Uganda’s parliament is scrutinizing a proposed law that would allow organ transplants to take place in the country for the first time, transforming the lives of thousands hoping for the operations.
Annita Twongyeirwe had imagined a different future for herself.
But since he was diagnosed with kidney failure three years ago, the 28-year-old has been busy either with dialysis or thinking about his next session.
“It’s taken over my life,” she says, sounding defeated.
During dialysis a machine essentially performs the function of the kidneys and cleans the blood of waste products and excess fluid.
Each session lasts about four hours and he has to go to the hospital twice a week. Between sessions she spends most of her time at home – a relative’s house – helping out with chores where she can and following a WhatsApp group she has set up 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 going to be someone’s girlfriend or wife, so that whole life was cut short. It took away all the dreams I had,” she adds.
A kidney transplant could bring them back.
But an operation abroad, 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, who like Ms. Twongyeirwe cannot afford it, live on dialysis for as long as possible. But even at the subsidized price of about $100 a week for treatment and drugs, that’s more than five times the average total income in Uganda and is therefore an option for only a small fraction of the population.
The Kiruddu National Referral Hospital ward on the outskirts of the capital, Kampala, is the only public health service in the country that offers this service. Nearly 200 patients regularly visit the clinic, many of whom travel long distances.
But they represent only a fraction of those across the country who are living with kidney failure and need specialized care.
“They are leaving their families and means to live near the hospital. This is an unnatural situation,” Dr Daniel Kiggundu, the only nephrologist working at the unit, told the BBC.
The ward is a cacophony of beeping machines as nurses weave through dialysis stations tending to patients.
Some of those receiving treatment appear extremely weak, sleeping and not sleeping, while others sit and chat with their caregivers.
The clinic operates two shifts each day, each seeing about 30 patients. It is operating dangerously close to full capacity and there is little free time to prepare patients for treatment.
When Ms. Twongyeirwe is scheduled for a session, she spends the night at the hospital to be ready in time.
She first realized she was unwell when her entire 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 drop out of 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 near the hospital.
At home, the soft-spoken woman goes about washing dishes with such grace that, apart from the cast on her arm, it’s hard to tell that she’s just returned from a dialysis session.
“I feel like a burden”
“When I come back from the hospital I rest because the whole body is weak. Later, I do some chores around the house to stay active,” she explains.
Ms Twongyeirwe raises the money needed every week from friends and family.
“I feel a burden on the people who help me pay for dialysis. Whenever someone sees your call, they know you want money from them.”
She has also reached out to her family members to see if anyone would be willing to donate a kidney.
He says a cousin of theirs was willing but then changed his mind.
Even if that offer had stood, Ms Twongyeirwe would have had to raise more money and get approval from medical authorities to fly abroad for the operation. If the new law is passed, then one of the barriers will be removed.
Uganda will join a short list of African countries, including South Africa, Tunisia and Kenya, that have both the regulations and the health facilities to allow organ transplants within their borders.
India and Turkey are currently the most popular destinations for Ugandan kidney patients. Only close relatives are allowed to be donors and travel must be approved by the Uganda Medical Council – to prevent organ trafficking or coercing people to donate their organs.
But if parliament approves the new measure, then the process should be simpler and the cost for surgery and recovery care could drop to about $8,000.
Those who support it say Uganda needs special legislation to create a safe framework under strict regulations to make sure there is no abuse.
The proposal includes the creation of a national waiting list for organ recipients as well as the creation of specialized transplant centers throughout the country. An operating theater has already been set up at the central national hospital in Mulago, Kampala.
Organ banks will also be set up for those who want to donate – and not just for kidneys
“We are [also] I am considering corneal transplants for the eyes [and] skin banks for patients who have burns,” says Dr. Fualal Jane Odubu, president of the Uganda Medical Council.
About 100 Ugandan health workers, including surgeons, nurses and post-operative specialists have already been trained abroad, mainly in performing kidney transplants.
Despite the hope this could bring, 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 show up at the clinic and find out someone has died. We lost a baby boy recently and it was very 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 have transplants. Donating a kidney gives someone another life.
“Some people are afraid that they will incur all the expenses of traveling abroad and you might get there and the donor changes their mind. So if the transplant is done here at home, it’s less stressful.”