Ten People, Five Kidneys, One Domino Swap

How ten people formed a chain to save five lives
Pact
CHAIN OF LIFE  Arif Mohammad
and Umesh Dedhia received kidneys from donors while their wives donated theirs in exchange

For almost two years, an employee of the Government of India’s mint in Mumbai would routinely accompany his 58-year-old wife to and from a hospital. She was suffering from acute renal failure and needed to visit the hospital thrice a week for dialysis. The couple, Kashinathi and Sushma Khochre, would travel almost two hours by local train from their home in the far-flung suburb of Badlapur to Bombay Hospital in South Mumbai. Kashinathi would drop Sushma at the hospital and return four hours later. On their way home, she would often fall unconscious. Sometimes, she would throw up.

“She was dying in front of me,” he says. “And I couldn’t do anything.”

In another part of the city, a former 42-year-old tuition teacher was certain her husband wouldn’t survive long. A two-year wait for a donor kidney had yielded nothing. Ramesh Purao’s health was in rapid decline. The haemoglobin count of his blood was extremely low and he also had high blood pressure.

Meanwhile, a grocer in the city’s Dongri market had to endure the same trauma of uncertainty. It had been over three years since Umesh Dedhia had learnt of his diabetes-related kidney failure, but he had been unable to find a relative in his family who had a compatible blood group.

Halfway across the city, a barber was struggling to cope with the burning and swelling caused by dialysis, particularly in his feet. He was weak and exhausted, but kept working. Each work day would leave his legs bloated under the strain. “Both my wife and mother offered me their kidneys,” says Arif Mohammad, “But God had other plans.” Neither of them had his blood type, A.

On 25 June, each of them—and a patient from Rajasthan—got a second life. Forty senior doctors performed India’s largest chain of transplants ever. It involved 10 simultaneous surgeries in three hospitals, as healthy kidneys were transplanted from a compatible donor in one family to a recipient in another, thus saving all five patients.

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The chain of transplants was enabled by a 2011 amendment of India’s Transplantation of Human Organs and Tissues Act (THOTA) of 1994 that allowed donation swaps: whereby a donor-recipient pair of relatives (an old clause to prevent organ hawking) whose organs did not match could legally swap organs with another such pair. Since there are multiple blood groups, a perfect swap between two donor-recipient pairs is hard to find. But multiple swaps mean a broader compatibility field.

Soon after the change in law, Dr Ganesh Sanap and Dr Vishwanath Billa of Apex Kidney Care, which was running dialysis centres in several states and had data on plenty of patients, put together a chain of five families with individuals willing to donate a kidney to someone else in dire need in exchange for one for a member of their own family.

However, permissions for this domino swap from two of the patients’ states, Maharashtra and Andhra Pradesh, proved difficult to obtain. It took about nine months, by which time one patient had passed away, breaking the chain of five. In the meantime, they had set up a swap transplant registry. “We trawled through our registry again and again,” says Dr Sanap, a 29-year-old doctor, “but we couldn’t find donors for them again.” Of the original five, another patient died earlier this year.

Some four months ago, however, Dr Sanap visited Dr Billa in his chamber with a sheet of paper that had blood group types scribbled against names on it. “Sir,” he told his senior, “I think we can try again.”

The chain started with a computer algorithm and, as Dr Billa says, an act of kindness. The Apex Swap Registry was equipped with software to match unrelated donors and recipients and throw up random pairings: “Like a matrimonial website,” in Dr Billa’s words, “except this one saves lives.” In this case, it had come up with 10 names. On this list was a donor-recipient pair of a father and daughter who had compatible blood types. The 70-year-old father was type O, a universal donor, and he wanted to donate a kidney to his type-B daughter. They need not have joined the chain at all. But Dr Shrirang Bichu of Bombay Hospital, the daughter’s nephrologist, convinced them of how they could complete Dr Billa’s domino chain. “They were crucial, like all the others were crucial. We sat them down and pulled out our chart of ten different names,” Dr Billa says. “They looked at the names and I think somehow realised what hope their [collaboration] held out for these people.” Both the father and daughter signed up.

In the course of the next few months, Dr Billa and Dr Sanap explained to all ten how the domino swap would work, telling them how their earlier attempt had failed. When Arif learnt of the plan, he had an overriding fear. “My wife was going to give one of her kidneys,” he recounts, “But I wanted to be certain that I was getting a kidney from a young and healthy person.” To convince him, before any of the other members of the group could meet, Dr Sanap arranged a meeting between Arif and Smita. “I was happy when I saw her,” Arif says. “It was not just that she was healthy and young. She spoke about her husband and his illness. And in her story, I also saw my own.”

Once they all met, the five families found themselves in a mutual embrace of empathy. They exchanged phone numbers, and over the next four months, made a point of reaching out to one another, especially their own donors or recipients. “We didn’t just become friends,” says Surekha Dedhia, “It was more than that.” Kashinathi fondly remembers the day they all met. “They were just names for each of us initially. But when we met each other, there was an instant connection. Each of us had a similar story of helplessness. And now here we were, giving each other hope.”

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After that came the challenge of paperwork. The doctors were particularly anxious about getting a nod from the Maharashtra and Rajasthan governments. After their last chain had fallen apart, Dr Billa had written to the Maharashtra Health Ministry blaming it for the patient’s death. Dr Pravin Shingare, the head of Maharashtra’s directorate of medical education and research, had apologised and promised to hasten matters if such a chain were attempted again. So this time, the state quickly granted the request.

But the Rajasthan government was proving unhelpful. The State Organisation Committee refused to allow the family from Rajasthan to participate in the arrangement, arguing that Supreme Court guidelines made no mention of any ‘domino’ procedure. Other problems kept cropping up too. Ramesh Purao’s health was deteriorating. His haemoglobin count was perilously low and doctors were trying to raise it to ensure that he could participate in the chain of surgeries. “Each life was dangling by a thread,” says Dr Billa. “We did not know if we would pull it off.”

A few patients were also facing a financial crunch. Smita had quit teaching two years earlier to take care of Ramesh. Now, with over Rs 5 lakh required for the surgery, she sold a plot of land she had inherited from her parents in Aurangabad. Kashinathi, who had already used up most of his life’s savings to treat his wife, took a loan of over Rs 3 lakh from friends and relatives. Arif was being helped by his brother who had taken charge of his barbershop. And Umesh Dedhia had not been able to open his grocery store for almost two years. “The money, we were all going to somehow arrange,” says Arif, “But now we didn’t know if the government was going to allow it.”

Publicity helped. A few days after DNA ran a report on how the Rajasthan government had refused to okay the procedure, the Rajasthani family approached the authorities again and got permission.

There was much paperwork in Mumbai too. Earlier in June, for their request to be processed, the ten individuals involved had to appear before the state authorisation committee in the city. One of the criteria for the swap was that they had to be of ‘sound mind’ and could thus not have been forced to participate. Kashinathi remembers a committee member asking them if they were sane. “‘Sir,’ I told him. ‘Don’t you think we would be mad to not make this request?’”

The requests were granted and the surgeries slated for 25 June. All of them had to be done simultaneously, so that no donor could break the pact after his or her relative had received a kidney. Surekha, who was donating her kidney to Sushma at Hiranandani Hospital, was speaking with her husband Umesh on the phone as she was being wheeled into the operation theatre. Umesh was in Bombay Hospital, at the southern end of the city. She recalls being a little anxious and wishing he was with her. The doctor with her noticed this; just before she was administered anesthesia, she remembers his asking her the last film she had watched in a theatre. It had been many years earlier, before her husband’s illness: Ghajini. “It was a happy thought,” she says, “I blanked out immediately after.”

When she recovered many hours later, there was another doctor by her side. All the operations had succeeded, he told her, and her husband was well. Her first question was about her recipient: “And what about Sushma? How is she doing?”

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Dr Billa says that while cadavers or brain-dead individuals account for most donor kidneys in the West, live donations make up most cases—though fewer in number overall—in India. This is because post-demise organ donation is rare here, and getting a cadaver kidney could take “between six years to a lifetime” as Dr Billa says. According to him, until organ donations become routine, patients must rely on relatives and domino swaps.

Of late, Dr Billa has devised another plan to tackle India’s shortage of kidneys. As Apex’s registry expands, he can create several chains of individuals with compatible blood types, like he did for the domino swap of 25 June. This chain, however, would not need a starting donor; a cadaver will be used to start the chain. It’s an interesting idea, but will require planning, logistics and government approval.

Again, publicity would perhaps help promote the cause. The day after the success of the recent domino swap, Dr Billa received a call from Satvasheela Chavan, Maharashtra Chief Minister Prithviraj Chavan’s wife. Dr Billa says she told him she was thrilled to read of the operation in the papers. Dr Billa thanked and told her about his other plan. “She has promised to look into it and try getting me an appointment with the [state] health minister,” he says.