Organ donations are rare in SA: donors and the specialists needed to do transplants are few. But awareness increases as more lives are being saved.
The soft, quick and melodic sounds of a piano that floated across the room were punctuated by the sparse words of a hushed one-sided conversation. Pervaiz Khan, a lecturer in the film and TV department of the University of Witwatersrand's school of arts, was tense. He gripped his phone tightly to his ear, his deep brown eyes open wide.
He nodded repeatedly as if the person on the other side of the conversation could see him.
"Thanks, doctor," he said, and put away the phone.
It was Thursday, five days before Christmas in 2012, but festivities were the last thing on Khan's mind. He stared out of his study window overlooking Johannesburg and fingered the zipper on his brown jacket. As the music wound down, ending with three distinct notes – "A beautiful piece; Alessandra Celletti's Golden Fly One," announced the Classic FM presenter – Khan was brought out of his trance.
He moved to his computer to consult Google about the news he had just received.
On his way to the desk, he passed a mirror that caught his reflection. His shirt read: "John Coltrane 1926-1967", and he mulled over the dates. "He was 10 years younger than me when he died," he thought to himself.
As Khan sat down at his computer, he considered this simple, surprising reminder of his own mortality, while the doctor's words repeated in his head: "The bad news is you have cancer; the good news is that the tumour is small."
He opened the search engine and typed in "liver cancer", got more than 42-million hits and scrolled down until he found a website he trusted: mayoclinic.com. He wanted to find out more without undoing the doctor's efforts to reassure him.
He knew he had caught it early. He knew there was a very successful treatment option available to him. He knew he wasn't going to die.
The solution that Jean Botha, the head of liver transplants at Wits's Donald Gordon Medical Centre's transplant unit in Johannesburg, gave Khan was not one of the more common or traditional cancer therapies, such as chemotherapy or radiation. Khan was going to get a new, cancer-free liver.
Organ donors: hard to come by
An organ transplant is no simple process for the patient, the dozens of medical professionals involved, or the potential donor and his or her family.
According to the Organ Donor Foundation (ODF), an organisation primarily involved in creating awareness about organ donation, there are approximately 4 300 South African adults and children waiting for an organ or cornea transplant.
In 2004, there were 82 braindead donors who were able to service most patients' needs but, according to a Johannesburg-based paediatric kidney expert, Errol Gottlich, in 2012 – almost a decade later – the figure had dropped to just 73.
According to the United Kingdom's National Health Service there were 1 212 deceased donors in that country in 2012. Where South Africa has a deceased donation rate of less than two per one million the UK has almost 20. Spain has the highest rate in the world with well over 30 donors per one million.
One donor can potentially save seven lives, providing a heart, two kidneys, liver, pancreas and two lungs. But this is only if all seven organs are healthy and harvested correctly.
This means that, in 2012, the 73 donors could have, at most, saved 511 of the thousands of patients in need of new organs. But, Gottlich says, those 73 donors ended up donating just 196 organs in total.
Donation rates are low in South Africa partly because of a lack of awareness, but also because of a lack of time, resources and initiative on the part of the medical fraternity. There are 16 transplant centres nationwide, with 11 of them in Gauteng and the Western Cape and the other five spread between KwaZulu-Natal and Free State. Some are very small and run limited programmes.
"But most of these programmes are inactive, which means that, in reality, we only have three to four hospitals in the country which do transplants on a considerable scale," he says.
What happens to the donor?
Elmi Muller, president of the Southern African Transplantation Society, an organisation that tries to co-ordinate those in the field, says that a deceased donor transplantation, for which a donor has to be certified braindead by two doctors, one of whom has to have been practising for at least five years, requires a complex and collaborative effort on the part of the families involved and medical professionals.
"Braindead means a person has usually sustained an injury – a stroke or a bleed, something to the head, where the vital organs other than the brain are functioning," she says.
Doctors then have to recognise the braindead patient as a potential donor and notify a local transplant centre. Muller says a full history of the potential donor is given to the staff of the transplant unit so they can decide whether the donor's organs are usable.
"If the patient is suitable and in one of the bigger cities where we have transplant co-ordinators, who are specially trained nurses, they are sent to the location of the potential donor to take over the management of the process," she says.
The co-ordinator approaches the family or next of kin of the braindead person to ask for permission to use the organs.
Muller says that the condition of these potential donors is more often than not a result of "unexpected deaths" from accidents, which means families are often distraught and not open to considering organ donation.
"Families struggle to accept the finality of their loved ones' situation," says a transplant co-ordinator at the Donald Gordon, Kim Crymble.
"Also, families often have not discussed end-of-life wishes with each other, which makes the decision more difficult to make on someone's behalf when the time comes."
Individuals can register as a donor with the ODF on their website at odf.org.za and will receive stickers to place in their ID book and on their driver's licence. But in South Africa the family of the potential donor has to give consent, which can override this commitment.
The Donald Gordon has one of the most extensive and active transplant programmes in the country and handled 22 donors in 2013. Crymble says that, last year, 18 families of potential donors to the centre said "no" to donating their loved one's organs. Most of the organs came from private-sector hospitals.
"But if the family says 'yes', then we do a number of tests on the donor, decide which organs we can use and plan the way forward. If it is just the kidneys, for example, it's a fairly simple process," says Muller, who does transplant surgeries at Groote Schuur Hospital in the Western Cape.
But if other organs are to be used it becomes more complex, as a number of different specialist teams need to harvest the organs at the facility where the donor is being kept. If the facility is in the Eastern Cape, for example, teams have to be flown in. This can take more than 24 hours, which sometimes means that potential donors are lost for religious reasons. Muslims, for instance, want to bury their dead as soon as possible.
Once the organs are removed, the blood is flushed out and they are put on ice and transported to the hospital where the patient receiving the donation is.
What happens to the recipient?
Meanwhile, the patient must have undergone a range of tests, including bone density, lung and heart checks, to see if he or she is fit for a transplant.
A transplant operation can take between three and 10 hours, depending on the type of organ, and is physically demanding on the patient.
Khan didn't think he would have any problem with the tests, as he was active and generally very healthy. But after going through the testing process between Christmas and New Year's Day in 2012, he was shocked by the results: he also found out he had heart disease.
"They discovered I had an aneurism developing on the left ventricle of my heart, which is like a bubble that would burst at some point," he says. "I could have just been walking up the steps of the Wits art school one day and it could have popped. I would have probably died instantly."
On January 17, less than a month after finding out he had liver cancer, Khan was booked into the Netcare Olivedale Hospital in Randburg to have heart bypass surgery.
During that period, he also found out why cancer had developed in his liver – he had hepatitis B, a virus transmitted through body fluids, including blood and semen, which, if left untreated, leads to liver damage and can subsequently cause cancer.
Born in Pakistan and raised in England, he is not sure whether he contracted the virus from vaccinations in Asia or a sexual partner in Europe.
Ten years ago, if diagnosed with hepatitis B and liver cancer, he would not have qualified for a transplant. At that stage, there was no medication to treat the virus. Incidentally and accidentally, an Aids drug called tenofovir was found to suppress hepatitis B, much as it does to HIV. Khan will have to take this antiretroviral for the rest of his life so that the virus does not damage his new liver.
Waiting for an organ
The next stage for Khan was waiting for a suitable liver to become available.
"That was probably the strangest part of all. With the bypass, they just book you in and it's done. With the liver, I was told I could get a phone call at any time of the day and night and I would have to be ready to go almost immediately."
He was advised not to travel and to have his phone on or close to him at all times.
"My heart jumped every time my phone rang," he laughs.
With fewer than two donors for every million people each year in South Africa, and with the number falling as the population grows, the country is experiencing a donor crisis, according to Botha.
Some countries have strategies in place to ensure they do not experience a similar crisis. In Belgium, for example, there is a policy of "presumed consent" and people actively have to opt out of being an organ donor or their organs will be used with no permission required.
Botha says that another policy put in place to raise donor rates in other countries, such as the United States, is that all hospitals have to notify a central authority when they have a braindead patient.
In South Africa, many donors get overlooked because of the massive workload on doctors in the country's intensive care units (ICUs) and because of the extra effort required.
"They either don't even think about notifying a transplant centre or they just have too much to do and no time to spend managing a patient who is essentially dead."
Also, in provinces with no transplant centres, such as the Eastern Cape, for example, doctors who are not trained to manage braindead patients have to do so in collaboration with the centre they notify, because there are no transplant coordinators available.
"We would talk to them over the phone, giving them instructions and advice," she says.
These doctors then need to co-ordinate the transplant process and ask the family for permission.
"You can imagine that whole conversation process, explaining everything to the family, will take about two hours. Most doctors just don't have the time for that," says Muller.
Moreover, not all doctors can harvest organs; it is a specialised procedure that affects the viability of organs for transplantation.
Once the organs are removed, they are put into a sterile solution and sealed in a bag, which is then put on ice and kept at 4°C.
But different organs last for different lengths of time outside the body. A heart, for example, can last only about four hours; a kidney is still viable up to 24 hours after removal; and a liver can last between 12 and 16 hours.
The transplant operation
Khan's call for his liver donation came on April 11 last year, only weeks after being placed on the waiting list, and he rushed to the Donald Gordon to be admitted into theatre.
"It took about six hours and afterwards I discovered that it had been the liver of a large person so the surgeons had to almost shoehorn it into my body, " he says, amused by the thought of the surgeons stuffing the large liver into his abdomen.
After three days in ICU, he was moved to the transplant ward to continue recovering, where he started learning about all the things he could and could not do for the rest of his life to ensure his new liver is not rejected by his body.
The bill for the 12 different drugs he had to take in the first month came to roughly R35 000.
"Something I realised through this whole ordeal was how privileged I am to be able to afford health insurance."
He also felt privileged to be in South Africa for the procedure because, in the UK, where he spent most of his life, waiting lists for organs are much longer.
But that is likely to change. According to Botha, the waiting list is shorter because there are very few centres that do transplants in South Africa. Consequently, many patients who should be on the lists are not being referred.
However, as more people hear about transplants, the demand for organs will rise.
"Transplantation works – the word spreads, more people get referred for liver transplantation and that's now where we're heading into – the problem of not having enough organs," he says. "Our waiting lists are growing and our organ supply remains completely static."
Gottlich says that between 10% and 20% of all patients waiting for a kidney in the country die before they receive it.
He is trying to create a centralised national organ procurement body in collaboration with the Southern African Transplantation Society.
"In every other country which offers transplantation they have an organisation like this," he says.
According to Gottlich, currently in South Africa organ procurement is done by Netcare, Mediclinic and the government. This split model is inefficient and grossly underfunded.
"We have been speaking to the department of health and hope to establish such a body in the near future," he says.
Khan was lucky. He only had to wait a few weeks, but many future patients won't be as fortunate.
One year later
It is little more than one year since he got the call telling him he had cancer and during all the time he's spent in and out of hospital last year he has been reminded of the things he has always wanted to experience.
"From my 20s, I have always wanted to paraglide but I haven't got around to doing it. When my body is healed, I'm going to learn," he says.
Khan remembers that not so long ago he was taught to swim by a friend's 10-year-old son in East London. He imagines the humbling sense of learning something completely new combined with the feeling of weightlessness and the freedom of flying.
After a year of tests, surgery and healing, he looks out at the Jo'burg skyline from his Troyeville home. He is wearing his Coltrane T-shirt, now covering a healthy new liver. It has been a year of adapting – to a new diet, to medication protocols, to new terminology – and he's still here.
Below the text declaring the dates of Coltrane's birth and death he sees the quote he failed to notice those 12 months ago – something Coltrane said to a journalist many years ago: "Always trying to learn."
With a new lease on life, thanks to an organ donor, Khan can learn to paraglide or, in fact, do almost any other thing his imagination sparks a desire for.
Life support: Some of the may types of medication Pervaiz Khan had to take after his liver transplant surgery. (Delwyn Verasamy)
Everything you need to know
Who can become a donor?
Any person who is in good health and is clear of some diseases that might adversely affect the recipient, including active cancer in an organ you wish to donate, cancer that has spread throughout the body and some viruses such as hepatitis or HIV.
But a pilot HIV-donor to HIV-recipient kidney programme is currently in operation at Groote Schuur Hospital in the Western Cape.
Which organs and tissues can be transplanted?
Your heart, liver and pancreas can save three lives and your kidneys and lungs can help up to four people. Your corneas and skin can also be used.
How do I become a donor?
To register go to odf.org.za. Alert your family or next of kin about your decision so it will be honoured when you die. – Organ Donor Foundation