September 9, 2024 • 36 mins
Content Warning: This podcast episode contains discussions of a sensitive nature that may be triggering for some individuals.
Welcome to the Diary of a Kidney Warrior Podcast, in partnership with Kidney Care UK. Hosted by Dee Moore, this episode aims to encourage, educate, and inspire listeners by exploring all aspects of kidney disease, related chronic illnesses, and health.
In today's episode, Dee Moore interviews Kevin Malton who shares his remarkable 30-year kidney transplant story. Kevin discusses his journey from being diagnosed at age eight due to E. coli poisoning, through his initial and subsequent dialysis treatments, and ultimately to receiving a life-saving kidney transplant from his father.
Kevin provides an in-depth look at the impact of kidney disease on his childhood and the struggles he faced. He also shares valuable insights into managing life post-transplant, including dealing with medication side effects, maintaining health, and the importance of family support.
Tune in to hear Kevin's journey and his advice for others living with kidney disease, as well as his thoughts on living life to the fullest despite the challenges.
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Kevin Malton
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Kidney Care UK
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To sign up to receive the Kidney Matters Quarterly Magazine Email: info@kidneycareuk.org
Mental health issues - Every Mind Matters - NHS (www.nhs.uk)
Samaritans
Tel: 116 123 (freephone)
Chris,
Freepost RSRB-KKBY-CYJK
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(00:00):
Content Warning. This podcast episode contains discussions of a sensitive nature
that may be triggering for some individuals.
5, 4, 3, 2, 1.
Let's go. Diary of a Kidney Warrior podcast in partnership with Kidney Care UK.
(00:22):
Sharing faith, knowledge, hope and love. Hi, and welcome to Diary of a Kidney Warrior podcast.
Music.
My name is Dee Moore, and I am a kidney warrior.
This podcast is dedicated to encourage, educate, and inspire as we explore all
aspects of kidney disease, related chronic illnesses, and health.
(00:46):
If you have any questions or ideas for topics you would like me to cover,
please get in contact with me on social media using the handle Diary of a Kidney Warrior.
In today's episode, I am bringing you a kidney warrior story.
Now there's always something you can learn from someone's story,
something that can bring inspiration and hope.
(01:09):
My guest today from Derbyshire, England is Kevin Moulton.
Kevin joins me to share about his remarkable remarkable 30-year kidney transplant
story and the lessons he has learned along his Kidney Warrior journey.
Hi and welcome to Diary of a Kidney Warrior podcast. How are you doing today, Kevin?
(01:29):
I'm really well, thanks Dee. How are you? I'm really good.
I'm excited about the interview and everybody knows what I'm about to say because
I say it every time but sincerely do mean I'm I'm excited to record a Kidney
Warrior Story interview because, as I always say,
and it's so true, it is so powerful to learn from someone's lived experience
(01:51):
of chronic kidney disease.
So yes, very excited about our interview.
And without further ado, I'm going to start with my first question.
And my first question is, how did your Kidney Warrior journey begin and how were you diagnosed?
It began in 1986 when I was eight years old.
(02:14):
I'd basically got E. coli poisoning from a joint of beef that I'd had for a
family Sunday dinner, which led to a disease called HUS, which is Pneumatic Uremic Syndrome.
So I was obviously presented with vomiting, diarrhea and local GP sort of thing.
And I was admitted to the local hospital.
(02:34):
Now, I grew up in an army town called Kachur Garrison.
So this was an army hospital not an NHS hospital and so it didn't really have
an emergency department and they did very basic operations though to take your
tonsils out you know that kind of thing fix a broken leg but I went to the local
hospital and they diagnosed me with appendicitis,
(02:56):
so I had my appendix removed and sort of shortly after obviously they must have
monitored my blood results that kind of thing and realized that you know oh
he's not going on here and he's got
renal failure so needless to say i didn't have appendicitis so but i just took
it out for the fun of it i think but so yeah so then i was transferred to the
(03:16):
newcastle's royal victoria infirmary and obviously received i was very ill you
know three months i was in hospital before,
on dialysis obviously they're working to get my kidney function stable to sort of treat the.
Disease or should i say like the poisoning i guess
(03:37):
from the e-coli that kind of thing to obviously
stabilize my body it didn't also infect
my bowel which we'll perhaps come to later and
that's a little bit further down the line but it really ravaged
my body and i think the other thing
as well um my sister at the time she was five years old and she came into hospital
(03:58):
when i was in hospital the army hospital you know first being treated the day
after we're in adjacent rooms and i could see there's a little window and you
could see each other so she contracted the same.
E. coli poisoning basically but she I mean
luckily for her they sort of by the time
they'd been around me they sort of figured out what
(04:21):
was going on so they could treat her straight away I believe she had plasma
transfusions and thankfully for her she didn't have renal failure I think mainly
because I presented my symptoms first and they had an opportunity to sort of
realize what had happened basically so yeah so transferred to Newcastle Royal
Victorian Infirmary and then And a great consultant called Malcolm Coulthard,
he's retired now, but he's an absolutely fantastic man.
(04:43):
He obviously looked after my treatment all the way up until I left paediatrics.
I was 18 when I left paediatrics. I hung on for as long as possible.
Yeah, so that's basically how I contracted kidney disease and what happened initially.
We're winding back slightly. slightly so you
were in hospital three four months and you started dialysis i'm assuming hemodialysis
(05:08):
they put you on they yes they put me on hemodialysis it was just for a short
period so perhaps like a month or two i think just to stabilize things and try and get things going and,
so obviously after i completed my treatment obviously they basically said you
you got i'm I'm going to need a kidney transplant in the future, no matter what.
(05:30):
My kidneys are going to deteriorate. I had renal failure.
I don't know what stage it was at the time, but I was obviously following the diet.
I'm sure many listeners who have renal failure are familiar with,
you know, no potassium, no salt kind of thing.
And as a child, eight years old until, for several more years until I have my
transplant, it's difficult.
(05:51):
And I'm sure lots of parents who have children with renal failure,
they know difficulties.
Is because obviously kids are naturally obviously attracted towards sweets and
crisps and salty foods pizza and that kind of thing so it was a struggle looking
back i think i sort of took it my stride a little bit and accepted it but it
was yeah it was a struggle.
(06:12):
So you were on dialysis for a month and then managed your kidney failure through diet.
So in terms of your everyday life, how did kidney disease impact your childhood?
I was always a small child and very, very sort of underweight almost.
And I think the restrictive diet didn't help that.
(06:35):
I think I would have bulked out a little bit more.
And i believe it may have sort of studied my growth a little bit because i was
always you know the smallest child in the class you know i was always the skinniest child in the class,
but i was very energetic as a child and after my
diagnosis i still played sports as
normal still played out with friends entirely normal and
(06:57):
i was full of energy and you know and say
on sports day or pe at school i'd be like in the
middle of the class you know would be the slowest i wouldn't be the fastest
so in that respect it was i
led a normal sort of childhood you
know kind of thing i mean initially when i first
came out i did have a long line in mother would have
(07:18):
to push it out once a day and that was kept in in case things went pear-shaped
and i could you know immediately go back on dialysis kind of thing i was in
medications to take and as a child i struggled with them taking their medications
i preferred tablet form as opposed to medicine and I remember I used to have
a carry-on every morning,
you know, at least half an hour before school trying to get my tablet down me,
(07:40):
you know, and that must have been quite challenging for my mum thinking back.
But it was a nice experience for myself either, you know, didn't enjoy it.
But yeah, it's a childhood, you know, besides them sort of things,
it was very, very normal and I was lucky to have them years until my sort of.
Kidneys started to fail even further and I had to go back on dialysis at age 15.
(08:03):
I'm grateful for them seven years of sort of normality. It could have been very different.
You know, I could have been facing, waiting for a transplant during that time.
Could have affected my life a lot more negatively.
So you had those years between 8 and 15 where your kidney disease was managed via diet.
And then unfortunately at 15, your kidney function declined further.
(08:27):
And you started dialysis again.
Were you on hemodialysis or peritoneal dialysis?
I was on hemodialysis. I, as I mentioned earlier, I ended up having some small bowel removed.
And at the time, I think it was decided that PD wasn't going to work for me.
(08:50):
So I'd had a fistula put in when I was in hospital originally in 1986.
1996, third attempt, so I've got three scars to show for that.
That was working. So things were in place for me to eventually go on dialysis and things.
So yeah, so it was in October 1994, my GCSE year at school, so my final exams,
(09:12):
and I was back on hemodialysis three times a week.
Well, they sort of tested my dad to see if he was a compatible donor and sort
of gave him up to donate a kidney to me.
And how was that workup process preparing for living donation?
Because I knew that my dad was going to be giving me a kidney and we had a date,
(09:35):
it was going to be the January.
I coped well on dialysis, so I knew it was temporary.
Even though I missed a lot of schooling, I missed three days a week at school, obviously out of five.
So it did affect my GCSE results and that kind of thing.
It was okay and we um as a family we met a venal psychologist obviously to make
(09:55):
sure they were i guess so the family was stable and all the relationships and obviously,
when anyone has a major operation things unfortunately can go
wrong sometimes and you know what would happen if that happened
and how would the family cope and would there be resentment
you know we even went into do i resent my sister that i had renal failure and
she didn't end up with renal failure which is something I'd never even crossed
(10:19):
my mind until that point but it's a fair thing to explore I think yeah so obviously
my dad had his build-up tests and date was given I think January the 13th 1995.
So you had your transplant date it came and what happened next?
Well I remember I was extremely nervous and scared prior to the operation i
(10:41):
think sort of a few days before i remember wanting to run away from the hospital to,
i don't know why but i just wanted to escape from everything i was
obviously very apprehensive very scared i'd lived
a very non i dislike
using the word normal but it's the best way i
can describe it you know a stable life
(11:03):
for seven years before and almost every day
put it out of my mind i had adrenal failure because it
didn't impact me that much besides i would take medication and go to
the hospital for a blood test every six weeks it didn't
impact my life at all and so
to suddenly not suddenly but to go from that to the realization you're
gonna have a kidney transplant obviously you're told of the medication you're
(11:26):
taking what's going to be happening afterwards you're gonna have a draining
you're gonna have a catheter you know will it work you know obviously if it
doesn't work Will I be in a worse off position than I was?
Because I've had a major surgery and that kind of thing. Will my dad be okay?
That kind of thing as well. And my dad's a very...
(11:48):
Reserved person and i
think he's quite uncomfortable in like
a hospital or like a public environment and i felt
a little bit sort of sad for him in
that sense probably the wrong word but you know i really
felt for him you know that sort of thing i know how uncomfortable he
would have been obviously want to do it because his child
(12:09):
anyone would do that but i know it would just
not as plain sailing for him as as you might expect so
yeah so obviously i remember went to the cinema the night before
as a family my mum my dad and myself we went
to watch a movie in newcastle city centre just i
think to take our mind off things and then we'll see
prep for surgery in the morning and yeah things went extremely well mr ross
(12:33):
taylor did the surgery so i think anybody who's sort of been treated in the
newcastle area will have heard of that gentleman he's unfortunately passed away
now but i think he's like a pioneer transplant surgeon i think he,
He probably will stand corrected, but I think he's one of the first surgeons
to perform a renal transplant in the UK and he's very highly regarded.
I speak to consultants now when I go to the current hospital,
(12:56):
when they realise I've been to Newcastle, they're like, oh, did you know?
Everybody knows him, you know, he's a tremendously skilled learner.
Yeah, so I had my transplant and things went really well, quite luckily.
So the journey that you had to this point as
a family having the support of a renal psychologist
to help you through that process how
(13:19):
important would you say that was for you
i think it's extremely important because it
made me obviously i can't speak to my
parents or my sister but it made me think of
things just a little bit differently you
know and it made me realize that you know we're a secure family
it made me realize that my
(13:42):
sister was ill as well and she got better and I didn't but
it also gave me the confidence that you know as we
all sat around talking that my parents were fully on board
and committed to my
father donating me a kidney you know I'm like family dynamic is
different you know there could be people out
there who don't want their husband you know it's it's not
(14:06):
nice that sounds just think you know would i lose my
husband you know that kind of thing i think so yeah so it was really important
and obviously it's not just psychologists obviously dieticians incredibly important
and you know obviously all the other support staff the real sister jean sharp
she was amazing she was there throughout my sort.
(14:27):
Of 10 years as a paediatric patient yeah so in terms of the difference donation
made to your life what difference did receiving that transplant make to your life.
It was just incredible i mean as soon as i had the transplant and i was up and out of bed and,
(14:52):
sort of being discharged and i could if you have an operation
you're a bit groggy for a few days and a week or whatever since i
energy but i had more energy than i ever had in my life and
i didn't realize how much energy i didn't have before so when
i talked about my childhood being you know i was a very active child that
kind of thing i did not know how much
energy i was missing so just
(15:14):
full of energy full of life obviously the
medication the side effects and
things were pretty horrendous but i didn't
have to be on dialysis anymore obviously i could eat what i
wanted as a 15 year old is quite
important part of life and yeah and
i just felt really healthy and really energetic
(15:36):
and obviously there's a lot of stress and worry will the you know will
something go wrong obviously i'm going for bloods initially obviously every
day and then it would be like you know every twice a week once a week so eventually
you know until it tapers off but it was that worry but i was just you know just
full of life full of energy and energy as i said that i never thought i could
(15:57):
be that energetic to be honest.
So i like to have a balanced view when it comes to
the podcast and as much as we cover things
that that are positive i like to also be realistic
and prepare people for what could possibly happen as
well in terms of things that aren't so positive so you
mentioned about the medication and there being side effects what side effects
(16:21):
were you experiencing i had massive weight gain so as i said earlier i was a
very skinny sort of child you know 15 i was still thin and skinny
and i gained a lot of weight seemingly overnight but obviously over a period
of a few weeks how can i put it i went from being a skinny person to an overweight
(16:45):
person and i can imagine it's even worse if somebody is originally perhaps medium
build more of an impact if that makes sense.
Obviously, when I was 15, my facial hair hadn't started growing and it started
growing from side effects from the medication.
I mean, as a male, that didn't bother me, but I can obviously appreciate as
(17:06):
a female, it would be not very nice at all. I would have mood swings.
I would be hungry all the time, just constantly hungry.
I could never be full. I'd be up in the middle of the night making myself a
sandwich, just famished.
And that's a side effect of the medication as well. but i would say i mean at
the time you don't realize it but obviously all these medications things are
(17:28):
going fine they get lowered gradually over a period of time and you know this initial.
Weight gain and mood swings and constant hunger i'd say it really only lasted
a couple of months because perhaps you know i can't remember now because it
was 30 years ago but you know steroids probably heart in those by then because
you know you know and yeah but there was pretty
(17:50):
horrendous and obviously immunocompromised so initially you're
not really supposed to go out in public mixed with too many people it's infections
i remember quite early on i got glandular fever and so i had to go back into
hospital to get antibiotics on a drip obviously treated straight away with strong
antibiotics so because i was immunocompromised to that extent,
(18:12):
so it's like things like you know little things like that would be a little
bit of a pain so yeah Yeah, so it did affect me quite a bit.
I didn't like the way I looked.
Hair was constantly greasy, not how much I washed it.
Bad skin, spots and that kind of thing.
And I know sort of teenagers, every teenager gets spots anyway,
(18:32):
but this was horrendous. And it did actually continue into adulthood,
you know, at least in my early 30s.
I used to have really bad skin.
But saying that, you know, everybody is different. Everyone's side effects will be different.
The side effects do not last forever. And I think that's a lot of things in life.
I think when you're going through a negative situation or something that you
(18:55):
don't like, I've always thought this isn't forever.
It is going to change. And obviously it does because your medication gets lowered
and the side effects are a lot less severe.
And obviously having a functioning kidney sort of outweighs any of that by, you know, tenfold.
Also so as they lowered
(19:15):
the dose of the medication did things like the weight gain reduce and were you
able to then lose weight yes so the weight gain reduced and i think you know
i didn't put an active effort into losing weight i didn't check my diet i didn't do any more exercise
which is obviously the reduction in medication you lose the weight so yeah so,
(19:41):
I was still bulkier than normal and I think that if I wasn't still on the medication
now I think I'd have a little bit less weight on me but this is a huge difference
you know I ballooned when I come out of the transplant but then as it tapered
off you know I lost a fair bit of weight my hair Greasy hair sort of improved.
My skin got a bit better, but it continued to be an issue into adulthood.
(20:07):
I mean, I saw a dermatologist in the end, and now it's sort of more or less
okay, but it used to be pretty horrendous kind of thing.
Yeah, I think definitely as the medication gets lowered, all the side effects
and you lose the weight and things just sort of slowly calm down a bit.
(20:28):
So for someone listening who's due to have a transplant and may be concerned
about side effects, for example, you mentioned about weight gain or the effect on their skin,
what advice do you have for them in terms of being able to cope with things like that?
I think if you go into it with the
(20:50):
knowledge that you are more than likely
probably almost we're certainly going to gain weight after
the medication or the steroids i
think acceptance is a big part
but also it's as i say it's
not forever so i'm even reluctant to say
when you're back on your feet after the operation exercising or
(21:11):
eat better i don't think it has
that much of an impact if that makes sense
it's the actual medication side effects are causing
this so obviously that would be a
good thing to do but i don't think it'd have much of an impact so it's
just basically it's time basically you need to
just sort of be patient and understand
(21:32):
that the weight gain you will lose the
weight eventually as the medication comes down and you'll notice a difference
in your energy levels you'll notice a difference in you'll no longer have to
be on dialysis so obviously the weight gain is a huge negative and then that
negatively perhaps people in different ways.
(21:54):
But obviously the benefits of having a renal transplant a functioning kidney,
obviously far outweigh putting on a couple of stone i think so yeah definitely.
So you've had your kidney for 30 years now, and I think that is absolutely amazing
that you've maintained your kidney for so long and long may it continue and that you stay healthy.
(22:21):
And with this in mind, how have you maintained your kidney?
I mean, what tips do you have for anyone listening to keep that kidney going and keeping healthy?
Think well first of all i was extremely lucky that the kidney i received from
my dad is extremely close match so yeah i've got that going for me already so
(22:45):
i'm extremely lucky in that regard.
In terms of keeping it going and things i don't stress about it i go for a lot
of time not even thinking about renal failure thinking that i've had near kidney
transplant let's go through life.
As you know we'll use that word again but as
steady as possible in them 30 years i've
never missed a dose of my medication you know i
(23:08):
try to take it roughly at the same time every
day and if i only take medication on the morning now so
quite good but i take it every time trying to take
it every time in the morning but i don't stress if it's a couple of.
Hours later or a couple of hours before it's is
what it is but but taking your medication is obviously
the big thing and not forgetting not thinking i'll
(23:29):
just lower the dose myself because i feel like it
for whatever reason take the doctor's advice obviously attend
all the appointments don't be afraid to question your
consultant ask questions clarification nothing worse
than going home after a consultation and thinking i wish i'd
said that or what did they mean by that ask for
different things around things and stuff and just
(23:52):
you know i can't sit here and say oh i'm super
fit and i've never drank alcohol i've never
smoked i've never done whiskey things because
i've done all those things and some listeners might be appalled that
someone with a kidney transplant has acted like that but so
to me it's like obviously it's important to be healthy to eat
properly and stay hydrated and things but i
(24:14):
think not to just stress about it too much and
just live life you only got one life and you have
a transplant you got a second lease of lease on life so i think it's best just
to sort of enjoy it basically within reason yeah so i think yeah just you know
as i said i've been extremely extremely lucky i've sort of maintained things
(24:38):
like as a younger i've stayed away from.
Confrontations and fights and things that sounds a bit
a little bit silly but when you're like 16 17 18 year old and
you're going out you see fighting a couple of things and you know just because
you know you get kicked in your kidney site or punched or something it could
obviously damage your kidney and stuff so just remembering them sort of things
it's been a little bit wary i guess but and besides that it's just i've just
(25:02):
been extremely lucky to be honest with you dude,
So we've talked about how the donation was for yourself and clearly 30 years
later, your kidney is doing well.
I wanted to ask, how is your dad doing?
He's doing really well. He's 74 years of age now. Pretty much fit as a fiddle.
(25:23):
And he's had no complications, obviously, since donating the kidney.
His renal function is absolutely fine. I believe anyway that we can function on one fully working.
Oh, well, obviously we can. but he's yeah he's absolutely fine no complications from the,
donating the kidneys obviously he'd lived to the rest of
30 years of his life with no complications
(25:45):
so it proves that obviously there's no long-term effects from donating
a kidney I remember at the time he was quite sore and things after the operation
he was in more pain than I was I think but he's the donor so I think they just
cut him open and whip it out and not bother him back up when his job is done
so So obviously he had to have time off work, and he was obviously...
(26:08):
I never really thought about this until now, but obviously my mum would have
been there for me, seeing me every day, and then obviously supporting me and things that I needed.
Dad would have been pretty much on his own, and then obviously discharged sooner
than I was, to go and recuperate at home.
I just sort of realised he must have been by himself, kind of thing you know,
(26:32):
support or help around the house yeah so,
It's a very brave thing to do, I think. And I think from a relationship point
of view, I think it must have been quite stressful and put a real strain on their relationship.
Especially when I first became ill.
Obviously, growing up in Catrick and the hospital was in Newcastle, that's an hour away.
(26:54):
We didn't have a car as a child. So my mum was staying in Sunderland nearby to Newcastle.
It's about 10 minutes drive away. My grandad would take her
every day to see me or just stay over at the hospital when accommodation was
available so my parents were separate more or less
like three or four months and my dad came to
visit he had my sister at home you see so he'd
(27:17):
have to get her obviously ready for school and go to work himself do
her evening you know all the dad things you have to do
as a parent to a five-year-old it's
obviously a small child so he'd obviously
have to solo parent and my mum was doing
that and obviously he's got a study in hospital 60 miles
away or 50 miles away you know at one point it
(27:39):
looked like i'd not even be here
kind of thing so i think it must have put a strain on their relationship just
with that you know with everything and i think the finances as well because
obviously my mum at the time she was a waitress a restaurant on an evening and
she She obviously stopped work.
(28:00):
She did get the job back. They kept the job open for her, but she would have
had minimum income, less income.
Dad worked full-time, as I say, but I remember, you know, it was,
can I say, probably just slightly above minimum wage.
So it's not like he was earning sort of a lot of money.
So I do know that financially it would have been a struggle for them.
And obviously the extra costs when it comes to sort of travelling and,
(28:24):
you know, women being in hospital all day, every day, got them extra costs than
you know buying a cup of coffee or something to eat a magazine you know all these extra things so,
yeah I think to work,
Yeah, they must have just worked as a team. And my dad looked after my sister
and my mum sort of stayed with me kind of thing. But yeah, it must have been
incredibly difficult for them.
(28:47):
It's really wonderful to hear how your parents came together as a family to
support you and give you the gift of life.
So I just want to say to your parents and to all living donors out there,
you are superheroes and you have my utmost respect.
Yeah, I agree entirely. Yeah, definitely.
(29:07):
So going back to what you said before about post-transplant being on immunosuppressants.
So you've been on immunosuppressant medication for 30 years.
What has been the impact of that on your life?
What are the type of things that you need to be aware of as someone that's been
(29:28):
immunosuppressed for so long?
So i think mainly keeping
out of the sun we're at risk of a very
high risk and i didn't even realize this until about five or
six years ago of getting skin
cancer i think there's something like a 70 to
80 chance that you will get you've
(29:49):
been on immunosuppressants for sort of 20 years
plus you you know you will end up getting skin cancer so it is important to
obviously wear sunblock if you go out in the sun and avoid the sun if possible
and that's not exactly enjoying life and we're experiencing a bit of a heatwave
at the minute but I try to wear a hat,
(30:10):
stay covered up wear sunscreen kind of thing vast majority of the time and also
it can put you at risk of other cancers unfortunately which aren't as common
but you've got a higher chance than the general population on average so in
that regard I would say that.
Anybody i think certainly when you get to a certain age like middle eight so
(30:32):
middle age but i'm 46 as you get into your sort of
your 40s and 50s and 60s you know i think anybody knows
anyway any difference in your body you sort of go to the doctor and
get it checked out sort of thing but i think really important you just feel
more fatigued than usual that kind of thing it's you know you go to your gp
and then sort of more or less say what's going on and request a blood test and
(30:53):
stuff because immunosuppressants they can especially on the eye one it's called
azathioprine and obviously So they all work slightly differently.
But I think generally your immune system suppressed for decades.
It's not going to do your body that much good in the long term, unfortunately.
So you are more susceptible to cancers, especially blood cancer as well.
(31:13):
Leukemia so and also sort of
like your bone mass can deteriorate so i think
you're supposed to have a bone density scan every sort
of two or three years post-transplant i'm not
add one for 20 years so i
should probably get one but they but they yeah so
they can really weaken your bones and that kind of thing and it worries me
(31:36):
obviously that i've got potentially got all this to look forward to
in the next sort of hopefully a long
time to come but just being aware that unfortunately it's
a double-edged sword you know on these this medication is
keeping your kidney healthy end of the day saving
your life and certainly your quality of life but they do come with as well as
the short-term side effects that we discussed earlier you've got your long-term
(31:59):
side effects that you know you just need to be aware of i'd say for anybody
to sort of be worrying about and
stressing about it so as i say i put everything out of my mind to do with
kidneys stuff take my tablets day we think about what they're for you know i
might think about a little bit when i'm going to my next hospital appointments
coming up that kind of thing.
(32:19):
And i'm active on like facebook groups and stuff and comment on people's posts
and that kind of thing and be supportive but don't let it i've never let it
take over my life or control my life in any way if that makes sense i mean i
think that's the best certainly my where i found the best way for it to be.
But yeah, these medications, they were godsend, but obviously,
(32:40):
as I say, they are a double-edged sword, unfortunately.
I'm glad that despite all the challenges that ultimately it's given you a new
lease of life and given you a healthy life and long may that continue.
Thank you so much, Dee. I'm just grateful to be sat here healthy for the last
30 years with a healthy kidney and been able to live life for the full last 30 years.
(33:06):
And some people might be a little bit appalled by that, but holistic life's
for living, if you know what I mean. Take them chances, take them risks.
That's my opinion my thing anyway and i mean at the minute i'm going every,
four months my real appointments i go to sheffield now hospital so yeah so it's
um that's good and i'm very very lucky as well so i know that you're active on social media,
(33:31):
what are your handles for anyone that wants to give you
a follow yeah of course so on instagram bram
and twitter it's the same handle it's is it
still the 90s and the 90s is nine zero so
it's like is it still the nine zero s and on
facebook it's my name kevin malton m-a-l-t-o-n i
am active in various renal transplant and
(33:54):
renal support groups on facebook and see how
everyone's getting in on yeah so that's where
i am okay so saying those
handles again so it's it's still the 90s on
ig and twitter and kevin molten on facebook but as always i will put the links
(34:15):
to those in the description box for anyone so you can just click on and give
kevin a follow and just to add on to that. The 90s was the best decade.
I said it. I will stand on that forever. The 90s was the best decade.
Just putting that out there. I just had to add that.
What final word of encouragement do you have for the listeners? I think,
(34:41):
keep going don't give up we're all at different stages
some of us have had transplants that have worked
extremely well been lucky enough some of our transplants aren't doing
so well some people are waiting for a transplant some people are seriously over
renal failure just keep going every day is another day on this earth we can
keep going and whatever life throws at us we can beat it we all support each
(35:05):
other i'm sure many of the listeners are in online support groups whether whether
it's Facebook or wherever else,
you know, we can all support each other and ask questions of each other and learn from each other.
I learned so much from other people and things.
And, you know, I think there's a lot to be said to supporting each other and
sort of being, being helpful because we're, you know, we're all here together.
(35:27):
We're all warriors together at what stage or where we are in the journey.
So, yeah. So I'd say just keep your chin up and it can be a long road.
I know it can, but you'll get there.
Thank you so much for joining me. Thank you so much for sharing your story.
(35:48):
I know that you will help so many people by sharing your story. So thank you so, so much.
Thank you. Thanks very much, Dave.
Thank you for listening to Diary of a Kidney Warrior podcast.
And don't forget that you can contact me on social media using the handle Diary of a Kidney Warrior.
(36:09):
Please do subscribe to the podcast and please do tell a friend.
New episodes of this podcast are released every other Monday.
Until next time, take care and choose to live. Diary of a Kidney Warrior.
Sharing faith, knowledge, hope and love.
Content Warning. This podcast episode contains discussions of a sensitive nature
that may be triggering for some individuals.
5, 4, 3, 2, 1.
Let's go. Diary of a Kidney Warrior podcast in partnership with Kidney Care UK.
(00:22):
Sharing faith, knowledge, hope and love. Hi, and welcome to Diary of a Kidney Warrior podcast.
Music.
My name is Dee Moore, and I am a kidney warrior.
This podcast is dedicated to encourage, educate, and inspire as we explore all
aspects of kidney disease, related chronic illnesses, and health.
(00:46):
If you have any questions or ideas for topics you would like me to cover,
please get in contact with me on social media using the handle Diary of a Kidney Warrior.
In today's episode, I am bringing you a kidney warrior story.
Now there's always something you can learn from someone's story,
something that can bring inspiration and hope.
(01:09):
My guest today from Derbyshire, England is Kevin Moulton.
Kevin joins me to share about his remarkable remarkable 30-year kidney transplant
story and the lessons he has learned along his Kidney Warrior journey.
Hi and welcome to Diary of a Kidney Warrior podcast. How are you doing today, Kevin?
(01:29):
I'm really well, thanks Dee. How are you? I'm really good.
I'm excited about the interview and everybody knows what I'm about to say because
I say it every time but sincerely do mean I'm I'm excited to record a Kidney
Warrior Story interview because, as I always say,
and it's so true, it is so powerful to learn from someone's lived experience
(01:51):
of chronic kidney disease.
So yes, very excited about our interview.
And without further ado, I'm going to start with my first question.
And my first question is, how did your Kidney Warrior journey begin and how were you diagnosed?
It began in 1986 when I was eight years old.
(02:14):
I'd basically got E. coli poisoning from a joint of beef that I'd had for a
family Sunday dinner, which led to a disease called HUS, which is Pneumatic Uremic Syndrome.
So I was obviously presented with vomiting, diarrhea and local GP sort of thing.
And I was admitted to the local hospital.
(02:34):
Now, I grew up in an army town called Kachur Garrison.
So this was an army hospital not an NHS hospital and so it didn't really have
an emergency department and they did very basic operations though to take your
tonsils out you know that kind of thing fix a broken leg but I went to the local
hospital and they diagnosed me with appendicitis,
(02:56):
so I had my appendix removed and sort of shortly after obviously they must have
monitored my blood results that kind of thing and realized that you know oh
he's not going on here and he's got
renal failure so needless to say i didn't have appendicitis so but i just took
it out for the fun of it i think but so yeah so then i was transferred to the
(03:16):
newcastle's royal victoria infirmary and obviously received i was very ill you
know three months i was in hospital before,
on dialysis obviously they're working to get my kidney function stable to sort of treat the.
Disease or should i say like the poisoning i guess
(03:37):
from the e-coli that kind of thing to obviously
stabilize my body it didn't also infect
my bowel which we'll perhaps come to later and
that's a little bit further down the line but it really ravaged
my body and i think the other thing
as well um my sister at the time she was five years old and she came into hospital
(03:58):
when i was in hospital the army hospital you know first being treated the day
after we're in adjacent rooms and i could see there's a little window and you
could see each other so she contracted the same.
E. coli poisoning basically but she I mean
luckily for her they sort of by the time
they'd been around me they sort of figured out what
(04:21):
was going on so they could treat her straight away I believe she had plasma
transfusions and thankfully for her she didn't have renal failure I think mainly
because I presented my symptoms first and they had an opportunity to sort of
realize what had happened basically so yeah so transferred to Newcastle Royal
Victorian Infirmary and then And a great consultant called Malcolm Coulthard,
he's retired now, but he's an absolutely fantastic man.
(04:43):
He obviously looked after my treatment all the way up until I left paediatrics.
I was 18 when I left paediatrics. I hung on for as long as possible.
Yeah, so that's basically how I contracted kidney disease and what happened initially.
We're winding back slightly. slightly so you
were in hospital three four months and you started dialysis i'm assuming hemodialysis
(05:08):
they put you on they yes they put me on hemodialysis it was just for a short
period so perhaps like a month or two i think just to stabilize things and try and get things going and,
so obviously after i completed my treatment obviously they basically said you
you got i'm I'm going to need a kidney transplant in the future, no matter what.
(05:30):
My kidneys are going to deteriorate. I had renal failure.
I don't know what stage it was at the time, but I was obviously following the diet.
I'm sure many listeners who have renal failure are familiar with,
you know, no potassium, no salt kind of thing.
And as a child, eight years old until, for several more years until I have my
transplant, it's difficult.
(05:51):
And I'm sure lots of parents who have children with renal failure,
they know difficulties.
Is because obviously kids are naturally obviously attracted towards sweets and
crisps and salty foods pizza and that kind of thing so it was a struggle looking
back i think i sort of took it my stride a little bit and accepted it but it
was yeah it was a struggle.
(06:12):
So you were on dialysis for a month and then managed your kidney failure through diet.
So in terms of your everyday life, how did kidney disease impact your childhood?
I was always a small child and very, very sort of underweight almost.
And I think the restrictive diet didn't help that.
(06:35):
I think I would have bulked out a little bit more.
And i believe it may have sort of studied my growth a little bit because i was
always you know the smallest child in the class you know i was always the skinniest child in the class,
but i was very energetic as a child and after my
diagnosis i still played sports as
normal still played out with friends entirely normal and
(06:57):
i was full of energy and you know and say
on sports day or pe at school i'd be like in the
middle of the class you know would be the slowest i wouldn't be the fastest
so in that respect it was i
led a normal sort of childhood you
know kind of thing i mean initially when i first
came out i did have a long line in mother would have
(07:18):
to push it out once a day and that was kept in in case things went pear-shaped
and i could you know immediately go back on dialysis kind of thing i was in
medications to take and as a child i struggled with them taking their medications
i preferred tablet form as opposed to medicine and I remember I used to have
a carry-on every morning,
you know, at least half an hour before school trying to get my tablet down me,
(07:40):
you know, and that must have been quite challenging for my mum thinking back.
But it was a nice experience for myself either, you know, didn't enjoy it.
But yeah, it's a childhood, you know, besides them sort of things,
it was very, very normal and I was lucky to have them years until my sort of.
Kidneys started to fail even further and I had to go back on dialysis at age 15.
(08:03):
I'm grateful for them seven years of sort of normality. It could have been very different.
You know, I could have been facing, waiting for a transplant during that time.
Could have affected my life a lot more negatively.
So you had those years between 8 and 15 where your kidney disease was managed via diet.
And then unfortunately at 15, your kidney function declined further.
(08:27):
And you started dialysis again.
Were you on hemodialysis or peritoneal dialysis?
I was on hemodialysis. I, as I mentioned earlier, I ended up having some small bowel removed.
And at the time, I think it was decided that PD wasn't going to work for me.
(08:50):
So I'd had a fistula put in when I was in hospital originally in 1986.
1996, third attempt, so I've got three scars to show for that.
That was working. So things were in place for me to eventually go on dialysis and things.
So yeah, so it was in October 1994, my GCSE year at school, so my final exams,
(09:12):
and I was back on hemodialysis three times a week.
Well, they sort of tested my dad to see if he was a compatible donor and sort
of gave him up to donate a kidney to me.
And how was that workup process preparing for living donation?
Because I knew that my dad was going to be giving me a kidney and we had a date,
(09:35):
it was going to be the January.
I coped well on dialysis, so I knew it was temporary.
Even though I missed a lot of schooling, I missed three days a week at school, obviously out of five.
So it did affect my GCSE results and that kind of thing.
It was okay and we um as a family we met a venal psychologist obviously to make
(09:55):
sure they were i guess so the family was stable and all the relationships and obviously,
when anyone has a major operation things unfortunately can go
wrong sometimes and you know what would happen if that happened
and how would the family cope and would there be resentment
you know we even went into do i resent my sister that i had renal failure and
she didn't end up with renal failure which is something I'd never even crossed
(10:19):
my mind until that point but it's a fair thing to explore I think yeah so obviously
my dad had his build-up tests and date was given I think January the 13th 1995.
So you had your transplant date it came and what happened next?
Well I remember I was extremely nervous and scared prior to the operation i
(10:41):
think sort of a few days before i remember wanting to run away from the hospital to,
i don't know why but i just wanted to escape from everything i was
obviously very apprehensive very scared i'd lived
a very non i dislike
using the word normal but it's the best way i
can describe it you know a stable life
(11:03):
for seven years before and almost every day
put it out of my mind i had adrenal failure because it
didn't impact me that much besides i would take medication and go to
the hospital for a blood test every six weeks it didn't
impact my life at all and so
to suddenly not suddenly but to go from that to the realization you're
gonna have a kidney transplant obviously you're told of the medication you're
(11:26):
taking what's going to be happening afterwards you're gonna have a draining
you're gonna have a catheter you know will it work you know obviously if it
doesn't work Will I be in a worse off position than I was?
Because I've had a major surgery and that kind of thing. Will my dad be okay?
That kind of thing as well. And my dad's a very...
(11:48):
Reserved person and i
think he's quite uncomfortable in like
a hospital or like a public environment and i felt
a little bit sort of sad for him in
that sense probably the wrong word but you know i really
felt for him you know that sort of thing i know how uncomfortable he
would have been obviously want to do it because his child
(12:09):
anyone would do that but i know it would just
not as plain sailing for him as as you might expect so
yeah so obviously i remember went to the cinema the night before
as a family my mum my dad and myself we went
to watch a movie in newcastle city centre just i
think to take our mind off things and then we'll see
prep for surgery in the morning and yeah things went extremely well mr ross
(12:33):
taylor did the surgery so i think anybody who's sort of been treated in the
newcastle area will have heard of that gentleman he's unfortunately passed away
now but i think he's like a pioneer transplant surgeon i think he,
He probably will stand corrected, but I think he's one of the first surgeons
to perform a renal transplant in the UK and he's very highly regarded.
I speak to consultants now when I go to the current hospital,
(12:56):
when they realise I've been to Newcastle, they're like, oh, did you know?
Everybody knows him, you know, he's a tremendously skilled learner.
Yeah, so I had my transplant and things went really well, quite luckily.
So the journey that you had to this point as
a family having the support of a renal psychologist
to help you through that process how
(13:19):
important would you say that was for you
i think it's extremely important because it
made me obviously i can't speak to my
parents or my sister but it made me think of
things just a little bit differently you
know and it made me realize that you know we're a secure family
it made me realize that my
(13:42):
sister was ill as well and she got better and I didn't but
it also gave me the confidence that you know as we
all sat around talking that my parents were fully on board
and committed to my
father donating me a kidney you know I'm like family dynamic is
different you know there could be people out
there who don't want their husband you know it's it's not
(14:06):
nice that sounds just think you know would i lose my
husband you know that kind of thing i think so yeah so it was really important
and obviously it's not just psychologists obviously dieticians incredibly important
and you know obviously all the other support staff the real sister jean sharp
she was amazing she was there throughout my sort.
(14:27):
Of 10 years as a paediatric patient yeah so in terms of the difference donation
made to your life what difference did receiving that transplant make to your life.
It was just incredible i mean as soon as i had the transplant and i was up and out of bed and,
(14:52):
sort of being discharged and i could if you have an operation
you're a bit groggy for a few days and a week or whatever since i
energy but i had more energy than i ever had in my life and
i didn't realize how much energy i didn't have before so when
i talked about my childhood being you know i was a very active child that
kind of thing i did not know how much
energy i was missing so just
(15:14):
full of energy full of life obviously the
medication the side effects and
things were pretty horrendous but i didn't
have to be on dialysis anymore obviously i could eat what i
wanted as a 15 year old is quite
important part of life and yeah and
i just felt really healthy and really energetic
(15:36):
and obviously there's a lot of stress and worry will the you know will
something go wrong obviously i'm going for bloods initially obviously every
day and then it would be like you know every twice a week once a week so eventually
you know until it tapers off but it was that worry but i was just you know just
full of life full of energy and energy as i said that i never thought i could
(15:57):
be that energetic to be honest.
So i like to have a balanced view when it comes to
the podcast and as much as we cover things
that that are positive i like to also be realistic
and prepare people for what could possibly happen as
well in terms of things that aren't so positive so you
mentioned about the medication and there being side effects what side effects
(16:21):
were you experiencing i had massive weight gain so as i said earlier i was a
very skinny sort of child you know 15 i was still thin and skinny
and i gained a lot of weight seemingly overnight but obviously over a period
of a few weeks how can i put it i went from being a skinny person to an overweight
(16:45):
person and i can imagine it's even worse if somebody is originally perhaps medium
build more of an impact if that makes sense.
Obviously, when I was 15, my facial hair hadn't started growing and it started
growing from side effects from the medication.
I mean, as a male, that didn't bother me, but I can obviously appreciate as
(17:06):
a female, it would be not very nice at all. I would have mood swings.
I would be hungry all the time, just constantly hungry.
I could never be full. I'd be up in the middle of the night making myself a
sandwich, just famished.
And that's a side effect of the medication as well. but i would say i mean at
the time you don't realize it but obviously all these medications things are
(17:28):
going fine they get lowered gradually over a period of time and you know this initial.
Weight gain and mood swings and constant hunger i'd say it really only lasted
a couple of months because perhaps you know i can't remember now because it
was 30 years ago but you know steroids probably heart in those by then because
you know you know and yeah but there was pretty
(17:50):
horrendous and obviously immunocompromised so initially you're
not really supposed to go out in public mixed with too many people it's infections
i remember quite early on i got glandular fever and so i had to go back into
hospital to get antibiotics on a drip obviously treated straight away with strong
antibiotics so because i was immunocompromised to that extent,
(18:12):
so it's like things like you know little things like that would be a little
bit of a pain so yeah Yeah, so it did affect me quite a bit.
I didn't like the way I looked.
Hair was constantly greasy, not how much I washed it.
Bad skin, spots and that kind of thing.
And I know sort of teenagers, every teenager gets spots anyway,
(18:32):
but this was horrendous. And it did actually continue into adulthood,
you know, at least in my early 30s.
I used to have really bad skin.
But saying that, you know, everybody is different. Everyone's side effects will be different.
The side effects do not last forever. And I think that's a lot of things in life.
I think when you're going through a negative situation or something that you
(18:55):
don't like, I've always thought this isn't forever.
It is going to change. And obviously it does because your medication gets lowered
and the side effects are a lot less severe.
And obviously having a functioning kidney sort of outweighs any of that by, you know, tenfold.
Also so as they lowered
(19:15):
the dose of the medication did things like the weight gain reduce and were you
able to then lose weight yes so the weight gain reduced and i think you know
i didn't put an active effort into losing weight i didn't check my diet i didn't do any more exercise
which is obviously the reduction in medication you lose the weight so yeah so,
(19:41):
I was still bulkier than normal and I think that if I wasn't still on the medication
now I think I'd have a little bit less weight on me but this is a huge difference
you know I ballooned when I come out of the transplant but then as it tapered
off you know I lost a fair bit of weight my hair Greasy hair sort of improved.
My skin got a bit better, but it continued to be an issue into adulthood.
(20:07):
I mean, I saw a dermatologist in the end, and now it's sort of more or less
okay, but it used to be pretty horrendous kind of thing.
Yeah, I think definitely as the medication gets lowered, all the side effects
and you lose the weight and things just sort of slowly calm down a bit.
(20:28):
So for someone listening who's due to have a transplant and may be concerned
about side effects, for example, you mentioned about weight gain or the effect on their skin,
what advice do you have for them in terms of being able to cope with things like that?
I think if you go into it with the
(20:50):
knowledge that you are more than likely
probably almost we're certainly going to gain weight after
the medication or the steroids i
think acceptance is a big part
but also it's as i say it's
not forever so i'm even reluctant to say
when you're back on your feet after the operation exercising or
(21:11):
eat better i don't think it has
that much of an impact if that makes sense
it's the actual medication side effects are causing
this so obviously that would be a
good thing to do but i don't think it'd have much of an impact so it's
just basically it's time basically you need to
just sort of be patient and understand
(21:32):
that the weight gain you will lose the
weight eventually as the medication comes down and you'll notice a difference
in your energy levels you'll notice a difference in you'll no longer have to
be on dialysis so obviously the weight gain is a huge negative and then that
negatively perhaps people in different ways.
(21:54):
But obviously the benefits of having a renal transplant a functioning kidney,
obviously far outweigh putting on a couple of stone i think so yeah definitely.
So you've had your kidney for 30 years now, and I think that is absolutely amazing
that you've maintained your kidney for so long and long may it continue and that you stay healthy.
(22:21):
And with this in mind, how have you maintained your kidney?
I mean, what tips do you have for anyone listening to keep that kidney going and keeping healthy?
Think well first of all i was extremely lucky that the kidney i received from
my dad is extremely close match so yeah i've got that going for me already so
(22:45):
i'm extremely lucky in that regard.
In terms of keeping it going and things i don't stress about it i go for a lot
of time not even thinking about renal failure thinking that i've had near kidney
transplant let's go through life.
As you know we'll use that word again but as
steady as possible in them 30 years i've
never missed a dose of my medication you know i
(23:08):
try to take it roughly at the same time every
day and if i only take medication on the morning now so
quite good but i take it every time trying to take
it every time in the morning but i don't stress if it's a couple of.
Hours later or a couple of hours before it's is
what it is but but taking your medication is obviously
the big thing and not forgetting not thinking i'll
(23:29):
just lower the dose myself because i feel like it
for whatever reason take the doctor's advice obviously attend
all the appointments don't be afraid to question your
consultant ask questions clarification nothing worse
than going home after a consultation and thinking i wish i'd
said that or what did they mean by that ask for
different things around things and stuff and just
(23:52):
you know i can't sit here and say oh i'm super
fit and i've never drank alcohol i've never
smoked i've never done whiskey things because
i've done all those things and some listeners might be appalled that
someone with a kidney transplant has acted like that but so
to me it's like obviously it's important to be healthy to eat
properly and stay hydrated and things but i
(24:14):
think not to just stress about it too much and
just live life you only got one life and you have
a transplant you got a second lease of lease on life so i think it's best just
to sort of enjoy it basically within reason yeah so i think yeah just you know
as i said i've been extremely extremely lucky i've sort of maintained things
(24:38):
like as a younger i've stayed away from.
Confrontations and fights and things that sounds a bit
a little bit silly but when you're like 16 17 18 year old and
you're going out you see fighting a couple of things and you know just because
you know you get kicked in your kidney site or punched or something it could
obviously damage your kidney and stuff so just remembering them sort of things
it's been a little bit wary i guess but and besides that it's just i've just
(25:02):
been extremely lucky to be honest with you dude,
So we've talked about how the donation was for yourself and clearly 30 years
later, your kidney is doing well.
I wanted to ask, how is your dad doing?
He's doing really well. He's 74 years of age now. Pretty much fit as a fiddle.
(25:23):
And he's had no complications, obviously, since donating the kidney.
His renal function is absolutely fine. I believe anyway that we can function on one fully working.
Oh, well, obviously we can. but he's yeah he's absolutely fine no complications from the,
donating the kidneys obviously he'd lived to the rest of
30 years of his life with no complications
(25:45):
so it proves that obviously there's no long-term effects from donating
a kidney I remember at the time he was quite sore and things after the operation
he was in more pain than I was I think but he's the donor so I think they just
cut him open and whip it out and not bother him back up when his job is done
so So obviously he had to have time off work, and he was obviously...
(26:08):
I never really thought about this until now, but obviously my mum would have
been there for me, seeing me every day, and then obviously supporting me and things that I needed.
Dad would have been pretty much on his own, and then obviously discharged sooner
than I was, to go and recuperate at home.
I just sort of realised he must have been by himself, kind of thing you know,
(26:32):
support or help around the house yeah so,
It's a very brave thing to do, I think. And I think from a relationship point
of view, I think it must have been quite stressful and put a real strain on their relationship.
Especially when I first became ill.
Obviously, growing up in Catrick and the hospital was in Newcastle, that's an hour away.
(26:54):
We didn't have a car as a child. So my mum was staying in Sunderland nearby to Newcastle.
It's about 10 minutes drive away. My grandad would take her
every day to see me or just stay over at the hospital when accommodation was
available so my parents were separate more or less
like three or four months and my dad came to
visit he had my sister at home you see so he'd
(27:17):
have to get her obviously ready for school and go to work himself do
her evening you know all the dad things you have to do
as a parent to a five-year-old it's
obviously a small child so he'd obviously
have to solo parent and my mum was doing
that and obviously he's got a study in hospital 60 miles
away or 50 miles away you know at one point it
(27:39):
looked like i'd not even be here
kind of thing so i think it must have put a strain on their relationship just
with that you know with everything and i think the finances as well because
obviously my mum at the time she was a waitress a restaurant on an evening and
she She obviously stopped work.
(28:00):
She did get the job back. They kept the job open for her, but she would have
had minimum income, less income.
Dad worked full-time, as I say, but I remember, you know, it was,
can I say, probably just slightly above minimum wage.
So it's not like he was earning sort of a lot of money.
So I do know that financially it would have been a struggle for them.
And obviously the extra costs when it comes to sort of travelling and,
(28:24):
you know, women being in hospital all day, every day, got them extra costs than
you know buying a cup of coffee or something to eat a magazine you know all these extra things so,
yeah I think to work,
Yeah, they must have just worked as a team. And my dad looked after my sister
and my mum sort of stayed with me kind of thing. But yeah, it must have been
incredibly difficult for them.
(28:47):
It's really wonderful to hear how your parents came together as a family to
support you and give you the gift of life.
So I just want to say to your parents and to all living donors out there,
you are superheroes and you have my utmost respect.
Yeah, I agree entirely. Yeah, definitely.
(29:07):
So going back to what you said before about post-transplant being on immunosuppressants.
So you've been on immunosuppressant medication for 30 years.
What has been the impact of that on your life?
What are the type of things that you need to be aware of as someone that's been
(29:28):
immunosuppressed for so long?
So i think mainly keeping
out of the sun we're at risk of a very
high risk and i didn't even realize this until about five or
six years ago of getting skin
cancer i think there's something like a 70 to
80 chance that you will get you've
(29:49):
been on immunosuppressants for sort of 20 years
plus you you know you will end up getting skin cancer so it is important to
obviously wear sunblock if you go out in the sun and avoid the sun if possible
and that's not exactly enjoying life and we're experiencing a bit of a heatwave
at the minute but I try to wear a hat,
(30:10):
stay covered up wear sunscreen kind of thing vast majority of the time and also
it can put you at risk of other cancers unfortunately which aren't as common
but you've got a higher chance than the general population on average so in
that regard I would say that.
Anybody i think certainly when you get to a certain age like middle eight so
(30:32):
middle age but i'm 46 as you get into your sort of
your 40s and 50s and 60s you know i think anybody knows
anyway any difference in your body you sort of go to the doctor and
get it checked out sort of thing but i think really important you just feel
more fatigued than usual that kind of thing it's you know you go to your gp
and then sort of more or less say what's going on and request a blood test and
(30:53):
stuff because immunosuppressants they can especially on the eye one it's called
azathioprine and obviously So they all work slightly differently.
But I think generally your immune system suppressed for decades.
It's not going to do your body that much good in the long term, unfortunately.
So you are more susceptible to cancers, especially blood cancer as well.
(31:13):
Leukemia so and also sort of
like your bone mass can deteriorate so i think
you're supposed to have a bone density scan every sort
of two or three years post-transplant i'm not
add one for 20 years so i
should probably get one but they but they yeah so
they can really weaken your bones and that kind of thing and it worries me
(31:36):
obviously that i've got potentially got all this to look forward to
in the next sort of hopefully a long
time to come but just being aware that unfortunately it's
a double-edged sword you know on these this medication is
keeping your kidney healthy end of the day saving
your life and certainly your quality of life but they do come with as well as
the short-term side effects that we discussed earlier you've got your long-term
(31:59):
side effects that you know you just need to be aware of i'd say for anybody
to sort of be worrying about and
stressing about it so as i say i put everything out of my mind to do with
kidneys stuff take my tablets day we think about what they're for you know i
might think about a little bit when i'm going to my next hospital appointments
coming up that kind of thing.
(32:19):
And i'm active on like facebook groups and stuff and comment on people's posts
and that kind of thing and be supportive but don't let it i've never let it
take over my life or control my life in any way if that makes sense i mean i
think that's the best certainly my where i found the best way for it to be.
But yeah, these medications, they were godsend, but obviously,
(32:40):
as I say, they are a double-edged sword, unfortunately.
I'm glad that despite all the challenges that ultimately it's given you a new
lease of life and given you a healthy life and long may that continue.
Thank you so much, Dee. I'm just grateful to be sat here healthy for the last
30 years with a healthy kidney and been able to live life for the full last 30 years.
(33:06):
And some people might be a little bit appalled by that, but holistic life's
for living, if you know what I mean. Take them chances, take them risks.
That's my opinion my thing anyway and i mean at the minute i'm going every,
four months my real appointments i go to sheffield now hospital so yeah so it's
um that's good and i'm very very lucky as well so i know that you're active on social media,
(33:31):
what are your handles for anyone that wants to give you
a follow yeah of course so on instagram bram
and twitter it's the same handle it's is it
still the 90s and the 90s is nine zero so
it's like is it still the nine zero s and on
facebook it's my name kevin malton m-a-l-t-o-n i
am active in various renal transplant and
(33:54):
renal support groups on facebook and see how
everyone's getting in on yeah so that's where
i am okay so saying those
handles again so it's it's still the 90s on
ig and twitter and kevin molten on facebook but as always i will put the links
(34:15):
to those in the description box for anyone so you can just click on and give
kevin a follow and just to add on to that. The 90s was the best decade.
I said it. I will stand on that forever. The 90s was the best decade.
Just putting that out there. I just had to add that.
What final word of encouragement do you have for the listeners? I think,
(34:41):
keep going don't give up we're all at different stages
some of us have had transplants that have worked
extremely well been lucky enough some of our transplants aren't doing
so well some people are waiting for a transplant some people are seriously over
renal failure just keep going every day is another day on this earth we can
keep going and whatever life throws at us we can beat it we all support each
(35:05):
other i'm sure many of the listeners are in online support groups whether whether
it's Facebook or wherever else,
you know, we can all support each other and ask questions of each other and learn from each other.
I learned so much from other people and things.
And, you know, I think there's a lot to be said to supporting each other and
sort of being, being helpful because we're, you know, we're all here together.
(35:27):
We're all warriors together at what stage or where we are in the journey.
So, yeah. So I'd say just keep your chin up and it can be a long road.
I know it can, but you'll get there.
Thank you so much for joining me. Thank you so much for sharing your story.
(35:48):
I know that you will help so many people by sharing your story. So thank you so, so much.
Thank you. Thanks very much, Dave.
Thank you for listening to Diary of a Kidney Warrior podcast.
And don't forget that you can contact me on social media using the handle Diary of a Kidney Warrior.
(36:09):
Please do subscribe to the podcast and please do tell a friend.
New episodes of this podcast are released every other Monday.
Until next time, take care and choose to live. Diary of a Kidney Warrior.
Sharing faith, knowledge, hope and love.
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