September 2, 2024 • 61 mins
Welcome to a special bonus episode of the Diary of a Kidney Warrior podcast, in partnership with Kidney Care UK, where we celebrate four incredible years of sharing kidney health education, kidney warrior stories encouragement and more. Join us for this unique audio and visual episode as our host, Dee Moore, is joined by co-host and kidney brother, Jerome Espy, from Michigan, USA.
In this milestone episode, Dee reflects on her journey since starting the podcast, discussing the challenges and triumphs she's faced along the way. Dee answers questions from listeners around the world, touching on topics such as staying motivated, the impact of kidney disease on mental health, and the importance of support networks.
From sharing personal anecdotes to offering practical advice, this episode is a testament to the strength and resilience of the kidney warrior community. Whether you're a longtime listener or new to the podcast, this celebration of four years is sure to inspire and uplift.
Don't miss this heartfelt episode filled with gratitude, insights, and the unwavering message to "choose to live."
This extra special episode is available in both audio and visual formats on YouTube: https://youtu.be/WZFTW-wO3qM
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Disclaimer: The views and opinions expressed by Guests on this podcast are those of the Guest and do not necessarily reflect the official policy or position of Kidney Care UK. Any content provided by our Guests are of their opinion, and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
5, 4, 3, 2, 1.
Let's go. Welcome to Diary of a Kidney Warrior podcast in partnership with Kidney Care UK.
Sharing faith, knowledge, hope and love. Hi and welcome to Diary of a Kidney Warrior podcast.
(00:21):
Today we celebrate four years of Diary of a Kidney Warrior podcast.
Podcast today is our bonus extra special audio and visual episode and today
I'm joined by my co-host uncle of the podcast and my kidney brother Jerome Espy
all the way from Michigan America,
(00:44):
how you doing Jerome I am doing so well and I'm so honored to be here with you
to celebrate the four years of Diarrhea of a Kidney Warrior podcast.
And it is just an amazing time. Now, when you started out, would you have thought
that you would have gotten to four years?
No, to be honest, no. I didn't know how it would be.
(01:07):
You hope that when you start something that people will receive it well,
but you just never know if that's going to be the case,
especially because of the change in
my health as well so no
I didn't I didn't know or I
hoped that I would but to be here is definitely
(01:30):
an honor and definitely a surprise yeah and
it just it's just amazing what you've done so far it's such
an honor to be with you as I kind of said before but there
is it's been quite a journey for you and
the great thing about today is that we're taking
questions from all over the internet social media around
(01:50):
the world and you haven't read these questions
right this is this is something that's almost fresh for you right yeah i mean
when i received them i skimmed them to see whether it was a question and who
sent it but I didn't want to have like prepared answers I really wanted to be authentic and to answer.
(02:13):
Yeah genuinely just really I didn't
want to be prepared and have like a script of answer that I wanted you to hear
from my heart so I really tried skim it but try not to read it too much and
then I you know sent them off to you so that I wouldn't be focused on them for
too long Yeah, that's great.
(02:34):
So let's jump in. So this is a question from Kev from Instagram. Okay.
Wants to know, what helps you stay motivated and positive? You talked about
the journey that you've come through since you first started this.
When you started this podcast, you weren't on dialysis. No. But things have changed.
So I'll say this one more time. What helps you stay positive and motivated?
(03:00):
There's different things that help me stay positive and motivated.
The first I would say is God, always, always God.
But also I am blessed to have very supportive people around me.
I have my kidney family, my actual, you know, blood relatives,
(03:22):
friends, church brethren.
I have a very good network of support and and I would say that my children are a significant,
motivator for myself like if it was just me that I had to stay positive for
I don't think that would that would be enough for me like my children have given
(03:47):
me a level of strength to keep going but also like.
Having the podcast, being able to speak with different people,
the different kidney warriors,
the health professionals, when people share their stories and their experiences
and what they've been through,
(04:08):
sometimes I'm sitting there thinking, I haven't been through anything compared
to this person who's sharing their story with me.
And I think it helps to have perspective sometimes when you're in a situation
and it seems like the worst thing that could possibly happen to you.
(04:29):
But when you speak with somebody and hear what they've been through and you
realize actually things could be worse.
And so I think that staying positive is something that I really fight hard to do.
I'm not necessarily by nature the
most positive person that might sound quite quite
(04:51):
surprising to some people but being positive
is something i i make the effort and choice
to do i can be quite pessimistic by
nature but it has been you
know i say the motto every time i end
the podcast i I choose to live and I think
that that choice and I and
(05:13):
I use that word deliberately that choice to choose
to live is what helps me remain positive
yeah that's such a
powerful phrase and I think God gave that to you I would say that and it you
choose to live and you are exemplifying that and everything that you do here
I've got a question here you've done so many podcast now and had so many great
(05:38):
topics and so many great guests.
Sabrina from TikTok has an interesting question.
What is your favorite podcast episode?
Wow. You see, that's a really difficult question for me to answer because I
genuinely love every episode that I've recorded.
(06:00):
Every single episode that I've recorded, I have learned something that has helped me personally.
And I know that through the feedback that I've got from people that it's helped other people as well.
But I have to say, and it's not just because I'm talking to you,
but I have to say it was my first ever episode, first ever interview.
(06:24):
So I'd have to say episode two with Jerome Espy would have to be my favorite
episode because that is, it's my first interview.
I learned so much from you during that process, recording the first three episodes
that I I recorded of the podcast.
(06:45):
I had to re-record all three of them for different reasons.
One, our episode, there was notifications going off, email notifications going off in the interview.
The other one that had the device in the background.
And then the other one I deleted completely by accident. So we had to re-record the whole thing.
(07:06):
So it was definitely a learning curve. everything that i've learned in terms
of interviewing has been by doing the podcast but yeah starting at the beginning
i would have to say my favorite episode is with episode two,
i'm i'm i'm blessing you can't tell because i'm a dark i am blessing but i'm
(07:29):
so honored and thank you for that now that sabrina has and sabrina from tech
talk has another question so i I wanted to slide this one in here too.
If you could shout out one thing to the world, what would it be?
Gosh. One thing to the world.
(07:51):
I think that there's a God-shaped void and hole in everyone's life,
and it doesn't matter what you try and fill it with. Only he can fill it.
That's a great answer. And, you know, had my own journey and I leaned heavily
on the word of God and on God and my relationship with him and family, too.
(08:15):
So it's I agree with everything that you've said. And I just personally am a
fan of your of Diary of a Warrior, of a Kidney Warrior podcast.
One more question from Sabrina. I thought this was a good one.
Who do you fangirl over? Who do you fangirl over? who do I fan girl over oh my gosh,
(08:39):
That list would be very, very long.
But if I was to narrow it down, like if you're like, oh, gosh,
not just these people, but I have to nail it down to some.
So basically, I would say Denzel Washington.
Denzel, I think, is an incredibly talented act.
(09:04):
The way he treats his wife, he's got so much respect for his wife.
He makes opportunities for other
actors by paying off the college tuition fees there's just so much that he does
in terms of the way he carries himself and the movies that he does and the choices
that he's made in those movies so yeah i would say denzel washington and also karen clark Sheard.
(09:29):
She's an amazing gospel singer.
She sings one of my favorite songs of all time, and that's Jesus is a love song.
And there's a note that holds in that song that just inspired me when I was
singing to hold elongated notes.
But she's an amazing singer and has inspired fired a lot of singers famous singers
(09:53):
that you would have that you hear now so i would the list is way way longer
than this but i have to narrow it down and if i was way younger i would say,
john bieger but i'm not young he's he's my sweetheart i love john bieger yeah
but there's way more people but i know i have to keep it short yes yes interesting
(10:18):
fact my wife and i I go to her nephew's church,
J Maas. We go to his church.
But Venetia from TikTok has a question here.
How do you cope with dialysis when traveling? How do you cope with dialysis when traveling?
(10:38):
Well, I haven't really. I recently did go away for a few days,
but I left after having dialysis and then came back in time for the next session.
So I haven't actually done dialysis while traveling.
So I kind of avoided having to. So I haven't been away long enough to have to do it. Okay.
(11:05):
Chudney from TikTok. A lot of questions from TikTok today.
What advice would you give a young person battling with kidney disease to keep them pushing forward?
For a young person, I would remind them that despite having kidney disease, they are still young.
(11:27):
They've still got their whole life ahead of them.
That kidney disease is not just a death sentence.
And I would encourage them to look for the cans rather than they can't.
So focusing on what is in their power to do rather than what they're unable to do.
(11:47):
And I think that as a young person, still pursue your dreams,
still go after the things that you love.
Don't give up. I mean, it might be that you have to do things differently than
you would have before, but don't give up on your dreams.
Keep dreaming. Keep going for it. you've you're young you've got your whole
(12:13):
life ahead of you keep going.
That's amazing advice just keep going um i always joke and tell people every
day i wake up is a good day every day i wake up with a good day that's great
advice this is a question from one of you You're one of the viewers from Rachel and from TikTok.
(12:36):
What has becoming a kidney warrior taught you that is positive or not so positive or even negative?
One of the I think one of the first things that being a kidney warrior taught me was that I'm loved.
(13:03):
And when I was, when this, here we go, when this journey first started for me,
At that time, I kind of was wrestling with feeling that I wasn't loved and I wasn't appreciated.
And so when I was in the hospital and when I first went into the hospital,
(13:26):
I didn't really want people to know.
I didn't really tell people because I expected that I wasn't going to be in
the hospital for very long.
And it was a few weeks in and a friend of mine happened to be texting me.
And when I told her I was in the hospital, she was like, oh my gosh,
when you tell me, like telling me off kind of thing.
(13:47):
And I was like, oh my gosh. And then I started letting people know that I was in the hospital.
And basically then people started visiting me and, you know,
there was a lot of support from my colleagues at work that shout out to Riverside family.
And basically it was like the amount of messages that I got,
(14:10):
the amount of cards and gifts and visits and people came like more than once to see me.
And the hospital I was staying in was the other side of Birmingham.
It was out of the way for the majority of people that came to see me.
So they were making an effort to come to see me.
(14:32):
And when I counted, it was over 60 odd people that came to visit me while I was in the hospital.
And like I said, many of them came more than once.
And so I was surrounded by love
and like that nagging feeling that used to bother me, like no one cared.
(14:54):
Well, that dissipated because I had a clear demonstration of love,
support, compassion for my situation.
And so I would say that that is the first thing that I learned from.
When I became a kidney warrior is that
(15:15):
I am loved yeah it's
awesome some people don't have that and so it's it's great that
you're able to find that in a lot of support it's
amazing and the the flip side of that was the negative but still positive thing
was I also learned who didn't so there were people who I had no expectation
(15:36):
of that were there and people who I had expectation of that weren't there.
So, but I see it as a gift, even though it's a negative thing to find out,
it's still a positive thing because then I see who the genuine people in my
life are rather than the people who say they will be there, but weren't there.
(15:57):
So I would say that those two were the first things that I learned being a kidney warrior.
I'm going to jump on a little bit, and this is from dialysis,
it's Roxiana, Roxiana from dialysis.
What is the worst experience you've had and what is the best experience that
(16:18):
you've had during dialysis?
Worst experience, that's an easy
one. I had a major crash while I was on dialysis and it was frightening.
And when I say a crash, I mean a sudden and very significant drop in my blood pressure.
It was really frightening. I was disorientated.
(16:42):
I was grabbing the staff telling help me kind of thing.
I would say easily that was the worst experience I had on dialysis and the best experience.
And I would add also to that the first session of hemodialysis I would say is
(17:05):
one of my worst experiences because it was something that I never ever wanted to need.
The best experience I think was further on when I started doing the treatment
and realized how much of the fluid that the dialysis process was taking off my body.
(17:30):
Pd unfortunately did wasn't successful
for me and so i it looked like
i was gaining weight but actually it was fluid retention and so the after one
session i was like four pounds lighter that's one session and more has come
off since but i would say when i saw that i was like oh maybe hd isn't that bad after all.
(17:58):
Amina from Instagram has an interesting question that kind of ties into what you just said loosely.
Do you have fluid restrictions? And if so, how do you tackle that?
I do have fluid restrictions and that was very difficult for me to come to terms
with because I've always been, anyone that knows me, I'm the one drinking water.
(18:22):
And so I used to drink at least two litres of water per day.
And to not be able to do that is definitely has been a challenge.
I have to state a disclaimer before I say anything further.
If you do not have an issue with potassium, then let me say that again.
(18:45):
If you don't have an issue with potassium, then I would recommend coconut water
because it is very hydrating.
So you get more hydration for less. so
if you've got a fluid restriction like myself coconut
water is great if you don't have
an issue with potassium and i don't want anyone you know going ahead and drinking
(19:09):
because for some people they cannot but potassium is an issue for me personally
so i'm able to drink coconut water but i'd say that is one of the ways that
i manage not being able to drink as much.
And of course those without saying that
neither d nor i are medical experts yes but that is great advice so that is
(19:35):
great advice i know after my transplant the first thing when i woke up was bring
me water bring me water now Now,
Amina from Instagram has another question. So I wanted to get this to you too.
Do you find food restrictions challenging when eating out and with family gatherings?
(20:03):
No not really i think that i i made the decision quite early on,
when i say quite early on i made the decision when i realized that kidney disease
was part of my life for life i made the decision to change my eating from then
(20:25):
so when i go out it's just a continuation of that.
And fortunately there's a lot more vegetarian and vegan options on the menu.
I'm not vegan, but vegan food is a great way of avoiding like high levels of
(20:45):
protein if you're on a protein restriction.
So yeah, no, the answer is no, I I'm okay. Sorry.
Great. Sharon from TikTok has an interesting question because I know we've had
a lot of discussions and I went through this when I was on dialysis as well
(21:08):
and through end-stage renal disease.
What advice would you give someone who is feeling despair that is on the waiting list for a kidney?
That's Sharon from TikTok.
I know you're waiting as well yourself. But what advice would you give to someone
who is feeling despair that is on the waiting list for a kidney?
(21:33):
I think it goes back to what I said earlier about focusing on what is in your power to do.
And there's an expression that says a watched pot doesn't boil.
Like if you keep focusing on the weight then you'll you'll never be in the moment
that you are and enjoy life that as it is as you're going you know through your everyday life,
(21:59):
my what I would say to somebody is.
Focus on the the good things in your life focus on what is in your power to do,
this time that you have think of it
as a gift to get your
life in order get your life ready get things done
(22:20):
see what you can achieve in the meantime there's unfortunately
nothing that you can do about the weight itself all
you can do is focus on you focus on
your mental health focus on being happy focus on
your family your friends your job all the
things in your life that bring you joy focus on
(22:41):
that good you talked about the 60-plus people that kind of rallied around you
when you're in the hospital Rachel from tick-tock has another question so as
a kidney warrior what is the best way that family and friends can support you I.
(23:05):
I think by educating themselves, I think it can become really grating after
a while when people are asking you the same basic questions,
you know, is it both kidneys that have failed?
I think we did record an episode about what
not to say to somebody with a chronic illness that
(23:27):
actually might be a good lesson for people to
listen to what not to say to people who have
a chronic illness learning the basics of kidney
disease episode three covers that what is
kidney disease I think that when
you have a basic understanding then that will shape how you are around your
(23:48):
loved one understanding that they may be extremely tired understanding that
they make they might make plans with you and have to cancel at the last minute
because they're not feeling well,
understanding that simple tasks that they used to do easily before,
they might not be able to do them now.
Understanding that physically they might not be as strong on some days than others.
(24:14):
Understanding that they might not be able to eat the same things.
It's not sensitive to someone who's on whatever restriction in their they're eating and saying, oh,
it doesn't matter just if you have one or anything to that effect,
they're eating that way to save their own life, literally.
(24:35):
So for me, not.
Undermining their efforts to maintain their health, show empathy and understanding
to what they're going through.
You know, if you don't have to eat certain things in front of them or drink
certain things in front of them, don't, because it might be really difficult
for them to see you eating the type of things they used to enjoy eating and can no longer eat.
(25:01):
So I would say, number one educate yourself
as much as possible and take their lead and don't just assume that they want
certain things ask but also and when you see certain things step in and support them.
(25:22):
That's awesome i want to remind everyone that this
is a special celebratory episode of
diary of a kidney warrior podcast and four
years in four years in and so
just an amazing amazing celebration jonathan from
tiptock and just as a reminder too that we're taking questions from all over
(25:42):
the internet tiktok instagram and different places people that want to know
more about your journey and the hope is is that your journey is going to inspire
and encourage someone else But Jonathan from TikTok said,
what motivates you to continue to create kidney dialysis content and podcasts?
(26:03):
So since we've been friends for a while, I know that you've had some challenging
times where you maybe didn't want to always do it as fervently as you do.
But what motivates you to continue to create the kidney disease content in the podcast?
I would say the listeners. That's my number one motivation.
(26:23):
And when I get a message from somebody thanking me for what I do in terms of
kidney advocacy and the podcast, that motivates me to keep going.
Like literally there's sometimes when I'm X hours into editing and sorting out
the podcast, you know, I'm like, I don't want to do this anymore or whatever, whatever.
(26:44):
I might be having a bad day, but I'm always brought back to the fact that of
why I started the podcast.
And like I said, when messages come through saying,
you know, this episode really helped me, really encouraged me,
then that, that shows me that there is a need for this, that there's people
out there for whom this information is the only way that they're getting this information.
(27:08):
They might not be understanding the information that's shared to them by their health professionals.
And And so the health professionals on the podcast are filling that gap in terms of knowledge for them.
So I feel like it's an important work. And for as long as I have the strength
to do it, I will keep going.
Awesome. Nat and Jack from Instagram have a question that's a little bit longer
(27:33):
and has a couple of elements.
So let me know if you need me to repeat it. repeated. But being a partner of
a sickle cell and kidney warrior, I would like to know how it can affect your partner or family.
How do they cope or how do they help?
And what do you require of them? What expectations do you have of them?
(27:55):
And then sometimes it's hard to know what to do other than just be there.
I think this comes down to the age of the family members that you're talking about.
In terms of my family, my children, I had my children long before I became a
(28:15):
kidney warrior and my children are 20 and 21 now.
Now, but for the six years that I've been on this kidney warrior journey,
the way that I coped with it was I gave them a number of one to 10.
So when they asked me how I am, I gave them a number rather than going into
(28:36):
detail because I didn't want them worrying.
I didn't want them having that pressure or expectation on their shoulders as
my children. I always said to my children, your job is to be a child and go
to school and learn and enjoy life.
I didn't want to put any kind of pressure on them in that way.
(29:00):
And the number kind of gave them an indication of
where I was at in terms of
feeling tired or you know things
being really difficult so they knew to give
me space or or help me
with certain things around the house so I don't know if that method would help
(29:20):
anybody else out there but that is what I did and to be honest with you I don't
and didn't talk about my kidney disease so so much with my family.
I talked with my kidney family because for me.
Who feels it, knows it. I just felt like when you talk to people who don't have
(29:44):
kidney disease, they don't understand it in the way of somebody who's going through it.
So I would kind of keep the conversations light with my family and then with
my kidney family go into more detail.
I think that going back to the point that I made, if people really want to support
(30:06):
their family member, it is about educating themselves,
learn as much as you can so that you can understand the different challenges
that your family member has.
I touched on that earlier, but also recognizing that if they're on prednisolone
or any other kind of steroid treatment, this might, you know, they call it void rage.
(30:29):
This might mean that they're irritable.
They might feel very self-conscious about
the change in their physical appearance you know
some people are affected with weight gain or
acne or different things also they're
the the way that they see themselves their identity may change significantly
(30:51):
they might have been the main breadwinner of the home and can no longer work
in the same way and so they're working less hours and they might not see themselves
in you you know, as being as strong as they used to be.
So recognising that your family member is going through a lot physically,
(31:11):
emotionally, and if it's a case of maybe going counselling with them,
like family counselling, things that you can talk in a safe space,
having facilitated conversations.
I strongly believe in counseling. So I highly recommend family sessions where
(31:33):
you can talk openly and have that in a safe space.
How does that show up with the number system that you've implemented?
Do you wake up in the morning and give the family a number or do they have to
kind of wait and kind of read you first?
And then you say, okay, today I'm at a two or Or today I'm at a seven. How do you never?
(31:56):
It was more if my children asked me, how are you today?
I would give them a number. It was more when they asked me the question rather
than me just volunteering.
Yeah.
Philomena from Dialysis asks, if you could change one thing about dialysis, what would it be?
(32:18):
Oh, wow. It would be the size of the machines like that.
I've seen the heart patients have
like a like a not all, but there's this backpack that some of them have.
If we could have a dialysis machine that was like a backpack that you had on
(32:38):
your shoulder and that you could just carry on with your day but still be doing dialysis.
That would be the one thing that I would change about dialysis.
Make it more portable yeah yeah make
it more portable you're not tied to the chair so
much that's right so Amina has another question so what other support would
(33:03):
you like to be included for kidney patients I think the first and foremost I
know that in some units it is available but unfortunately not in every unit.
I really would love for every single kidney patient to have access to counselling
from a renal psychologist.
(33:24):
That's something I feel mental health is something I feel really,
really, really passionate about.
And so for me, that support should be there for every single kidney patient at every single unit.
I also think that every single kidney patient
should have access to renal social
(33:46):
workers or an advocate that can help in terms of what benefits or additional
support that are available so that people are not suffering in silence and not
knowing actually what help and support is out there.
So I'd say those would be the top two things.
(34:08):
Alan's got a question is from dialysis here.
What is the thing you most regret if there's anything that you regret,
and as a kidney patient, and that you told yourself, you wouldn't do again?
The thing I regret the most was early on in my Kidney Warrior journey.
(34:30):
I think it's because I genuinely thought I was going to get better.
So it was like this was going to go away and I would go back to my life as it was.
And so I am not giving free advertisement here.
So there's a particular restaurant that has like a breakfast deal where you
(34:56):
can have as much bacon and sausage,
eggs and all these high protein.
There's loads of other stuff on the menu that you can have. And basically,
when I came out of the hospital, I was going and I was having these high,
high, high, high protein meals.
(35:17):
And when I look back on that, I think how much damage was I doing to my kidneys
that were so fragile and,
you know, had really plummeted during my time in the hospital.
So my number one regret is not researching immediately about kidneys and then
(35:43):
making changes to my diet and everyday life straight away.
And was this when you, before you actually started dialysis or when you were first physicians?
Yeah, this was when I, this is when I left, was discharged from the hospital.
(36:04):
So long before dialysis, this was like when my journey literally just started.
I know you were, you were avid. Anybody that follows the, you can tell that
she's a bad player this is a question for me okay how important how important
is exercise in your journey,
oh gosh exercise was a massive
(36:27):
part of my life i know probably wouldn't think of
that looking at me now but i used to train four
times a week i was doing boxing circuit training
jogging and weights and I
was really passionate about that and and
I think that by playing
(36:47):
badminton it's kind of kept that element of me
my identity and I'm fully
aware that in terms of maintaining your
health looking after your kidneys you have to
take care of your blood pressure and so exercise is
a way of helping with that so but also not
only the physical aspect of exercise but also the social aspect of exercise
(37:12):
where I've got my badminton family shout out to my badminton club family which
is also an important part as well so it's the physical element of exercise,
but also the social elements of exercise is beneficial and both of which are good for your kidneys.
(37:33):
Risto from TipTot asks a question here. They put it in form,
kind of something that they have gone through.
I find it overwhelming at times and struggle with specific daily activities,
because of the memory of how I like to do things hurts so much.
Did you experience that or you have any advice for Risto?
(37:57):
Yeah, definitely. I mean, going back to what I said about, I used to train four times a week.
And so I desperately tried to hold on to that.
And so I put a lot of pressure on myself to train four times a week,
even though I was a kidney warrior.
(38:17):
And when I had to
come to terms with the fact that this level of
pressure for me was not good for me either emotionally
or physically and for me it was like
a defeat it was like kidney diseases stolen
something else from me but I
had to change my mindset around that and
(38:38):
be like do you know what consistency is more
important than like doing four times
a week and burning yourself out and damaging yourself it's
it's healthier to be consistently training one
time once a week doing a form of exercise that you really love and enjoy than
trying to kill yourself out to do more and end up setting yourself up for failure
(39:03):
and end up doing more damage than good and so I say that to say this this,
that the way that you think about whatever it is in your life makes all the difference.
So rather than saying, you know, I can't do this, I can't do that.
(39:23):
Say, well, I can do this and this is my goal for the day.
So it's like you set yourself one goal of the day and that is so much easier
to achieve than so many, you know, 10 or 15 tasks,
because then you will always feel like you're not achieving.
(39:47):
But if you set short, a low number of tasks and goals for you to do, that is achievable.
And then you can still maintain that feeling of accomplishment and success because
you are achieving something.
So you kind of touched on something around mental health.
(40:10):
So I want to go back to Rachel from TikTok. She's got a question here.
Since you started this journey, what impact has becoming a kidney warrior had
on your mental health and how do you manage that impact on your mental health?
It's definitely been challenging like
(40:32):
it's hard to you know to stay it's hard to to be positive all the time and so
I don't put that pressure on myself to be positive all the time how I mentor
how I manage my mental health is when I need to cry I cry.
(40:54):
I don't try and be like, you know, a person who doesn't have feelings.
I don't, this superhuman person, I'm not, I'm human.
I acknowledge my own limitations and my own humanity.
And there's a saying that says, tears are a language that God understands.
(41:17):
Sometimes I'm just crying and
that just helps release
what I'm going through I tap
into my my network of
of friends and and family and support
so when I'm going through something thing
I speak about it I I
(41:39):
pray I also see a counselor and I do I'm a strong believer that counseling is
beneficial with a qualified counselor so it's kind of a mixture of different things.
I'm also a very creative person. So I sing, I song, I write poetry,
(42:05):
and I find that very cathartic.
So I think that at a young age, somebody that I know had a very,
very, very, very serious mental health breakdown.
And that showed me at a very young age,
(42:25):
the importance of mental health so for
me I just say to myself okay I
cry and I have that time to feel those feelings and then I have to arise I can't
stay there and I think that the key that's the key for me I allow myself to
(42:47):
feel those feelings whatever the feelings are but then I have to arise.
There's a question here from Indeed from Instagram.
This is another long one, so we've got to listen here. With the ever-increasing
chronic kidney disease patients all over the globe,
(43:09):
the infrastructure and research and development in the field of nephrology is
not keeping pace with new patients coming in.
There are very few institutions working for a better tomorrow for people like us.
Research on artificial wearable kidney and bionic kidneys is done only by a
(43:30):
very few number of universities and research facilities.
How should we raise our voice to governments of developed countries so that
more set up programs like this,
that they're opened and finding new solutions to help those that are on dialysis
and in need of transplantation,
(43:51):
especially because of the need, because of poverty, all kinds of issues that pop up with that.
I think it comes down to our local, here in the UK, your local MPs writing to your local MPs.
At the end of the day, their job is to serve the community. And so,
(44:13):
you know, as the kidney community, we are part of their community.
Simple things of posts on social media, having conversations with people.
You know, I say to people, I can turn any conversation into a conversation about kidneys.
You say any word and somehow I can bring it back to kidneys.
(44:35):
Is like, that's how committed I am to sharing about kidney disease.
But especially when it comes to local election time, sad to say,
but ultimately they're always looking for an opportunity to promote themselves.
So, okay, you want to promote yourself, MP.
(44:55):
Here's an issue that needs to be addressed. So, yeah, so definitely lobbying
your local MPs and the wider MPs, the national MPs as well.
Also getting behind charities like Kidney Care UK who are instrumental in helping
policy changes for kidney patients nationwide as well.
(45:21):
So lending your support to charities as well makes a difference. So yeah.
Sabrina from TikTok has an interesting question. How do you come up with the
topics to talk about on Diary of a Kidney Warrior podcast?
Comes from different ways. Like I've done like lives on social media where I've
(45:50):
asked people, what topics would you like me to talk about?
And then I've written down all the suggestions and literally made my way through the suggestions.
I say at the beginning of every episode, if you have any ideas of topics you'd
like me to cover, please get in touch with me.
And people have done so. They've emailed me or inboxed me on social media with ideas for topics.
(46:17):
Sometimes from, well, a lot of the topics have come from my own personal experience.
So for example, the episode that I did on podiatry and CKD was born out of a
problem I had with my feet.
And I didn't realize that having kidney disease would lead to this issue with my feet.
(46:40):
And so I thought, well, okay, this is important for people to know so So they
can avoid going through the pain and discomfort that I went through,
not realizing that this could be a direct aftereffect of having CKD.
Like I mentioned before, I'm a really creative person. So I just get ideas and
(47:02):
I'm like, oh, this will be good.
Sometimes I'm having a conversation and I'm like, that would be a great podcast.
Sometimes when I interview a guest, during that interview comes a topic for another interview.
So the ideas come from all different ways or I'm on social media.
(47:26):
I saw a post by Judy and I thought, wow, that would make a great podcast.
So I inboxed her and said, do you mind if I did a podcast on that?
And she was like, great. And I interviewed her on the podcast.
So, yeah, just lots of different ways that come about.
(47:46):
And sometimes, like I said, I'll be watching something or doing something or
listening to something and think, great idea for the podcast.
So, yeah, it comes from different ways. But like I said, the listeners have
sent in their ideas as well. So that's been a great source of inspiration.
(48:07):
Rachel, back to Rachel from TikTok. We've gotten some really great questions.
So personally, I want to say thank you to all of the followers of Diary of a
Kidney Warrior podcast.
You all are awesome. It's an awesome community. And it's very helpful for anyone
kind of going through this process.
But Rachel from TikTok asks, what are your goals and dreams for yourself and the podcast?
(48:30):
And how can your supporters help you to achieve those goals?
My my dream and goal for myself is is really for diary of a kidney worrying podcast to reach,
bigger and wider audience to reach more people to educate more people to give
(48:52):
hope to more people i think that in terms of what the followers and the listeners
of the podcast can do to help with that is by sharing the podcast.
Obviously I'm subscribing to the podcast, but also podcasts work on algorithms
and algorithms like traffic.
(49:13):
So if you comment on the episodes, give feedback on the episode that drives
the algorithm, and then that puts the podcast in front of more people.
I always say to people that, you know, this is information that can potentially save lives.
So even if an episode isn't relevant to you personally, share it with somebody
(49:37):
who you think it might help.
For example, if you have a family member who has high blood pressure or diabetes,
sharing those episodes.
If you know somebody who, you know, whatever is relevant for that individual
saying, oh, this might help you by sharing the podcast, it helps the algorithm.
(50:01):
It drives up the opportunity for more people to be exposed to the podcast and listen to the episodes.
So like I said, you could potentially save a life, So, you know,
if people know, for example, what the signs are, like the episode 10 signs you
may have kidney disease,
like sharing that could literally save someone's life.
(50:23):
So share, subscribe, comment.
Those are the top things that you could do to support Diary of a Kidney Warrior podcast.
That is so amazing and i'm all the way over here in the united states and i have,
liked shared and followed and everything i know several of the people that i
(50:49):
have known that have gone through chronic kidney disease to end stage renal
disease and to transplant ultimately they talk about how helpful this
podcast is and how much of an impact it has.
Nikki, Nikki from TikTok has a question here.
How can we get more people to know and understand that there is more than one
(51:11):
treatment for kidney disease?
I think it goes back to what I said before about education.
You know, people are educating themselves really. I think that a lot of doctors,
that's how they're trained.
Look at, the medical model but there is alternatives
that you can use to support that natural methods
(51:34):
to support that so yeah
I think it it goes back to the expression
each one teach one as you learn share and
that's what I've tried to do with the podcast as different things have happened
in my life I've shared it on the podcast to hopefully help somebody else either
avoid go through what I've been through or help them to navigate going through
(51:59):
them if they're going through it, if they are going through it.
So, yeah, share, educate.
This is another question from me. How important is your faith as you go through this journey?
Oh, gosh, number one, really? Yeah.
Number one um i
(52:21):
don't i don't know how i really like i
couldn't imagine trying to go through this without god and having my faith in
god and knowing that he's got my back in every single situation that i go through
even when i let him down he never lets me down so i'd say yeah number one.
(52:45):
Awesome we've gone through quite a few questions here
and yeah we have but just personally i want to say thank you to everyone that
contributed questions and everyone that is listening and like share follow encourage
people to to watch listen to dowry of a kitty warrior podcast podcast.
(53:08):
There's so much misinformation, disinformation about this whole process.
And so what Dee is doing here is just doing such a great job.
And just really, as my kidney sister, it's really amazing to be a part of this.
And so I'm just blown away at this opportunity and so godly proud of you for all that you're doing.
(53:30):
It's really changing lives and
shaking up the whole process of how people understand what we go through.
It's a small in the relatively of people on the planet, but mighty group of
people and increasing, unfortunately, that are going through this process.
(53:51):
And so what you're doing is making a phenomenal difference.
As I just say, keep it up and don't lose hope.
Encourage as many people as
possible. I do want to leave I have one more question I want to ask you.
How can people that are supporting those that are going through this process,
(54:15):
either chronic kidney disease,
dialysis, waiting for transplantation, how can they get help?
There's the journey of the kidney
warrior, but there is the journey of the supporter of the kidney warrior.
What advice would you give those people that are supporting people that are
(54:36):
going through this process.
I think it goes back to education as well, finding out as much information as you can.
But here in the UK, Kidney Care UK, the support that they offer isn't just for the kidney patient.
It's also for the family of the kidney patient.
(54:59):
So there is support out there that you can tap into by just calling them or emailing them.
And also what I said again about counselling, I really do believe that counselling
provides a lot of help for individuals and families.
(55:20):
And also there's helplines, you know, like Samaritans and other helplines that
you can call for support as well.
So, yeah, there is support out there.
Don't feel like because you're not
the patient that you can't speak out
(55:41):
or or reach out for help there is a an episode supporting care partners so there's
a lot of information in that episode that may help you as well but my my advice
really is don't suffer in silence Your mental health is important.
You can't be there for your family member if you aren't getting the input that you need as well.
(56:07):
You can't give out from an empty cup. You have to be poured into.
So don't suffer in silence. Do seek help.
Awesome. Hey, so what's next for Diary of a Kidney Warrior podcast?
What's next? What's coming up? What should we look forward to?
What's next for Diary of a Kidney Warrior podcast? Well, I might,
(56:29):
you see, I have to be careful because when I say something, I have to follow
through it because this is a visual. You have to do it.
You have to be a person of your word. But I am looking at more visual podcasts
as well, because I think audio, people love the audio only, but people also want to see you as well.
(56:50):
So I'm looking at possibly I'm not making any big statements,
but I'm looking at possibly doing more visual podcasts.
You see, I've got things in the pipeline, but I know this really sounds like
a cop-out, but I can't actually say what's in the pipeline, but it's all good and it's all exciting.
(57:17):
And I know that it will help. I say this a lot, but it's true.
I know it will help so many people, but yeah, look out for more visual. This is what I will say.
Look out for more visual episodes of the podcast.
Awesome. See, I couldn't believe the interview without asking that.
Maybe you'd give us a tip.
Give us a sneak peek behind the curtain. Give us some breaking news.
(57:41):
Halle Berry on Fantastic.
But yeah, thank you so much for joining me, Jerome, for interviewing me.
It's just weird being asked questions like I'm, you know, the one usually asking
the questions, but, you know, I couldn't think of anybody who I'd want to be
(58:02):
interviewing me more than yourself.
So thank you so much. You're genuinely my kidney brother and have been there.
You see, when I talk about my network, I'm talking about you included in that.
That there's been many a Zoom call or WhatsApp call where I'm like,
you're like, how are you? And all you see is me crying. You're like, okay, you're not okay.
(58:26):
But where you have support, you know, give them support.
And I do want to publicly acknowledge you for that because you have been amazing
to me. And I love you so much.
Thank you for your support.
And thank you for joining me today. And I want to say finally to the listeners,
because this will be an audio only and audio and visual version of this podcast.
(58:50):
I want to thank the listeners and the watchers of this podcast today.
Thank you for your ongoing support. You have been with me for four years now.
And for those who have joined since, who, you know, I see downloads from everywhere
from Australia to Zambia.
(59:11):
It's truly an international podcast. I thank you for subscribing.
Thank you for downloading.
Thank you for your comments. And please, as I said, it really helps the algorithm.
If you comment, if you can do a comment on every episode, that would be fantastic if you can do that.
But please share the podcast.
(59:32):
Please tell your friends, post on social media, get the word out there,
because literally you could save a life by sharing this information.
Information but again I want to thank you all and to Kidney Care UK the team
in Kidney Care UK thank you for your support your belief in me and.
(59:53):
She hasn't want me to say this publicly, but I do want to acknowledge publicly,
Debra, thank you for believing in me and for, you know, what you've done to help my journey.
With kidney disease.
You know, there's people that are in your life for a reason and a season,
(01:00:16):
season and you were instrumental in that first season of my journey.
And I really appreciate you for that.
But yeah, I want to end by saying I'm so grateful, so honored to be in this unique position.
This is a road that I never, ever thought that I would be on,
(01:00:39):
but so much good has come out of it. and I'm so, so grateful.
So please continue on with me in this journey.
And till next time, take care and choose to live.
Thank you for listening to Diary of a Kidney Warrior podcast.
(01:01:01):
And don't forget that you can contact me on social media using the handle Diary of a Kidney Warrior.
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.
(01:01:25):
Sharing faith, knowledge, hope, and love.
5, 4, 3, 2, 1.
Let's go. Welcome to Diary of a Kidney Warrior podcast in partnership with Kidney Care UK.
Sharing faith, knowledge, hope and love. Hi and welcome to Diary of a Kidney Warrior podcast.
(00:21):
Today we celebrate four years of Diary of a Kidney Warrior podcast.
Podcast today is our bonus extra special audio and visual episode and today
I'm joined by my co-host uncle of the podcast and my kidney brother Jerome Espy
all the way from Michigan America,
(00:44):
how you doing Jerome I am doing so well and I'm so honored to be here with you
to celebrate the four years of Diarrhea of a Kidney Warrior podcast.
And it is just an amazing time. Now, when you started out, would you have thought
that you would have gotten to four years?
No, to be honest, no. I didn't know how it would be.
(01:07):
You hope that when you start something that people will receive it well,
but you just never know if that's going to be the case,
especially because of the change in
my health as well so no
I didn't I didn't know or I
hoped that I would but to be here is definitely
(01:30):
an honor and definitely a surprise yeah and
it just it's just amazing what you've done so far it's such
an honor to be with you as I kind of said before but there
is it's been quite a journey for you and
the great thing about today is that we're taking
questions from all over the internet social media around
(01:50):
the world and you haven't read these questions
right this is this is something that's almost fresh for you right yeah i mean
when i received them i skimmed them to see whether it was a question and who
sent it but I didn't want to have like prepared answers I really wanted to be authentic and to answer.
(02:13):
Yeah genuinely just really I didn't
want to be prepared and have like a script of answer that I wanted you to hear
from my heart so I really tried skim it but try not to read it too much and
then I you know sent them off to you so that I wouldn't be focused on them for
too long Yeah, that's great.
(02:34):
So let's jump in. So this is a question from Kev from Instagram. Okay.
Wants to know, what helps you stay motivated and positive? You talked about
the journey that you've come through since you first started this.
When you started this podcast, you weren't on dialysis. No. But things have changed.
So I'll say this one more time. What helps you stay positive and motivated?
(03:00):
There's different things that help me stay positive and motivated.
The first I would say is God, always, always God.
But also I am blessed to have very supportive people around me.
I have my kidney family, my actual, you know, blood relatives,
(03:22):
friends, church brethren.
I have a very good network of support and and I would say that my children are a significant,
motivator for myself like if it was just me that I had to stay positive for
I don't think that would that would be enough for me like my children have given
(03:47):
me a level of strength to keep going but also like.
Having the podcast, being able to speak with different people,
the different kidney warriors,
the health professionals, when people share their stories and their experiences
and what they've been through,
(04:08):
sometimes I'm sitting there thinking, I haven't been through anything compared
to this person who's sharing their story with me.
And I think it helps to have perspective sometimes when you're in a situation
and it seems like the worst thing that could possibly happen to you.
(04:29):
But when you speak with somebody and hear what they've been through and you
realize actually things could be worse.
And so I think that staying positive is something that I really fight hard to do.
I'm not necessarily by nature the
most positive person that might sound quite quite
(04:51):
surprising to some people but being positive
is something i i make the effort and choice
to do i can be quite pessimistic by
nature but it has been you
know i say the motto every time i end
the podcast i I choose to live and I think
that that choice and I and
(05:13):
I use that word deliberately that choice to choose
to live is what helps me remain positive
yeah that's such a
powerful phrase and I think God gave that to you I would say that and it you
choose to live and you are exemplifying that and everything that you do here
I've got a question here you've done so many podcast now and had so many great
(05:38):
topics and so many great guests.
Sabrina from TikTok has an interesting question.
What is your favorite podcast episode?
Wow. You see, that's a really difficult question for me to answer because I
genuinely love every episode that I've recorded.
(06:00):
Every single episode that I've recorded, I have learned something that has helped me personally.
And I know that through the feedback that I've got from people that it's helped other people as well.
But I have to say, and it's not just because I'm talking to you,
but I have to say it was my first ever episode, first ever interview.
(06:24):
So I'd have to say episode two with Jerome Espy would have to be my favorite
episode because that is, it's my first interview.
I learned so much from you during that process, recording the first three episodes
that I I recorded of the podcast.
(06:45):
I had to re-record all three of them for different reasons.
One, our episode, there was notifications going off, email notifications going off in the interview.
The other one that had the device in the background.
And then the other one I deleted completely by accident. So we had to re-record the whole thing.
(07:06):
So it was definitely a learning curve. everything that i've learned in terms
of interviewing has been by doing the podcast but yeah starting at the beginning
i would have to say my favorite episode is with episode two,
i'm i'm i'm blessing you can't tell because i'm a dark i am blessing but i'm
(07:29):
so honored and thank you for that now that sabrina has and sabrina from tech
talk has another question so i I wanted to slide this one in here too.
If you could shout out one thing to the world, what would it be?
Gosh. One thing to the world.
(07:51):
I think that there's a God-shaped void and hole in everyone's life,
and it doesn't matter what you try and fill it with. Only he can fill it.
That's a great answer. And, you know, had my own journey and I leaned heavily
on the word of God and on God and my relationship with him and family, too.
(08:15):
So it's I agree with everything that you've said. And I just personally am a
fan of your of Diary of a Warrior, of a Kidney Warrior podcast.
One more question from Sabrina. I thought this was a good one.
Who do you fangirl over? Who do you fangirl over? who do I fan girl over oh my gosh,
(08:39):
That list would be very, very long.
But if I was to narrow it down, like if you're like, oh, gosh,
not just these people, but I have to nail it down to some.
So basically, I would say Denzel Washington.
Denzel, I think, is an incredibly talented act.
(09:04):
The way he treats his wife, he's got so much respect for his wife.
He makes opportunities for other
actors by paying off the college tuition fees there's just so much that he does
in terms of the way he carries himself and the movies that he does and the choices
that he's made in those movies so yeah i would say denzel washington and also karen clark Sheard.
(09:29):
She's an amazing gospel singer.
She sings one of my favorite songs of all time, and that's Jesus is a love song.
And there's a note that holds in that song that just inspired me when I was
singing to hold elongated notes.
But she's an amazing singer and has inspired fired a lot of singers famous singers
(09:53):
that you would have that you hear now so i would the list is way way longer
than this but i have to narrow it down and if i was way younger i would say,
john bieger but i'm not young he's he's my sweetheart i love john bieger yeah
but there's way more people but i know i have to keep it short yes yes interesting
(10:18):
fact my wife and i I go to her nephew's church,
J Maas. We go to his church.
But Venetia from TikTok has a question here.
How do you cope with dialysis when traveling? How do you cope with dialysis when traveling?
(10:38):
Well, I haven't really. I recently did go away for a few days,
but I left after having dialysis and then came back in time for the next session.
So I haven't actually done dialysis while traveling.
So I kind of avoided having to. So I haven't been away long enough to have to do it. Okay.
(11:05):
Chudney from TikTok. A lot of questions from TikTok today.
What advice would you give a young person battling with kidney disease to keep them pushing forward?
For a young person, I would remind them that despite having kidney disease, they are still young.
(11:27):
They've still got their whole life ahead of them.
That kidney disease is not just a death sentence.
And I would encourage them to look for the cans rather than they can't.
So focusing on what is in their power to do rather than what they're unable to do.
(11:47):
And I think that as a young person, still pursue your dreams,
still go after the things that you love.
Don't give up. I mean, it might be that you have to do things differently than
you would have before, but don't give up on your dreams.
Keep dreaming. Keep going for it. you've you're young you've got your whole
(12:13):
life ahead of you keep going.
That's amazing advice just keep going um i always joke and tell people every
day i wake up is a good day every day i wake up with a good day that's great
advice this is a question from one of you You're one of the viewers from Rachel and from TikTok.
(12:36):
What has becoming a kidney warrior taught you that is positive or not so positive or even negative?
One of the I think one of the first things that being a kidney warrior taught me was that I'm loved.
(13:03):
And when I was, when this, here we go, when this journey first started for me,
At that time, I kind of was wrestling with feeling that I wasn't loved and I wasn't appreciated.
And so when I was in the hospital and when I first went into the hospital,
(13:26):
I didn't really want people to know.
I didn't really tell people because I expected that I wasn't going to be in
the hospital for very long.
And it was a few weeks in and a friend of mine happened to be texting me.
And when I told her I was in the hospital, she was like, oh my gosh,
when you tell me, like telling me off kind of thing.
(13:47):
And I was like, oh my gosh. And then I started letting people know that I was in the hospital.
And basically then people started visiting me and, you know,
there was a lot of support from my colleagues at work that shout out to Riverside family.
And basically it was like the amount of messages that I got,
(14:10):
the amount of cards and gifts and visits and people came like more than once to see me.
And the hospital I was staying in was the other side of Birmingham.
It was out of the way for the majority of people that came to see me.
So they were making an effort to come to see me.
(14:32):
And when I counted, it was over 60 odd people that came to visit me while I was in the hospital.
And like I said, many of them came more than once.
And so I was surrounded by love
and like that nagging feeling that used to bother me, like no one cared.
(14:54):
Well, that dissipated because I had a clear demonstration of love,
support, compassion for my situation.
And so I would say that that is the first thing that I learned from.
When I became a kidney warrior is that
(15:15):
I am loved yeah it's
awesome some people don't have that and so it's it's great that
you're able to find that in a lot of support it's
amazing and the the flip side of that was the negative but still positive thing
was I also learned who didn't so there were people who I had no expectation
(15:36):
of that were there and people who I had expectation of that weren't there.
So, but I see it as a gift, even though it's a negative thing to find out,
it's still a positive thing because then I see who the genuine people in my
life are rather than the people who say they will be there, but weren't there.
(15:57):
So I would say that those two were the first things that I learned being a kidney warrior.
I'm going to jump on a little bit, and this is from dialysis,
it's Roxiana, Roxiana from dialysis.
What is the worst experience you've had and what is the best experience that
(16:18):
you've had during dialysis?
Worst experience, that's an easy
one. I had a major crash while I was on dialysis and it was frightening.
And when I say a crash, I mean a sudden and very significant drop in my blood pressure.
It was really frightening. I was disorientated.
(16:42):
I was grabbing the staff telling help me kind of thing.
I would say easily that was the worst experience I had on dialysis and the best experience.
And I would add also to that the first session of hemodialysis I would say is
(17:05):
one of my worst experiences because it was something that I never ever wanted to need.
The best experience I think was further on when I started doing the treatment
and realized how much of the fluid that the dialysis process was taking off my body.
(17:30):
Pd unfortunately did wasn't successful
for me and so i it looked like
i was gaining weight but actually it was fluid retention and so the after one
session i was like four pounds lighter that's one session and more has come
off since but i would say when i saw that i was like oh maybe hd isn't that bad after all.
(17:58):
Amina from Instagram has an interesting question that kind of ties into what you just said loosely.
Do you have fluid restrictions? And if so, how do you tackle that?
I do have fluid restrictions and that was very difficult for me to come to terms
with because I've always been, anyone that knows me, I'm the one drinking water.
(18:22):
And so I used to drink at least two litres of water per day.
And to not be able to do that is definitely has been a challenge.
I have to state a disclaimer before I say anything further.
If you do not have an issue with potassium, then let me say that again.
(18:45):
If you don't have an issue with potassium, then I would recommend coconut water
because it is very hydrating.
So you get more hydration for less. so
if you've got a fluid restriction like myself coconut
water is great if you don't have
an issue with potassium and i don't want anyone you know going ahead and drinking
(19:09):
because for some people they cannot but potassium is an issue for me personally
so i'm able to drink coconut water but i'd say that is one of the ways that
i manage not being able to drink as much.
And of course those without saying that
neither d nor i are medical experts yes but that is great advice so that is
(19:35):
great advice i know after my transplant the first thing when i woke up was bring
me water bring me water now Now,
Amina from Instagram has another question. So I wanted to get this to you too.
Do you find food restrictions challenging when eating out and with family gatherings?
(20:03):
No not really i think that i i made the decision quite early on,
when i say quite early on i made the decision when i realized that kidney disease
was part of my life for life i made the decision to change my eating from then
(20:25):
so when i go out it's just a continuation of that.
And fortunately there's a lot more vegetarian and vegan options on the menu.
I'm not vegan, but vegan food is a great way of avoiding like high levels of
(20:45):
protein if you're on a protein restriction.
So yeah, no, the answer is no, I I'm okay. Sorry.
Great. Sharon from TikTok has an interesting question because I know we've had
a lot of discussions and I went through this when I was on dialysis as well
(21:08):
and through end-stage renal disease.
What advice would you give someone who is feeling despair that is on the waiting list for a kidney?
That's Sharon from TikTok.
I know you're waiting as well yourself. But what advice would you give to someone
who is feeling despair that is on the waiting list for a kidney?
(21:33):
I think it goes back to what I said earlier about focusing on what is in your power to do.
And there's an expression that says a watched pot doesn't boil.
Like if you keep focusing on the weight then you'll you'll never be in the moment
that you are and enjoy life that as it is as you're going you know through your everyday life,
(21:59):
my what I would say to somebody is.
Focus on the the good things in your life focus on what is in your power to do,
this time that you have think of it
as a gift to get your
life in order get your life ready get things done
(22:20):
see what you can achieve in the meantime there's unfortunately
nothing that you can do about the weight itself all
you can do is focus on you focus on
your mental health focus on being happy focus on
your family your friends your job all the
things in your life that bring you joy focus on
(22:41):
that good you talked about the 60-plus people that kind of rallied around you
when you're in the hospital Rachel from tick-tock has another question so as
a kidney warrior what is the best way that family and friends can support you I.
(23:05):
I think by educating themselves, I think it can become really grating after
a while when people are asking you the same basic questions,
you know, is it both kidneys that have failed?
I think we did record an episode about what
not to say to somebody with a chronic illness that
(23:27):
actually might be a good lesson for people to
listen to what not to say to people who have
a chronic illness learning the basics of kidney
disease episode three covers that what is
kidney disease I think that when
you have a basic understanding then that will shape how you are around your
(23:48):
loved one understanding that they may be extremely tired understanding that
they make they might make plans with you and have to cancel at the last minute
because they're not feeling well,
understanding that simple tasks that they used to do easily before,
they might not be able to do them now.
Understanding that physically they might not be as strong on some days than others.
(24:14):
Understanding that they might not be able to eat the same things.
It's not sensitive to someone who's on whatever restriction in their they're eating and saying, oh,
it doesn't matter just if you have one or anything to that effect,
they're eating that way to save their own life, literally.
(24:35):
So for me, not.
Undermining their efforts to maintain their health, show empathy and understanding
to what they're going through.
You know, if you don't have to eat certain things in front of them or drink
certain things in front of them, don't, because it might be really difficult
for them to see you eating the type of things they used to enjoy eating and can no longer eat.
(25:01):
So I would say, number one educate yourself
as much as possible and take their lead and don't just assume that they want
certain things ask but also and when you see certain things step in and support them.
(25:22):
That's awesome i want to remind everyone that this
is a special celebratory episode of
diary of a kidney warrior podcast and four
years in four years in and so
just an amazing amazing celebration jonathan from
tiptock and just as a reminder too that we're taking questions from all over
(25:42):
the internet tiktok instagram and different places people that want to know
more about your journey and the hope is is that your journey is going to inspire
and encourage someone else But Jonathan from TikTok said,
what motivates you to continue to create kidney dialysis content and podcasts?
(26:03):
So since we've been friends for a while, I know that you've had some challenging
times where you maybe didn't want to always do it as fervently as you do.
But what motivates you to continue to create the kidney disease content in the podcast?
I would say the listeners. That's my number one motivation.
(26:23):
And when I get a message from somebody thanking me for what I do in terms of
kidney advocacy and the podcast, that motivates me to keep going.
Like literally there's sometimes when I'm X hours into editing and sorting out
the podcast, you know, I'm like, I don't want to do this anymore or whatever, whatever.
(26:44):
I might be having a bad day, but I'm always brought back to the fact that of
why I started the podcast.
And like I said, when messages come through saying,
you know, this episode really helped me, really encouraged me,
then that, that shows me that there is a need for this, that there's people
out there for whom this information is the only way that they're getting this information.
(27:08):
They might not be understanding the information that's shared to them by their health professionals.
And And so the health professionals on the podcast are filling that gap in terms of knowledge for them.
So I feel like it's an important work. And for as long as I have the strength
to do it, I will keep going.
Awesome. Nat and Jack from Instagram have a question that's a little bit longer
(27:33):
and has a couple of elements.
So let me know if you need me to repeat it. repeated. But being a partner of
a sickle cell and kidney warrior, I would like to know how it can affect your partner or family.
How do they cope or how do they help?
And what do you require of them? What expectations do you have of them?
(27:55):
And then sometimes it's hard to know what to do other than just be there.
I think this comes down to the age of the family members that you're talking about.
In terms of my family, my children, I had my children long before I became a
(28:15):
kidney warrior and my children are 20 and 21 now.
Now, but for the six years that I've been on this kidney warrior journey,
the way that I coped with it was I gave them a number of one to 10.
So when they asked me how I am, I gave them a number rather than going into
(28:36):
detail because I didn't want them worrying.
I didn't want them having that pressure or expectation on their shoulders as
my children. I always said to my children, your job is to be a child and go
to school and learn and enjoy life.
I didn't want to put any kind of pressure on them in that way.
(29:00):
And the number kind of gave them an indication of
where I was at in terms of
feeling tired or you know things
being really difficult so they knew to give
me space or or help me
with certain things around the house so I don't know if that method would help
(29:20):
anybody else out there but that is what I did and to be honest with you I don't
and didn't talk about my kidney disease so so much with my family.
I talked with my kidney family because for me.
Who feels it, knows it. I just felt like when you talk to people who don't have
(29:44):
kidney disease, they don't understand it in the way of somebody who's going through it.
So I would kind of keep the conversations light with my family and then with
my kidney family go into more detail.
I think that going back to the point that I made, if people really want to support
(30:06):
their family member, it is about educating themselves,
learn as much as you can so that you can understand the different challenges
that your family member has.
I touched on that earlier, but also recognizing that if they're on prednisolone
or any other kind of steroid treatment, this might, you know, they call it void rage.
(30:29):
This might mean that they're irritable.
They might feel very self-conscious about
the change in their physical appearance you know
some people are affected with weight gain or
acne or different things also they're
the the way that they see themselves their identity may change significantly
(30:51):
they might have been the main breadwinner of the home and can no longer work
in the same way and so they're working less hours and they might not see themselves
in you you know, as being as strong as they used to be.
So recognising that your family member is going through a lot physically,
(31:11):
emotionally, and if it's a case of maybe going counselling with them,
like family counselling, things that you can talk in a safe space,
having facilitated conversations.
I strongly believe in counseling. So I highly recommend family sessions where
(31:33):
you can talk openly and have that in a safe space.
How does that show up with the number system that you've implemented?
Do you wake up in the morning and give the family a number or do they have to
kind of wait and kind of read you first?
And then you say, okay, today I'm at a two or Or today I'm at a seven. How do you never?
(31:56):
It was more if my children asked me, how are you today?
I would give them a number. It was more when they asked me the question rather
than me just volunteering.
Yeah.
Philomena from Dialysis asks, if you could change one thing about dialysis, what would it be?
(32:18):
Oh, wow. It would be the size of the machines like that.
I've seen the heart patients have
like a like a not all, but there's this backpack that some of them have.
If we could have a dialysis machine that was like a backpack that you had on
(32:38):
your shoulder and that you could just carry on with your day but still be doing dialysis.
That would be the one thing that I would change about dialysis.
Make it more portable yeah yeah make
it more portable you're not tied to the chair so
much that's right so Amina has another question so what other support would
(33:03):
you like to be included for kidney patients I think the first and foremost I
know that in some units it is available but unfortunately not in every unit.
I really would love for every single kidney patient to have access to counselling
from a renal psychologist.
(33:24):
That's something I feel mental health is something I feel really,
really, really passionate about.
And so for me, that support should be there for every single kidney patient at every single unit.
I also think that every single kidney patient
should have access to renal social
(33:46):
workers or an advocate that can help in terms of what benefits or additional
support that are available so that people are not suffering in silence and not
knowing actually what help and support is out there.
So I'd say those would be the top two things.
(34:08):
Alan's got a question is from dialysis here.
What is the thing you most regret if there's anything that you regret,
and as a kidney patient, and that you told yourself, you wouldn't do again?
The thing I regret the most was early on in my Kidney Warrior journey.
(34:30):
I think it's because I genuinely thought I was going to get better.
So it was like this was going to go away and I would go back to my life as it was.
And so I am not giving free advertisement here.
So there's a particular restaurant that has like a breakfast deal where you
(34:56):
can have as much bacon and sausage,
eggs and all these high protein.
There's loads of other stuff on the menu that you can have. And basically,
when I came out of the hospital, I was going and I was having these high,
high, high, high protein meals.
(35:17):
And when I look back on that, I think how much damage was I doing to my kidneys
that were so fragile and,
you know, had really plummeted during my time in the hospital.
So my number one regret is not researching immediately about kidneys and then
(35:43):
making changes to my diet and everyday life straight away.
And was this when you, before you actually started dialysis or when you were first physicians?
Yeah, this was when I, this is when I left, was discharged from the hospital.
(36:04):
So long before dialysis, this was like when my journey literally just started.
I know you were, you were avid. Anybody that follows the, you can tell that
she's a bad player this is a question for me okay how important how important
is exercise in your journey,
oh gosh exercise was a massive
(36:27):
part of my life i know probably wouldn't think of
that looking at me now but i used to train four
times a week i was doing boxing circuit training
jogging and weights and I
was really passionate about that and and
I think that by playing
(36:47):
badminton it's kind of kept that element of me
my identity and I'm fully
aware that in terms of maintaining your
health looking after your kidneys you have to
take care of your blood pressure and so exercise is
a way of helping with that so but also not
only the physical aspect of exercise but also the social aspect of exercise
(37:12):
where I've got my badminton family shout out to my badminton club family which
is also an important part as well so it's the physical element of exercise,
but also the social elements of exercise is beneficial and both of which are good for your kidneys.
(37:33):
Risto from TipTot asks a question here. They put it in form,
kind of something that they have gone through.
I find it overwhelming at times and struggle with specific daily activities,
because of the memory of how I like to do things hurts so much.
Did you experience that or you have any advice for Risto?
(37:57):
Yeah, definitely. I mean, going back to what I said about, I used to train four times a week.
And so I desperately tried to hold on to that.
And so I put a lot of pressure on myself to train four times a week,
even though I was a kidney warrior.
(38:17):
And when I had to
come to terms with the fact that this level of
pressure for me was not good for me either emotionally
or physically and for me it was like
a defeat it was like kidney diseases stolen
something else from me but I
had to change my mindset around that and
(38:38):
be like do you know what consistency is more
important than like doing four times
a week and burning yourself out and damaging yourself it's
it's healthier to be consistently training one
time once a week doing a form of exercise that you really love and enjoy than
trying to kill yourself out to do more and end up setting yourself up for failure
(39:03):
and end up doing more damage than good and so I say that to say this this,
that the way that you think about whatever it is in your life makes all the difference.
So rather than saying, you know, I can't do this, I can't do that.
(39:23):
Say, well, I can do this and this is my goal for the day.
So it's like you set yourself one goal of the day and that is so much easier
to achieve than so many, you know, 10 or 15 tasks,
because then you will always feel like you're not achieving.
(39:47):
But if you set short, a low number of tasks and goals for you to do, that is achievable.
And then you can still maintain that feeling of accomplishment and success because
you are achieving something.
So you kind of touched on something around mental health.
(40:10):
So I want to go back to Rachel from TikTok. She's got a question here.
Since you started this journey, what impact has becoming a kidney warrior had
on your mental health and how do you manage that impact on your mental health?
It's definitely been challenging like
(40:32):
it's hard to you know to stay it's hard to to be positive all the time and so
I don't put that pressure on myself to be positive all the time how I mentor
how I manage my mental health is when I need to cry I cry.
(40:54):
I don't try and be like, you know, a person who doesn't have feelings.
I don't, this superhuman person, I'm not, I'm human.
I acknowledge my own limitations and my own humanity.
And there's a saying that says, tears are a language that God understands.
(41:17):
Sometimes I'm just crying and
that just helps release
what I'm going through I tap
into my my network of
of friends and and family and support
so when I'm going through something thing
I speak about it I I
(41:39):
pray I also see a counselor and I do I'm a strong believer that counseling is
beneficial with a qualified counselor so it's kind of a mixture of different things.
I'm also a very creative person. So I sing, I song, I write poetry,
(42:05):
and I find that very cathartic.
So I think that at a young age, somebody that I know had a very,
very, very, very serious mental health breakdown.
And that showed me at a very young age,
(42:25):
the importance of mental health so for
me I just say to myself okay I
cry and I have that time to feel those feelings and then I have to arise I can't
stay there and I think that the key that's the key for me I allow myself to
(42:47):
feel those feelings whatever the feelings are but then I have to arise.
There's a question here from Indeed from Instagram.
This is another long one, so we've got to listen here. With the ever-increasing
chronic kidney disease patients all over the globe,
(43:09):
the infrastructure and research and development in the field of nephrology is
not keeping pace with new patients coming in.
There are very few institutions working for a better tomorrow for people like us.
Research on artificial wearable kidney and bionic kidneys is done only by a
(43:30):
very few number of universities and research facilities.
How should we raise our voice to governments of developed countries so that
more set up programs like this,
that they're opened and finding new solutions to help those that are on dialysis
and in need of transplantation,
(43:51):
especially because of the need, because of poverty, all kinds of issues that pop up with that.
I think it comes down to our local, here in the UK, your local MPs writing to your local MPs.
At the end of the day, their job is to serve the community. And so,
(44:13):
you know, as the kidney community, we are part of their community.
Simple things of posts on social media, having conversations with people.
You know, I say to people, I can turn any conversation into a conversation about kidneys.
You say any word and somehow I can bring it back to kidneys.
(44:35):
Is like, that's how committed I am to sharing about kidney disease.
But especially when it comes to local election time, sad to say,
but ultimately they're always looking for an opportunity to promote themselves.
So, okay, you want to promote yourself, MP.
(44:55):
Here's an issue that needs to be addressed. So, yeah, so definitely lobbying
your local MPs and the wider MPs, the national MPs as well.
Also getting behind charities like Kidney Care UK who are instrumental in helping
policy changes for kidney patients nationwide as well.
(45:21):
So lending your support to charities as well makes a difference. So yeah.
Sabrina from TikTok has an interesting question. How do you come up with the
topics to talk about on Diary of a Kidney Warrior podcast?
Comes from different ways. Like I've done like lives on social media where I've
(45:50):
asked people, what topics would you like me to talk about?
And then I've written down all the suggestions and literally made my way through the suggestions.
I say at the beginning of every episode, if you have any ideas of topics you'd
like me to cover, please get in touch with me.
And people have done so. They've emailed me or inboxed me on social media with ideas for topics.
(46:17):
Sometimes from, well, a lot of the topics have come from my own personal experience.
So for example, the episode that I did on podiatry and CKD was born out of a
problem I had with my feet.
And I didn't realize that having kidney disease would lead to this issue with my feet.
(46:40):
And so I thought, well, okay, this is important for people to know so So they
can avoid going through the pain and discomfort that I went through,
not realizing that this could be a direct aftereffect of having CKD.
Like I mentioned before, I'm a really creative person. So I just get ideas and
(47:02):
I'm like, oh, this will be good.
Sometimes I'm having a conversation and I'm like, that would be a great podcast.
Sometimes when I interview a guest, during that interview comes a topic for another interview.
So the ideas come from all different ways or I'm on social media.
(47:26):
I saw a post by Judy and I thought, wow, that would make a great podcast.
So I inboxed her and said, do you mind if I did a podcast on that?
And she was like, great. And I interviewed her on the podcast.
So, yeah, just lots of different ways that come about.
(47:46):
And sometimes, like I said, I'll be watching something or doing something or
listening to something and think, great idea for the podcast.
So, yeah, it comes from different ways. But like I said, the listeners have
sent in their ideas as well. So that's been a great source of inspiration.
(48:07):
Rachel, back to Rachel from TikTok. We've gotten some really great questions.
So personally, I want to say thank you to all of the followers of Diary of a
Kidney Warrior podcast.
You all are awesome. It's an awesome community. And it's very helpful for anyone
kind of going through this process.
But Rachel from TikTok asks, what are your goals and dreams for yourself and the podcast?
(48:30):
And how can your supporters help you to achieve those goals?
My my dream and goal for myself is is really for diary of a kidney worrying podcast to reach,
bigger and wider audience to reach more people to educate more people to give
(48:52):
hope to more people i think that in terms of what the followers and the listeners
of the podcast can do to help with that is by sharing the podcast.
Obviously I'm subscribing to the podcast, but also podcasts work on algorithms
and algorithms like traffic.
(49:13):
So if you comment on the episodes, give feedback on the episode that drives
the algorithm, and then that puts the podcast in front of more people.
I always say to people that, you know, this is information that can potentially save lives.
So even if an episode isn't relevant to you personally, share it with somebody
(49:37):
who you think it might help.
For example, if you have a family member who has high blood pressure or diabetes,
sharing those episodes.
If you know somebody who, you know, whatever is relevant for that individual
saying, oh, this might help you by sharing the podcast, it helps the algorithm.
(50:01):
It drives up the opportunity for more people to be exposed to the podcast and listen to the episodes.
So like I said, you could potentially save a life, So, you know,
if people know, for example, what the signs are, like the episode 10 signs you
may have kidney disease,
like sharing that could literally save someone's life.
(50:23):
So share, subscribe, comment.
Those are the top things that you could do to support Diary of a Kidney Warrior podcast.
That is so amazing and i'm all the way over here in the united states and i have,
liked shared and followed and everything i know several of the people that i
(50:49):
have known that have gone through chronic kidney disease to end stage renal
disease and to transplant ultimately they talk about how helpful this
podcast is and how much of an impact it has.
Nikki, Nikki from TikTok has a question here.
How can we get more people to know and understand that there is more than one
(51:11):
treatment for kidney disease?
I think it goes back to what I said before about education.
You know, people are educating themselves really. I think that a lot of doctors,
that's how they're trained.
Look at, the medical model but there is alternatives
that you can use to support that natural methods
(51:34):
to support that so yeah
I think it it goes back to the expression
each one teach one as you learn share and
that's what I've tried to do with the podcast as different things have happened
in my life I've shared it on the podcast to hopefully help somebody else either
avoid go through what I've been through or help them to navigate going through
(51:59):
them if they're going through it, if they are going through it.
So, yeah, share, educate.
This is another question from me. How important is your faith as you go through this journey?
Oh, gosh, number one, really? Yeah.
Number one um i
(52:21):
don't i don't know how i really like i
couldn't imagine trying to go through this without god and having my faith in
god and knowing that he's got my back in every single situation that i go through
even when i let him down he never lets me down so i'd say yeah number one.
(52:45):
Awesome we've gone through quite a few questions here
and yeah we have but just personally i want to say thank you to everyone that
contributed questions and everyone that is listening and like share follow encourage
people to to watch listen to dowry of a kitty warrior podcast podcast.
(53:08):
There's so much misinformation, disinformation about this whole process.
And so what Dee is doing here is just doing such a great job.
And just really, as my kidney sister, it's really amazing to be a part of this.
And so I'm just blown away at this opportunity and so godly proud of you for all that you're doing.
(53:30):
It's really changing lives and
shaking up the whole process of how people understand what we go through.
It's a small in the relatively of people on the planet, but mighty group of
people and increasing, unfortunately, that are going through this process.
(53:51):
And so what you're doing is making a phenomenal difference.
As I just say, keep it up and don't lose hope.
Encourage as many people as
possible. I do want to leave I have one more question I want to ask you.
How can people that are supporting those that are going through this process,
(54:15):
either chronic kidney disease,
dialysis, waiting for transplantation, how can they get help?
There's the journey of the kidney
warrior, but there is the journey of the supporter of the kidney warrior.
What advice would you give those people that are supporting people that are
(54:36):
going through this process.
I think it goes back to education as well, finding out as much information as you can.
But here in the UK, Kidney Care UK, the support that they offer isn't just for the kidney patient.
It's also for the family of the kidney patient.
(54:59):
So there is support out there that you can tap into by just calling them or emailing them.
And also what I said again about counselling, I really do believe that counselling
provides a lot of help for individuals and families.
(55:20):
And also there's helplines, you know, like Samaritans and other helplines that
you can call for support as well.
So, yeah, there is support out there.
Don't feel like because you're not
the patient that you can't speak out
(55:41):
or or reach out for help there is a an episode supporting care partners so there's
a lot of information in that episode that may help you as well but my my advice
really is don't suffer in silence Your mental health is important.
You can't be there for your family member if you aren't getting the input that you need as well.
(56:07):
You can't give out from an empty cup. You have to be poured into.
So don't suffer in silence. Do seek help.
Awesome. Hey, so what's next for Diary of a Kidney Warrior podcast?
What's next? What's coming up? What should we look forward to?
What's next for Diary of a Kidney Warrior podcast? Well, I might,
(56:29):
you see, I have to be careful because when I say something, I have to follow
through it because this is a visual. You have to do it.
You have to be a person of your word. But I am looking at more visual podcasts
as well, because I think audio, people love the audio only, but people also want to see you as well.
(56:50):
So I'm looking at possibly I'm not making any big statements,
but I'm looking at possibly doing more visual podcasts.
You see, I've got things in the pipeline, but I know this really sounds like
a cop-out, but I can't actually say what's in the pipeline, but it's all good and it's all exciting.
(57:17):
And I know that it will help. I say this a lot, but it's true.
I know it will help so many people, but yeah, look out for more visual. This is what I will say.
Look out for more visual episodes of the podcast.
Awesome. See, I couldn't believe the interview without asking that.
Maybe you'd give us a tip.
Give us a sneak peek behind the curtain. Give us some breaking news.
(57:41):
Halle Berry on Fantastic.
But yeah, thank you so much for joining me, Jerome, for interviewing me.
It's just weird being asked questions like I'm, you know, the one usually asking
the questions, but, you know, I couldn't think of anybody who I'd want to be
(58:02):
interviewing me more than yourself.
So thank you so much. You're genuinely my kidney brother and have been there.
You see, when I talk about my network, I'm talking about you included in that.
That there's been many a Zoom call or WhatsApp call where I'm like,
you're like, how are you? And all you see is me crying. You're like, okay, you're not okay.
(58:26):
But where you have support, you know, give them support.
And I do want to publicly acknowledge you for that because you have been amazing
to me. And I love you so much.
Thank you for your support.
And thank you for joining me today. And I want to say finally to the listeners,
because this will be an audio only and audio and visual version of this podcast.
(58:50):
I want to thank the listeners and the watchers of this podcast today.
Thank you for your ongoing support. You have been with me for four years now.
And for those who have joined since, who, you know, I see downloads from everywhere
from Australia to Zambia.
(59:11):
It's truly an international podcast. I thank you for subscribing.
Thank you for downloading.
Thank you for your comments. And please, as I said, it really helps the algorithm.
If you comment, if you can do a comment on every episode, that would be fantastic if you can do that.
But please share the podcast.
(59:32):
Please tell your friends, post on social media, get the word out there,
because literally you could save a life by sharing this information.
Information but again I want to thank you all and to Kidney Care UK the team
in Kidney Care UK thank you for your support your belief in me and.
(59:53):
She hasn't want me to say this publicly, but I do want to acknowledge publicly,
Debra, thank you for believing in me and for, you know, what you've done to help my journey.
With kidney disease.
You know, there's people that are in your life for a reason and a season,
(01:00:16):
season and you were instrumental in that first season of my journey.
And I really appreciate you for that.
But yeah, I want to end by saying I'm so grateful, so honored to be in this unique position.
This is a road that I never, ever thought that I would be on,
(01:00:39):
but so much good has come out of it. and I'm so, so grateful.
So please continue on with me in this journey.
And till next time, take care and choose to live.
Thank you for listening to Diary of a Kidney Warrior podcast.
(01:01:01):
And don't forget that you can contact me on social media using the handle Diary of a Kidney Warrior.
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.
(01:01:25):
Sharing faith, knowledge, hope, and love.
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