Onthatile Wesi

What happens when a deeply personal experience becomes a call to change the lives of others?

Onthatile Wesi is a kidney health advocate, community health leader and a woman whose own experience of kidney failure transformed into a powerful commitment to public health advocacy.

In this episode Onthatile takes us beyond the diagnosis. She speaks about living with kidney disease, navigating dialysis and the healthcare system, patient dignity, the realities of access to care, the importance of early detection, and what it means to care for the whole person,  body, mind and spirit.

Her journey is about  advocacy, community and the power of lived experience to create change.Through Onthatile, we open a wider conversation about kidney health in South Africa: what we know, what we overlook, who gets access to care, whose voices are heard, and what needs to change.

The collaboration will culminate in the Kidney Awareness and Wellness Event in Bloemfontein, where Speaking Through My World will host a Pop-Up Podcast Studio. The studio will bring together patients, healthcare professionals, advocates, community members and participants to capture the voices and experiences emerging from the day.

Transcript

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SPEAKER_01 0:05

Welcome to Speaking Through My World with Rosie Wutene, part of the Feminist Frontlines Initiative, where we use the microphone as a tool for justice. This is a space where my three passions of women in Africa and the arts meet in conversation. Through storytelling, healing, reflections, and courageous dialogues, we amplify voices, preserve her story, and explore the issues that are shaping our lives, communities, and our continent. Thank you for listening. Let's speak to my world. In this episode, I am speaking to an incredibly dynamic individual who, when she walks into a room, she simply lights it up on so many levels. Not just through her energy, uh, her wisdom, her intellect. She also has the ability to hold you and be a safe space for you when the situation arises. But at the same time, she can also call you out in a very respective way if you're called to order. Um, she's not only somebody that I have the privilege of calling a friend, but she transformed her life experiences into public health advocacy. She's a radio presenter, an entrepreneur, a voice for greater kidney health awareness. She runs her own foundation and a Tecano Fellow. People, listen up. It is Untati Lewesi. Untati Le Hessy. How are you? I am great. I am great. Thank you so much for your time. Um, I just want to get straight into it. I mean, I've explained of what you have meant to me, um, and just also there's so many lessons you've taught me along the way in in our, I think it's just under a year now that we that we've really known each other through Tecano. But in your opinion, for for people um who are meeting you for the first time beyond your diagnosis, who is Untatile?

SPEAKER_00 2:28

Oh my word, I always get thaw struck on this uh question. But firstly, thank you so much for this beautiful invitation. I really appreciate it so much. Uh Unta Dile Wesi is a girl from Bloom Fintang in the free state. Uh born and bred here basically, and uh I was raised by my amazing mother and my late grandmother. Unta Dile is a talkative person, extroverted, uh extroverted, dramatic, just if you know me, you know me, you know. But above all else, I think I've mastered uh to just allow my spirituality also to define me, if that makes sense. And because that's that is what makes me to be rooted and to stay as Onta Delawesi, then you know, naming my accolades, what and what and what. So I'm just a simple girl that loves life, that is full of energy and just loves God. Hey, loves community, loves traveling, and of course, food and money.

SPEAKER_01 3:39

I love that too. But I love what you said is that your spirituality defines you, which is incredibly powerful because society are very, very quick to define us by who we are. So whether you're a black woman, whether you are a person living with a disability, or if you if you have a disease or an illness in your case or a diagnosis. Um I love the fact that that your your your spirituality defines you as opposed to to what society will do in terms of definitions. So going into that in 2018 you had backache, you had, you thought, you know, your no no fault of your of your parents um and your grandmother and your mother's uh uh uh choices, but you know, you didn't think anything of these particular aches and pains that you were feeling. Take us through that journey up until um when you when when you finally were given your diagnosis.

SPEAKER_00 4:40

Okay, so in 2018, that's when actually everything started in 2017, but then it was minor then, right? It started off with like uh leg pains, and I would just think, uh, maybe it's just a joint pain, nothing major. And I remember my late grandmother actually gave me these other pills, they usually help, and unfortunately they did not work, so I became sick, went to doctors, general practitioners, they took uh urine test, but they still did not find anything. 2018, after my grandmother's funeral, I started to become worse, but I was just living with the pain. 20 uh 19, likewise, 2020 during COVID, I was just becoming worse every day, and I was starting to also lose my memory. Uh having non-ending headaches. That's when uh the drawing pains became even worse. I became very tired fast, but still I was just bearing with it. And I think then it was because we were in lockdown, so I never got to like walk around a lot until 2021. Now, when everything was open, I became worse. Like a a one-second walk felt like a whole 10-minute walk for me. That's when I went to my then doctor who referred to my who referred me to my now specialist, and uh he did uh what's this x-ray testing, urine testing, pathology test, and that's when they found out through the pathology test that I've got stage four kidney failure, and immediately he sent me to my uh nephrologist who is a doctor for kidneys, right? And I did not immediately start with dialysis in 2021. Uh, he only reduced my pills that I was drinking then because the dosage was so high. And then 2022, in February, that's when the journey of attending dialysis started. So unfortunately, kidney failure is such a silent killer, and the symptoms are very, very weird and they differ person to person. And one example is that some people it may come across as if they're pregnant, yet they're not. It's just water that is full in their abdomen. So it's it's it's one hectic disease, this one.

SPEAKER_01 7:06

So, I mean, before we get into what dialysis means on a day-to-day basis, take us through the symptoms that you went through when you were on the medication before you started the dialysis.

SPEAKER_00 7:18

Okay, so um I was always tired, right? I was always tired. I had migraines, very, very severe migraines. You know, it was so bad. Uh, I I got, you know, like I I almost almost like a brain fog. You see, like you just don't know what you're doing, and I would forget dates. I would always be so emotional. Just sitting on the couch for like a minute, I would be out, gone, because my brain is tired, obviously, due to kidneys that are not working, right? And the medication uh that actually damaged me along the way when I was young. I there were times whereby I got misdiagnosed with uh TB, you know, and the dosage was high. Uh, there were times whereby they would say I have bronchitis, the dosage was high also. So it it comes back to the point that I was actually born with small kidneys, right? Which didn't not need all of these medications that I was prescribed uh for. Rather, I wish they had seen earlier that okay, her kidneys are not okay, so how can we treat her so that she doesn't end up attending dialysis? So unfortunately, then they just kept on diagnosing me, you know, diagnosing me, and which led me to this situation. So for other stage four kidney failure patients, it differs, you know, it differs, and I always avoid to like give advice because our kidneys are not the same and our bodies rather not kidneys. So I always advise people to actually go to a healthcare practitioner, a specialist in kidneys, or uh a physician. There are physicians that are uh well informed about kidneys.

SPEAKER_01 9:10

Absolutely. Okay, so so the next step is dialysis in layman's terms for the person who is first hearing about um dialysis and kidney failure. What is what is the process of dialysis in you in your through your eyes?

SPEAKER_00 9:26

Okay, so dialysis is a process for kidney failure patients. Number one, our kidneys, the main function is for them to cleanse our toxins. That is why we do number one and two, right? Uh huh. So we take out all of those junks in our bodies. Uh, and the minute your kidneys start to not work, that's when you need dialysis because now you can't do, especially number one, you know. So unfortunately, the toxins start to build up in your body, the dirty water, that's when dialysis comes in. So dialysis acts as an artificial kidney for us, which takes out all of those toxins, the water, it also cleanses our blood. So basically, dialysis is a treatment for kidney failure patients because our kidneys can no longer regulate its function in terms of cleansing out toxins anymore. So I don't want to make it too medical, you know. I want to like explain it in a brief way. Yeah.

SPEAKER_01 10:29

Yeah. And that and that's perfect. That's uh that's very, very clear and concise. So, how many times a month or a week do you have to go for dialysis treatments?

SPEAKER_00 10:40

I have to go three times. Uh and before I used to attend two times only. So, unfortunately, I had fluid overload, and uh, that's when my doctor was like, Nope, see, you need to start going three times. So, basically, I attend dialysis just to take out the fluid because usually my clearance, my blood clearance is good. So, because now I can't do number one, which is urinating, they I have to go to dialysis so that they can take out the water in my body, or else I'm just gonna lose it. I'm gonna lose my breath. I might have urea, and urea causes my mind to just wander around.

SPEAKER_01 11:25

So, so I mean, that's two, three times a week, and the reality of us living in in South Africa is um our healthcare systems and services are not really adequate. How have you managed to to navigate that in terms of of how you're treating yourself and and and living your life?

SPEAKER_00 11:48

Particularly for public or for public.

SPEAKER_01 11:51

For public.

SPEAKER_00 11:52

Okay, so I I wouldn't say luckily, I want to say blissfully. You know, the good Lord has been so good to me that I've got medical aid cover, right? However, for people that go to public, it's such a stretch. It is one of the most painful things. And even I, as a social activist for fairer, equal uh equal health care within dialysis, it becomes so heavy because there's lack of resources within our public uh hospitals, you know. Uh the resources for dialysis are expensive and and and the list is long, they prioritize young people over old people. So trying to get into the system alone is so hard because the question is where do I start? You understand? And in me wanting to like push this, I should be cognizant of like the budget. Also think of the government, also, because uh, in as much as yes, I'm a social activist for patients, and and I also have to think for the government in that, okay, these people are not paying, and Dallas's resources are expensive. So maybe let's say if they could pay $500 per month, then it would have been easier for government. But for now, they're not paying anything. So you see, like it's a 50-50 thing. Yes, I'm standing up for uh for patients, but we need to also be fair because I have seen how expensive these things are alone in our private facilities, you know. So it's it's a very dire situation. That is why I'm saying, blissfully and by God's grace, I am in private and I get full care the way I want it. But the reality is that my heart is that side and I want to help that side, but it's just a whirlpool of a system that is so hard to navigate.

SPEAKER_01 13:58

Absolutely. And and and you know, with you saying that you want to help that side, and you you have actively been helping that side as in your in as as much capacity as you can. Let's talk about the advocacy that you do within within the knee kidney failure sector. When did you start advocating for this? And what have you achieved in terms of you using your voice behind it?

SPEAKER_00 14:24

I actually started to talk about my story first. And I remember when I called myself kidney health advocate, I never thought it would grow this much when I started with dialysis. I was still at hospital actually, and I started to just talk about my story on the social platforms, and eventually it grew. 2023, I started to now educate people, you know, about the symptoms, things to avoid, you know, foods, water, this and this and this. Uh so my advocacy work started off with bringing an awareness. That's how everything started. And now policy work actually started when I uh got into decano. Actually, you know, and it's so funny because now I'm more into like policy work because of the canoe and how it has taught me so much. Because I've always wanted to do it, but I've been scared because I'm just a patient. Who am I? You know, that's how the the system is. Who am I? I don't know how everything works. But now I started to be brave enough and go into the public dialysis sector and see and observe and say, okay, they are actually short-staffed, okay? They don't have simple things like air conditioning, which is important. And even before I can go to the MEC of health, for example, I have to collect all of the necessary information and then drop it to him. So, in terms of advocacy, for now, I am just busy with awareness and then getting into the system. I'm only now like growing and becoming more confident about it because you know you can't just go and fight without having clear um facts.

SPEAKER_01 16:15

Absolutely. And and and and that's that's also just the right progression to be taking because also, you know, going in and doing this additional work plays its toll on your body, right? Um also just in in inside um reality, uh, you talk about you know creating awareness. And and for my listeners, I remember last year it was for our induction at at Tecano, and we were going to get some snacks because we were going to go watch uh the sunset. Um, where was it at Signal Hill? Yes, Signal Hill. I don't know if you'd realize that what you did, but you educated me, which I found incredibly powerful in that moment, is that I went and I I grabbed a packet of chips, and you were like, ah, there's too much salt in that one. There's too much salt in that one. You need to you need to know what you're putting into your body.

SPEAKER_00 17:06

Oh I even forgot. You see, that's how much has spread awareness.

SPEAKER_01 17:14

You know, so it's just organic, it's absolutely, absolutely beautiful. So so thank you for that education. Moving on to to more of the advocacy side, you've started your own foundation. Let's let's talk a little bit about that.

SPEAKER_00 17:29

Yeah, like I said to you, I never thought this thing would be in this big and growing now. I was just the innocent dialysis girl who was actually avoiding this journey. And there were times I was like praying, God, why did you choose me? I just want to be a normal nine to five dialysis patient. I don't want to be known. I don't, I just want to be my own cocoon. And did God listen, darling? Nope. So the whole foundation actually, the reason why I decided to register it is because of to grow it more with like good partnerships, especially health partnerships, big organizations. You understand? So that's one of the reasons why I was like, okay, let me register it, right? But then the first year when I started to do the health awareness, it was not as yet registered. Everything was just taking so much time. But initially last year, eventually I registered it, and tomorrow it will actually be turning one. Oh my word, it will be so yeah. So when this whole initiative started, it was mainly to bring an awareness to the community because kidney health does not have a lot of awareness like HIV, cancer, you know, and it's one of the most deadliest diseases that oh, that is so hidden. But once it hits you, it hits you. So initially, the plan was to bring an awareness, but now it looks like we're also getting into public policies, and I'm trusting God that He will give me strength to navigate this hard uh system. So basically, for now, we are spreading awareness every chance we get. Example, the Simba chips that you wanted to buy.

SPEAKER_01 19:16

Duly noted, duly noted. And and and I mean that that's what we need is the awareness, but it's also a blessing that you know we are in this techano fellowship where we have access to those minds and within the the healthcare sector. Um, and I and I and I'm sure at somewhere along the line, the the the the the next stage for you in terms of policy and development, wherever God wants to lead you, um, you'll be able to do that. And I'm sure it will be it will be with the aid of of somebody connecting you through the Tecano space. So last year or this year, you're also hosting an event in November around this awareness. Let's talk a little bit about that.

SPEAKER_00 20:01

Okay, so every November, it looks like November is the right day because in 2024, it was the 23rd of November last year, 22nd, and this year 21st, because of calendar changes, right? So the event is mostly based on kidney health uh awareness, wellness, right? And it includes, I did not want it to make it boring and just make it like a talk thing. So I was like, okay, how about I put in like fun run, fun walks, some aerobics, you know, and then uh what's this? Uh screenings also, because one of the major causes for kidney failure is high blood pressure, diabetes, and HIV. Well, the fourth one usually is genetic. So that one obviously you have to go to the doctor for that because it's kind of expensive. And then uh after that, people just sit and listen to the professionals' talks. So it is mostly about bringing an awareness in different ways because when people go out running, it's to bring that thing. Okay, I need to keep healthy, you know. Obviously, after running, I become dehydrated. I need to drink water, you know, because my kidneys need water. After some sweating of aerobics, I need to drink water again. So it's it's a feel of health, it's a full wellness health day, you know, fitness. People should keep healthy at all times. And last year we actually added some items, uh, spices, you know, good spices for you and bad spices for you. We also uh added uh the dialysis machine with the doll, the display there. And this year also, we are gonna add more things so that it becomes also like signages, you know. When people walk in, it's almost like an art gallery. People can learn while walking around. So it's mostly About kidney health awareness more than anything.

SPEAKER_01 22:05

Brilliant. And for my listeners, I'm proudly to say that I've also partnered with uh Untatile on this event through this podcast, Speaking Through My World. And what I'm going to be doing is trying to create as much awareness, whether it's into interviewing additional people on healthcare, on kidney healthcare. But the main aim, particularly for those who are being collectors, is that how can you put your money towards the foundation? So watch out for our social media and posts, for our announcements, just obviously closer towards the time of the event, but more importantly, now over the next couple of weeks of looking for sponsorship deals and how you can actually support the event, not just to create awareness, but then also just to put more money and support towards the foundation. So I'm very, very excited for that. Um as we close off, the the reality of living in a cosmopolitan country, I mean, we're dealing with a lot of um various issues, um, political issues and so forth. But if you were to sit across the table from uh the Minister of Health for South Africa, and you were uh given a couple of seconds or a couple of minutes to explain why and what they need to do in terms of giving support to kidney patients and creating awareness, what would that conversation look like?

SPEAKER_00 23:35

Oh, oh, this one. You put him in the deep end because I I think it's one of those proposals that you literally need to write down. But firstly, it would be for them to actually take uh awarenesses to head to head, if that's the right word to use. Because for the most part, when you want to organize such things, it's always a struggle to get support from the public sector, particularly. You know, uh, example, Department of Health. I always have to like literally fight with them because they tell me no, Saturdays are for overtime and and and you know. So luckily I'm somebody that can speak my way through things and eventually they come. So, number one, it would be please support awarenesses, especially based on uh diseases that are not put out there kidney disease, lupus, uh bell puls. You know, there's quite a lot of them. If they could support such initiatives, you know, and also stand out there, that would be nice. Secondly, particularly for kidney health, uh teach more nurses about renal. You know, renal is another word for kidney health. Uh they they they they don't know. Most nurses do not know anything about kidney health, they just know when a patient has kidney failure, and that's that on that. You know, my thing is once they enroll for nursing, make it part of the curriculum so that they know that, okay, I can actually get into this industry. Let me go learn more about rental department because nurses within public, they're gonna retire. Who's gonna be left? You know, so that's another one. And then in terms of public resources, how would they make this whole thing become better for public patients? You know, could it be a thing of, okay, maybe let's meet each other halfway, uh, pay the government at least 500, and then we will also bring in good resources for you. Or what, you know, so that uh dialysis patients in the public sector get good service. I mean, right now in May, when we went for the decano tra um learning experience, too, I lost one of the patients that I was trying to advocate for. She was at Baira Hospital and the list was long. You know, mind you, she was my age, but the list was long and she could not get in. So those are the things that they need to navigate to say, okay, since the list is long now and we are shorting resources, how can we talk with our treasurers, our accountants, you know, on how to make this uh matter easier for us? Maybe we can add mobile dialysis clinics, you know. So I just need them to know how to like navigate this whole thing and not just bash away people. People are losing their lives. And unfortunately, also for people that are older, once you reach the age of 60, they do not allow you in public dialysis. They're like, nope, we are prioritizing a young person. Who said that 60-year-old woman does not want to live anymore? You understand? So for me, it's such things and simple things like air conditioning. There is no way you can be in a hospital and not have air conditioning. Infection is literally everywhere when you are in hospital. Hospitals are not one of the cleanest. Yes, they might clean it and it might smell fresh, but it's not clean because we come with different uh sicknesses, you know. So my thing is they must also prioritize air ventilation. Like there's so much I want to tell these people, okay? But uh I I am I am getting slowly there, you know, building myself. And I think also with age, it comes with a more peaceful mind and saying, okay, I can still be an activist, yes. I can still be an activist, but in a very calm way and not making noise, you know. So yeah.

SPEAKER_01 27:46

If you if there's somebody out there, because this is also about your advocacy and your personal journey, if there's somebody out there who has just been diagnosed, what what advice or words of encouragement or um suggestions would you be able to give them, considering that they're your age, suddenly got this diagnosis and has to face life in a different way?

SPEAKER_00 28:15

Yeah, number one, I definitely have to say acceptance. It all starts there. You know, it all starts there because I've seen quite a lot of people, also people that reach out to me. Some of them cannot accept. And unfortunately, if you can't accept, then you're gonna become more and more sick and just not have a good life. So I think number one is accepting that you have kidney failure and it is not the end of the world. And kidney failure is manageable. Number two, it is manageable, and as long as you know like your blood test, you know your results, you know what you need to consume because our bodies differ, right? So it's so important that you know who you are as an individual so that you can live freely. So, number one, acceptance. Number two, know your results, know listen to your health practitioners, you know, and always keep a good company around you, keep positive people. And by me saying that is that yes, I as Ontadeloisi come in with kidney failure, and then I meet with uh Rosie, right? Rosie has got her own problems, and that alone motivates me to say, okay, I'm actually not the only one that is struggling in life. So when you have a broad community of people around you, you like become the best version of yourself and you just live because you realize that yes, mine might be physical, but it's not that uh deep as opposed to other people. There are people that are literally living with lung infection, lung disease actually out here. And when it's low chedding, they struggle with life, you know. So, and that is not controllable. Kidney failure is controllable. You must just listen to instructions, you know. You must know your blood test, you must check the foods that you eat, because if you don't, unfortunately, you are the one that's gonna suffer. You must check your fluid restrictions also. And if you follow all of those rules, Shame, you will live to the best of your life. So do not fear life still moves on, and do not quit your dreams because of kidney failure. Currently, I'm dealing with somebody who dropped out of school, and I'm like to her, okay, let's say you get a kidney tomorrow, a transplant tomorrow, you're okay back to normal life. Now you're gonna have to restart over again because you quit it while you were on dialysis, you know. So learn to like navigate your life. Learn to navigate your life. Like for me on Mondays, I know I go to dialysis, I come back very tired, so I can't do extra work. You know, today, Tuesday, I have to like do that lot of work because tomorrow I know I won't be able to. Thursday, I'm able to, Friday I can't. So just learn to to navigate around it all, just keep a positive mindset, you know. Look up to life, live, just live. Uh, one of the most important things is just living.

SPEAKER_01 31:25

Absolutely. And and and as you said, because when we started this, is that you are led by by your spirituality. And and so it's it's a it's about it's about tapping into that and knowing who you are, which I think is incredibly, incredibly powerful. Um, and and for those listening, you know, what what she's saying is not just um words that she's sprouting out, because when you do meet her, uh she does change the energy of the room. She does tap in and be and hold space for for so many other people. And and for one thing, as we close off, I'd like to say thank you for the times that you've held space for me. Um, you know, people people always think that when you're older, you're the one who's always controlling and holding space. But a lot of the time we take advice and we learn and we can lean on um the younger voices and the younger bodies in the room. So for that, I really, really thank you. Uh, in terms of your dreams, as we close off, what is the next the next step? Um, we've got this event that's happening on the in November, which I will put all the information out. But what's the next step for you, the Untatilawesi brand?

SPEAKER_00 32:38

Oh, Uncatilawesi is such a dreamer and a lot of things, hey. And uh there's quite a lot, but particularly for kidney health talks, I just want to see it international now and it making a difference where it's necessary and not just being a big famous brand, but actually working, you know, uh planting good seeds and fruits that are growing, you know. So that is where I want to see it for it to be beyond awareness, but to actually get into public spaces, you know. Uh example, Thai Health. Those are one of the countries internationally that we also need to navigate around. And Untajila Wesi, as a person, she's a media person, she's a radio presenter and would one day want to be in commercial, you know, and uh also growing as a leader because I guess that is what I'm called for. And yeah, like there's so much, I can't even explain.

SPEAKER_01 33:43

Beautiful, beautiful. Thank you so much for your time. Of course, I will attach all of your social media handles. Uh, you have a fantastic YouTube channel which you do amazing blogs on. Um, and and of course, everything corresponds with the rest of your social media. So, from me, thank you for your time. Thank you for allowing me to partner with you for this event. And and may your star and may your activism and may your shine just go to group to greater heights.

SPEAKER_00 34:13

Thank you so much, Rosie. Oh, you're doing such a phenomenal work. You don't know, like you are healing.

SPEAKER_01 34:22

Oh man, thank you.

SPEAKER_00 34:24

Ever since I've been next to you, my nervous system is so regulated, and I never really got to tell you this. I I was always always around the coast of a person here, but I'm so calm ever since being next to you and one of our colleagues, Nam Zamo, and I just love it so much. Thank you for that.