Year of organ transplants: How 2016 changed these people's lives

Correct diagnosis, chance match within the family, and grieving families’ courage to agree to cadaver organ donation; all have the power to prevent lives from slipping away. Four people share stories with DNA, and assert how important each of these things are. They also hope that the miracle they saw, sees someone else in need too, soon.

Organ donation in particular continues to need a push, and more awareness. While in countries like the US and Britain, about 40 per cent of families agree to donate organs of a brain dead patient, in India the rate of such donations is less than 2 per cent, say experts. A good thing this year was that more people now realise how important it is. Mumbai this year had it’s highest numbers of cadaver organ donations — 58 until December 27 this year. Delhi too, saw many campaigns to raise awareness on the issue. After all, lives depend on it.

10 years on, her heart finally beats easy

Hemlata Patil        
28, treated for a rare
heart condition

She was in Class 10, an important year for students in India, when a persistent cough and fever began to ravage her. Local physicians initially treated her for a liver condition but she continued to feel weak. Her worried father, Jayram Hari Patil, a policemen, took her to several doctors to find what was wrong with his little girl. “After years of misdiagnoses, in 2011, a local hospital in Bhiwandi told us she had TB. We took her to Sion Hospital, where she spent a month,” Jayram says. A year after completing her TB treatment, Hemlata, then 24, continued to suffer from breathlessness and weighed a mere 30 kg. While she somehow managed to pursue Bachelors of Arts, she was too weak to take up a career. Doctors then diagnosed her with a rare disorder, pericardial tuberculosis — a condition in which the outer layer of the heart hardens, putting pressure on it.

“It was only earlier this year when we learned about the heart condition,” says Hemlata. In February, she underwent a heart surgery, where doctors removed the hardened layer of the heart, the pericardium, in a four-hour procedure.

“Pericardial tuberculosis occurs in approximately 1 to 2 per cent of patients with pulmonary TB. She lived with the condition for about 10 years. It took us 15 days to stabilise the patient before we could perform the high risk surgery. She hadn’t even menstruated because she has been sick for so long,” says Dr Zakia Khan, Consultant Cardiologist, Fortis Hospital, Kalyan.

Six months since the surgery, Hemlata is now beginning to reach a healthy weight, and has also started menstruating. For Hemlata, 2017 is finally going to see her move forward after a decade of pain.

A mother lives another day, with a new heart

Rubina Patel        
33, cadaver heart recipient

Until two years ago, life was going as Rubina Patel had hoped it would: a job at a shipping company after college, then marriage, followed by the birth of a beautiful baby boy. September 2015, however, brought along a curve ball, a diagnosis of terminal and end-stage heart failure. In April 2016, doctors at the Kokilaben Dhirubhai Ambani Hospital, Mumbai, advised on a heart transplant. Rubina confesses that until then she wasn’t even aware that a heart could be transplanted. Two months after she registered for a transplant, they found her a cadaver heart match. “It’s difficult to find a donor for any organ, let alone a heart, and one that would be a match for me? I feel fortunate each day. I know that the heart I have belonged to someone no longer alive. I am eternally grateful to the donor’s family for their decision.”

After her surgery, with concessions from the hospital, some help from a trust, a savings pool from her family, Rubina says, “I can finally breathe comfortably and sleep peacefully. Apart from certain precautions like avoiding crowded places for infection risks, I lead a normal life,” she says. “My family and I wish we could meet the donor family and thank them in person, but transplant policies do not permit disclosing cadaver donor details. If I ever get a chance to meet them, I won’t be able to thank them enough, as they are the reason my child still has his mother.”

Braving liver disease, demonetization and political turmoil

Bhaskar Singh        
30, Liver Transplant recipient

Thirty-year-old Bhaskar Singh confesses that he wasn’t even sure if he was going to see the new year; a taken-for-granted idea for most of us. Bhaskar’s ordeal began 10 years ago in 2006, when he underwent a gall bladder removal surgery. Doctors suspected that the procedure was not conducted correctly, scarring his liver. An engineering student at the time, he struggled to complete his studies while he grappled with unexplained symptoms, until 2009, when he vomited blood. “Doctors told me that my liver was under-performing, and I was throwing up blood from my food pipe,” he tells us. “I couldn’t continue treatment at Manipur and had to come to Delhi, first to the Institute of Liver and Biliary Sciences, and then to Fortis.”

He underwent multiple ‘stenting’ surgeries over the last two years. “Stents were inserted to widen my bile duct, but stones would reappear soon enough.” As all alternatives failed, last year doctors told him that a transplant was the last resort. Bhaskar believes he was lucky to find a match with his younger brother Nishimkanta. However, that was not the end of his ordeal, as demonetization played spanner. “Everyday for about 25 days, I had to stand in queues for up to 12 hours to withdraw cash. I managed to collect about Rs 3 lakh, with help from relatives.” The transplant cost him nearly Rs 25 lakh, and the rest was paid through cheques. His younger brother donated about 70 per cent of his liver, that was transplanted into Bhaskar on December 5. The liver can regenerate in three months, but the transplant surgery has risks, and the recovery of the donor and the recipient is very crucial.

With a new lease of life, Bhaskar says finding a job is now a priority, so he can assist his family. While he continues to recuperate in Delhi, he is worried about his brother’s health, who returned to Manipur after the donation.

“The ongoing political turmoil in Manipur has made it difficult to speak to them. There is no internet in the town right now, and medical facilities are hard to come by. Getting oil or petrol is a peril. There are blockades and counter blockades by rebel groups and security forces all the time leading to curfews. People are suffering endlessly,” he says.

3-year-old finally has a chance at life now

Shriraj Jedhe        
3, paediatric liver transplant receiver

Shriraj Jedhe’s case is among the handful of paediatric liver transplants in Mumbai. “He’s been unwell since he was five-and-a-half months, and had to be hospitalised every six months,” says Gayatri, his mother. Shriraj was diagnosed with Budd Chiari syndrome — a rare disease that affects one in a million, where blood clots block blood flow from the liver. As his condition worsened earlier this year, doctors at the Bai Jerbai Wadia Hospital for Children, Parel advised a liver transplant. “Paediatric transplants account for about 10 per cent of all transplants. Small size of the liver makes it challenging,” says Dr Vinay Kumaran, Head, Transplant Surgery, at Kolikaben Dhirubhai Ambani Hospital, where the procedure was performed.
“The first three months were painful. I was unable to move or eat, but now I am back to doing all my household chores,” says Gayatri. “Children who receive the transplant need to be on medicines lifelong, but it gives them a chance at normal life. In cases where the donor is a parent, the body responds better, and medicines can be discontinued after some time,” says Dr Kumaran. “The operation cost us around Rs 25 lakh. We paid from our savings, trusts, and our relatives helped us too, or we would not have been able to afford it,” says Gayatri, who lives in Badlapur with her husband, their six-year-old daughter Sharvari, and Shriraj. Gayatri has finally had her wish, “My child plays a lot. His growth has caught up and his weight has increased too.”