Durban — Born into a family affected by polycystic kidney disease, Jacoba ‘Kinnie’ Steyn recalls Christmas 2021 when she received the shocking diagnosis that her kidneys had failed, and she would be reliant on dialysis three times a week for her survival.
Three years later, she is looking forward to her first festive season since her life-changing kidney transplant.
“I was about 20 when I was first diagnosed with polycystic kidneys, which both my mother and brother had too. Knowing the health risks, I was careful to take care of myself with an active lifestyle and eating right to keep healthy in light of my condition,” Kinnie, now 51, recalls.
“Even with all the precautions I took, it caught up with me eventually in December 2021 when I went for a check-up, and the doctor immediately had me admitted to hospital. It was a huge shock to learn my kidney function had come crashing down and from then on, I was reliant on dialysis.”
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.
“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.
“Mrs Steyn really put her head down and got on with the tests and preparations needed for transplant work up because the waiting list is long and there are very few registered organ donors. She was determined to do everything she could to be ready for the transplant if a matching donor kidney became available.”
“My husband, Johan, wanted to donate one of his kidneys to me. Although he was found to be a good match, he is prone to kidney stones and living with one kidney could have placed his health at significant risk,” Kinnie 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.
“When we see the remarkable difference it makes to individuals like 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.
“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.
“This Christmas is all about family for me, and my children are coming to spend time with us. My mom passed away earlier this year, and it will also be the donor family’s first year without their loved one who gave me the chance to live. My thoughts and prayers are with them, and my heart is full of gratitude. I am an organ donor too, and I know it is the most precious gift you can give.
“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.
“One thing I am especially looking forward to for Christmas is eating ice cream. On dialysis, you have to watch your phosphates, so I couldn’t have a lot of dairy products, and I also couldn’t eat much meat previously, so this year, I think I will indulge a little.”
Did you know? By choosing to become an organ donor, you can save up to seven lives after your passing, as the heart, liver, pancreas, kidneys, and lungs may help others in need of organ transplants. Keep in mind that when you register as an organ donor, you specify which organs or tissues you are willing to donate.
To register as an organ donor or for more information, contact the Organ Donor Foundation on their toll-free number, 0800 22 66 11, or visit https://www.odf.org.za.
Registering as an organ donor is free of charge for the donor, and there is no cost to the donor’s family during the organ donation process.
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