Waiting To Exhale.

WEBVTT - This file has cues.

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Hey, how's it going?
You can be honest with me.

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This is a safe space.

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Have you heard of life quakes?
Well, in this podcast,

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we talk about life quakes,
those unpredictable seismic shifts

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that in time, lead to profound
personal growth and empowerment.

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Through this season, you can
expect heartfelt conversations

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that reveal both the joy and
discomfort of unexpected change.

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And I think you're going to like
it here.

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My name is Sean,
and this is something shifted.

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Today's story belongs to Tanya.
Where I am now is being listed

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for my second double.
I'm transplant. That's next.

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I lead a demanding lifestyle and I'm
very guilty of wanting more for less,

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especially when it comes to food.
I want to feel like I'm eating

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restaurant food, but I don't want to
leave my house and I really don't

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want to organize a babysitter.
I want to try new flavors,

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but I also don't want to spend
money on ingredients that I

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might never use again.
And let's be honest, I don't want to

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eat the same thing over and over,
but I really don't have time to

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think about what we're going to
eat for dinner every night.

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You know what I mean?
Well,

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you cook changed all of that for us.
We choose what we want to eat.

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And you cook delivers all of the
ingredients,

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perfectly portioned right to my door.
No more standing in queues to

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weigh my fresh produce.
No more impulse buys sneaking

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their way into my trolley.
You cook is always adding new recipes

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to choose from, and I've even
picked up some new skills thanks to

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those easy to follow recipe cards.
And because you cook, gives you

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exactly what you need for each
recipe. We never waste any food.

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You cook has been an absolute
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everything is just so simple.
I love the convenience.

00:02:05.750 --> 00:02:09.470
I love the variety and the
flexibility to go carb conscious

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meals for one week.
And then when Ru's folks come to

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stay, we might switch to fan
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The hardest part is deciding which of
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because everything on the
website looks amazing.

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Meal kits, frozen Croft's desserts,
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On average, we breathe in about
11,000l of air every day.

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That's a lot of breaths,
especially considering that the

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average lung capacity for a
healthy adult is about six litres.

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Air comes in, air grows out,
oxygen is absorbed,

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carbon dioxide is released.
This is the essence of breathing.

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And most of us do this naturally
without giving it a second thought.

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Did you know that by the time you
celebrate your 25th birthday,

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your lungs have fully matured?
And while lung capacity varies from

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person to person, a healthy adult
will have at least 80% lung capacity.

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But sometimes a body doesn't
develop along these milestones.

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Tanya has struggled to breathe
since the day she was born.

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And I was always in hospital.
Panorama hospital was my second home.

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Literally,
I would catch up with homework.

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Um, I'd go to school when I could.
I would go to school with a

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nebulizer.
I had this kind of a wheezing sound,

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like a hole.
And your kids can be cruel.

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I couldn't do sports,
but my parents made it,

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made it very comfortable for me.
Tanya suffered a meconium aspiration

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as a newborn and then multiple severe
viral infections during childhood.

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This left her with a severe
airflow limitation as well as

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chronic lung disease.
She was diagnosed with bronchiolitis,

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obliterates, and essentially the
narrowing of Tanya's airways just

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couldn't be reversed with medication.
I didn't think I was different.

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I just realized that my friends
could do more than what I could.

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I never really had what other
kids had.

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I could never run around or, um,
experience what my my friends

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experienced.
Tanya's parents did everything

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they could to help their three
children along in times of

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sickness and in health.
And fortunately for Tanya,

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her mom was also a nursing sister.
My mother kind of taught me how to

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deal with my with my condition.
If it weren't for her,

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I don't think I would have been
able to cope as well as what I have

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all these years with my disease.
You know, although they are

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still amazing parents.
Honestly, my mother never

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treated me any differently.
We were all treated the same.

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My brother, my sister, myself,
we were all treated the same.

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So I had a good childhood,
I really did, but I do think

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sometimes I kind of looked at my
brother or my sister and thought,

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sure, if they're going out tonight,
I wish that was me.

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But you get used to it, you know,
and you just get on with it.

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So that's what Tanya did.
She just got on with it.

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Considering her diagnosis and
years of health challenges,

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she got on with living her life,
all the while believing that she

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wouldn't ever find love.
That's until she met Sculk.

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We were always told we couldn't have
children. They got married in 2002.

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Because of violence.
And then at one point I went to

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my doctor and I said to him,
I need to have a child.

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I need as victor,
Minnesotans would be spoken

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about this and I'm like, I know,
but I think we should give it a go.

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And he's like, okay,
I'll give you three months.

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And I fell pregnant within those
three months. So it had to happen.

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I mean, it was definitely a miracle,
yo, I was admitted at 26 weeks and

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I lay on oxygen for seven weeks,
and Daniela was 33 weeks. Prim.

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Um, and she was in ICU for about
three and a half weeks.

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So, you know, it hasn't been easy,
but it's a miracle from God.

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It's my gift.
Um, and I'm very, very proud.

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In 2008, Tanya's dream of motherhood
came true, and she continued

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getting on with life in spite of
her decreasing lung capacity.

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I was used to battling.
I was used to not having a lung

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capacity that everybody else out
there had.

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But there was a point after
Daniel's birth that I was more in

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hospital than out of hospital.
And I remembered Doctor Johan Trehan.

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He's a Panorama pulmonologist.
He came and sat down with Scott

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myself and said, had we ever thought
of a double lung transplant?

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By 2017,
Tanya had only 14% lung capacity.

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Keep in mind that healthy adult
lungs hold six liters of air,

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and at this stage, Tanya's lungs had
a capacity of less than one liter.

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Since the early 1990s,
more than 25,000 lung

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transplants have been performed
at centers around the world,

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and almost 5000 lung transplants were
performed globally in 2017 alone.

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But a double lung transplant had
never been done in Africa.

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In February of 2017, Tanya's
uncle passed away that same year.

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Just a few months later, her brother
Mark died after a tragic accident.

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Can you imagine having to tell your
family, who've already lost so much

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in the space of one year, that you
need a bilateral lung transplant?

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And not only is this a high risk up,
it'll be the first operation of its

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kind to be carried out in a state
hospital on the African continent.

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We had so much to process because
we had to talk to my parents.

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We had to talk to Daniella.
She was only nine at the time.

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We had to talk to Scope's parents.
We came home, we Google it like,

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you know, we all do.
And the chances are and like

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Greg told us, with double and
transplantation, it's a 5050.

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But I knew that I had to fight
for my family, and I needed to

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fight for my little girl.
Um,

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and I needed to fight for my hubby.
And lastly, I really needed to

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fight for my parents.
And that was my only alternative.

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That was my only option.
That's all I could do.

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Transplant operations are always
high risk and come with long

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term consequences.
But thankfully, Tanya's double

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lung transplant went well.
I, for the first time,

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had a lung capacity of 85%.
So from 14% when I had my

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transplant to post-transplant 85%,
I thought this was amazing.

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I couldn't believe this is how you
people could breathe, and also the

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fact that you could actually do
things and not get short of breath.

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That for me was pure. It was amazing.
Um, and I looked at my hubby and I

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said to him, I don't ever want to
go into rejection because I don't

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ever want to go back to where I was.
And so Tanya got on with living

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life with lungs full of air.
I could stand on the side of the

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astro and shout and cheer and,
um, some of the parents would

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actually say, sure,
here's the mum with the big lungs.

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And I'd actually smile because
it's the first time that people

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could actually hear me, um,
shout and scream.

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And I was able to be a wife to
my husband, which I always felt

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I could never do 100%.
Um,

00:10:14.580 --> 00:10:18.090
I could be a daughter to my parents.
I if they were sick,

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I could help them out.
I could go out with friends and

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not worry about of moving sick.
Because if I get sick,

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Milan functions dropping.
The thing about life is there

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are no guarantees you might
survive one life, quake,

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rebuild and get on with it.
But that doesn't protect your

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foundations from being shaken to
the core again.

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I fell sick and when I got to
the hospital and I sat in front

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of the doctor and I said to him,
I can't breathe, I need oxygen.

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In December of 2023,
after six years of big, deep,

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life affirming breaths.
Tanya's biggest fear became a

00:10:57.810 --> 00:11:00.630
reality.
She was diagnosed with chronic

00:11:00.630 --> 00:11:04.630
rejection and at the time of
this recording in 2024,

00:11:04.630 --> 00:11:07.840
she's on the waiting list for her
second double lung transplant.

00:11:16.810 --> 00:11:20.980
Join my mailing list 321 shift for
inspiration and motivation straight

00:11:20.980 --> 00:11:24.520
to your inbox, and you can find
me on Instagram at Sean Lewis.

00:11:24.730 --> 00:11:28.270
Remember to share this episode with
someone you love and follow something

00:11:28.270 --> 00:11:32.440
shifted on your favorite podcast
player. Okay, back to the story.

00:11:36.700 --> 00:11:40.300
We all love a feel good story of
overcoming a challenge.

00:11:40.330 --> 00:11:44.470
We want the battle to be won.
Our hero deserves a break.

00:11:44.680 --> 00:11:48.100
But after beating her life
threatening illness, Tanya needs

00:11:48.100 --> 00:11:52.900
to get back into the ring, raise
her gloves and fight another round.

00:11:53.800 --> 00:11:58.540
Two years after my first transplant,
I was able to climb Lion's Head and I

00:11:58.540 --> 00:12:02.680
was smiling from ear to ear. Like me.
For now, I'm sitting here,

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so I'm breathing very nicely,
but the minute I start moving

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around I get very short of breath.
Yesterday, hubby was out on a meeting

00:12:10.910 --> 00:12:14.480
and I had to bring in a package and
I battled just to get the package

00:12:14.480 --> 00:12:18.230
from my front door to my kitchen
and I was completely out of it.

00:12:18.230 --> 00:12:20.630
And I'm going to I'm going to be
very honest with you.

00:12:20.960 --> 00:12:24.590
I took breathing also for
granted when I had my transplant

00:12:25.280 --> 00:12:28.100
because I was breathing.
I couldn't believe the way I was

00:12:28.100 --> 00:12:31.130
breathing.
And now all of a sudden I realized,

00:12:31.130 --> 00:12:34.070
sure.
Um, even someone like me that

00:12:34.070 --> 00:12:37.580
sparkled before took it for granted.
So I can understand why people

00:12:37.580 --> 00:12:41.390
do take it for granted.
Dealing with a chronic illness

00:12:41.390 --> 00:12:44.630
is never easy.
Any hospital visit,

00:12:44.630 --> 00:12:48.590
even for a scheduled procedure,
is a major stressor and

00:12:48.590 --> 00:12:52.940
completely disrupts your life.
Now, I imagine not knowing when

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this quake is going to hit you.
Tanya learned this during her

00:12:56.930 --> 00:13:02.600
first transplant.
You can get that call at any moment.

00:13:02.600 --> 00:13:06.930
So I think when you see the doctor's
number come up on your phone,

00:13:07.020 --> 00:13:10.350
you kind of know what that
call's all about.

00:13:10.800 --> 00:13:14.130
I got the call on a Sunday afternoon,
and I was told I had two hours

00:13:14.130 --> 00:13:16.980
to get to the hospital.
So you you don't really have

00:13:16.980 --> 00:13:18.900
much time to process it.
Um,

00:13:18.900 --> 00:13:23.910
and it's a very emotional feeling.
Um, I to for my parents,

00:13:24.900 --> 00:13:29.550
I different schools parents.
My parents came down to my house

00:13:29.790 --> 00:13:34.380
and helped me pack and we, uh,
went to the school.

00:13:34.860 --> 00:13:38.700
My, um,
organ donor was on a ventilator.

00:13:39.360 --> 00:13:42.900
So I was actually very lucky in
the fact that I had time to

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prepare myself in the hospital.
When I got there, the doctors had

00:13:46.050 --> 00:13:50.520
time to explain everything to us
again, explain everything to

00:13:50.520 --> 00:13:55.200
Daniella and my parents and skulk.
But it could happen.

00:13:55.200 --> 00:13:59.220
And it's obviously happened to a
lot of people that it happens

00:13:59.220 --> 00:14:02.640
within the first six hours of
that phone call, because lungs

00:14:02.640 --> 00:14:06.280
can only be on ice for six hours.
After that, they battled to

00:14:06.280 --> 00:14:09.340
start functioning again.
Once you know they transplant.

00:14:10.180 --> 00:14:15.460
Quite a few have passed away due
to rejection complications after

00:14:15.460 --> 00:14:21.130
surgery. You know, at like Prof.
Greg Caligari always tells us

00:14:21.460 --> 00:14:25.270
and they have to be so upfront.
They have to be they have to be

00:14:25.270 --> 00:14:27.610
honest with you and they have to
tell you like it is.

00:14:27.730 --> 00:14:32.320
There's a 5050 chance.
So you know that when you go in

00:14:32.320 --> 00:14:34.750
for the surgery,
but it's still a big shock.

00:14:34.750 --> 00:14:40.690
I mean, when I was told I have
chronic rejection, although Greg has

00:14:40.690 --> 00:14:46.150
warned us some you don't want to go
through as a transplant patient.

00:14:51.460 --> 00:14:54.460
Tanya finds herself back in this
weird waiting room,

00:14:54.670 --> 00:14:58.900
waiting for that life changing call.
That call that always means

00:14:58.900 --> 00:15:01.420
another family has suffered a
tremendous loss.

00:15:02.020 --> 00:15:06.870
And Tanya also knows the pain of that
loss Well, because when her brother

00:15:06.870 --> 00:15:12.060
passed away in 2017, they honored
his decision as an organ donor.

00:15:12.810 --> 00:15:15.480
I wouldn't be able to sit here
today with you and discuss it if

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it wasn't for my organ donor.
For a woman that's given a

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selfish gift.
She doesn't know me from a bar

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of soap, but she has given me
the best gift ever.

00:15:26.730 --> 00:15:30.150
And I think that's why I really
go out there and try and just

00:15:30.150 --> 00:15:32.640
help people understand about
organ donor awareness.

00:15:32.640 --> 00:15:37.080
And I know it's a very sensitive
topic because a lot of people will be

00:15:37.080 --> 00:15:43.110
like, oh no, I'm not going to let
them cut up my loved ones body or but

00:15:43.110 --> 00:15:47.460
they do it in such a dignified way.
And I really I can vouch for

00:15:47.460 --> 00:15:51.330
that because my brother was an
organ donor.

00:15:51.630 --> 00:15:58.770
I, I think I just needed comfort,
I needed closure, I needed to

00:15:58.770 --> 00:16:02.790
see his body once he passed.
And unfortunately,

00:16:02.790 --> 00:16:05.800
with the way monkey fell,
he couldn't give any organs.

00:16:06.700 --> 00:16:10.390
Um, so he was able to donate tissue,
but he was able to help 26

00:16:10.390 --> 00:16:13.930
people by just giving tissue.
Tissue meaning heart valves,

00:16:13.930 --> 00:16:19.090
skin, corneas, tendons, muscle.
And when I saw him, Sean,

00:16:19.690 --> 00:16:22.120
they had already taken what they
could from above.

00:16:22.870 --> 00:16:28.030
It looked as though he was just
asleep. You know, this perfect being.

00:16:28.030 --> 00:16:30.970
Just sleeping.
So that's why I can really, honestly

00:16:30.970 --> 00:16:36.820
say that they do it in a really
respectful and dignified manner.

00:16:37.090 --> 00:16:39.730
Um, it's not what people think
about cutting up the body.

00:16:39.730 --> 00:16:45.040
It's not like that at all.
You can help up to 50 people by

00:16:45.040 --> 00:16:49.570
just giving tissue,
and you can save up to seven people,

00:16:49.570 --> 00:16:53.560
but just donate the organs.
So I mean, it's lungs, it's pancreas,

00:16:53.560 --> 00:16:57.280
it's liver, it heart, it kidneys.
And I mean, some of those,

00:16:57.280 --> 00:16:59.920
you know, kidneys your sibling
could give you you know,

00:16:59.920 --> 00:17:04.270
you don't necessarily have to pause.
I just think I've I've just got

00:17:04.270 --> 00:17:08.120
this passion that I just want
people to know how amazing we as

00:17:08.120 --> 00:17:11.480
recipients find us.
Um, and we just would like

00:17:11.480 --> 00:17:14.510
people to think about it.
Just think about it a little more.

00:17:15.170 --> 00:17:19.460
Tanya has used the gifts she's
been given to pay it forward and

00:17:19.460 --> 00:17:22.610
help others who have to face the
challenges of living with a

00:17:22.610 --> 00:17:27.740
transplant.
The reason why I try and go out

00:17:27.740 --> 00:17:31.670
there and talk about organ donation,
um, is because not enough is

00:17:31.670 --> 00:17:36.110
being said about organ donation.
So much has been said about the

00:17:36.110 --> 00:17:40.220
blood drive.
Um, nobody really knows what

00:17:40.220 --> 00:17:43.430
organ donation involves.
Like I said, I know it's a sensitive

00:17:43.430 --> 00:17:50.000
subject. I really do know that.
Um, and then I, I try and get

00:17:50.000 --> 00:17:54.440
funding for healthcare, and I'm
not doing that for the hospital.

00:17:54.530 --> 00:17:58.100
I'm doing it merely for the
patients because we have a lot

00:17:58.100 --> 00:18:02.390
of expenses after surgery.
We go see our doctor twice a

00:18:02.390 --> 00:18:06.360
week for the first month,
and we have a blood test and

00:18:06.360 --> 00:18:11.910
probably every second or third day.
Medication is insane, and I feel

00:18:11.910 --> 00:18:16.200
that when you've had such a big
operation and you're lying in ICU,

00:18:16.320 --> 00:18:21.720
you need to fight, and the only way
you're going to fight is if you

00:18:21.720 --> 00:18:26.490
have your loved ones around you.
So if I can get money in to fly

00:18:26.490 --> 00:18:30.420
those loved ones down from wherever
they are to be with a person lying

00:18:30.420 --> 00:18:34.230
in ICU fighting for their life,
then I think that's a huge

00:18:34.230 --> 00:18:36.810
accomplishment in itself.
And then we need to find

00:18:36.810 --> 00:18:40.020
accommodation for those people.
They need food.

00:18:40.350 --> 00:18:43.110
Um, and the patients after
transplant as well.

00:18:43.110 --> 00:18:46.530
Like I say, we see the doctor
twice a week for the first month.

00:18:46.530 --> 00:18:50.490
So those patients need accommodation.
They need food.

00:18:50.520 --> 00:18:55.140
A lot of them can't go back to work.
Um, because our immune systems

00:18:55.140 --> 00:18:59.040
are so compromised.
The immune suppressants or hectic,

00:18:59.040 --> 00:19:01.950
um, we are medication for the
rest of our lives.

00:19:02.400 --> 00:19:06.220
We have bloodstone every 3 to 4
weeks for the rest of our lives.

00:19:06.550 --> 00:19:12.010
So I try and raise funds for the
kids heart and lung transplant

00:19:12.010 --> 00:19:15.400
unit for patients.
I think because I've realized how

00:19:15.400 --> 00:19:19.990
life changing it is to have a
transplant, to be able to do things

00:19:20.080 --> 00:19:24.340
that I was never able to do before.
And that's what's encouraging for me.

00:19:25.240 --> 00:19:29.740
So while Tanya waits for a call,
a call to say that they're ready

00:19:29.740 --> 00:19:33.190
to do another transplant,
which comes with all the risks

00:19:33.190 --> 00:19:38.470
and the 50% survival rate, she's
grateful for every single breath.

00:19:39.130 --> 00:19:46.750
I cannot thank my organ donor enough.
Because this woman that I'm able

00:19:46.750 --> 00:19:52.630
to watch my daughter grow up and
watch my family and be with my

00:19:52.630 --> 00:19:55.000
family every day.
You know, I think a lot of people

00:19:55.000 --> 00:20:00.340
get up every morning and they
take it for granted, but I don't

00:20:00.340 --> 00:20:06.050
I get up every morning and thank
my woman donor and I, you know,

00:20:06.050 --> 00:20:11.270
we had to write a letter to our
donor's families and say thank you.

00:20:13.460 --> 00:20:18.380
How do you think someone for losing a
loved one so that you might be saved?

00:20:18.380 --> 00:20:20.360
And I think that was the hardest
thing for me to do.

00:20:21.320 --> 00:20:25.760
Over and above the organ donation.
Tanya also received the gift of

00:20:25.760 --> 00:20:29.960
watching her daughter grow up,
and of all the experiences in her

00:20:29.960 --> 00:20:35.150
life, this is her greatest joy.
I think every parent thinks the

00:20:35.150 --> 00:20:38.270
kid is amazing,
but I really think I've got an

00:20:38.270 --> 00:20:44.990
amazing daughter. Um. She's 16.
She's been through so much, yet she's

00:20:44.990 --> 00:20:49.880
still so resilient and she's got a
heart of gold and she's empathetic.

00:20:49.880 --> 00:20:53.180
And Sean,
she's just been absolutely amazing

00:20:53.180 --> 00:20:56.780
with how she's handled everything.
I think you know that that is my

00:20:56.780 --> 00:20:59.300
proudest thing in life is,
is my daughter.

00:21:03.170 --> 00:21:06.610
My mom would always say to me,
Tonya, don't get your illness

00:21:06.610 --> 00:21:10.570
define you as a person. Fight.
And I've always fought.

00:21:15.490 --> 00:21:18.610
At the time of publishing.
Tanya Bothma is still waiting to

00:21:18.610 --> 00:21:22.900
be matched with an organ donor.
Tanya is currently raising money

00:21:22.900 --> 00:21:26.200
through back a buddy to support other
transplant patients with increased

00:21:26.380 --> 00:21:30.460
need, and continue creating awareness
around organ and tissue donation.

00:21:30.730 --> 00:21:33.970
You can support the work that
Tanya is doing by visiting the

00:21:33.970 --> 00:21:37.300
back of Buddy page.
The link is in the show notes.

00:21:39.280 --> 00:21:42.010
On the bottom of my lungs.
A very big thank you.

00:21:45.670 --> 00:21:48.250
Thank you for listening to this
episode of Something Shifted.

00:21:48.250 --> 00:21:52.810
And remember to use that code hash
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That's the hash symbol,

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00:22:21.140 --> 00:22:24.680
Thanks so much for listening and
a very big thank you to my

00:22:24.680 --> 00:22:29.180
executive producer, Rwanda Lewis.
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00:22:52.880 --> 00:22:56.120
Show notes.
Thanks again for believing in

00:22:56.120 --> 00:22:59.240
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My name is Shawn and this is

00:22:59.240 --> 00:23:02.900
something shifted.
See you in two weeks. Bye.