thank you so it’s really great to be back at the bigger better and more
back at the bigger better and more
back at the bigger better and more exciting TEDx having been a participant
exciting TEDx having been a participant
exciting TEDx having been a participant in the first EDX two years ago and it
in the first EDX two years ago and it
in the first EDX two years ago and it was actually an accidental TEDx talk on
was actually an accidental TEDx talk on
was actually an accidental TEDx talk on my part because I stood in 12 hours
my part because I stood in 12 hours
my part because I stood in 12 hours before the event because another speaker
before the event because another speaker
before the event because another speaker had actually dropped out and I think
had actually dropped out and I think
had actually dropped out and I think that was a bit of a it was actually
that was a bit of a it was actually
that was a bit of a it was actually quite easy for me because when you stand
quite easy for me because when you stand
quite easy for me because when you stand in with 12 hours to go you can only wing
in with 12 hours to go you can only wing
in with 12 hours to go you can only wing it and winging it I’m quite happy doing
it and winging it I’m quite happy doing
it and winging it I’m quite happy doing when you have several months to prepare
when you have several months to prepare
when you have several months to prepare you think oh I have to really think
you think oh I have to really think
you think oh I have to really think about what I’m going to say my
about what I’m going to say my
about what I’m going to say my preparation for the first talk was
preparation for the first talk was
preparation for the first talk was basically what am I going to wear and
basically what am I going to wear and
basically what am I going to wear and for this talk I’m thinking what am I
for this talk I’m thinking what am I
for this talk I’m thinking what am I going to say now because I said it all
going to say now because I said it all
going to say now because I said it all before um but anyway I’m as as Chris
before um but anyway I’m as as Chris
before um but anyway I’m as as Chris mentioned I am I am a self-appointed
mentioned I am I am a self-appointed
mentioned I am I am a self-appointed queen of dialysis I like to roll my
queen of dialysis I like to roll my
queen of dialysis I like to roll my dialysis machine I went into kidney
dialysis machine I went into kidney
dialysis machine I went into kidney failure when I was 14 years old which is
failure when I was 14 years old which is
failure when I was 14 years old which is nineteen years ago now and I can’t have
nineteen years ago now and I can’t have
nineteen years ago now and I can’t have a kidney transplant so I live and
a kidney transplant so I live and
a kidney transplant so I live and survive by dilating myself on this
survive by dilating myself on this
survive by dilating myself on this beautiful huge dialysis machine pretty
beautiful huge dialysis machine pretty
beautiful huge dialysis machine pretty much every night at home overnight while
much every night at home overnight while
much every night at home overnight while I sleep carefully supervised by Archie
I sleep carefully supervised by Archie
I sleep carefully supervised by Archie the cat um in my previous talk I’m not
the cat um in my previous talk I’m not
the cat um in my previous talk I’m not going to obviously cover it again but I
going to obviously cover it again but I
going to obviously cover it again but I talked about the fact that for many
talked about the fact that for many
talked about the fact that for many dialysis patients kidney disease is
dialysis patients kidney disease is
dialysis patients kidney disease is really really tough when your kidneys
really really tough when your kidneys
really really tough when your kidneys fail it isn’t just that your body can no
fail it isn’t just that your body can no
fail it isn’t just that your body can no longer clean the blood and actually
longer clean the blood and actually
longer clean the blood and actually remove toxins to keep that you know the
remove toxins to keep that you know the
remove toxins to keep that you know the kidneys keep you alive but it’s not just
kidneys keep you alive but it’s not just
kidneys keep you alive but it’s not just that your kidneys interact with all the
that your kidneys interact with all the
that your kidneys interact with all the systems and all the organs in your body
systems and all the organs in your body
systems and all the organs in your body so they affect your bones they affect
so they affect your bones they affect
so they affect your bones they affect your brain your memory your
your brain your memory your
your brain your memory your concentration they affect your digestion
concentration they affect your digestion
concentration they affect your digestion they affect your joints they massively
they affect your joints they massively
they affect your joints they massively affect your energy so people with kidney
affect your energy so people with kidney
affect your energy so people with kidney disease are chronically fatigued and and
disease are chronically fatigued and and
disease are chronically fatigued and and yet they don’t look ill and that’s one
yet they don’t look ill and that’s one
yet they don’t look ill and that’s one of the challenges and actually when I
of the challenges and actually when I
of the challenges and actually when I spoke at the original TED conference I
spoke at the original TED conference I
spoke at the original TED conference I talked about how lucky I am to do my
talked about how lucky I am to do my
talked about how lucky I am to do my dialysis at home and to be able to do
dialysis at home and to be able to do
dialysis at home and to be able to do six or seven hours every
six or seven hours every
six or seven hours every night as compared to the people who have
night as compared to the people who have
night as compared to the people who have to go to hospital and they can only do
to go to hospital and they can only do
to go to hospital and they can only do four hours three times a week so that’s
four hours three times a week so that’s
four hours three times a week so that’s having some level of kidney function for
having some level of kidney function for
having some level of kidney function for four hours three times a week the rest
four hours three times a week the rest
four hours three times a week the rest of the time their body is just
of the time their body is just
of the time their body is just accumulating toxins and they just feel
accumulating toxins and they just feel
accumulating toxins and they just feel awful
awful
awful but they don’t look ill and it’s really
but they don’t look ill and it’s really
but they don’t look ill and it’s really quite challenging for them to sort of
quite challenging for them to sort of
quite challenging for them to sort of try and survive and function and get on
try and survive and function and get on
try and survive and function and get on with everyday life when they’re managing
with everyday life when they’re managing
with everyday life when they’re managing with this really tough disease and one
with this really tough disease and one
with this really tough disease and one of the things that for me came out of
of the things that for me came out of
of the things that for me came out of doing the last TED talk was that that
doing the last TED talk was that that
doing the last TED talk was that that was the first time I went on to a really
was the first time I went on to a really
was the first time I went on to a really public quite high-profile platform and
public quite high-profile platform and
public quite high-profile platform and shared my story of doing home dialysis
shared my story of doing home dialysis
shared my story of doing home dialysis and how lucky I am and what a great
and how lucky I am and what a great
and how lucky I am and what a great experience I have of dialyzer in that
experience I have of dialyzer in that
experience I have of dialyzer in that way and it put me in touch with a lot of
way and it put me in touch with a lot of
way and it put me in touch with a lot of kidney patients all around the world in
kidney patients all around the world in
kidney patients all around the world in fact who found the talk and contacted me
fact who found the talk and contacted me
fact who found the talk and contacted me and shared their stories and it was very
and shared their stories and it was very
and shared their stories and it was very humbling and very inspiring to hear from
humbling and very inspiring to hear from
humbling and very inspiring to hear from different people who are all managing
different people who are all managing
different people who are all managing with this disease and you were always a
with this disease and you were always a
with this disease and you were always a kidney patient so we all hear about the
kidney patient so we all hear about the
kidney patient so we all hear about the organ donation list and everybody
organ donation list and everybody
organ donation list and everybody appealing for people to become donors
appealing for people to become donors
appealing for people to become donors but even if you have a kidney transplant
but even if you have a kidney transplant
but even if you have a kidney transplant it doesn’t fix everything hopefully it
it doesn’t fix everything hopefully it
it doesn’t fix everything hopefully it will be great and you will do really
will be great and you will do really
will be great and you will do really well but that transplant probably won’t
well but that transplant probably won’t
well but that transplant probably won’t last forever and you will be taking an
last forever and you will be taking an
last forever and you will be taking an awful lot of very aggressive strong
awful lot of very aggressive strong
awful lot of very aggressive strong medication to keep the transplant
medication to keep the transplant
medication to keep the transplant working so even when you have a
working so even when you have a
working so even when you have a transplant it’s not a solution so kidney
transplant it’s not a solution so kidney
transplant it’s not a solution so kidney patients they’re a tough crowd they’re
patients they’re a tough crowd they’re
patients they’re a tough crowd they’re really strong really positive people and
really strong really positive people and
really strong really positive people and they’re dealing with a lot and actually
they’re dealing with a lot and actually
they’re dealing with a lot and actually it’s also fairly hidden disease but it’s
it’s also fairly hidden disease but it’s
it’s also fairly hidden disease but it’s more common than you think so probably
more common than you think so probably
more common than you think so probably most people here or maybe you yourselves
most people here or maybe you yourselves
most people here or maybe you yourselves may have some degree of kidney disease
may have some degree of kidney disease
may have some degree of kidney disease and may have some awareness of this so
and may have some awareness of this so
and may have some awareness of this so most of my last talk was really
most of my last talk was really
most of my last talk was really enlightening for me when I thought
enlightening for me when I thought
enlightening for me when I thought actually I am so passionate about
actually I am so passionate about
actually I am so passionate about spreading the message about kidney
spreading the message about kidney
spreading the message about kidney awareness and about home dialysis and I
awareness and about home dialysis and I
awareness and about home dialysis and I want to help more patients to feel
want to help more patients to feel
want to help more patients to feel empowered to care for themselves home
empowered to care for themselves home
empowered to care for themselves home dialysis is fairly scary as a thought as
dialysis is fairly scary as a thought as
dialysis is fairly scary as a thought as you can see it’s a complicated machine
you can see it’s a complicated machine
you can see it’s a complicated machine your blood is in the machine going
your blood is in the machine going
your blood is in the machine going around a pump all night you’ve got
around a pump all night you’ve got
around a pump all night you’ve got needles in your arm you do feel you know
needles in your arm you do feel you know
needles in your arm you do feel you know that’s fairly vulnerable there are lots
that’s fairly vulnerable there are lots
that’s fairly vulnerable there are lots of things that you feel could go wrong
of things that you feel could go wrong
of things that you feel could go wrong so for a lot of patients home dialysis
so for a lot of patients home dialysis
so for a lot of patients home dialysis is a fairly daunting prospect and a lot
is a fairly daunting prospect and a lot
is a fairly daunting prospect and a lot of them aren’t even offered the choice
of them aren’t even offered the choice
of them aren’t even offered the choice for various reasons their unit or their
for various reasons their unit or their
for various reasons their unit or their Hospital just don’t offer them that
Hospital just don’t offer them that
Hospital just don’t offer them that opportunity so I made a lot of big
opportunity so I made a lot of big
opportunity so I made a lot of big changes and big decision
changes and big decision
changes and big decision in the last couple of years since I was
in the last couple of years since I was
in the last couple of years since I was asked at TEDx and the first being I had
asked at TEDx and the first being I had
asked at TEDx and the first being I had a great job a great career in investment
a great job a great career in investment
a great job a great career in investment banking which I loved and I kind of
banking which I loved and I kind of
banking which I loved and I kind of thought that was what I was going to
thought that was what I was going to
thought that was what I was going to keep doing but I found myself
keep doing but I found myself
keep doing but I found myself desperately trying to find more and more
desperately trying to find more and more
desperately trying to find more and more time to talk with patience to work with
time to talk with patience to work with
time to talk with patience to work with the NHS to improve things for patients
the NHS to improve things for patients
the NHS to improve things for patients and campaigning to raise awareness so
and campaigning to raise awareness so
and campaigning to raise awareness so eventually I felt that’s actually
eventually I felt that’s actually
eventually I felt that’s actually probably what I should be doing
probably what I should be doing
probably what I should be doing full-time with my life and I needed to
full-time with my life and I needed to
full-time with my life and I needed to change work in order to accommodate that
change work in order to accommodate that
change work in order to accommodate that so I left my job in the city and I set
so I left my job in the city and I set
so I left my job in the city and I set up as a consultant to be able to work
up as a consultant to be able to work
up as a consultant to be able to work both in the world of kidney medicine but
both in the world of kidney medicine but
both in the world of kidney medicine but also continuing to do what I did as a
also continuing to do what I did as a
also continuing to do what I did as a day job which was working in talent
day job which was working in talent
day job which was working in talent development and diversity and it struck
development and diversity and it struck
development and diversity and it struck me pretty quickly that once I left my
me pretty quickly that once I left my
me pretty quickly that once I left my job in London if you’re going to be a
job in London if you’re going to be a
job in London if you’re going to be a consultant and be freelance you don’t
consultant and be freelance you don’t
consultant and be freelance you don’t have to live in London anymore
have to live in London anymore
have to live in London anymore so this born and bred London girl from
so this born and bred London girl from
so this born and bred London girl from Peckham moved here and that was a sort
Peckham moved here and that was a sort
Peckham moved here and that was a sort of slightly unexpected side effect of
of slightly unexpected side effect of
of slightly unexpected side effect of moving out of London is that I found in
moving out of London is that I found in
moving out of London is that I found in a completely different way of life and I
a completely different way of life and I
a completely different way of life and I went from being an absolute city girl
went from being an absolute city girl
went from being an absolute city girl party girl burning the candle at both
party girl burning the candle at both
party girl burning the candle at both ends probably pushing myself a little
ends probably pushing myself a little
ends probably pushing myself a little bit too hard and trying to go 110
bit too hard and trying to go 110
bit too hard and trying to go 110 percent all the time to finding some
percent all the time to finding some
percent all the time to finding some peace and tranquility in beautiful
peace and tranquility in beautiful
peace and tranquility in beautiful surroundings away from the city and away
surroundings away from the city and away
surroundings away from the city and away from some of that kind of high-pressure
from some of that kind of high-pressure
from some of that kind of high-pressure environment that I I think was a little
environment that I I think was a little
environment that I I think was a little bit of victim of I’ve spent my entire
bit of victim of I’ve spent my entire
bit of victim of I’ve spent my entire life trying to prove a point that I am
life trying to prove a point that I am
life trying to prove a point that I am not sick and I’m not a patient and I
not sick and I’m not a patient and I
not sick and I’m not a patient and I don’t have any problems that I have to
don’t have any problems that I have to
don’t have any problems that I have to deal with so I’ll try and do everything
deal with so I’ll try and do everything
deal with so I’ll try and do everything that everybody else does and more and I
that everybody else does and more and I
that everybody else does and more and I think I have finally learned that it’s
think I have finally learned that it’s
think I have finally learned that it’s okay to step back a little take a bit of
okay to step back a little take a bit of
okay to step back a little take a bit of time and really focus on what you want
time and really focus on what you want
time and really focus on what you want out of life and try and kind of remove
out of life and try and kind of remove
out of life and try and kind of remove all of that noise and that pressure that
all of that noise and that pressure that
all of that noise and that pressure that was surrounding me so leaving London was
was surrounding me so leaving London was
was surrounding me so leaving London was actually one of the best things I
actually one of the best things I
actually one of the best things I possibly could have done and I also
possibly could have done and I also
possibly could have done and I also learned a few things such as the car
learned a few things such as the car
learned a few things such as the car thieves look a little bit different in
thieves look a little bit different in
thieves look a little bit different in the countryside so that’s Brenda who
the countryside so that’s Brenda who
the countryside so that’s Brenda who lives where I live and then she just
lives where I live and then she just
lives where I live and then she just texts the car over for me every now and
texts the car over for me every now and
texts the car over for me every now and then so here I was I had no job I had
then so here I was I had no job I had
then so here I was I had no job I had the prospect of potential clients who I
the prospect of potential clients who I
the prospect of potential clients who I could work with and I had this wonderful
could work with and I had this wonderful
could work with and I had this wonderful home in the peace and quiet at the
home in the peace and quiet at the
home in the peace and quiet at the countryside and so very excitingly the
countryside and so very excitingly the
countryside and so very excitingly the first piece of work that I have been
first piece of work that I have been
first piece of work that I have been involved with and just for a year now
involved with and just for a year now
involved with and just for a year now involved in becoming a patient advocate
involved in becoming a patient advocate
involved in becoming a patient advocate for this amazing new dialysis machine
for this amazing new dialysis machine
for this amazing new dialysis machine now just to remind you this is my
now just to remind you this is my
now just to remind you this is my dialysis machine there’s actually about
dialysis machine there’s actually about
dialysis machine there’s actually about 25 years old probably that machine but
25 years old probably that machine but
25 years old probably that machine but the technology hasn’t really changed
the technology hasn’t really changed
the technology hasn’t really changed much in the time that since I’ve
much in the time that since I’ve
much in the time that since I’ve certainly started dial izing and then we
certainly started dial izing and then we
certainly started dial izing and then we have this which is called the self-care
have this which is called the self-care
have this which is called the self-care plus and this machine is really exciting
plus and this machine is really exciting
plus and this machine is really exciting it’s been designed to be used by
it’s been designed to be used by
it’s been designed to be used by patients and primarily at home or for
patients and primarily at home or for
patients and primarily at home or for patients who wish to care for themselves
patients who wish to care for themselves
patients who wish to care for themselves in center dialysis it has two buttons on
in center dialysis it has two buttons on
in center dialysis it has two buttons on the front instead of around 45 buttons
the front instead of around 45 buttons
the front instead of around 45 buttons on the front it does exactly the same
on the front it does exactly the same
on the front it does exactly the same treatment it works in exactly the same
treatment it works in exactly the same
treatment it works in exactly the same way but I would feel quite happy having
way but I would feel quite happy having
way but I would feel quite happy having that in my home it looks a little bit
that in my home it looks a little bit
that in my home it looks a little bit like a you know a coffee machine or a
like a you know a coffee machine or a
like a you know a coffee machine or a fridge rather than an enormous Dalek
fridge rather than an enormous Dalek
fridge rather than an enormous Dalek with tubes coming everywhere so one of
with tubes coming everywhere so one of
with tubes coming everywhere so one of the big obstacles that patients say is
the big obstacles that patients say is
the big obstacles that patients say is they don’t want a massive medical device
they don’t want a massive medical device
they don’t want a massive medical device in their home they really find that
in their home they really find that
in their home they really find that off-putting and so I’m really excited to
off-putting and so I’m really excited to
off-putting and so I’m really excited to be involved with the project that we’ll
be involved with the project that we’ll
be involved with the project that we’ll be launching this machine hopefully
be launching this machine hopefully
be launching this machine hopefully towards the end of this year in the UK
towards the end of this year in the UK
towards the end of this year in the UK and then round into other countries in
and then round into other countries in
and then round into other countries in the coming years to really encourage
the coming years to really encourage
the coming years to really encourage more patients and make it easier for
more patients and make it easier for
more patients and make it easier for them to dialyze themselves at home and
them to dialyze themselves at home and
them to dialyze themselves at home and once you start dilating yourself at home
once you start dilating yourself at home
once you start dilating yourself at home you can dialyze more often for more
you can dialyze more often for more
you can dialyze more often for more hours and your health will have a
hours and your health will have a
hours and your health will have a complete turnaround and the difference
complete turnaround and the difference
complete turnaround and the difference in your life enabling you to look at
in your life enabling you to look at
in your life enabling you to look at getting back into employment spending
getting back into employment spending
getting back into employment spending time with your family pursuing your
time with your family pursuing your
time with your family pursuing your hobbies going back to getting fit just
hobbies going back to getting fit just
hobbies going back to getting fit just doing something really normal like
doing something really normal like
doing something really normal like getting up in the morning and having the
getting up in the morning and having the
getting up in the morning and having the energy to go supermarket shopping and
energy to go supermarket shopping and
energy to go supermarket shopping and come home and put the shopping away and
come home and put the shopping away and
come home and put the shopping away and then cook dinner those sort of things
then cook dinner those sort of things
then cook dinner those sort of things are really often out of reach for the
are really often out of reach for the
are really often out of reach for the patients who only have their dialysis
patients who only have their dialysis
patients who only have their dialysis three times a week in hospital and those
three times a week in hospital and those
three times a week in hospital and those patients don’t want pity they don’t want
patients don’t want pity they don’t want
patients don’t want pity they don’t want people to think oh you’re really sick
people to think oh you’re really sick
people to think oh you’re really sick poor you they don’t want everybody
poor you they don’t want everybody
poor you they don’t want everybody looking after them but they do want
looking after them but they do want
looking after them but they do want empathy and they want support and they
empathy and they want support and they
empathy and they want support and they want solutions so that they can get
want solutions so that they can get
want solutions so that they can get their lives back on track and I believe
their lives back on track and I believe
their lives back on track and I believe that this machine is going to make a
that this machine is going to make a
that this machine is going to make a huge difference to people’s lives the
huge difference to people’s lives the
huge difference to people’s lives the second real exciting thing for me is
second real exciting thing for me is
second real exciting thing for me is that I was not that long ago approached
that I was not that long ago approached
that I was not that long ago approached by a very inspiring gentleman who whose
by a very inspiring gentleman who whose
by a very inspiring gentleman who whose wife had in the last sort of six to
wife had in the last sort of six to
wife had in the last sort of six to eight months very suddenly gone into
eight months very suddenly gone into
eight months very suddenly gone into kidney failure and he had been plunged
kidney failure and he had been plunged
kidney failure and he had been plunged with her into this whole world of kidney
with her into this whole world of kidney
with her into this whole world of kidney disease having no experience of it
disease having no experience of it
disease having no experience of it whatsoever before and was very shocked
whatsoever before and was very shocked
whatsoever before and was very shocked at the lack of information and lack of
at the lack of information and lack of
at the lack of information and lack of support that was available both to her
support that was available both to her
support that was available both to her as a new patient and to him as her carer
as a new patient and to him as her carer
as a new patient and to him as her carer now his background his background is in
now his background his background is in
now his background his background is in education in social enterprise and in
education in social enterprise and in
education in social enterprise and in technology and he wanted to bring all of
technology and he wanted to bring all of
technology and he wanted to bring all of this knowledge and experience that he
this knowledge and experience that he
this knowledge and experience that he had into the world of kidney disease and
had into the world of kidney disease and
had into the world of kidney disease and somebody put him in touch with me and
somebody put him in touch with me and
somebody put him in touch with me and said that I was seeking to also do the
said that I was seeking to also do the
said that I was seeking to also do the same in terms of patient education and
same in terms of patient education and
same in terms of patient education and changing paid patients lives and so I’m
changing paid patients lives and so I’m
changing paid patients lives and so I’m really really lucky that we met each
really really lucky that we met each
really really lucky that we met each other and his ideas have become the
other and his ideas have become the
other and his ideas have become the inspiration to create make someone smile
inspiration to create make someone smile
inspiration to create make someone smile and Polly already talked about making
and Polly already talked about making
and Polly already talked about making people smile and I think that’s a theme
people smile and I think that’s a theme
people smile and I think that’s a theme when you’re looking at people who have
when you’re looking at people who have
when you’re looking at people who have chronic conditions people who are living
chronic conditions people who are living
chronic conditions people who are living perhaps quite a tough life is that there
perhaps quite a tough life is that there
perhaps quite a tough life is that there are some very simple things you can do
are some very simple things you can do
are some very simple things you can do to really change their lives
to really change their lives
to really change their lives so make someone smile is still a baby
so make someone smile is still a baby
so make someone smile is still a baby we’re still growing and working out what
we’re still growing and working out what
we’re still growing and working out what we want to do with it but primarily we
we want to do with it but primarily we
we want to do with it but primarily we want to focus on patients holistically
want to focus on patients holistically
want to focus on patients holistically so they get their treatment and they get
so they get their treatment and they get
so they get their treatment and they get their blood test results and they have
their blood test results and they have
their blood test results and they have the doctors telling them this is wrong
the doctors telling them this is wrong
the doctors telling them this is wrong and this is good and here’s how we’re
and this is good and here’s how we’re
and this is good and here’s how we’re going to treat you but what they don’t
going to treat you but what they don’t
going to treat you but what they don’t get is people saying how’s work how are
get is people saying how’s work how are
get is people saying how’s work how are you talking to your new employer about
you talking to your new employer about
you talking to your new employer about kidney your kidney health how do you
kidney your kidney health how do you
kidney your kidney health how do you explain the alysus to people who you
explain the alysus to people who you
explain the alysus to people who you meet when you’re going on a date in a
meet when you’re going on a date in a
meet when you’re going on a date in a bar how do you find out how to cook the
bar how do you find out how to cook the
bar how do you find out how to cook the really really really strict renal diet
really really really strict renal diet
really really really strict renal diet so you can actually still make nice food
so you can actually still make nice food
so you can actually still make nice food and not have to think I really don’t
and not have to think I really don’t
and not have to think I really don’t want to eat anything today because the
want to eat anything today because the
want to eat anything today because the food I’m allowed to eat is just there’s
food I’m allowed to eat is just there’s
food I’m allowed to eat is just there’s no point how do you as a young adult
no point how do you as a young adult
no point how do you as a young adult come to terms with having this chronic
come to terms with having this chronic
come to terms with having this chronic condition for the rest of your life but
condition for the rest of your life but
condition for the rest of your life but still achieve your ambitions still go
still achieve your ambitions still go
still achieve your ambitions still go traveling still aspire to the job and
traveling still aspire to the job and
traveling still aspire to the job and the education that you want to achieve
the education that you want to achieve
the education that you want to achieve and none of that is really out there
and none of that is really out there
and none of that is really out there there are some great stuff going on in
there are some great stuff going on in
there are some great stuff going on in pockets around the UK and in the world
pockets around the UK and in the world
pockets around the UK and in the world at large but there isn’t a very
at large but there isn’t a very
at large but there isn’t a very consistent approach and many patients
consistent approach and many patients
consistent approach and many patients struggle to find the information that
struggle to find the information that
struggle to find the information that they need so through make someone smile
they need so through make someone smile
they need so through make someone smile we want to create resources and tools
we want to create resources and tools
we want to create resources and tools that will help people find information
that will help people find information
that will help people find information to help them live their lives we want to
to help them live their lives we want to
to help them live their lives we want to connect patients together especially
connect patients together especially
connect patients together especially young adults so they feel that they are
young adults so they feel that they are
young adults so they feel that they are not the only person who is living with
not the only person who is living with
not the only person who is living with this disease and struggling often day to
this disease and struggling often day to
this disease and struggling often day to day and we want to actually ultimately
day and we want to actually ultimately
day and we want to actually ultimately also have an input into the design of
also have an input into the design of
also have an input into the design of healthcare services such as dialysis so
healthcare services such as dialysis so
healthcare services such as dialysis so that they can be made more patient
that they can be made more patient
that they can be made more patient centric
centric
centric and more about the people and the
and more about the people and the
and more about the people and the individuals who are involved and the
individuals who are involved and the
individuals who are involved and the most exciting thing is when we when we
most exciting thing is when we when we
most exciting thing is when we when we launched we were able to work with the
launched we were able to work with the
launched we were able to work with the Duke of Edinburgh scheme to offer the
Duke of Edinburgh scheme to offer the
Duke of Edinburgh scheme to offer the first Duke of Edinburgh programs
first Duke of Edinburgh programs
first Duke of Edinburgh programs specifically for people with a chronic
specifically for people with a chronic
specifically for people with a chronic condition so we have the Duke of
condition so we have the Duke of
condition so we have the Duke of Edinburgh for young adults with kidney
Edinburgh for young adults with kidney
Edinburgh for young adults with kidney disease and the program’s being launched
disease and the program’s being launched
disease and the program’s being launched and we’re looking at recruiting young
and we’re looking at recruiting young
and we’re looking at recruiting young adults at the moment so they can go
adults at the moment so they can go
adults at the moment so they can go through that and develop skills and have
through that and develop skills and have
through that and develop skills and have some accredited skills to leave at the
some accredited skills to leave at the
some accredited skills to leave at the end of the program like all the other
end of the program like all the other
end of the program like all the other young adults and their peers who don’t
young adults and their peers who don’t
young adults and their peers who don’t have kidney conditions so that’s really
have kidney conditions so that’s really
have kidney conditions so that’s really exciting and I think for me it’s really
exciting and I think for me it’s really
exciting and I think for me it’s really it’s been empowering to know that
it’s been empowering to know that
it’s been empowering to know that through leaving what I used to do and
through leaving what I used to do and
through leaving what I used to do and setting out kind of on my own suddenly
setting out kind of on my own suddenly
setting out kind of on my own suddenly all these opportunities were there for
all these opportunities were there for
all these opportunities were there for the taking and there are people out
the taking and there are people out
the taking and there are people out there who share an ambition and if you
there who share an ambition and if you
there who share an ambition and if you actually talk to people and say yes to
actually talk to people and say yes to
actually talk to people and say yes to everything and follow all these pathways
everything and follow all these pathways
everything and follow all these pathways of opportunity and all these things kind
of opportunity and all these things kind
of opportunity and all these things kind of have materialized over the last year
of have materialized over the last year
of have materialized over the last year and actually I feel like it’s quite
and actually I feel like it’s quite
and actually I feel like it’s quite surreal in a way how much my life has
surreal in a way how much my life has
surreal in a way how much my life has changed but it has gone in a direction
changed but it has gone in a direction
changed but it has gone in a direction where I am so lucky that the things I’m
where I am so lucky that the things I’m
where I am so lucky that the things I’m doing day to day I’m really passionate
doing day to day I’m really passionate
doing day to day I’m really passionate about and I get to work with other
about and I get to work with other
about and I get to work with other patients and actually see how inspiring
patients and actually see how inspiring
patients and actually see how inspiring they are and how they are surviving and
they are and how they are surviving and
they are and how they are surviving and ploughing on despite some of the
ploughing on despite some of the
ploughing on despite some of the challenges that face them and so in my
challenges that face them and so in my
challenges that face them and so in my last talk I also mentioned that having a
last talk I also mentioned that having a
last talk I also mentioned that having a chronic condition and to keeping myself
chronic condition and to keeping myself
chronic condition and to keeping myself alive on the machine every day has
alive on the machine every day has
alive on the machine every day has somehow driven me to seek out the most
somehow driven me to seek out the most
somehow driven me to seek out the most dangerous activities I can possibly find
dangerous activities I can possibly find
dangerous activities I can possibly find in my spare time so skydiving is my
in my spare time so skydiving is my
in my spare time so skydiving is my absolute passion and I spoke about the
absolute passion and I spoke about the
absolute passion and I spoke about the fact that I started skydiving two or
fact that I started skydiving two or
fact that I started skydiving two or three years ago and I’ve done over 300
three years ago and I’ve done over 300
three years ago and I’ve done over 300 jumps now and I continue to be very
jumps now and I continue to be very
jumps now and I continue to be very lucky and I can have the opportunity to
lucky and I can have the opportunity to
lucky and I can have the opportunity to travel and to jump in other countries as
travel and to jump in other countries as
travel and to jump in other countries as much as possible and I cannot explain
much as possible and I cannot explain
much as possible and I cannot explain how liberating it is to fling yourself
how liberating it is to fling yourself
how liberating it is to fling yourself out of a perfectly good airplane and
out of a perfectly good airplane and
out of a perfectly good airplane and then survive that and land and go back
then survive that and land and go back
then survive that and land and go back up and do it again I also really try to
up and do it again I also really try to
up and do it again I also really try to push my physical fitness I think when
push my physical fitness I think when
push my physical fitness I think when you have a chronic condition again
you have a chronic condition again
you have a chronic condition again that’s something which often has to kind
that’s something which often has to kind
that’s something which often has to kind of go by the wayside and people don’t
of go by the wayside and people don’t
of go by the wayside and people don’t tend to advise you about the health and
tend to advise you about the health and
tend to advise you about the health and fitness you can pass you most often as a
fitness you can pass you most often as a
fitness you can pass you most often as a kidney patient you’re told don’t do this
kidney patient you’re told don’t do this
kidney patient you’re told don’t do this you can’t do that that’s dangerous this
you can’t do that that’s dangerous this
you can’t do that that’s dangerous this will interact with your treatment or
will interact with your treatment or
will interact with your treatment or your medication and I have
your medication and I have
your medication and I have hold my hands up most of the things that
hold my hands up most of the things that
hold my hands up most of the things that I choose to go and do are not advisable
I choose to go and do are not advisable
I choose to go and do are not advisable to kidney patients and I would say
to kidney patients and I would say
to kidney patients and I would say borderline a little bit reckless and I’m
borderline a little bit reckless and I’m
borderline a little bit reckless and I’m happy to take full responsibility for my
happy to take full responsibility for my
happy to take full responsibility for my choices but I have to say it is great
choices but I have to say it is great
choices but I have to say it is great when you can still maintain a level of
when you can still maintain a level of
when you can still maintain a level of fitness and work hard and actually train
fitness and work hard and actually train
fitness and work hard and actually train for things where you can really test
for things where you can really test
for things where you can really test your physical fitness despite the
your physical fitness despite the
your physical fitness despite the challenges that your body is going
challenges that your body is going
challenges that your body is going through and what being able to do that
through and what being able to do that
through and what being able to do that actually gives me something to work
actually gives me something to work
actually gives me something to work towards and on the days when you don’t
towards and on the days when you don’t
towards and on the days when you don’t feel quite so good you think actually I
feel quite so good you think actually I
feel quite so good you think actually I have to get up I have to go because I’ve
have to get up I have to go because I’ve
have to get up I have to go because I’ve set myself a challenge of doing this
set myself a challenge of doing this
set myself a challenge of doing this activity or that event or just you know
activity or that event or just you know
activity or that event or just you know I’ve got to get through twelve skydives
I’ve got to get through twelve skydives
I’ve got to get through twelve skydives at the weekend and that’s quite
at the weekend and that’s quite
at the weekend and that’s quite physically challenging too so I think
physically challenging too so I think
physically challenging too so I think that that’s something that really does
that that’s something that really does
that that’s something that really does keep me going and it gives me a lot of
keep me going and it gives me a lot of
keep me going and it gives me a lot of it gives me a lot of inspiration just
it gives me a lot of inspiration just
it gives me a lot of inspiration just sort of travel and still have to dialyze
sort of travel and still have to dialyze
sort of travel and still have to dialyze when I travel and go and find somewhere
when I travel and go and find somewhere
when I travel and go and find somewhere where in the destination that I’m going
where in the destination that I’m going
where in the destination that I’m going to to book dialysis and turn up at a
to to book dialysis and turn up at a
to to book dialysis and turn up at a strange Hospital where you don’t speak
strange Hospital where you don’t speak
strange Hospital where you don’t speak the language and you have no idea how
the language and you have no idea how
the language and you have no idea how it’s going to work that in itself I
it’s going to work that in itself I
it’s going to work that in itself I actually find quite exciting so I’m a
actually find quite exciting so I’m a
actually find quite exciting so I’m a bit weird so I guess for me in what I
bit weird so I guess for me in what I
bit weird so I guess for me in what I really want to continue pursuing of
really want to continue pursuing of
really want to continue pursuing of things that give me joy every day I am
things that give me joy every day I am
things that give me joy every day I am very aware in a really positive way that
very aware in a really positive way that
very aware in a really positive way that life is so delicate if I didn’t have
life is so delicate if I didn’t have
life is so delicate if I didn’t have dialysis I wouldn’t be here within five
dialysis I wouldn’t be here within five
dialysis I wouldn’t be here within five days to a week I’d be dead and that
days to a week I’d be dead and that
days to a week I’d be dead and that sounds quite stark but actually for me
sounds quite stark but actually for me
sounds quite stark but actually for me that’s a really really motivating thing
that’s a really really motivating thing
that’s a really really motivating thing and it makes me incredibly thankful and
and it makes me incredibly thankful and
and it makes me incredibly thankful and incredibly grateful to be here and to
incredibly grateful to be here and to
incredibly grateful to be here and to have opportunities to do the things that
have opportunities to do the things that
have opportunities to do the things that I do so in terms of the next year I’ve
I do so in terms of the next year I’ve
I do so in terms of the next year I’ve I’m lucky enough to now be part of the
I’m lucky enough to now be part of the
I’m lucky enough to now be part of the formation skydiving team with these
formation skydiving team with these
formation skydiving team with these lovely ladies here and we are entering
lovely ladies here and we are entering
lovely ladies here and we are entering the rookie category at the UK skydiving
the rookie category at the UK skydiving
the rookie category at the UK skydiving championships this summer we do a lot of
championships this summer we do a lot of
championships this summer we do a lot of laughing and less beautiful – skydiving
laughing and less beautiful – skydiving
laughing and less beautiful – skydiving because we’re too busy laughing but
because we’re too busy laughing but
because we’re too busy laughing but we’re going to give it our best shot and
we’re going to give it our best shot and
we’re going to give it our best shot and in Ricky it’s lovely because it’s open
in Ricky it’s lovely because it’s open
in Ricky it’s lovely because it’s open to anyone who wants to enter and it’s
to anyone who wants to enter and it’s
to anyone who wants to enter and it’s for all people who are new to the sport
for all people who are new to the sport
for all people who are new to the sport and you can have fun and learn so much
and you can have fun and learn so much
and you can have fun and learn so much so we’re going to enter the competition
so we’re going to enter the competition
so we’re going to enter the competition this summer and then the second thing
this summer and then the second thing
this summer and then the second thing and this I almost don’t want to put out
and this I almost don’t want to put out
and this I almost don’t want to put out into the public sphere but I’m going to
into the public sphere but I’m going to
into the public sphere but I’m going to say it anyway and my dad is in the
say it anyway and my dad is in the
say it anyway and my dad is in the to here he actually donated his kidney
to here he actually donated his kidney
to here he actually donated his kidney to me about 12 years ago in an attempted
to me about 12 years ago in an attempted
to me about 12 years ago in an attempted transplant which sadly didn’t work
transplant which sadly didn’t work
transplant which sadly didn’t work because my immune system immediately
because my immune system immediately
because my immune system immediately rejected the kidney so he has one kidney
rejected the kidney so he has one kidney
rejected the kidney so he has one kidney and he hope he doesn’t mind me saying
and he hope he doesn’t mind me saying
and he hope he doesn’t mind me saying he’s over 70 and he decided to just do
he’s over 70 and he decided to just do
he’s over 70 and he decided to just do his first marathon but he wandered along
his first marathon but he wandered along
his first marathon but he wandered along and did very calmly and in a very
and did very calmly and in a very
and did very calmly and in a very relaxed fashion and he did good trading
relaxed fashion and he did good trading
relaxed fashion and he did good trading but really inspired me he is here but I
but really inspired me he is here but I
but really inspired me he is here but I can’t see because it’s dark he’s in the
can’t see because it’s dark he’s in the
can’t see because it’s dark he’s in the room really really inspired me to think
room really really inspired me to think
room really really inspired me to think wow okay he’s just gone and run a
wow okay he’s just gone and run a
wow okay he’s just gone and run a marathon and I’m a little bit
marathon and I’m a little bit
marathon and I’m a little bit competitive as well so for my 20-year
competitive as well so for my 20-year
competitive as well so for my 20-year dialysis anniversary next year I have
dialysis anniversary next year I have
dialysis anniversary next year I have entered the London Marathon I hate
entered the London Marathon I hate
entered the London Marathon I hate running I’m not Dame Kelly Holmes I’ve
running I’m not Dame Kelly Holmes I’ve
running I’m not Dame Kelly Holmes I’ve never run anything in my life before so
never run anything in my life before so
never run anything in my life before so that’s a real real challenge but I’m
that’s a real real challenge but I’m
that’s a real real challenge but I’m also quite excited to think I might
also quite excited to think I might
also quite excited to think I might possibly cross that finish line so
possibly cross that finish line so
possibly cross that finish line so that’s my that’s my goal for the next
that’s my that’s my goal for the next
that’s my that’s my goal for the next year and perhaps of the future TEDx
year and perhaps of the future TEDx
year and perhaps of the future TEDx event I’ll let you know if it actually
event I’ll let you know if it actually
event I’ll let you know if it actually happened thank you
happened thank you
happened thank you [Applause]
”
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