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A family history of Polycystic Kidney Disease meant there was a good chance Connie would inherit kidney disease. Never did she think it would lead to stage four renal failure.

Conny’s father had Polycystic Kidney Disease (PKD). She had inherited this dominant gene when she was 11, and it was likely that she’d develop PKD when she reached adulthood.

In hindsight, I wish I’d never have found out. Knowing that you’re living with a disease, I believe, brings it on. Being ignorant about it would probably have served me better.

My life changed after the diagnosis. I was treated with ‘’kid gloves’’: Be careful of horse-riding. Don’t stay too long in a wet costume. No jumping or jolting of any kind. Living like this was like constantly having a shadow hanging over you and waiting for the inevitable to happen.

Any symptom I experienced was immediately attributed to kidney disease. Fatigue, high blood pressure and headaches all fell under ‘’genetic coding’’. What about stress, poor diet, and emotional turmoil? Undoubtedly, this would impact the body too.

I became the queen of denial. I no longer wanted to identify with the disease and did everything I was told not to do. In my early twenties, I partied, went horse-riding, took many risks and didn’t take much care of my health.

During this time, my father’s health rapidly deteriorated. His blood pressure was dangerously high, and the cocktail of meds couldn’t keep up. He suffered severe gout attacks. Kidney stones were common for him. He could do so little that he slept for almost 20 hours a day. His skin complexion turned grey, he had ammonia breath and he struggled to breathe. His lungs were filling up quickly due to the build-up of fluid and lack of urination. His business collapsed, he no longer had medical aid, and he was in financial trouble.

He wasn’t interested in any treatment available to him, and he basically gave up on life at the age of 55. But at the eleventh hour, too weak to argue, he accepted emergency dialysis. I observed in horror what he had to go through for the next two years. His journey left me in even more denial about my condition. I didn’t want anything to do with this dreadful disease.

My father passed away at the age of 57. It was the most harrowing experience of my life.

As if things couldn’t get any worse, my husband was diagnosed with a brain tumour and was given six weeks to live. We were blessed to have nine years together and we embarked on an incredible journey. I continued to ignore my own health by focusing on doing everything I could to make my husband’s life easier.

My husband eventually passed away aged 42.

Life became difficult without him. I struggled alone on a farm. I lost loved ones. My precious dogs were poisoned. A bout of natural disasters hit – multiple lighting strikes, a devastating hurricane and several fires that destroyed everything in their path.

Daily life became a constant battle. I didn’t have energy for anything. I was depressed and became the master of procrastination. My stress levels went through the roof. I suspected everything had to do with grieving, but after months of therapy, I eventually realised that my body was in trouble. I had neglected my health for so many years, and without realising it, stage four renal failure quietly crept up on me.

I tried to reverse what I could by making drastic lifestyle changes. I increased my daily water intake, took the correct medication, and went for regular check-ups. But my condition quickly became a runaway train.

My doctor took me through the treatments available to me. Being an avid swimmer, I decided against the option of a chest catheter that would allow for easier dialysis access. My doctor suggested an AV Fistula, as this would still allow me to enjoy my swimming.

We hoped there’d be enough time for the fistula to mature, but my eGfr count was now on seven. I felt awful. My symptoms were severe – from oedema to extreme nausea, headaches and lethargy, an inability to eat and constant vomiting. I barely survived these six weeks.

On 20 April 2022, I went for my check-up and was put on dialysis. Even though I was surrounded by caring staff and became ravenous for food for the first time in months, it wasn’t fun. Dialysis is often sugar-coated, and the truth is, it is challenging! I cried for the first few weeks. I caught influenza three weeks in and landed up in high care. I thought I was dying.

Adjusting to the routine was excruciating. Four-hour sessions, three times a week – it was absolute hell. I missed my life and my freedom. After every dialysis session, I felt weak and mostly collapsed into bed. I experienced awful headaches and struggled to find meaning in this new way of life. I wouldn’t wish dialysis on my worst enemy.

I was told that I’d start feeling better after three to six months of dialysis treatment. But I experienced a new set of symptoms after starting my treatment. I seemed to be allergic to everything, from the iron infusions to the plaster tape and even the numbing cream. And the needles… just the sight of them sent me into a tailspin! I had to go for hypnotherapy sessions to help me overcome my fear of them.

I learnt to keep on going by reaching out to fellow dialysis patients and Facebook support groups. These fellow warriors answered so many of my questions, and their motivation and support have been invaluable. 


I am going into my sixth month of dialysis treatment, and only now can I finally see the light. Yes, dialysis is exhausting, but the days in between are becoming magical! I am grateful to be alive, and while there are so many limitations, I’ve found that focusing on what _I can do_, makes me realise how _much more I can do_.

I feel privileged to have a dialysis team dedicated to my care, and I’m grateful to my medical aid and everyone who is giving me the support to keep me alive. 

Finally, my life is becoming meaningful again.

Indeed, I am so blessed! 


My kidney story

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A cheerful, positive attitude has helped Mahomed Hoosen to cope with kidney disease. He shares his experience of renal failure, as well as some helpful tips.

I discovered my kidney problems 21 years ago after my blood pressure shot up to 285mmHg. I thought the high blood pressure was due to work stress. What I didn’t know was that I had developed polycystic kidney disease (PKD). This hereditary disorder causes fluid-filled sacs called cysts to grow in the kidneys. The cause is genetic and PKD probably cost my father his life, though he was never diagnosed.

At the time, I felt fine. I had no idea that my kidneys were in trouble. If it hadn’t been for the high blood pressure, I’d never have known about my condition. When my glomerular filtration rate – which shows how well the kidneys filter blood – dropped to a drastically low level, my GP referred me to nephrologist Dr GH Latiff for specialist care.

I developed anaemia due to the kidney disease, and Dr Latiff prescribed an injection that I needed to have on a regular basis. I started going to Renal Care Holdings – Shifa to have this administered, and I developed a close relationship with the staff there, something I would be grateful for later.

My kidneys kept deteriorating. In 2021, my kidney function dropped to alarmingly low levels, showing signs of renal failure. I began to develop terrible pain in my hips and lower half of the body due to the build-up of toxins. I weighed 85.8kg. I have always been a slim, active person, but my body was retaining so much water due to my kidneys not functioning as they should, that I put on weight. It wasn’t only that I was carrying too much water, but the fluid also entered my lungs, leaving me breathless after walking just a few metres.

Even though I wasn’t keen to go on dialysis, my nephrologist made it clear that it would be inevitable. In preparation for my treatment, I was scheduled for a fistula operation, which would join a vein and artery so my blood could be transferred more easily. The day I was due for the fistula operation, I had to be rushed to hospital. My kidneys weren’t working, and as a result, my first dialysis treatment was an emergency one in ICU.

I go for treatment twice a week, four hours at a time, during which a machine filters my blood to remove waste from my body. My sessions start at 6am. I go to the same clinic where I first had treatment for my PKD-related anaemia. The staff are all wonderful people and very supportive. Often the clinic manager, Idris Cassim, would open up early and get me set up personally, so I could be done by 10am.

Thanks to dialysis, I’ve lost 21kg and now weigh 65kg. I feel lighter and more mobile, without pain. I make sure I attend every dialysis session and I never cut my treatment short. I take a brisk walk every day to keep myself fit. I pay attention to my diet and avoid foods that are high in sodium, phosphorus, and potassium. This way, my blood pressure and blood sugar levels stay within normal parameters and my disease is under control. I’m not in and out of hospital.

I would’ve been in deep trouble if I didn’t have medical aid. As a pensioner, I couldn’t afford to pay for dialysis out of my own pocket. My condition is chronic and I know it won’t go away. There’s no cure for renal failure – I need ongoing treatment. As a member of Momentum Medical Scheme, I know my medical needs are covered according to my benefit option.

I’ve been in contact with my Momentum Medical Scheme wellness coach since before I started dialysis. My wellness coach supports me, regularly checks in to see how I am doing, and whether there is anything I that need. My wellness coach works with my nephrologist to ensure that my disease is being well managed.

While I’m undergoing treatment, I chat to patients and share my experiences to help them through their treatment. My wellness coach recently asked if I would talk to another Momentum member who is new to renal treatment. It was a pleasure to share my first-hand experience and to reassure him by explaining how I coped.


Inform yourself about the food that can impact your condition. It’s your body and you know the effect of what you put into it. When you feel unwell, ask yourself what the reason might be and what you last ate. This way, you can actively manage your disease.

A new lease on life

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Reinette was diagnosed with acute nephritis at 11. She went on dialysis almost 45 years later when her kidneys all but shut down, until a kidney transplant saved her life.

My health complications started at a young age. I was 11 years old when I was diagnosed with acute nephritis following a severe case if tonsillitis. It poisoned my body and caused inflammation in my kidneys. I became very sick, and was hospitalised for a whole year.

I was admitted to a hospital in Port Elizabeth, quite a distance away from where my parents, siblings and friends lived – in Despatch. My mom and dad came to visit me for a few hours every weekend, but that was pretty much the extent of my interaction with my loved ones. I was very ill, bed ridden for most of the time, and felt extremely lonely.

I eventually recovered from acute nephritis, and lived a healthy life until I turned 18. I remember experiencing a lot of fatigue, nausea, and dizziness. My urine wasn’t normal either, and I noticed swelling and water retention. I knew something wasn’t right. A doctor’s consultation and several tests confirmed that I had glomerular nephritis. The diagnosis was concerning, but I took it in my stride and adhered to the prescribed treatment plan.

I fell pregnant with my first child when I was 24. What a blessing! But I’d be lying if I’d said that my pregnancy was easy. I had to stop working after developing symptoms of toxaemia. My blood pressure was dangerously high, and the effects of fatigue took its toll. By God’s grace I managed to carry my son to 38 weeks, and gave birth to a healthy baby via caesarean section. My second child was born three and half years later, and we were blessed with a healthy baby girl. The risk paid off, but the damage was done – my kidneys took strain from the pregnancy and they began to deteriorate.

I constantly felt weak, exhausted, nauseous and lightheaded. I began to urinate infrequently too. I wasn’t okay. In 2008, at the age of 49, my kidney function measured 25%. Dr van der Walt prescribed a change in diet that could aid in preventing, or at least reducing, further deterioration. The eating plan was very restrictive, and I couldn’t eat many of my favourite foods. But I had a family now, and I was willing to sacrifice anything to stay clear of dialysis and extend my time with them.

The diet worked and the quality of my life improved. I travelled, socialised, and lived a relatively normal life. I embraced the diet and stuck to it. I followed all the doctor’s orders, and it bought me a good couple of years before my symptoms began to worsen again.

My husband and children were immensely supportive and loving. They inspired me to be strong. I was petrified. I cried when I was alone, but I forced myself to remain calm and optimistic in front of my kids. I constantly prayed. I prayed for myself. I prayed for them.

I made it my mission to study the pros and cons of haemodialysis and peritoneal dialysis – the two dialysis options available to me. I decided to go the peritoneal route – a treatment rejected by most patients as it requires immense self-control and self-discipline. But I knew I had it in me. I wanted to live, I wanted to be flexible, I wanted to travel and camp without being bound to hospital-based sessions. I wanted to – no, I needed to – maintain my independence. And that’s exactly what I did.

I took my dialysis equipment with me wherever I went. I took it to work and used the designated private sick rooms to do my treatment. I took it with me when we visited the Kruger National Park, carrying out my treatment in the comfort of my own caravan before going on a game drive. The medical courier company delivered my equipment wherever I happened to be at the time. I embraced my new reality, and I ensured it slotted into my lifestyle as comfortably as possible. I won’t lie, it was extremely painful at times, and I had the occasional complication that necessitated medical intervention. But for the most part, I was largely in control of my treatment and it made me feel better about it.

I was placed on the Cadaver kidney waiting list, which ended up being almost a decade-long wait. I was informed during the last few years that there were matches, but the kidneys always went to someone younger and more deserving. I was nearing 60 and had begun to accept that my chances of receiving a kidney were very slim.

My health was rapidly deteriorating, and I was growing weaker by the day. The toxin build-up in my body was causing immense pain and discomfort. My complexion was grey, and my body looked frail and aged. I had no energy – the simplest of tasks left me completely defeated. I struggled to eat, and experienced very bad swelling and water retention. My kidneys had perished to the point that they could barely be seen on a sonar scan.

I was in trouble. I was scared – scared of dying, suffering, and spending my last days in hospital without my family. I was scared that I wouldn’t see my grandchildren grow up, and scared for my family and husband who I’d leave behind. But I prayed, and my family prayed with me. We remained grounded in faith and we left it all in God’s hands. What must be, must be.

I still get overwhelmed when I think about that night. When my kids arrived to pray and wish me well. The trip to hospital, the preparation for surgery, all the tests and X-rays before the procedure, the transplant itself and the hours in recovery. It remains a bit of a haze to me, but it was incredibly surreal and overwhelming. It was a miracle!

I experienced several complications in recovery. I was in pain, and contracted a few infections. My body was rejecting the new organ, and my medication needed to be adjusted several times to try and curb my immune response. After several weeks in hospital, I was able to come home with my new life-saver neatly tucked in my abdomen. My energy levels improved over time, and I felt alive again!

Some side effects have remained following the transplant. I have developed type 2 diabetes due to the anti-rejection medication, and my blood pressure needs to be kept in check daily. But these are small sacrifices that I endure with a peaceful mind and heart, as I have a second chance at life!

My life in renal failure

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Tertia arrived at NRC Paarl for her first dialysis treatment session on 20 August 2019. It would be a day that she’d never forget.

I was greeted by a soft-spoken receptionist when I walked through the doors of NRC Paarl. She made me feel welcome and relaxed, and explained the dialysis process from A to Z.

Two NRC staff members started up the dialysis machines and got everything ready with impressive speed and precision. Music played in the background, which blocked out the clinical atmosphere and calmed my nerves. I was offered a cup of tea and a sandwich, which was a thoughtful gesture I hadn’t expected.

Sister Alice was on duty, and she patiently explained everything I needed to know about my treatment – the dos, the don'ts, what supplements to take... the works. And before I even knew it, my first dialysis session was over.

The nurses would always be there to lend an ear, and provide comfort and support. One of them even sang to me and they would often play my favourite song out loud. They even phoned me in the hospital to wish me well for the procedure!

I can genuinely say that it was the easiest part of the journey towards my kidney transplant. I always walked out of NRC Paarl with a smile on my face.

The NRC nurses are an amazing team – every one of them crept into my heart, and I adore them dearly for everything they have done for me. I never want to lose touch with them ever!

To my forever best nurses, I salute you!

My story: from dialysis to transplant

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The NRC app has helped Kuban to be more involved on his dialysis journey. He shares his experience in the video below.

Kuban Naidoo

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The NRC app and its features enable Brendon to easily monitor and maintain his health. Watch the video below. 

Brendon Naidoo

INTERVIEW_Brendon.mp4

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Nadine found it difficult to monitor her health. With the NRC app, she can quickly and easily access treatment info and resources in one place. Watch below. 

Nadine Yawitch

INTERVIEW_Nadine.mp4

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The NRC app has made it easier for Lungelo to manage his health. Everything from blood results to resources to recipes are now in the palm of his hands. Watch below.

Lungelo Hadebe

INTERVIEW_Lungelo.mp4

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Tuesday, 17 December 2024 - Kinnie looks forward to first dialysis-free Christmas – and ice cream!

**Mrs Jacoba ‘Kinnie’ Steyn** (centre) is pictured with **National Renal Care Sedibeng clinical technologist Dolly Biyo and unit manager Rose More** who cared for her while she was reliant on dialysis before her lifechanging kidney transplant. This will be Kinnie’s first festive season in three years without needing to go for dialysis. 

Kinnie looks forward to first dialysis-free Christmas – and ice cream!

National Renal Care (NRC) provides person centred renal care, overseen by nephrologists including dialysis treatment, either at home or in healthcare facilities, to people living with chronic kidney disease and kidney failure.  

Transplant nephrologist Dr Hon-Chun Peter Hsu, who practises at Netcare Milpark Hospital and provides the nephrology service at NRC Midvaal and NRC Sedibeng, explains that dialysis is needed to artificially purify the blood and remove waste when a person’s own kidneys are no longer able to perform this vital function. 

#####  “Although dialysis provides a lifeline for people with kidney failure, it does take up a lot of the person’s time every week. Some patients describe dialysis as running a marathon three times a week, and the only chance to live without dialysis is to have a kidney transplant,” Dr Hsu explains. 

“It was a difficult Christmas in 2021 when I was coming to terms with my kidney failure. I had already invited the whole family when I received the diagnosis. Luckily, everyone jumped in and helped with the Christmas preparations while I absorbed the news. My mother was also on dialysis before she received a transplant, but nothing could prepare me for going through this journey myself,” she remembers.


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“In January 2022, I had a shift of mindset. I decided I would not give up – if I had to be on dialysis, I would be a fighter and do my best to live a full life. You never know what tomorrow brings.”

Kinnie says that she was fortunate to have so much support from her family and her medical team, initially at NRC Mulbarton and later at NRC Sedibeng, where she transferred to have dialysis near her home in Vanderbijlpark. 

“To be added to the waiting list for a kidney transplant, the person needs to be as healthy and fit as possible aside from their kidney function. Even so, not everyone is able to find a match, either from a loved one who is willing and able to donate a kidney or from an organ donor who has passed away and whose family agree to the donation,” Dr Hsu says. 

After three years on the waiting list, Kinnie received a call from her transplant coordinator at Netcare Milpark Hospital informing her that a matching donor kidney had become available and to prepare for her surgery in just two hours’ time. 

“Although the Vereeniging Vaal area has a large population who are on dialysis, we have not seen many people having this opportunity for transplant in quite some time. The need for transplants far outstrips the number of organ donors needed for suitable matches,” Dr Hsu points out.


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“When we see the remarkable difference it makes to individuals like Mrs Kinnie Steyn to have a second chance at life, it brings home the significance of registering as an organ donor and the importance of discussing our wishes with our families while we have the chance,” he says.  

“Mrs Steyn’s journey and successful transplant offers hope for others who are on dialysis and has inspired some of our other patients to join the transplant waiting list. Some patients are reluctant to consider receiving a kidney, but the outcomes in terms of quality of life and survival are better than remaining on dialysis in the long-term, even though it is possible to live for 20 years and more on dialysis.”

“I’m so thankful to my Heavenly Father for blessing me with this life with all its ups and downs, for blessing me with abundance and for giving me a second chance. I want people on dialysis to know there is hope. The difference the transplant has made in my life is indescribable – I got my energy back and a second chance to enjoy a full life,” Kinnie says. 

“I am so thankful to the donor and their family who made the decision, even though I do not know who they are, I wish they could see the difference it has made to me. 


“I am also thinking about the many friends I have made who are on dialysis, and to Dr Hsu and the wonderful NRC staff who are there for us all year round – including on Christmas Day. You get to spend a lot of time with your dialysis team, and we’ve become like family. 

“I’m very grateful to my nephrologist, Dr Myron Scop, at Netcare Alberton Hospital who looked after me when I was first diagnosed with end stage kidney failure. He kept things positive and gave me hope. 

“An enormous thank you to the transplant team at Netcare Milpark Hospital, who made this possible. My  thanks also to my surgeon for his kindness during those first tough days after my transplant, and to Dr Hsu for taking such excellent care of me and encouraging me during his visits while I was on dialysis at NRC Sedibeng,” Kinnie says. 

With a network of 76 dedicated dialysis units across South Africa, NRC staff also provide patients and their families with important information about managing chronic kidney disease and the treatment available.

“Now, I have colour in my cheeks and so much more energy to play with my grandson, who is two years old. This year will be the first Christmas that I don’t have to go in for dialysis – which is a huge blessing I won’t take for granted,” she says.


##### Who is at risk of kidney disease?

Nephrologist Dr Hon-Chun Peter Hsu, who practises at NRC Sedibeng, warns that kidney disease may only show warning signs or symptoms once it is advanced. 

“Fortunately, affordable kidney function and urine tests are available that can identify the need for medication and specialised renal support to help prevent further damage. For example, NRC’s Health Start programme provides helpful guidelines on dietary and lifestyle management aspects for those with kidney disease,” Dr Hsu says.

Anyone with the following risk factors should talk to their healthcare practitioner about assessing their kidney health:

- Overweight
- High blood pressure 
- Diabetes (both type 1 and 2)
- Prediabetes, as kidney function, can be affected early 
- Smokers
- Previous heart condition 
- A family history of kidney problems

Protect your kidney health

- Stay active: Regular physical activity promotes circulation and overall wellbeing.
- Balanced diet: Include fruits, vegetables and lean proteins as part of a varied low-fat diet.
- Avoid harmful habits: Limit consumption of alcohol, tobacco and other substances that can exacerbate kidney damage.
- Drink six to eight glasses of water daily to support kidney function and flush out toxins.
- Monitor vital health indicators: Keep tabs on your blood pressure and blood sugar levels and manage these closely with your treating doctor.


A second chance for a full life after kidney failure

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