Uganda’s parliament is scrutinizing a proposed law that would allow organ transplants to take place in the country for the first time, changing the lives of thousands who are hoping for operations.
Annita Twongyeirwe had shown herself a different future.
But since being diagnosed with kidney failure three years ago, the 28-year-old has been worried about dialysis or thinking about the next session.
“It has affected my life,” she says, looking at the defeat.
During dialysis the machine essentially performs the function of the kidneys and cleans the blood of waste products and extra fluid.
Each session lasts about four hours and she has to go to the hospital twice a week. Between sessions, she spends most of her time at home – a relative’s house – helping with tasks when she can, and watching a WhatsApp group she created through which friends and well-wishers can donate money.
“I was this ambitious girl. I wanted to go further with my studies. I was probably someone’s girlfriend or wife, so life was cut short. It took away all my dreams,” she says.
A kidney transplant could bring them back.
But an overseas operation, currently the only option, comes with a price tag of around $30,000 (£26,000) – and is out of reach for most.
Hundreds of Ugandans, like Ms Twongyeirwe, live on dialysis as long as possible. But even at the subsidized price of about $100 a week for treatment and drugs, that is more than five times the total average income in Uganda and is therefore only an option for a small fraction of the population.
The ward at Kiruddu National Referral Hospital on the outskirts of the capital, Kampala, is the only public health facility in the country that offers this service. Almost 200 patients attend the clinic regularly, many of them traveling long distances.
But they are only a fraction of those across the country who have kidney failure and need specialist care.
“They leave their families and their livelihoods behind to live near the hospital. This is an unnatural situation,” says Dr Daniel Kiggundu, the only kidney specialist working at the unit, to the BBC.
The ward is a cacophony of beeping machines, as nurses pass through dialysis stations serving patients.
Some of those receiving treatment appear to be very weak, drifting in and out of sleep, while others sit and chat with their carers.
The clinic runs two shifts a day, each taking in around 30 patients. It operates dangerously close to capacity and there is little spare time to prepare the patients for treatment.
When Mr. Twongyeirwe is for a session, she spends the night at the hospital to be ready on time.
She first realized she was ill when her whole body began to swell in 2018 and spent 18 months going from clinic to clinic before getting the correct diagnosis.
Her life was turned upside down.
She had to quit the university where she was studying law and lost her job. She also moved from her family home in western Uganda to Kampala, to live close to the hospital.
At home, the soft-spoken woman goes about washing dishes with such grace that, apart from the plaster on her arm, it’s hard to tell she’s just returned from a dialysis session.
‘I feel like a burden’
“When I return from the hospital I rest because the whole body is weak. Later, I do some work around the house to stay active,” she explains.
Ms Twongyeirwe collects the money she needs from friends and family every week.
“I feel like a burden to people who help me pay for dialysis. Whenever someone sees your call, they know they need money.”
She also approached family members to see if anyone would want to donate a kidney.
She says that cousin was happy but then she changed her mind.
Even if that offer stood, Ms Twongyeirwe would still have to raise more money and get permission from the medical authorities to fly abroad for the operation. Passing the new law would remove one of the obstacles.
Uganda would be on a short list of African countries, including South Africa, Tunisia and Kenya, that have both the regulations and the health facilities to make organ transplantation possible within their borders.
Currently the most popular destinations for Ugandan kidney patients are India and Turkey. Only close relatives are allowed to be donors and trips must be approved by the Uganda Medical Board – to prevent organ trafficking or to pressure people to offer their organs.
But if parliament approves the new measure, the process should be simpler and the cost for surgery and recovery care could drop to around $8,000.
Supporters say Uganda needs special legislation to create a safe framework under strict control to ensure there is no abuse.
The proposal includes the creation of a national waiting list for organ recipients as well as the establishment of specialized transplant centers throughout the country. A theater has already been set up at the main national hospital in Mulago, Kampala.
Organ banks will also be created for those who want to donate – and not just for kidneys
“We are [also] considering a corneal transplant for the eyes [and] skin banks for burn patients,” says Dr Fualal Jane Odubu, chairman of the Uganda Medical Board.
About 100 Ugandan health workers, including surgeons, nurses and post-surgical specialists, have already been trained abroad, mainly to perform kidney transplants.
Despite the potential for hope, there will still be a waiting list and the need to raise money.
Ms Twongyeirwe says despair is never far away.
“The other patients and I have become a family. The hardest days are when you turn up at the clinic and find out someone has died. We lost a little boy recently and he was the -hard to deal with,” she says, holding back tears. .
But for her the new law could be transformative.
“It would help patients like us to be able to get a transplant. Donating a kidney is giving someone another life.
“Some people are afraid that they will incur all the costs of traveling abroad, and you might get there, and the donor changes their mind. So if the transplant is being done here at home it’s less stressful.”