Arunachalam* spent two years consulting a general physician despite knowing that his kidneys were damaged. “When I became too weak and tired to continue with the monthly check-ups and tablets, we approached a hospital in Tiruchi,” says the 44-year-old Mayiladuthurai-based goldsmith. “If I had sought proper help in the beginning, we may have spent less money on treatment.”
The eventual outcome: dialysis for six months to stabilise renal function, followed by a kidney transplant from his wife in April, 2014.
Mahesh* was unconscious when his family members rushed the former factory manager from Kumbakonam to a private hospital in Tiruchi. Mahesh had been trying allopathic and alternative therapies to deal with his malfunctioning kidneys for four to five years, but they only seemed to create chronic fatigue and intense breathlessness. He had collapsed after losing up to 38 kilos in a month and a half.
Mahesh’s mother saved his life by donating one of her kidneys to him in August, 2015. “I wasn’t scared for myself, but I wanted my son to become all right,” she says.
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Organ transplantation in the country has become more prevalent as Indians feel the impact of lifestyle diseases like diabetes and hypertension.
According to a report published online by the Tamil Nadu Organ Sharing Registry (tnos.org), the State leads in deceased organ donation in the country with an organ donation rate of 1.8 per million population in 2013. The national organ donation rate in 2013 was 0.26 per million populations.
Tamil Nadu’s organ donation system, based on stringent government monitoring and a centralised donor registration, is seen as a model for the rest of India.
The 1994 Transplantation of Human Organs Act legalised for the first time, the concept of brain death which paved the way for hospitals to harvest organs from donors whose hearts were beating, but who had lost the ability to breathe independently due to irreversible brain damage.
However, organ donation got mired for a while in allegations of trafficking as stories of ‘kidneys for sale’ were widely reported.
There has been a renewed push to make organ transplantation an ethical process in the past decade, with the backing of the State government.
“Every transplant has to go through a monitoring committee, which does the due diligence so that the hospital’s responsibility is taken away,” says S. Mannivannan, Joint Managing Director, Kauvery Hospital, which operates in Tiruchi and Chennai. “We are here to diagnose and treat, not investigate the donors themselves. The State government has also played a major role in promoting cadaver donations.”
Among the new norms are that the potential donor can register only with one hospital.
All the relevant information is available in a centralised pool, monitored by the committee that will search for local patients and centres that can do the cadaver transplant.
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Awareness about organ donation has also risen significantly after the momentum created by the decision of Thirukazhukundram, Kanchi District–based doctor couple S. Ashokan and Pushpanjali to donate the organs of their son Hithendran after he died in a road accident on September 20, 2008 ( see related story below ).
“The act of donation helps relatives in the grieving process. It doesn’t take away the pain of their loss; however, it does help them to know that someone else is alive because of their loved one’s donation,” says Dr. Ashokan in an email interview.
“Today our son’s organs are helping a woman in Kerala to live a healthy life. Surprisingly she has mothered a baby boy after the transplantation and it gives us immense satisfaction that our son has helped society in a great way,” he adds.
The A.P. Hithendran Memorial Trust today campaigns to raise awareness not just about organ donation, but also road safety. As the 2013 report notes, out of the 130 deceased donors from Tamil Nadu, 84 were medico-legal cases, mostly involving road traffic accidents.
Government insurance schemes have helped to subsidise the cost of transplant operations. In the case of renal disease, compared to dialysis, which is a clinical purification of the blood to substitute the normal function of the kidney, transplants are considered a more long-lasting solution. Besides, dialysis treatments can cost up to Rs. 18,000 per month, especially if the patient has to travel to a bigger city for treatment.
So successful have transplant surgeries become that, says Dr. Mannivannan, “we are seeing kidney recipients 15-16 years after transplant. If the kidney is from a relative, it will last on average from 10-12 years. From an unrelated donor, maybe 6-8 years.”
Besides renal cases, Kauvery Hospital is planning to start an exclusive facility for liver and cardiac transplant this year, and has stepped up its eye donation campaign.
Out of the 232 transplants done at Kauvery Hospital so far, 23 have been from deceased donors.
“Many people will not accept brain death, because they can see the heart-beat going on and the machines still switched on. Once the relatives are convinced and willing for donation, then we have to assess the patient,” says Dr. T. Rajarajan, nephrologist, Kauvery Hospital, who has done 18-19 transplants since 2013. “Potentially we can remove, heart, lungs, liver, kidneys, pancreas, small intestine and skin for transplant.”
“Once the tests are done, the real dynamic work starts, because we have to maintain the organs until they are ready to be harvested,” says Dr. S. Senthilkumar, senior consultant urologist and andrologist, Kauvery Hospital. “We have to correct the metabolism, and coordinate the work of the different medical teams that will be taking the organs, plus the government agencies involved - usually this takes up to 48 hours,” he adds.
With India being the diabetic capital of the world, kidney transplants dominate the transplant surgery scenario in Tier II cities like Tiruchi.
“Besides diabetes and hypertension, renal disease is also caused by the abuse of over-the-counter painkillers and native medicines which can affect the kidney in the long run,” says Dr. S. Kandasamy, nephrologist at the Kauvery Hospital. “We are seeing about 3-4 new cases (of kidney malfunction) per day in Tiruchi, but these are the tip of the iceberg,” he adds.
Superstitions and taboos, not to mention misinformation spread by films, tend to dissuade patients from seeking medical help earlier, often to their own detriment.
Post-operative care for the transplant patient is also an important part of the recovery, says Dr. Ashokan. “Due to advancement in surgical procedures, these days transplantation is almost 90 per cent successful. But post-transplant care for patients is very important and may sometimes may be costlier than anticipated.”
Asked about his first thought after his operation, Mahesh replies: “I opened my eyes and felt relieved that I was still alive. And then when I saw the doctors, they looked like God to me.”
*Names have been changed on request
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FIRST PERSON
‘We have to live with the grief’
The spontaneous decision of Dr. S. Ashokan and his wife Dr. Pushpanjali to donate the organs of their teenaged son A.P. Hithendran, who had died in a road accident in 2008, is believed to have created a new awareness about not just organ donation, but also the need for greater road safety regulations to prevent brain injuries, say many in the medical community who spoke to MetroPlus for this article.
On September 20, 2008, Hithendran had taken his father’s motorbike from the family home in Thirukazhukkundram, Kanchipuram district, for a ride to visit his friends. Crucially, he was not wearing a helmet.
While returning, Hithendran swerved to avoid an oncoming bus, and collided with a stationary fishcart in the opposite lane at Teachers’ Nagar, between Thirukazhkundram and Chengalpattu. Thrown off the bike, the youngster sustained head injuries and precious time was lost as passers-by failed to identify the boy.
Dr. Ashokan recalled the happenings of the fateful day in an email interview.
“The accident took place very near to our house; my wife was the first to go and see him at the spot. With help of a carrier-auto, she brought him home in a state of shock. We took him first to the Chengalpattu Medical College hospital in an ambulance from the Thirukazhukkundram Primary Health Care Clinic,” he writes.
The journey from Chengalpattu to Chennai for advanced emergency care was harrowing too. “It was a difficult journey with busy traffic and an ambulance that was not fully equipped to manage such a case. Hithenran suffered one episode of deceribrate rigidity (a postural change that occurs in comatose patients) and vomiting and after this he went in to deep unconscious state.”
The doctors at the private hospital in Teynampet that the couple took their son to, gave them no hope for his recovery. “I spontaneously told our relatives who were doctors at the hospital that if the worst happened to my son, they could take his organs for someone who needed it,” writes Dr. Ashokan.
Hithendran’s heart, kidneys, corneas, and liver were removed on September 23, 2008. “Making the decision to donate our son’s organs was not difficult, but letting him go was a tough decision. He was just entering his teenage and must have had lots of aspirations and dreams. Everyday when I pass four times by the accident spot, I think of him with my eyes clouded with tears. When my wife and I are travelling together, we stop conversing for a moment when we reach the spot. The pain and grief is lifelong and we have to live with it.”
