back.
856
01:00:38,549 --> 01:00:41,970
He had, it was me, it was Jess
that I was coming back to him
857
01:00:43,020 --> 01:00:44,940
and three years on now, Jess.
858
01:00:45,555 --> 01:00:50,325
Looking back in hindsight, what has the
whole experience sort of informed how
859
01:00:50,325 --> 01:00:53,715
you view life now and and your future?
860
01:00:54,585 --> 01:01:00,675
Look, it's fair to say the life
that I led before this experience
861
01:01:01,185 --> 01:01:03,645
is very like vastly different.
862
01:01:04,125 --> 01:01:08,325
Like I almost don't recognize
the life that I had before
863
01:01:08,325 --> 01:01:10,335
falling pregnant with Meadow.
864
01:01:10,635 --> 01:01:16,095
I worked a full-time, busy
job in the public service.
865
01:01:16,515 --> 01:01:18,795
I worked in the media.
866
01:01:19,005 --> 01:01:25,095
I would quite easily work a 10,
12 hour day, five days a week.
867
01:01:26,685 --> 01:01:36,135
I really prioritized work and not the
rest of my life and the rest of myself.
868
01:01:36,675 --> 01:01:41,835
And life is really different
now in many respects.
869
01:01:42,435 --> 01:01:44,055
I would say life is really simple.
870
01:01:44,595 --> 01:01:48,825
I don't do anything that
isn't purposeful with my life.
871
01:01:49,155 --> 01:01:52,935
First and foremost, my
priorities are my family.
872
01:01:53,415 --> 01:01:58,665
My family carried me through a really
difficult chapter of my life, and
873
01:01:58,665 --> 01:02:03,255
I don't think I would be here today
had it not been for their sacrifice.
874
01:02:03,705 --> 01:02:04,605
And I owe them.
875
01:02:05,595 --> 01:02:11,745
I owe them to show up and be
present and participate fully
876
01:02:11,925 --> 01:02:14,625
in my life in all things.
877
01:02:15,015 --> 01:02:17,985
Not just the things that are my
preference, but in the things
878
01:02:17,985 --> 01:02:20,985
that are Meadow's preference
and Chris's preference.
879
01:02:21,225 --> 01:02:27,555
And so it does mean challenging myself to
do things that aren't in my wheelhouse.
880
01:02:27,735 --> 01:02:31,995
We recently had a trip, uh, a
family holiday, our first family
881
01:02:31,995 --> 01:02:35,145
holiday overseas since being ill.
882
01:02:35,775 --> 01:02:39,975
And we went zip lining
down the mountains in Fiji.
883
01:02:40,515 --> 01:02:42,525
Not my first choice, but.
884
01:02:42,900 --> 01:02:50,910
It was definitely time for Chris Meadow
and myself to start making family memories
885
01:02:50,910 --> 01:02:53,430
that are centered around wellness.
886
01:02:53,880 --> 01:02:56,880
So that was my immediate priority.
887
01:02:57,569 --> 01:03:04,950
The other really big part of my
life that's changed is the sense of
888
01:03:04,950 --> 01:03:07,049
responsibility that I carry with me.
889
01:03:07,560 --> 01:03:12,480
You know, in a sliding doors
moment, someone's life ended
890
01:03:12,480 --> 01:03:14,310
so my life could continue.
891
01:03:15,000 --> 01:03:21,330
And whilst my family was sitting in
a hospital room hoping for the best
892
01:03:21,600 --> 01:03:27,420
someone else and their immediate family
were sitting in a hospital room grieving
893
01:03:27,420 --> 01:03:31,110
an unimaginable and unexpected loss.
894
01:03:31,950 --> 01:03:38,610
And so to understand the gravity
and the profoundly human experience
895
01:03:39,270 --> 01:03:41,100
of that sliding doors moment.
896
01:03:41,655 --> 01:03:44,745
Is not lost on me and it's
not lost on my family.
897
01:03:44,835 --> 01:03:48,315
And so I choose differently.
898
01:03:48,465 --> 01:03:50,805
I don't sweat the small stuff anymore.
899
01:03:51,675 --> 01:03:53,835
I don't get caught up in the daily news.
900
01:03:54,585 --> 01:03:57,735
I don't complain about
waiting in line for coffee.
901
01:03:58,335 --> 01:04:02,865
I'm not one of those drivers that gets
too annoyed by traffic because what's
902
01:04:02,865 --> 01:04:08,805
the point when you are given a second
chance at living a full and healthy life?
903
01:04:09,884 --> 01:04:11,475
You've gotta be all in, right?
904
01:04:11,505 --> 01:04:13,065
What a second chance it's for.
905
01:04:13,155 --> 01:04:16,455
And so I do talk about organ donation.
906
01:04:16,485 --> 01:04:22,665
I talk about a profound gift that it
is, I'm a passionate health advocate.
907
01:04:23,295 --> 01:04:30,075
I. I work closely with Bowen Health,
the Geelong Health and Hospital Network.
908
01:04:30,495 --> 01:04:34,455
I'm a part of their
consumer advisory board.
909
01:04:34,485 --> 01:04:39,884
I work very closely with Austin
Health and the Australian Center for
910
01:04:39,884 --> 01:04:46,785
Transplantation Excellence and Research
at Austin Health, and of course every
911
01:04:47,175 --> 01:04:53,295
Donate Life week and every opportunity
that I can speak to medical teams
912
01:04:53,295 --> 01:04:55,995
and up and coming nursing staff.
913
01:04:56,295 --> 01:05:01,515
Tomorrow I'm speaking with the
incredible medical students that
914
01:05:01,515 --> 01:05:07,785
are studying medicine at Melbourne
University so they can hear from the
915
01:05:07,785 --> 01:05:14,445
lived experience of a patient that has
been through a chronic illness, pro
916
01:05:14,475 --> 01:05:21,134
diagnosis and has come out the other
side because a second chance at life.
917
01:05:21,555 --> 01:05:26,355
Does matter and what you
do with your time matters.
918
01:05:26,504 --> 01:05:28,154
And I have to.
919
01:05:28,185 --> 01:05:33,944
'cause the most important thing that I
can do is honor my donor and honor her
920
01:05:33,944 --> 01:05:38,205
family because I carry her legacy with me.
921
01:05:38,205 --> 01:05:40,185
I carry the gift with me.
922
01:05:40,935 --> 01:05:47,325
You know, my story is definitely my own
and deeply personal, but I share it with
923
01:05:47,325 --> 01:05:50,055
my family and I share it with her family.
924
01:05:50,115 --> 01:05:52,875
'cause it's a shared experience.
925
01:05:53,055 --> 01:05:58,035
And that's why I speak, you
know, our legacy lives on.
926
01:05:58,305 --> 01:06:02,745
Every time I make a school drop off,
every time I'm cheering Meadow on from
927
01:06:02,745 --> 01:06:07,845
the side of a basketball court, you know,
every time I'm there for a home cooked
928
01:06:07,845 --> 01:06:12,765
meal with my husband, every time I'm
wrapping Christmas presents to put under
929
01:06:13,095 --> 01:06:16,035
the tree, those moments I owe to them.
930
01:06:17,565 --> 01:06:20,654
I owe them every single minute.
931
01:06:21,570 --> 01:06:28,950
So I live my life in a way, so I can,
when my time finally comes, I can hold
932
01:06:28,950 --> 01:06:35,610
my head up high and fully acquit myself
to whatever comes next and know that
933
01:06:35,610 --> 01:06:40,890
I've done everything that I can to
ensure that if I can affect positive
934
01:06:40,890 --> 01:06:45,540
change to people that are waiting, to
families, that are waiting with their
935
01:06:45,540 --> 01:06:50,820
loved ones, to donor families that have
given the incredibly special gift of
936
01:06:50,820 --> 01:06:57,810
life and to our up and coming medical
staff and our medical students that are
937
01:06:57,810 --> 01:07:02,190
learning how to be the fantastic doctors
of the future, if there's anything that
938
01:07:02,190 --> 01:07:10,560
I can do to pay it forward so others
can have a better, more fulsome, more
939
01:07:10,560 --> 01:07:16,590
holistic transplant experience, that's
what I feel like might be my legacy.
940
01:07:16,680 --> 01:07:20,370
And you know, I am and always will be.
941
01:07:21,045 --> 01:07:24,345
Forever grateful to my
donor and her family.
942
01:07:25,425 --> 01:07:31,335
Yes, I think sharing your story today
has really provided insight that we
943
01:07:31,335 --> 01:07:37,605
don't normally get to the donor process,
and I really appreciate you taking your
944
01:07:37,605 --> 01:07:42,975
time and sharing really raw emotions
and vulnerability of that story.
945
01:07:42,975 --> 01:07:44,445
So thank you so much.
946
01:07:45,165 --> 01:07:48,105
Look, thank you so much
for having me, Catherine.
947
01:07:48,225 --> 01:07:53,355
And you know, I always say when
I'm talking about this particular
948
01:07:53,355 --> 01:07:58,275
part of my life, organ donation
didn't just save my life.
949
01:07:58,905 --> 01:08:04,755
It gave my daughter back her mother,
and it gave my husband back his wife,
950
01:08:05,685 --> 01:08:09,375
and my parents didn't bury their child.
951
01:08:09,735 --> 01:08:17,685
It is a profoundly far reaching gift
and we will always be forever grateful.
952
01:08:17,895 --> 01:08:19,605
So thank you so much for having me.
953
01:08:22,814 --> 01:08:26,234
We hope you enjoyed today's
episode of Don't Be Caught Dead,
954
01:08:26,535 --> 01:08:28,274
brought to you by Critical Info.
955
01:08:29,055 --> 01:08:33,314
If you liked the episode, learn something
new, or were touched by a story you
956
01:08:33,314 --> 01:08:35,265
heard, we'd love for you to let us know.
957
01:08:35,385 --> 01:08:39,015
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your friends, subscribe so you
958
01:08:39,015 --> 01:08:40,755
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959
01:08:40,904 --> 01:08:45,075
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please rate and review us as it
960
01:08:45,075 --> 01:08:46,814
helps other people to find the show.
961
01:08:47,115 --> 01:08:48,465
Are you dying to know more?
962
01:08:48,585 --> 01:08:49,575
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963
01:08:49,575 --> 01:08:53,505
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964
01:08:53,505 --> 01:08:59,685
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Resources
- Learn more at: Donate Life Week
- Make Death Admin Easy with The Critical Info Platform
A simple system to sort your personal paperwork for when your information becomes critical.
- My Loved One Has Died, What Do I Do Now?
Our guide, ‘My Loved One Has Died, What Do I Do Now?’ provides practical steps for the hours and days after a loved one's death. Purchase it here.
- Support Services
If you're feeling overwhelmed by grief, find support through our resources and bereavement services here.
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