May 22, 2024 • 17 mins
Nora is a mother-of-four who lives with kidney failure. She spoke with Frances at her chairside while receiving renal dialysis treatment as an outpatient. Nora comes to hospital three times a week for the life-saving treatment and talks about how she juggles her health care with being a mother and a wife whilst also working. Nora shares her Cook Islands culture and faith in God, and how she chooses to live with gratitude. Nora talks about how she is kind to nurses, and they are kind to her in return.
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Episode Transcript
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(00:00):
Music.
(00:07):
Inside Stories from NSW Health Podcast.
I'm your host Frances Wood. Today I'm bringing you a very special conversation I had with Nora.
Music.
Nora is from the Cook Islands and she lives here in Australia with kidney failure.
I spoke to Nora beside her chair while she had her kidney dialysis treatment as an outpatient.
(00:33):
I'm deeply grateful to Nora for sharing her lived experiences and wisdom with me.
Now Nora does talk about what it's like living with kidney failure,
being pregnant on renal dialysis and having nurses access her fistula which
is a connection made between her artery and vein for dialysis access.
(00:56):
Now you may actually hear the slight whirring of Nora's dialysis machine,
working its magic and cleaning her blood in the background to our conversation.
Of course, as always, please be kind to yourself.
If these topics are likely to bring up some uncomfortable feelings in you,
(01:16):
it's absolutely okay to skip this episode and choose another conversation to listen to.
For those of you staying with us, I just know that you're going to be so touched
by Nora's perspectives and experiences of kindness in health.
Let's get started. What brings you to hospital?
I'm here for dialysis. So for people who may not know what dialysis is,
(01:42):
how would you explain it?
Dialysis is like being hooked up on a machine for five hours and it cleans your
blood and it makes you feel better.
And so you need dialysis because you're someone that lives with kidney failure, is that right?
Yeah, I do dialysis.
(02:03):
What's sort of your mindset while you're here in hospital for those five hours
having your blood cleaned?
I come here every morning, set myself up, and then the nurse put me on.
And every morning I always do my Bible reading, first of the day.
Yeah, you code this year.
And do you find that having that faith, has that helped you with how you approach
(02:29):
living with kidney failure?
You yeah when i come to the clinic i
don't think about coming to the clinic like a
burden yeah and then it like
keeping me healthy still alive always give
thanks to god you have that mindset of
gratitude and then you feel better after having
(02:49):
dialysis yeah and i believe it's all
because god put these people here and so
you're here with us three days a week what's life
like for you outside of hospital i work full
time i go to work the clinic always works around you my shift is like afternoon
or night yeah so i come here in the morning get dialysis and then go home have
(03:17):
a little bit of rest and go to work wow and you were telling
me before we started chatting that you're also a mom before.
Yeah, from children to the older girls.
I had them before I got my kidney failure, and I was blessed to have them. And then I had two boys.
(03:40):
At four years old, we adopted him, and I have my other son.
I fell pregnant on dialysis. We spoke about that pregnancy being quite remarkable,
but also a bit frightening.
Yeah, it was because Dobson always encourages me not to.
(04:01):
And that's because it's very risky for your health? It's risky and it can't be done.
No one has ever got pregnant while having dialysis.
I got pregnant in 2014.
And there was a really beautiful moment you shared with me before we started
talking about when your doctor told you the news that you were pregnant?
(04:24):
Yeah, I can't forget that moment.
I met him downstairs in the car park. Everything I tell the doctor,
it's always like a concern for him.
He puts it like first priority or something, yeah.
And he always makes sure it gets done.
And then that morning I came and I saw the doctor.
(04:45):
I just said it out to him like, I haven't had my period for like three months now.
And he goes, always tells me, you're not pregnant, are you?
And I said, no, I'm not pregnant. But anyway, we came up here and he asked the
nurse, do you have a pregnancy test?
Four hours later, he came and sat next to me. I was over there.
(05:09):
And he went quiet.
He just said, you're pregnant and you're like eight weeks.
I was grateful because in the past, he said that it can't be done.
But I've already made up my mind. For me, it can be done.
Yes. And if I have to choose between me and my baby, it has to be my baby.
(05:33):
Oh, it's not the right time, but according to God, it's the right time.
And I have to believe that he blessed me with a boy, not in the right time with
my health, but according to his time, it's the right time.
Yeah. And I have to believe that. And in that moment, you had a doctor that
(05:56):
supported you with that, knowing what the risks were, but supported you with what you wanted.
Yeah, he said, it can be done. To me, I believe it can be done.
And the team here at hospital went on that journey with you.
And I think you were saying that you had to have dialysis every day.
I argue with my doctor. yeah he
(06:19):
said to for me to have dialysis seven
days a week but i said no i don't want seven days a week because i want my sunday
so that i can just stay home yeah and relax he said yeah okay then he was his
hesitate to do that to give that to me about and you had a beautiful son you
(06:40):
you got through the pregnancy.
During the journey, no one knew really what to do with me.
We actually work on the care plan every day, like daily as I come in and they
check on me and everything.
I was like showing them how to plan my care plan.
(07:03):
It's amazing, isn't it? And the nurse unit manager was telling me,
and you mentioned that after your pregnancy, there has been some other women
that have had pregnancies on diagnosis.
Yeah, there was another girl who got pregnant two years after that.
And then there was another girl, because whenever they place someone next to
(07:26):
me, and then I have to get to know the person.
And then just then slowly, like, what do you hear, Paul?
Yeah and you build that trust and rapport
they might choose to share that with you yeah
and they did because you know you don't just ask
straight away you gotta get to know them and then
i have to share my story to them and that gives them the confidence to keep
(07:51):
going with the pregnancy and you know just on that spend three days a week here
do you build those connections and friendships with the other patients and the staff?
Yeah, the nurses are like families here and the nurses are nice there.
My nurse today, we worked together for a couple of years in aged care and we joke and everything.
(08:17):
That's a special thing. Yeah. And how do you cope with patients that maybe you've
built friendships with passing away, because it is a reality when living with renal dialysis.
Yeah. I work in an industry where you see people just pass away.
(08:39):
And you learn not to get too emotional with that and the family.
So when that happens, of course you get worried.
And then I think, oh, well, at least they're not in pain anymore.
I always say a little prayer.
And it's walking that line, isn't it, between having empathy and caring,
(09:01):
but not taking that on yourself because you're walking your own journey.
Yeah. It's really remarkable how you do that.
And it seems that, you know, your faith and your personal belief system is and
probably your family and your culture.
Part of that would you say our culture is friendly
(09:22):
it has to do with my faith
in god yeah you read the bible commit everything
in god's hand when i come here yeah and he does everything do you feel where
respectful embrace those spiritual beliefs i keep that to myself yeah because
not so you have I have to respect the fact that not some nurses are like me.
(09:48):
Yeah. They have the faith. But if they ask me, I share.
The staff and patients here all have different beliefs, and that's something that's personal to you.
But if asked, you're happy to share.
Yeah, if asked. That's beautiful. Yeah. Yeah. With my pregnancy, I was working full time.
(10:10):
I was doing night shift then. Wow. And then from night shift,
I come straight here to five hours, six days a week and go home, repeat.
Are you able to sleep while you're here having dialysis?
Yeah, I sleep. Yeah, you get to sleep.
(10:32):
And so would you say you feel more energized after having dialysis?
Yeah, definitely. You feel better. But I looked at this like my second job,
except we don't get paid money.
It's your health. Yeah, it's my health.
It's making me healthy, like so you can continue on for the day.
(10:59):
Yeah. Nora, this podcast is all about understanding each other a little bit
better and learning how we can connect and be kinder in health and look on the
kind side because obviously being here can be a challenging experience.
Is there something that you've observed or experienced that you felt was kind
(11:20):
that you'd be able to share with us?
My fistula, it's a very challenging fistula.
Not all the nurses can put me on, especially when I was still new.
It's frustrated when new nurses come and put me on and they can't get it but
(11:41):
then you learn not to show it because if you show it to them they'll get frustrated
themselves and they already like.
Frustrated for not getting my needle in. Yes.
I'm always saying, it's okay, you can do it. We can do it. We can do it.
(12:02):
And then because I know my fistula and I guide them sometimes.
That's a beautiful act of kindness that you're doing to our student nurses.
So instead of feeling frustrated, you're supporting and encouraging them.
So for healthcare workers listening that's a
really good insight not to be embarrassed if
(12:23):
you're new to something and you're learning but to maybe have
that conversation with the patient and say hi you know
this is my first time or you know I'm developing and I'm gonna do my best but
if there's anything you can tell me that would make it easier or less painful
for you please you know I'd love to hear that yeah I always say it's all right
(12:43):
we'll get through it yeah we can do it you You know,
it's something I hear a lot when talking with patients.
I think we feel like we're the ones caring and providing reassurance to patients.
But so often it's the patients providing the kindness and the caring and the
reassurance to our staff. It's just a beautiful thing.
And Nora, what's something that you do to be kind to yourself,
(13:07):
to look after yourself or nurture yourself?
You're obviously, you know, a busy working mum of four. Is there something small
that you do just to take care of yourself?
Yeah, I tend to spoil myself.
I don't usually because I'm always making sure like the family's all right.
(13:28):
Yeah, my husband. I'm always grateful that I'm still here and I've still got
my husband and I've still got my kids.
And then when I'm here, I'm grateful. Cool.
That I have these people looking after me and the doctors. You get full morning tea.
Like, who gets that for free? So it sounds like the way you're kind to yourself
(13:51):
is to live that gratefulness and keep your mind set in that grateful space.
Yeah. And if there was one thing we could do for you here in hospital to be
kind that you would appreciate, what would that one thing be? be. Give me a chance.
To get a chance. Yeah. But I don't look, I, of course you look forward to it,
(14:16):
but it's not like a big thing for me. Yeah.
But that would be nice. That would be amazing. Yeah.
I believe that, like I said, it's my fate.
And I always believe that it will be, it's soon.
Yeah. It's coming soon. Coming soon. Yeah. It's on its way.
And i think um you know for our listeners it
(14:38):
sounds like if they could take one thing away from this
conversation would you say it's to
take that grateful mindset and try and
carry that with them yeah grateful for
the little things yeah every day you gotta be grateful i think that's a really
nice way to conclude our conversation nora i'm so grateful for you to have me
(15:01):
sitting here with you while you have dialysis in hospital and having this talk
so that we can learn and be kinder.
Well, thank you for joining us on the kind side.
Wow. Well, what a special conversation that was with Nora.
I'm so grateful that she was willing to share her lived experience and her wisdom with us.
(15:24):
I think it was really interesting to hear her her perspectives on her faith
and how she moves through life with that acceptance and gratitude.
I'd just like to invite you to take a moment to reflect on whether there was
something from that conversation that's going to stay with you,
(15:45):
how you can be kinder to yourself and how you can be kinder to those around
you, especially in health,
which we know can be a challenging environment.
For many people. Thank you as always for joining us on the kind side and I hope
to be with you again soon.
(16:06):
If you feel like you need to talk after listening to this episode please reach out and speak.
Music.
Music.
(00:07):
Inside Stories from NSW Health Podcast.
I'm your host Frances Wood. Today I'm bringing you a very special conversation I had with Nora.
Music.
Nora is from the Cook Islands and she lives here in Australia with kidney failure.
I spoke to Nora beside her chair while she had her kidney dialysis treatment as an outpatient.
(00:33):
I'm deeply grateful to Nora for sharing her lived experiences and wisdom with me.
Now Nora does talk about what it's like living with kidney failure,
being pregnant on renal dialysis and having nurses access her fistula which
is a connection made between her artery and vein for dialysis access.
(00:56):
Now you may actually hear the slight whirring of Nora's dialysis machine,
working its magic and cleaning her blood in the background to our conversation.
Of course, as always, please be kind to yourself.
If these topics are likely to bring up some uncomfortable feelings in you,
(01:16):
it's absolutely okay to skip this episode and choose another conversation to listen to.
For those of you staying with us, I just know that you're going to be so touched
by Nora's perspectives and experiences of kindness in health.
Let's get started. What brings you to hospital?
I'm here for dialysis. So for people who may not know what dialysis is,
(01:42):
how would you explain it?
Dialysis is like being hooked up on a machine for five hours and it cleans your
blood and it makes you feel better.
And so you need dialysis because you're someone that lives with kidney failure, is that right?
Yeah, I do dialysis.
(02:03):
What's sort of your mindset while you're here in hospital for those five hours
having your blood cleaned?
I come here every morning, set myself up, and then the nurse put me on.
And every morning I always do my Bible reading, first of the day.
Yeah, you code this year.
And do you find that having that faith, has that helped you with how you approach
(02:29):
living with kidney failure?
You yeah when i come to the clinic i
don't think about coming to the clinic like a
burden yeah and then it like
keeping me healthy still alive always give
thanks to god you have that mindset of
gratitude and then you feel better after having
(02:49):
dialysis yeah and i believe it's all
because god put these people here and so
you're here with us three days a week what's life
like for you outside of hospital i work full
time i go to work the clinic always works around you my shift is like afternoon
or night yeah so i come here in the morning get dialysis and then go home have
(03:17):
a little bit of rest and go to work wow and you were telling
me before we started chatting that you're also a mom before.
Yeah, from children to the older girls.
I had them before I got my kidney failure, and I was blessed to have them. And then I had two boys.
(03:40):
At four years old, we adopted him, and I have my other son.
I fell pregnant on dialysis. We spoke about that pregnancy being quite remarkable,
but also a bit frightening.
Yeah, it was because Dobson always encourages me not to.
(04:01):
And that's because it's very risky for your health? It's risky and it can't be done.
No one has ever got pregnant while having dialysis.
I got pregnant in 2014.
And there was a really beautiful moment you shared with me before we started
talking about when your doctor told you the news that you were pregnant?
(04:24):
Yeah, I can't forget that moment.
I met him downstairs in the car park. Everything I tell the doctor,
it's always like a concern for him.
He puts it like first priority or something, yeah.
And he always makes sure it gets done.
And then that morning I came and I saw the doctor.
(04:45):
I just said it out to him like, I haven't had my period for like three months now.
And he goes, always tells me, you're not pregnant, are you?
And I said, no, I'm not pregnant. But anyway, we came up here and he asked the
nurse, do you have a pregnancy test?
Four hours later, he came and sat next to me. I was over there.
(05:09):
And he went quiet.
He just said, you're pregnant and you're like eight weeks.
I was grateful because in the past, he said that it can't be done.
But I've already made up my mind. For me, it can be done.
Yes. And if I have to choose between me and my baby, it has to be my baby.
(05:33):
Oh, it's not the right time, but according to God, it's the right time.
And I have to believe that he blessed me with a boy, not in the right time with
my health, but according to his time, it's the right time.
Yeah. And I have to believe that. And in that moment, you had a doctor that
(05:56):
supported you with that, knowing what the risks were, but supported you with what you wanted.
Yeah, he said, it can be done. To me, I believe it can be done.
And the team here at hospital went on that journey with you.
And I think you were saying that you had to have dialysis every day.
I argue with my doctor. yeah he
(06:19):
said to for me to have dialysis seven
days a week but i said no i don't want seven days a week because i want my sunday
so that i can just stay home yeah and relax he said yeah okay then he was his
hesitate to do that to give that to me about and you had a beautiful son you
(06:40):
you got through the pregnancy.
During the journey, no one knew really what to do with me.
We actually work on the care plan every day, like daily as I come in and they
check on me and everything.
I was like showing them how to plan my care plan.
(07:03):
It's amazing, isn't it? And the nurse unit manager was telling me,
and you mentioned that after your pregnancy, there has been some other women
that have had pregnancies on diagnosis.
Yeah, there was another girl who got pregnant two years after that.
And then there was another girl, because whenever they place someone next to
(07:26):
me, and then I have to get to know the person.
And then just then slowly, like, what do you hear, Paul?
Yeah and you build that trust and rapport
they might choose to share that with you yeah
and they did because you know you don't just ask
straight away you gotta get to know them and then
i have to share my story to them and that gives them the confidence to keep
(07:51):
going with the pregnancy and you know just on that spend three days a week here
do you build those connections and friendships with the other patients and the staff?
Yeah, the nurses are like families here and the nurses are nice there.
My nurse today, we worked together for a couple of years in aged care and we joke and everything.
(08:17):
That's a special thing. Yeah. And how do you cope with patients that maybe you've
built friendships with passing away, because it is a reality when living with renal dialysis.
Yeah. I work in an industry where you see people just pass away.
(08:39):
And you learn not to get too emotional with that and the family.
So when that happens, of course you get worried.
And then I think, oh, well, at least they're not in pain anymore.
I always say a little prayer.
And it's walking that line, isn't it, between having empathy and caring,
(09:01):
but not taking that on yourself because you're walking your own journey.
Yeah. It's really remarkable how you do that.
And it seems that, you know, your faith and your personal belief system is and
probably your family and your culture.
Part of that would you say our culture is friendly
(09:22):
it has to do with my faith
in god yeah you read the bible commit everything
in god's hand when i come here yeah and he does everything do you feel where
respectful embrace those spiritual beliefs i keep that to myself yeah because
not so you have I have to respect the fact that not some nurses are like me.
(09:48):
Yeah. They have the faith. But if they ask me, I share.
The staff and patients here all have different beliefs, and that's something that's personal to you.
But if asked, you're happy to share.
Yeah, if asked. That's beautiful. Yeah. Yeah. With my pregnancy, I was working full time.
(10:10):
I was doing night shift then. Wow. And then from night shift,
I come straight here to five hours, six days a week and go home, repeat.
Are you able to sleep while you're here having dialysis?
Yeah, I sleep. Yeah, you get to sleep.
(10:32):
And so would you say you feel more energized after having dialysis?
Yeah, definitely. You feel better. But I looked at this like my second job,
except we don't get paid money.
It's your health. Yeah, it's my health.
It's making me healthy, like so you can continue on for the day.
(10:59):
Yeah. Nora, this podcast is all about understanding each other a little bit
better and learning how we can connect and be kinder in health and look on the
kind side because obviously being here can be a challenging experience.
Is there something that you've observed or experienced that you felt was kind
(11:20):
that you'd be able to share with us?
My fistula, it's a very challenging fistula.
Not all the nurses can put me on, especially when I was still new.
It's frustrated when new nurses come and put me on and they can't get it but
(11:41):
then you learn not to show it because if you show it to them they'll get frustrated
themselves and they already like.
Frustrated for not getting my needle in. Yes.
I'm always saying, it's okay, you can do it. We can do it. We can do it.
(12:02):
And then because I know my fistula and I guide them sometimes.
That's a beautiful act of kindness that you're doing to our student nurses.
So instead of feeling frustrated, you're supporting and encouraging them.
So for healthcare workers listening that's a
really good insight not to be embarrassed if
(12:23):
you're new to something and you're learning but to maybe have
that conversation with the patient and say hi you know
this is my first time or you know I'm developing and I'm gonna do my best but
if there's anything you can tell me that would make it easier or less painful
for you please you know I'd love to hear that yeah I always say it's all right
(12:43):
we'll get through it yeah we can do it you You know,
it's something I hear a lot when talking with patients.
I think we feel like we're the ones caring and providing reassurance to patients.
But so often it's the patients providing the kindness and the caring and the
reassurance to our staff. It's just a beautiful thing.
And Nora, what's something that you do to be kind to yourself,
(13:07):
to look after yourself or nurture yourself?
You're obviously, you know, a busy working mum of four. Is there something small
that you do just to take care of yourself?
Yeah, I tend to spoil myself.
I don't usually because I'm always making sure like the family's all right.
(13:28):
Yeah, my husband. I'm always grateful that I'm still here and I've still got
my husband and I've still got my kids.
And then when I'm here, I'm grateful. Cool.
That I have these people looking after me and the doctors. You get full morning tea.
Like, who gets that for free? So it sounds like the way you're kind to yourself
(13:51):
is to live that gratefulness and keep your mind set in that grateful space.
Yeah. And if there was one thing we could do for you here in hospital to be
kind that you would appreciate, what would that one thing be? be. Give me a chance.
To get a chance. Yeah. But I don't look, I, of course you look forward to it,
(14:16):
but it's not like a big thing for me. Yeah.
But that would be nice. That would be amazing. Yeah.
I believe that, like I said, it's my fate.
And I always believe that it will be, it's soon.
Yeah. It's coming soon. Coming soon. Yeah. It's on its way.
And i think um you know for our listeners it
(14:38):
sounds like if they could take one thing away from this
conversation would you say it's to
take that grateful mindset and try and
carry that with them yeah grateful for
the little things yeah every day you gotta be grateful i think that's a really
nice way to conclude our conversation nora i'm so grateful for you to have me
(15:01):
sitting here with you while you have dialysis in hospital and having this talk
so that we can learn and be kinder.
Well, thank you for joining us on the kind side.
Wow. Well, what a special conversation that was with Nora.
I'm so grateful that she was willing to share her lived experience and her wisdom with us.
(15:24):
I think it was really interesting to hear her her perspectives on her faith
and how she moves through life with that acceptance and gratitude.
I'd just like to invite you to take a moment to reflect on whether there was
something from that conversation that's going to stay with you,
(15:45):
how you can be kinder to yourself and how you can be kinder to those around
you, especially in health,
which we know can be a challenging environment.
For many people. Thank you as always for joining us on the kind side and I hope
to be with you again soon.
(16:06):
If you feel like you need to talk after listening to this episode please reach out and speak.
Music.
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