Coping with kidney failure at nine

Although kidney disease has been around for decades, I can bet majority of us know little about how adults or children suffering the disease’s tribulation view their own lives and deal with their complicated medical regimens. This is the very reason nine year old Renah Kaitesi sits long hours a week at the entrance of Capital Shoppers Supermarket in Ntinda lobbying good Samaritans for money to enable her get a kidney transplant.

She is suffering stage five of kidney disease commonly known as the established chronic kidney disease. It is also associated with names like end-stage renal disease (ESRD) or terminal renal failure. Here, haemodialysis (a process where a person’s blood is routed across an artificial membrane that cleanses it thus removing substances that would normally be excreted in urine) and kidney transplant are the only treatment options.

Kaitesi is in dismal need of the latter. On the day I met her, her weak diminutive body was slumped on a white plastic chair and in front of her was a box pasted with pictures of her in a swollen state. This is where money is dropped. 

She is trying to raise shs. 75m for a kidney transplant.

“HELP, HELP, HELP. I am nine years old and suffering from lupus-related stage five kidney failure. Please help me go for a transplant in Apollo Hospital in India. THANK YOU. GOD BLESS YOU,” read the words on the side of the box facing the entrance of the supermarket.

Her father, Julius Busingye Mujuni, a resident of Kanungu District cannot help but keep a thank you praise and a smiley face to whoever donates some money. He has paid a heavy price to keep her daughter alive. Not only did he sale his car, house and cows to raise see her alive, he also obtained a shs 4m loan from one of the district SACCOs which he has not been able to pay.

In Kaitesi’s eyes, her life is imperfect without good health and education. Before her eyes could succumb to sleep, she muttered a few words and this is what she said,

‘I am in Primary five this year and I want to study and stay alive. Please help me so that I can live and in the future help others in need like me.’

The genesis of her woes;

Kaitesi was born a normal child and up until kidney disease waned her dream of living a normal life, she studied at Kambuga Modern Primary School. In fact, at the time of her sickness, she had been promoted to primary five.

Her father, Busingye recalls the time, in May last year, when he went to visit her at school on the school’s visitation day and found that she had been plagued by a fungal infection.

She was taken to Kambugu Hospital in Kanungu district for treatment but her school life took a turn- from being the boarding section to being a day scholar.

“After two months, her body started getting swollen and she was even limping and feeling pain in her right leg and the following day, her eyes, face and legs were all swollen,” Busingye recounts.

She was again taken to Kambuga Hospital and the doctor in charge then, Dr Daniel Kasuda hinted on the fact that Kaitesi might be suffering from kidney disease.

In an earlier interview with Dr Robert Kalyesubula a nephrologist at Mulago Hospital, he explained that swelling happens when one’s kidneys lose their ability to remove different types of waste from the blood. Consequently, this leads to swelling in the legs, ankles, feet, face and hands.

Dr Kasuda prescribed drugs such as Prednisolone and Lazix for a week but before the week could elapse, Kaitesi worsened. She was then given a new drug regimen and later scanned. The scan results turned out positive- she was suffering from kidney failure.  

By this time, she could not walk, talk or see as the swelling had blinded her. She was even feeding intravenously.

In short, her condition was heart breaking.

“Because the machines and personnel could not handle her condition, we were told to go elsewhere and thus we went to Nyakibaale Hospital in Rukungiri district,” her father recalls. 

This was August, 2012. They spent a month at Nyakibaale and when all treatment options proved vain, they were referred to Mbarara Regional Hospital. The daunting history of failed treatment repeated itself and after spending September bed ridden, she was referred to Mulago hospital, the country’s national referral hospital in October.

Busingye, a driver by profession says by this time, he had spent about Shs 6m.

Mulago becomes new home;

Kaitesi was first admitted to Ward 11 at Old Mulago where blood samples were collected by the MBN Clinical laboratories and taken to South Africa. They confirmed the disturbing truth that Kaitesi had chronic renal failure. This cost Shs 160,000.

Meanwhile, her health continued deteriorating and later, the hospital’s managing director; Dr Byarugaba Baterana referred them to Ward 6A, the hospital’s renal unit. This is when she was put on dialysis. The dialysis machine is commonly referred to as an artificial kidney and a patient is recommended to use the machine at least three times a week for several hours each time.

For the first month of being on dialysis, Busingye spent Shs 4, 688, 000. This father of three including a seven months old baby had sold his cows, house and car and obtained a loan to meet the hospital’s costs.  The sacrifice is not yet worth saving Kaitesi’s life.

Contrary to her promising improvement when I met her at Mulago Hospital on World Kidney day, Kaitesi has since worsened.

“It’s devastating!” the soft spoken Busingye said, ‘Dialysis has been keeping Renah alive, but will do so only for so long. She needs a transplant and that is why I brave the cold to solicit for money needed for her transplant.”

On a good day, he collects Shs 100,000 but still this comes at a cost-that of exposing his beloved first born child to infections through the catheter (a tube that conveys blood from the body to the dialysis machine) fixed on her left upper arm.  Once contaminated, it costs Shs 300,000 to replace it and Kaitesi has had hers replaced four times already.

When not soliciting for money, Busingye spends his days and nights at Mulago Hospital or sometimes a friend’s home.

We need help!

The only cry you’ll hear from Busingye’s heart when you meet him is ‘Please help us, Renah needs a transplant.’

During the interview, he intermittently raises his head to look at his daughter and in her, he no longer sees the bright and cheerful girl she once was but one hanging on donor mercies.

Her aunt, Ruth Nuwagaba has offered to donate own of her kidneys and what is left is Shs 75m.

To help Kaitesi, please call +256 772830319/ +256 751830319 or channel in your donations to AC-5120011923-Centenary Bank, Kanungu Branch.