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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 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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I was incredibly fatigued.

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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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to the Austin, and I remained at
the Austin for a number of weeks.

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I was very unwell and so unwell in fact
that the conversation was not had with me.

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The conversation was held with my husband
and he remembers it quite distinctly.

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That head of the transplant
unit sat down with Chris and

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said, your wife is a young mom.

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This is not a quality of life that we
would anticipate for any young family.

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It's time to waitlist
her for a transplant.

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Her prognosis is critical, and once
she recovers from this incident.

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It's time to get ready for a transplant.

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And how did you feel that the
conversation was had with your

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husband and not yourself directly?

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I was critically unwell.

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Okay.

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I was in and out of consciousness.

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I was in a lot of pain.

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And at that stage I was suffering
from a medical condition

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called hepatic encephalopathy.

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And I lost my motor skills.

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I couldn't speak, I couldn't
be my own health advocate.

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I couldn't speak a coherent sentence.

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My husband had no idea what I was saying,
and I didn't recognize my own family.

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I was so incredibly unwell.

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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
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955
01:08:29,055 --> 01:08:33,314
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956
01:08:33,314 --> 01:08:35,265
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957
01:08:35,385 --> 01:08:39,015
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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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960
01:08:45,075 --> 01:08:46,814
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961
01:08:47,115 --> 01:08:48,465
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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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