Organ Swaps: The Domino Chain of Life

AS PRATIBHA DAREKAR began to undergo two sessions of dialysis every week to keep a check on her rapidly failing kidneys, her husband Manohar Darekar started a frantic search for a compatible donor. Taking a long hiatus from work, and excusing himself from his labour union and housing society meetings where he held formal positions and which he enjoyed participating in, Manohar, a Central Bank of India employee in the Mumbai suburb of Kalwa, searched through Pratibha’s family and his, trying to find someone with her blood type (A+), who might be willing to donate one of his or her kidneys. “I knew I had little time,” Manohar says. “She would otherwise not be able to make it. 

One of Pratibha’s brothers turned out to have the same blood type, but the doctors ruled him out for poor health. Eventually, Manohar realised that his sister possessed type O, the universal donor blood group. She readily agreed to donate one of her kidneys. But, as Manohar began to consider it, he was overcome with guilt. “What if something were to happen to my sister? My family was already in a bad way. It would be wrong to risk my sister’s [family] as well,” he says. 

During this period, he learnt of a novel procedure from one of his friends. “Doctors, I heard, could swap kidneys,” he says. “My kidneys, for instance, could go to a patient with my blood group. And somebody healthy from that patient’s family could donate his or her kidney to my wife.” 

Late that night, without telling anyone in his family lest they try to convince him otherwise, Manohar met his wife’s nephrologist at around 10.30 pm. Hesitantly, he asked, “Is it true? Can I swap my kidneys.” 

A few months later, he received a call from the doctor. The doctor hadn’t found another pair with blood groups that would match the Darekars’. He had instead found a chain of five pairs of donor-recipients, and the Darekars, with an A+ kidney requirement and a B+ donor, could fit right in. “Of course, we agreed,” Manohar says. The Darekars became the sixth pair. 

On 25 January 2014, five nephrologists, six assistant nephrologists, 12 anaesthetists, 12 urologists, six vascular surgeons, 24 assistant surgeons and 24 nursing staff came together to conduct India’s largest domino kidney swap to date on 12 patients, six of them donors and six of them recipients, in three different hospitals in Mumbai. In operations that began simultaneously, to ensure nobody could back out and snap the chain, healthy kidneys were transplanted from one donor in one family to a recipient in another, till 12 lives were connected and six lives saved. 

Manish Yashwantrao, a 25-year-old individual who was one of the recipients in this chain of operations, remembers his astonishment at seeing the number of people in the operation theatre just as he was blanking out before the procedure. “It was like a circus,” he says. 

Over the years, driven by news of organ trafficking in the country, India has brought in strict legislation around organ transplants. Not only can organs not be purchased and sold, nobody, save near relatives, can donate one’s organs to patients. But with very few individuals willing their organs for donations upon death in India, what this has entailed, unfortunately, is a huge queue of patients who desperately require organs. According to Dr Vishwanath Billa, a senior nephrologist in Mumbai, on any given day there are at least 3,500 patients in need of a kidney. It takes between two-and-a-half and five years for a patient to reach his turn to receive a kidney from a cadaver. This is the same, if not worse, with liver donors. “Many of these people, their lives are dangling by a thread,” says Dr Ganesh Sanap from Apex Kidney Care which runs a swap transplant registry. “If they don’t receive an organ soon enough, they will die.” 

Now, the medical community, both in private and a few government hospitals, is trying to deal with this issue of long cadaveric organ waiting lists and incompatible donors within the family, by swapping organs. They are not just conducting straightforward binary swaps, where a donor gives an organ (say, a kidney) to an unrelated recipient; the recipient’s healthy family member then donates one of his kidneys to the earlier donor’s ailing family member. They are also creating large and intricate chains of several families, where one healthy organ is transplanted from a compatible donor in one family to a recipient in another, the chain moving on this way until the last donor in the chain donates his kidney to the first recipient in the line. 

Understanding this need for kidney swaps, Dr Billa and Dr Sanap from Apex Kidney Care, which runs dialysis centres in several states and has data on plenty of patients, have started a registry, Apex Swap Registry, that tries to find compatible families to swap organs with. So far they have conducted over 50 swaps, both binary and domino. 

When I meet Dr Sanap, himself recovering from a serious ailment that has meant he remains indoors for several months, I find him under a warm woolen cap, with a diary in one hand and several medical files in another. “It is crazy,” he says. “I just got a call from Madhya Pradesh asking if they can register themselves.” Marked in one page of the diary are the names of six individuals, three donors and three recipients, arrows in black ink linking one to the other, who will be undergoing swap transplants by the end of March. 

So far, a rudimentary computer algorithm has managed to find links within the registry’s database of patients and donors. There are around 300 people on the registry, but as word spreads, more people keep signing up. Dr Billa used to worry that eventually when the database expands to include many patients from across the country, the algorithm would prove inadequate. A little over a year ago, Dr Billa happened to be speaking about this issue with the son of a patient, Narayan Rangaraj, who works as a professor at IIT Mumbai. “He said, ‘This is exactly the stuff I do, doc.’” 

Since then, Rangaraj, along with a team from IIT, has been working along with Dr Billa and Dr Sanap, to create a more complex algorithm that will be able to more effectively manage the registry. Like a matrimonial website that saves lives instead, as Dr Billa likes to say, this algorithm, according to him, will be able to match huge numbers of donors and recipients in different hospitals across the country, factoring in several things like the age and health of patients and donors, to form binary links and long domino chains with minimal mathematical probability of failure. The algorithm is in the process of securing a patent, and, according, to Dr Billa, should be ready for use as an application by year end. “Eventually, patients and doctors should be able to use this registry to find links and matches in the same cities,” he says. In the future, Dr Billa hopes that the algorithm will keep several chains of donors and patients ready for domino transplants. Whenever a cadaver becomes available, one of its kidneys will be entered as ‘first donor’ in one of those chains. “A pair of kidneys from a cadaver, instead of saving two lives, will that way save so many more,” he says. But this will require government permission, and that, he admits, will take time. 

While swap transplants are more commonly used for kidneys, it is not limited to them. Since the first liver swap transplant conducted at Delhi’s Sir Ganga Ram Hospital in 2009, several other hospitals have followed suit. According to Dr Ravi Mohanka, a liver specialist at Global Hospital in Mumbai, every year at least around four liver swap transplants are carried out in the country, most of them in Delhi and Mumbai. 

In most Western countries, liver swaps are rarely done, since, as Dr Mohanka points out, there are enough cadaver donations to fulfil the need for liver transplants. “In India, cadavers only make up for about 15 per cent liver transplants,” he says. “So we are actually one of the few countries where quite a few liver swap transplants occur.” 

EARLIER THIS YEAR on 7 January, Dr Mohanka was part of a liver swap transplant involving a couple from Nairobi in Kenya and another from Pune. Deepti Gadhvi, a popular television anchor in Nairobi, better known by her professional name Anjlee Gadhvi Noorani, was first detected with liver cancer in 2014. Despite a surgery, several sessions of chemotherapy and radio-frequency ablation (a line of treatment where a needle electrode destroys cancer cells through heat), the cancer kept returning. Her husband was willing to donate part of his liver, but his blood type was incompatible. Last year, Meena Ranawade brought her husband, Balu Ranawade, to Global Hospital. Balu, a patient of liver cirrhosis, was desperately in need of a transplant. “Balu’s and Meena’s blood group matched those of Deepti’s and her husband [Mohammed Noorani’s] perfectly. We immediately phoned Deepti,” Dr Mohanka recalls. But the cost of the procedure was going to be a problem for Deepti. In October last year, Deepti went on radio to speak about her ailment. In 24 hours, the appeal was able to raise around 8 million Kenyan shillings (some Rs 53 lakh.) “Everything came together so smoothly, right from getting permissions to the surgery itself,” Dr Mohanka says. 

There are, however, complications. While the 2011 amendment to the Transplantation of Human Organs and Tissues Act of 1994 expanded the concept of ‘near relatives’ who can donate an organ to a patient to include grandparents and grandchildren (prior to this only spouses, siblings, parents or children were considered ‘near relatives’ who could donate organs) for ‘swap transplants’, which got a legal mention for the first time, it was restricted only to spouses, siblings, parents or offspring. Also, for every such swap transplant, the donors need to secure permission from their respective state authorisation committees, which can take anywhere from half a year to a lot longer. According to doctors, many states appear to be suspicious of swap transplants. 

Sometimes permissions are refused for flimsy reasons. Last year, a proposed domino swap involving three pairs was denied by the statue authorisation committee in Maharashtra because one pair involved an uncle and a niece, which isn’t considered to fall under the legal definition of ‘near relative’. Upon appeal, however, permission was granted. In 2011, permissions from two patients’ home states, Maharashtra and Andhra Pradesh, took nine months to secure, by which time one patient died and the entire chain broke down. “Many of these patients, you must understand, are badly in need of organs,” Dr Sanap says. “Every day spent waiting brings them closer to death.” According to Dr Mohankar, as more and more swaps are conducted, this is bound to get rectified at some point. “Somebody needs to take up the matter,” he says. 

Last month, an NGO, Narmada Kidney Foundation, which helps patients suffering from kidney ailments, filed a PIL in the Bombay High Court arguing that processes and rules around swap transplants need to be altered. Dr Bharat Shah, a senior nephrologist and the founder of Narmada Kidney Foundation, says, “Why should people who fall under the category of ‘near relatives’ need to get permission from state authorisation committees? They are participating in swaps, donating an organ to an unrelated patient, so that their near relative receives an organ in return. If you look at it this way, there is no reason to delay or deny permission to them.” Under the current rules, only near relatives in direct transplants don’t require permission. The Foundation has also argued for the preparation of a database which enables family members looking for swaps to find matches. The Bombay High Court has asked the government to respond to these arguments within four weeks. “So far,” Dr Shah says, “It’s looking good. Hopefully we can get this issue resolved.” 

Even as this issue of swap transplants gets legal clarity and technological improvements in the form of complex computer algorithms bring about mathematical precision in connecting and ensuring successful transplants, the power of human kindness cannot be understated. 

In 2013, five pairs of donors and recipients successfully underwent kidney domino transplants, because one pair, a father and a daughter, participated in it when they needn’t have at all. Shweta Kaushik, a teacher with a B+ blood type who was in need of a healthy kidney could have gotten her kidney from her father, a universal donor with type O. They need not have joined the chain at all. “That’s how we had planned it,” says Kaushik, “But when the doctors told us about the other four patients, we felt we should help them too.” Kaushik and her father stuck on, even when the state authorisation committee from Rajasthan initially declined their proposal. 

Since the transplant in 2013, the people who participated in those operations have developed a close friendship. They wish each other on religious festivals, often speak on the phone, and occasionally meet up too. As befits a special moment, when ailing strangers came together to help each other survive, more than just organs were exchanged. 

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