This week marks National Kidney Awareness Week and we get to meet the young South Africans that are sharing their stories to raise awareness.
South Africa (05 September 2023) – National Kidney Awareness Week is celebrated in South Africa from 4-8 September. TELL (Transplant Education for Living Legacies) is putting the spotlight on the benefits of a kidney transplant for kids with End Stage Kidney Disease (ESKD).
End Stage Renal Failure
End Stage Kidney Disease (ESKD) means that both kidneys stop working and the kidney function drops to 15% or below when this happens, the patient is required to receive dialysis as too much toxins in waste build-up affects the child’s brain development and function causing learning disabilities. The cause of kidney failure in children is birth defects and genetic conditions such as inherited kidney disease that cause the filters to become inflamed or leaky.
There are two types of dialysis, peritoneal dialysis (PD) and hemodialysis (HD). Usually, children will receive peritoneal dialysis as younger children do not tolerate HD very well.
“During peritoneal dialysis, a cleansing fluid called dialysate passes through a catheter tube into part of the abdomen known as the peritoneal cavity. The dialysate absorbs waste products from blood vessels in the lining of the abdomen, called the peritoneum. Then the fluid is drawn back out of the body and discarded” – Mayo Clinic.
This process can be done manually 3-4 times during the day or for 10-12 hours continuously during the night.
Tlotlego Mabale, now 11 years old from Centurion, waited for 7 years for a kidney transplant. Mom Refilwe Sangola describes the time spent on peritoneal dialysis:
“Everyone in the family took strain as we were not able to travel and visit family or friends. And during the day when he was playing, he constantly had to come back inside so that he could dialise. He was not allowed to swim due to the fact that the tenckhoff catheter had to be kept dry and the risk of infection was very high. He loves swimming so that was something that didn’t sit well with him, also having to constantly watch what he was eating with the fear that things might go terribly wrong was also very strenuous for him. Most of his favourite foods were the foods that he was not allowed to eat, you could see how sad that was making him.”
Hemodialysis is a process where blood is removed from your body, 200ml per minute, and pumped through a machine that filters wastes, salts, and excess fluid. This process takes 3-4 hours and treatment is done 3 times a week. To get the blood in the dialyser, an access point will be created via a fistula or catheter.
Walt Esterhuysen, now 16 years old from Potchefstroom was on the waiting list for a kidney for two years and three months.
Walt says this about hemodialysis: “Life was a boring routine with dialysis 3 times a week and watching everything I ate. I could not spend a lot of time with my friends.”
Dialysis is an expensive ongoing treatment that requires time and medical expertise. Dialysis does not perform all the functions of a healthy kidney such as keeping bones healthy, making red blood cells, and managing blood pressure. Dialysis gives a patient about 15% kidney function whereas a healthy kidney works 24/7. Children on dialysis need to restrict fluid intake and follow a strict diet, avoiding foods high in potassium and phosphates.
Dialysis is an inadequate treatment for children as it can result in deceleration of growth.
Kidney Transplant
A kidney transplant is a surgical procedure where a healthy kidney from a living or deceased donor is placed in a patient’s abdomen, the recipient will usually only receive one kidney. The native kidneys will not be removed as they usually shrink due to ESKD.
A Kidney transplant is the preferred choice of treatment for children suffering from End Stage Kidney Failure (ESKD). Young children have the best long-term graft (transplanted kidney) of any of the age groups of recipients. The recipient (child) goes through extensive tests before they are put on the waiting list for a transplant or cleared to receive a transplant from a living donor, this is to ensure that they are ready for the operation.
A kidney transplant confers survival, skeletal growth, health-related quality of life and neuropsychological development compared to dialysis. Most transplant centers will perform a transplant when the kid achieves a weight above 10-15 kg and this is usually at age two.
A kidney transplant is not a cure for kidney failure but offers a better quality of life. Children are free from time-consuming dialysis and eat a normal healthy diet. It restores normal body physiology and allows kids to grow and develop normally.
Walt received a kidney from his Aunt Marelize Visser in 2021.
He says this about life after the transplant: “Life is a whole lot better. I’m free from long dialysis sessions and can play with my friends and do more sports than I ever could. I am very happy.”
Marlize Visser says the moment that she heard that Walt needed a kidney transplant, he would receive her kidney.
A potential living donor goes through extensive medical tests to confirm that they are healthy enough to live life with one kidney. This is how Marlize describes the emotion when the transplant coordinator confirms that she is a match for Walt.
“It was the same kind of excitement when you find out that you are going to have a baby.”
Walt, on the other hand, says even though he was ecstatic when they told him, he almost did not register what he’d just heard. He was very relieved.
Children are given priority on the waiting list. Living donors are not always an option as the parents, family, or friends may not be a match or have underlying medical (health) conditions that prevent them from donating. Financial consideration may also prevent a living donor from coming forward, as the donor needs to stay home for at least 6 weeks to recover and this may place a financial burden if the potential door is the sole breadwinner.
Being on the waiting list can be challenging; Refilwe (Tlotlego’s mom) describes the disappointment when they received the call that a potential donor was found:
“The first time we were called, we arrived at 8pm at the hospital and had to wait for the final cross-match test to be done. Unfortunately, at around 2am in the morning, they told us, that the potential donor was not a match. We had to go home, we were very sad, but at the same time very happy for someone else that will receive the gift of life.”
When they were called up a second time, Tlotlego was positive this would be his chance for a better quality of life:
“He kept on saying: “today I’m going to get it, Mama, today I’m going to get it.”
“He was so happy and, while we were still on our way to the hospital he was already naming things that he was going to do after the transplant, making lists of places he wanted to visit, things that he wanted to do, foods that he wanted to eat it was very exciting it was very unbelievable.”
A kidney transplant lasts on average 10 years, which means a child will probably need two or more transplants in their lifetime. The immune suppressant medication that the recipients must take to prevent rejection, does also cause damage to the transplanted organ. A transplant still gives a better quality of life for the recipient as well as their family.
You could one day be the person who saves the life of a little boy like Tlotlego; by having a conversation with your loved ones and telling them that one day you wish to be an organ donor.
For more information about kidney donation, please visit TELL’s social media pages @tellorgza, website at www.tell.org.za or e-mail: info@tell.org.za
by 