Organisation puts spotlight on kidney disease

National Kidney Awareness Week is celebrated in South Africa from September 4 to 8.

Transplant Education for Living Legacies (TELL) is shedding more light on the benefits of a kidney transplant for children with end-stage kidney disease (ESKD).

“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 many toxins in waste build-up affects the child’s brain development and function causing learning disabilities,” Stella de Kock explained.

She said 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). De Kock highlighted that 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,” according to the Mayo Clinic.

This process can reportedly be done manually three to four times during the day or for 10-12 hours continuously during the night.

Tlotlego Mabale, now 11 years old, from Centurion, waited for seven years for a kidney transplant.

Describing the time spent on peritoneal dialysis, his mother Refilwe Sangola, said everyone in the family took strain as they were not able to travel and visit family or friends.

“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,” she said.

She said most of his favourite foods were the ones that he was not allowed to eat and that made him sad.

Hemodialysis is described as 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 three to four hours and treatment is done three 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 said: “Life was a boring routine with dialysis three 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,” De Kock said.

De Kock said dialysis is an inadequate treatment for children as it can result in deceleration of growth.

Kidney transplant

According to De Kock, 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.

She explained that 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 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,” she explained.

A kidney transplant confers survival, skeletal growth, health-related quality of life and neuropsychological development compared to dialysis.

Reports suggest most transplant centres will perform a transplant when the child achieves a weight above 10-15 kg and that 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,” said De Kock.

Walt received a kidney from his aunt, Marelize Visser, in 2021.

He said: “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 said 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,” De Kock said.