Beating the kidney dialysis odds

"I'd been on haemodialysis at Charlotte Maxeke Johannesburg General Hospital for three years from 2007 and saw the doctors daily. I'd learnt all the secrets of the machines and how to look after my body, picking up the first signs of anything wrong," says 41-year-old Brian, who lives in Eldorado Park, Johannesburg. Compared to the volume of state patients who need dialysis, he was one of the fortunate few, able to access this treatment.

Fresenius Medical Care, a major dialysis equipment supplier, were so impressed with Brian’s acquired medical knowledge, determination and buoyant attitude, that they hired him. Ten years ago, he became a member of Discovery Health Medical Scheme (DHMS), on the Classic Comprehensive plan. Brian was also registered to the DHMS Chronic Illness Benefit and also to the Discovery Health KidneyCare programme - which monitors quality of care for patients with Chronic Kidney Disease (CKD) and who are on dialysis.

For a decade, Brian has worked at the dialysis unit of the Donald Gordon Medical Centre (DGMC), in Johannesburg, lining and preparing the machines, counselling patients, cracking jokes and interpreting for doctors. The centre’s physicians, who work both at the Charlotte Maxeke Johannesburg Academic Hospital and the DGMC, are delighted with Brian – who no longer has to worry that he won’t be able to access this life-saving treatment, as is the case for many state healthcare patients. “I do nocturnal haemodialysis at the very place where I work. About three times a week I sleep over on dialysis for five to eight hours and get up to open doors in the morning, prepare the machines,” he explains.

Brian is passionate about encouraging organ donors and teaching patients how to avoid kidney failure. “I think it’s harder for people who develop CKD later in life. For me it’s normal - I’ve adapted,” he says.

Renal failure at the age of eight

Brian’s determination and sense of self-preservation comes from having looked after himself from an early age. Born Brian Mnisi, he lost both parents at six years old. His Zulu mother died in a tragic lightning strike while the family was visiting his grandparents in the rural KwaZulu-Natal village of Nkandla. They had travelled there from their home in Kliptown, Johannesburg. His seSwathi father was subsequently overcome by mental health problems. His Zulu grandmother in Nkandla adopted him.

Brian’s first sign of illness appeared while walking the daily four kilometres to junior school in Nkandla. He had to stop every couple of hundred metres to catch his breath. His first visit to a hospital was in Nqutu, 75kms from Nkandla, at six years old.

From there he was transferred to King Edward VIII Hospital in Durban, where treatment for a year helped his kidneys regain function. He was then taken in by an uncle in Johannesburg, who later adopted him (changing his surname to Anderson), spending the rest of his childhood in Kliptown. At eight years old Brian relapsed after being treated for a chest infection. He was put on dialysis at Chris Hani Baragwanath Hospital and later transferred to Charlotte Maxeke Johannesburg Academic Hospital where he had his first kidney transplant in 1985. His new kidney lasted five years. His second kidney transplant was in 1991 - lasting six years.

DHMS supports Brian through multiple surgeries

After his second transplant, his chances of a third plummeted because the transplant list protocols were weighted against him, but his antibody count has come down and he’s back on the list again. He has an outside chance. Besides a pericardiectomy (removal of part or most the membrane enclosing the heart when it becomes calcified and fibrous), Brian’s renal failure affected his other organs, making him a regular theatre visitor and friend of anaesthetists and surgeons through his 93 operations. “I’m shooting for 100 – then I can go for a full body transplant,” he jokes.

He’s been with DHMS for a decade. "To be honest, I’m blessed with their service. Through multiple surgeries, I’ve never had that extra stress of wondering how I was going to pay. I’m very grateful to DHMS for that," he says.

Donor organ shortages - a national crisis

Brian’s Nephrologist, Professor Graham Paget, is all too familiar with the lack of organ donors in South Africa and globally, but also understands the resource restrictions that constrain patient care in state facilities. He works both at state facility, Charlotte Maxeke Johannesburg Academic Hospital and the private DGMC. At the Charlotte Maxeke Johannesburg Academic Hospital alone, his unit is only able to chronically dialyse 10 or 20 out of 200 end-stage renal failure patients who present each year. The others may die. “And that’s just at our hospital,” says Paget. “If you add in Helen Joseph and Chris Hani Baragwanath hospitals you can triple the numbers of patients who require dialysis. Dialysis for everyone - at R250 000 per year per patient, before drugs and excluding any hospital admissions for complications - costs too much.”

The average time that patients spend on dialysis is between five and eight years. Kidney transplants are a preferable and more cost-effective solution for these patients. “We have no shortage of unexpected deaths in South Africa, so the potential donor pool is vast. The South African public seem to be simply not open to organ donation, so our hands are tied. Those years on dialysis are a lifetime for patients. We mustn’t confuse living to dialyse with dialysing to live – the first doesn’t really help.”

Both negative public perception of organ donation, fed by scandals reported on by the media about illicit the sale of organs, and also religious and cultural beliefs around donation of body parts, mean that organ donors – living or deceased - are few and far between. Even for registered donors, familial consent is still required in South Africa after brain death, and referrals from ICUs are often halted when families refuse permission.

As the symptoms of CKD are largely vague and silent, most CKD patients present with advanced disease. CKD is accelerated by lifestyle illnesses endemic to South Africa such as HIV, diabetes, hypertension, obesity and more – these illnesses cause damage to blood vessels of all sizes, and this initiates kidney disease. But, the widespread incidence of these diseases in the South African population also means the voluntary pool of viable living kidney donors is reduced as unhealthy people cannot undergo organ-harvesting surgery without risk. Parents who have these conditions are unable to donate a kidney to a child with CKD.

In 2017 only 361 solid organ transplants^[1] took place across the spectrum, of which 249 were kidney-related. Even with registered donors, familial consent is still required in South Africa for donation after brain death, and donor referrals from ICUs are often halted when families refuse permission for cultural or other reasons.

There are currently about 4300 South African listed, eligible adults and children awaiting a life-saving solid organ and cornea transplant. "We have 240 000 donors on our recently-established register and probably three times as many in people who have informed their families of their wishes to donate their organs, but haven’t registered,” says Samantha Nicholls, Executive Director of the Organ Donor Foundation. “It’s important that people register so we have a true sense of our organ-donor pool and the work that needs to be done to raise awareness so that more patients can access life-saving donor organs."

For more information on how to become an organ donor, you can call the Organ Donor Foundation of South Africa on their toll-free number on 0800 22 66 11 or visit their website.