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Speaker 1: If you got lunch with Pippa Hudson on Cape Talk,

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Speaker 1: join the conversation.

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Speaker 2: Now.

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Speaker 1: I know we usually leave our medical conversations for a Friday,

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Speaker 1: and there will still be one tomorrow, but two things

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Speaker 1: happened to Intercept today that made me think we should

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Speaker 1: make an exception and talk about a medical issue on

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Speaker 1: a Thursday as well. One is the fact that today

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Speaker 1: is World Kidney Day. The other is the thing you

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Speaker 1: cannot but have noticed that we are still experiencing extreme

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Speaker 1: heat in Cape Town. I mean, thankfully it does seem

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Speaker 1: to be on the wane, but it was still registering

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Speaker 1: thirty three degrees or so on my thermometer driving in

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Speaker 1: this morning. And I know that's a bit inflated being

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Speaker 1: in a car, but still gives you a sense of

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Speaker 1: just how hot it is out there. So I want

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Speaker 1: to talk today about heat and kidney's and the importance

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Speaker 1: of proper hydration for kidney health. And we're going to

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Speaker 1: have that conversation with understands very well how quickly a

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Speaker 1: hydration issue can turn into a medical crisis for someone

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Speaker 1: who is suffering from kidney disease, and who knows all

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Speaker 1: too well the reality of living with a kidney condition.

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Speaker 1: Stella de Cock is the managing director of an organ

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Speaker 1: donor awareness program called TELL, which stands for Transplant Education

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Speaker 1: for Living Legacies. As she has herself a kidney patient,

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Speaker 1: she has been on the waiting list for an organ

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Speaker 1: a donor organ rather for more than a decade now

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Speaker 1: and is lucky to have access to regular dialysis to

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Speaker 1: keep her going. So she has a unique perspective on

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Speaker 1: the story, and a very personal one. And Stella, it's

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Speaker 1: really great to have you with us this afternoon to

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Speaker 1: share it with us again. Thanks for joining us.

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Speaker 2: Thank you so much, Fitpa, and also to the listeners.

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Speaker 1: It's really good to have you with us again, Stella.

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Speaker 1: Kidney health something most people take for granted and never

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Speaker 1: even think about until, of course, it's not there anymore,

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Speaker 1: and they suddenly face the reality of just how vital

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Speaker 1: to our well being these organs are. Won't you start

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Speaker 1: by just briefly telling us about your own journey with

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Speaker 1: kidney disease and how it presented.

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Speaker 2: So Yes, in twenty eleven, I went to the gp couse.

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Speaker 2: My foot was painful. Thought, okay, maybe at the age

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Speaker 2: of thirty five. I'm not giving out because I couldn't

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Speaker 2: figure out what else could be wrong, and they then

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Speaker 2: did sorrow blood tests and I've phoned me and said,

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Speaker 2: you must please go to the ICU. You've got in

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Speaker 2: stage renal failure. You've only got eight percent kidney function left.

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Speaker 2: And I thought, no, there must be something wrong, Chris.

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Speaker 2: My food is painful, there's nothing else wrong with me.

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Speaker 2: And yeah, then unfortunately the diagnosis was confirmed. And since then,

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Speaker 2: you know, I've been on dialysis. So that means three

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Speaker 2: times a week, for four hours of a time, a

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Speaker 2: machine does the function that my kidneys don't do at all.

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Speaker 1: I mean, it's extraordinary. That said, I'm sure a lot

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Speaker 1: of people are shaking their heads in near disbelief to

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Speaker 1: think that you could be that sick and have so

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Speaker 1: little kidney function left and be walking around not even

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Speaker 1: knowing about it. But that is the reality of many

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Speaker 1: kidney conditions, not so that they only present with symptoms

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Speaker 1: that are noticeable when they're very far advanced.

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Speaker 2: That is so true, And that's why they call it

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Speaker 2: also silent disease, because you can lose up to ninety

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Speaker 2: percent of your kidney function without showing any signs or symptoms.

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Speaker 1: Yeah, and that's the reason we wanted to do this

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Speaker 1: interview today to remind everybody of that fact and the

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Speaker 1: fact that you should not just take for granted that

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Speaker 1: everything's fine simply because you're not showing any symptoms no stella.

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Speaker 1: A week like the week we've had here in Capetan,

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Speaker 1: where the temperatures have topped forty degrees on some days

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Speaker 1: and are still around thirty five today is a good

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Speaker 1: opportunity to reflect on the role of hydration and the

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Speaker 1: impact of heat on kidney health. In your case, you

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Speaker 1: were living a normal life. You didn't even know you

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Speaker 1: had this condition. And it's always it's not always the

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Speaker 1: case that you present with a warning signal, but for

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Speaker 1: some people, the first sign of something going wrong is

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Speaker 1: an indication that they are not getting enough proper hydration.

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Speaker 1: Do you want to talk to us a little bit

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Speaker 1: about the role that sufficient water intake place in kidney disease.

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Speaker 2: So your kidneys use you know, fluids to make sure

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Speaker 2: that they can filter the waste, remove toxin, and also

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Speaker 2: your electrolyte and you know, mineral balance, So your kidneys

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Speaker 2: need enough fluid to function properly. And when you become dehydrated,

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Speaker 2: and that's usually not just ones, but on a regular basis,

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Speaker 2: your kidneys take strain and if they lose their function,

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Speaker 2: they can't get it back. So that is why, you know,

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Speaker 2: especially when it's so hot you know in Cape Town,

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Speaker 2: that you make sure that you get enough water, because

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Speaker 2: the thing is, with sugary drinks and energy drinks and

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Speaker 2: alcohol and excessive caffeine that dehydrates you. So again your

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Speaker 2: kidneys struggle, and you don't want your kidneys to struggle.

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Speaker 1: I'm so glad you mentioned the other kinds of fluid

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Speaker 1: because we were already a question in from Ursula asking

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Speaker 1: whether drinking tea all day is sufficient. She says, I

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Speaker 1: don't drink water, but I do drink plenty of tea.

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Speaker 1: Is that good enough? Stella?

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Speaker 2: So the thing is it depends on what tea you drink,

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Speaker 2: because again normal tea has got caffeine in it. So

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Speaker 2: again that would be vuebus would be a better, you

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Speaker 2: know option, but unfortunately H two is the way to go.

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Speaker 2: You know, water is your bits the option to to

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Speaker 2: you know, help your body to get rid of the tuxins.

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Speaker 2: So I'm not saying, you know, don't drink your tea,

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Speaker 2: but try and at least get some just straightforward clean

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Speaker 2: water in as well.

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Speaker 1: Okay, on the flip side, somebody asking whether it's possible

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Speaker 1: to drink too much water and affect your kidneys negatively

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Speaker 1: by that. Their comment is, I've got family members who

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Speaker 1: drink a lot more than the recommended eight glasses a day,

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Speaker 1: and they are both on dialysis, is the comment.

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Speaker 2: And the thing is, if you're on dialysis, then you

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Speaker 2: or fluid will normally be restricted. The thing is just

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Speaker 2: if it depends on your body type, how active you are,

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Speaker 2: how hot it is, you know that all that, so

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Speaker 2: that eight losses is a recommended for the kind of

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Speaker 2: like average Joe, but I mean, like obviously a kid

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Speaker 2: that might be too much because then they flashtres system

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Speaker 2: as well. So speak to a healthcare provider if you

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Speaker 2: are worried if you are drinking too much, you know,

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Speaker 2: a health water You.

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Speaker 1: Mentioned there that somebody on dialysis has to be so

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Speaker 1: careful about restricting their fluid, and that might sound counterintuitive

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Speaker 1: to people. Stilla, do you want to explain to us

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Speaker 1: what you mean? I mean when you say fluid restricted,

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Speaker 1: you have to literally measure your intake by the minute litter,

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Speaker 1: don't you?

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Speaker 2: Yeah, Because the thing is like me my kidneys because

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Speaker 2: I was diagnosed so late and I started dialysis. After

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Speaker 2: about two years, I stopped urinating because my kidneys is

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Speaker 2: now about the size of raisins. A normal kidney is

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Speaker 2: about the size of your fest So I don't have

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Speaker 2: any kidney function. So all the fluid that I take

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Speaker 2: in stay in my body, and that is why I'm

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Speaker 2: restricted on what I eat and what I drink, because

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Speaker 2: everything that I take in stay in my body. Where

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Speaker 2: a healthy person, the kidneys will get rid of it.

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Speaker 2: And that get why they get rid of it. It's

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Speaker 2: by you peeing it out. So you ping out the toxins,

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Speaker 2: you pin out the extra fluid. Okay.

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Speaker 1: So that's I think very educational for those who don't,

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Speaker 1: who have been lucky enough not to have to learn

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Speaker 1: more about dialysis, that's something to be aware of that.

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Speaker 1: It is literally a case of restricting all fluid in

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Speaker 1: that carefully. Stella, I mean you talk about, you know,

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Speaker 1: in the normal functioning kidneys, you pee out the excess,

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Speaker 1: you pee out the toxins, et cetera. Actually, our you'urine

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Speaker 1: output is a very good way of monitoring a kidney

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Speaker 1: function and health and alerting you quite if some things

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Speaker 1: going wrong.

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Speaker 2: Not so that is true. And this is again you know,

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Speaker 2: if it's too dark, then it means you need to

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Speaker 2: hydrate more. If it's very very very light, you know

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Speaker 2: there could be you know, the other reasons for it.

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Speaker 2: So it's again if you think, listen, this looks weird.

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Speaker 2: If there's a change in your nation, go and speak

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Speaker 2: to a healthcare provider, Go and speak to the guys

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Speaker 2: at the clinic. They will advise you. They can do

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Speaker 2: it normal urine depstick and they can also start picking

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Speaker 2: up Listen, your kidney function. There's something wrong here, so

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Speaker 2: urine is a good indication as well.

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Speaker 1: Lionel is asking about something called a GF artist for kidneys.

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Speaker 1: Is that something you're familiar with stella?

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Speaker 2: Yes, so that is your glown pronounce the word now.

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Speaker 2: But it's basically to test how the filters in your

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Speaker 2: kidneys are working. So normally what they would start off

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Speaker 2: with is to say they do a urea and create

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Speaker 2: a nine and if there's saying something wrong, the egf

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Speaker 2: or will tell you what is your kidney function. So

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Speaker 2: when they did the egf or with me, it showed

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Speaker 2: eight percent, so it works in percentage. So people usually

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Speaker 2: start our halysis when it's fifteen percent at lower.

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Speaker 1: Okay, I did a quick google there, and I'm not surprised.

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Speaker 1: It is a tricky trick you want to wrap your

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Speaker 1: tongue around. It's the estimated glow marular filtration rate. I

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Speaker 1: think I've just put it at too, But that's what

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Speaker 1: it stands for for those who are interested and reading here.

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Speaker 1: The National Kidney Foundation saying a ninety or higher would

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Speaker 1: be considered normal sixty to eighty nine and indicator that

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Speaker 1: you might be in early stage kidney disease. And obviously

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Speaker 1: if it's lower than that, it's cause for immediate concern

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Speaker 1: and intervention. So Lionel, thank you for asking the question.

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Speaker 1: Just for anybody coming in midway to this conversation, we

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Speaker 1: are talking this World Kidney Day to Stella Decak, who

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Speaker 1: is a self a dialis this patient who has been

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Speaker 1: living with enstage renal failure for over a decade now

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Speaker 1: and is doing a lot of work to raise awareness

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Speaker 1: firstly around kidney health and the importance of hydration, but

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Speaker 1: also around the other alternative to dialysis, Stella, and we

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Speaker 1: want to talk a little bit bit more about that

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Speaker 1: now because the cost of dialysis. As you've said, there's

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Speaker 1: a huge personal cost in terms of the time it

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Speaker 1: takes for you to have to be going in for

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Speaker 1: treatment three times a week. There is the lost opportunity

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Speaker 1: cost of all the time you spend sitting in a

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Speaker 1: dialysis chair. There is of course the medical cost and

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Speaker 1: whether you're on medical aid to cover that or have

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Speaker 1: to rely on public sector access and all of the

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Speaker 1: issues of disparate access that comes with that debate. But interestingly,

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Speaker 1: in our earlier conversation prior to this interview, you also

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Speaker 1: flagged for me a very high environmental cost to dialysis.

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Speaker 1: Won't you expand on that for me please?

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Speaker 2: Yeah, So, dialysis use a lot of water, it uses

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Speaker 2: a lot of electricity and single plastic cues, so in

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Speaker 2: the long term it's just not good for the environment.

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Speaker 2: And you know people who especially when we had the

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Speaker 2: load shedding, that was kind of like a major issue,

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Speaker 2: you know, for the dialysis centers. I'm sure when Kitin

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Speaker 2: had that water restrictions, that also had a major impact

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Speaker 2: on the guys because you need a lot of purified water,

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Speaker 2: so that also is an impact on the environment.

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Speaker 1: Okay, Still, I mean part of the reason for having

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Speaker 1: this conversation today and talking to you specifically is not

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Speaker 1: just to share your own lived experience, but to talk

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Speaker 1: about the ideal scenario, which says we are able to

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Speaker 1: get patients off dialysis and reduce the impact that it

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Speaker 1: has on the planet and on their lives, and that

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Speaker 1: is by offering them the alternative of a kidney replacement.

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Speaker 1: To call it what it is, bluntly, a kidney donation.

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Speaker 1: Now let's talk a little bit about how lightlier an

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Speaker 1: outcome that is. In the South African context. You have

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Speaker 1: been living with dialysis as your alternative since I think

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Speaker 1: you said twenty eleven was your diagnosis, so in fact

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Speaker 1: it's fifteen years now. At any point in that fifteen

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Speaker 1: years have you been offered the option of a kidney

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Speaker 1: transplant or is it simply a case of you go

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Speaker 1: onto the list and.

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Speaker 2: You wait, so for the deceased waiting list. I've never

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Speaker 2: been called up, but I had four potential donors come forward.

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Speaker 2: That's a living donor, So that's someone who said, listen,

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Speaker 2: I think I'm well enough and I want to donate

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Speaker 2: my kidney. But they go through extensive medical tests to

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Speaker 2: make sure a living donor is well enough to be

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Speaker 2: in the same position before and off to the donation

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Speaker 2: because they will never put the living donor at risk

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Speaker 2: to help someone else. And unfortunately, that very last test

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Speaker 2: that they did, because it almost takes a year for

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Speaker 2: all of these tests to be done, the last is

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Speaker 2: that they did. They found out that the kidney function,

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Speaker 2: the one kidney function was very low and the other

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Speaker 2: kidney function was high. And they will always give you

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Speaker 2: the lower function in kidney, but that kidney function was

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Speaker 2: too low to be transplanted. So yeah, it's unfortunately South

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Speaker 2: Africa's got a very low donation rate and one of

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Speaker 2: the reasons for that is the simple fact that people

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Speaker 2: don't know what they loved ones would what their wishes were. Yeah,

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Speaker 2: so if they know what the wishes are, they are

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Speaker 2: going to be, you know, more likely to agree to

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Speaker 2: organ donation. That's just one of the factors and it

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Speaker 2: has an influence.

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Speaker 1: And it's the reason your organization exists. I mean that

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Speaker 1: it's a very clever acronym tell because you know the

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Speaker 1: messages in the word, you must tell your family. We've

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Speaker 1: spoken about this many times before on the show, that

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Speaker 1: it's all well and good to register as an organ

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Speaker 1: donor and sign up on the Organ Dona Foundation website,

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Speaker 1: which by the way, is ODF dot org dot z.

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Speaker 1: But the next step in that process is so essential

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Speaker 1: to tell your family that you've done so and to

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Speaker 1: share with them your wishes that they should respect that

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Speaker 1: wish when the time comes, because Stella, they are the

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Speaker 1: ones who will ultimately make the decision to say yes

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Speaker 1: or no if they are approached about the possibility of

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Speaker 1: donating your organs.

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Speaker 2: Not so yes. That is so true, Papa, because we

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Speaker 2: always say registration shows intent, but it's not consent. Your

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Speaker 2: family needs to give consent to organ and show donation.

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Speaker 2: You can save seven people's lives, and that's including kids

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Speaker 2: because there are kids that are also waiting very long

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Speaker 2: for kidneys and livers, and you know all the other

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Speaker 2: organs that you can save someone else's life. And the

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Speaker 2: thing is, you know, at the end of the day,

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Speaker 2: the most important part is if you can stop or

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Speaker 2: slow down the progression to end stage renal failure. That

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Speaker 2: is the ideal situation because your original parts are always

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Speaker 2: going to work better then you know other dialysis or

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Speaker 2: a transplant, because there's no cure for in stage renal failure.

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Speaker 2: A transplant gives you a better quality of life. But

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Speaker 2: it's a treatment, there's no cure. And that's why early screening.

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Speaker 2: If your high blood pressure, diabetes, HIV, OB's family history

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Speaker 2: of kidney failure, you know, go and do your screening.

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Speaker 2: But even though if you're a healthy person walking out

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Speaker 2: there and you go into your GP you've got a cold,

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Speaker 2: just saying, listen, just do urine depthstick, just quickly check

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Speaker 2: my kidney function. Let's just see what's happening. Is everything okay?

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Speaker 2: Do I need to adjust my diet? You know? So

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Speaker 2: and so, because it's really it's simple steps that you

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Speaker 2: can do, but you don't want to end up with

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Speaker 2: in statree nor failure.

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Speaker 1: Still, I mean, it's such an important I know, it's

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Speaker 1: a real passion project and mission for you to raise

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Speaker 1: awareness and to prevent other people ending up in the

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Speaker 1: situation you found yourself in fifteen years ago of just

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Speaker 1: having no idea that you had been suffering from this

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Speaker 1: illness before it was really at a very very advanced stage. Obviously,

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Speaker 1: as as you said, prevention is better than cure. Identifying

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Speaker 1: the risks and slowing down progression is always going to

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Speaker 1: be the best possible solution. Obviously, access to dialysis is

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Speaker 1: another thing we don't have time to speak about now,

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Speaker 1: but very disparate in South Africa, and from one province

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Speaker 1: to another and from public sector to private sector, you

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Speaker 1: are going to have very different experiences if you are

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Speaker 1: in need of dialysis. So it is a huge concern.

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Speaker 1: But that final part of the message is also pleased

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Speaker 1: to spread the word about raising awareness around the don't

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Speaker 1: or possibility that is for many kidney patients, the final opportunity, Stella.

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Speaker 1: I always appreciate your taking the time to spread that

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Speaker 1: message and share it with us. The last thing to

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Speaker 1: ask you before we say goodbye is just to tell

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Speaker 1: our listeners where they can find your organization, Tell if

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Speaker 1: they'd like to read up more about that mission and

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Speaker 1: ask any questions they might have.

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Speaker 2: So Tethera, We're on all social media at tell t

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Speaker 2: doble l orgzday, Tell org Sday, our website, tell dot

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Speaker 2: org dot today. They can send us an email as well,

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Speaker 2: info at tell dot org dot today. And thank you

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Speaker 2: so much to the listeners, and thank you Papa personally,

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Speaker 2: because I know you're an advocate and activist for organized

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Speaker 2: issue donation.

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Speaker 1: It's my huge privilege to view that Stella Decock, thank

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Speaker 1: you so much. Always a pleasure to have somebody put

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Speaker 1: a personal face two terms that we don't like to

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Speaker 1: think about until sometimes it's too late, so appreciate your

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Speaker 1: time and we wish you all the best. Stella Decock

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Speaker 1: The Managing of Transplant Education for Living Legacies