It is estimated that about 1,000 people die of brain death annually in the Kathmandu Valley alone. However, even after 8 years since the regulations were enacted, only 18 people have received a kidney transplant from brain dead people, 13 of whom received a kidney and 5 of whom received a liver.
Ramila Dahal is a kidney patient. She has been undergoing dialysis for both kidneys for the past 17 years. Ramila, 44, visits Bir Hospital three times a week for dialysis.
When she was 26, her kidneys were damaged. She said, "I had no disease. I went to the hospital in Janakpur after feeling hot and having a headache." She said, "I came to Kathmandu from there. Later, the doctor said that both kidneys were damaged."
Family members had also tried to donate a kidney to Ramila, but there was no 'match'. Now she is hoping to get a kidney from a brain-dead person.
In Asoj 2074, after the Human Organ Transplantation (Regulation and Prohibition) Act, 2055 was implemented, a legal way was opened to transplant organs from brain-dead patients. Ramila had also had the opportunity to undergo organ transplantation twice. But for various reasons, she could not undergo the transplant. She says, ‘I got a call from the hospital twice. Once everything was confirmed. In the end, I didn’t get a test and was thrown out,’ she said, ‘The next time, I couldn’t go because I fell and had problems with my legs.’
She is currently living with her sister-in-law in Lokanthali. Ramila now wants everything to go well and the kidney transplant to be done smoothly. She says, ‘I have prayed to God for this,’ she said, ‘Now I also want my health to be good and I can transplant an organ from a brain-dead person.’
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Hundreds of patients like Ramila are waiting in the dream of saving lives with the organs of brain-dead people. Some have even received life-saving organs from brain-dead people. Some have already passed away while hoping to get a kidney or liver. According to Dr. Pukar Chandra Shrestha, former executive director and surgeon of the transplant center, 1,059 people had registered for kidney transplants by last July. 59 people have registered for liver transplants.
Sankalp Khadka, 38, is one of those who will get a new lease of life after receiving a liver from a brain-dead person. It was 5 years ago. Sankalp was taken to the hospital by his family after vomiting blood. The doctor said that it would be difficult for him to live beyond 5 months due to liver damage. 'What does it feel like to hear a doctor suddenly say that he has no chance of living beyond 5 months? It is very difficult to remember even now,' he said.
Sankalp, who works in the IT sector, had gone to the hospital for a health check-up after contracting dengue. After the platelet count was low, a blood test showed a problem. He was also diagnosed with liver cirrhosis at that time. Sankalp's wife Vinaya Gyawali is a teacher by profession. She says that after consulting doctors, consulting and searching, she was able to save her husband. She says, 'On the advice of many doctors, one doctor said that the ruptured vein could be tied. After that treatment, the vomiting of blood stopped. '
Even if the vomiting stopped, the doctor had suggested that a liver transplant should be done anyway. Even though she was ready to donate from her own family members, she could not find anyone. The doctor said that if a donor who would donate the organ was found after brain death, the transplant would be possible. Now, Vinaya has hope that her husband can be saved. She says, 'We did not just register at the Bhaktapur Transplant Center. We were constantly visiting the hospital to see if there was any case of brain death.'
On July 31, a call came from Sumeru Hospital, 'The organ of a person with brain death has arrived.' Upon hearing that, his family rushed to the transplant center. Everything about Sankalp was a 'match' with the organ of a person with 'brain death'. The test scores also came out high. After all the tests were received, Sankalp's liver transplant was performed on the same day. 'Even after becoming ill, I thought positively, but sometimes things would play out.' I always felt that I had to live for myself, for my little daughter, and for my family,' says Sankalp. 'Because of the faith I have in myself, I have now got a second life.'
Vinaya says that if organ donation is facilitated, kidney and liver patients will get another life. She says, 'How many patients are there who are hoping to get an organ just like Sankalp.' It would be great if there was facilitation.'
Even now, many patients are waiting for organ donation in Nepal. But health experts say that organ transplantation after brain death is in a low state. Patients waiting for organ transplantation also mention that it is difficult to easily get organs from brain-dead people. They also say that organ transplantation after brain death is not practical for everyone.
About 80 percent of organ transplants in Western countries are from brain-dead people. But in Nepal, organ donations are mostly from family members. According to the Shahid Dharmabhakta National Transplant Center, 4 to 6 people die in road accidents every day in Nepal. It is estimated that about 1,000 people die of brain death annually in the Kathmandu Valley alone. But even after 8 years since the regulations were enacted, only 18 people have been transplanted from brain-dead people, including 13 kidneys and 5 livers.
Liver and gastro surgeon, Prof. Dr. Ramesh Singh Bhandari, says that organ transplantation after brain death is less effective. He says, ‘The number of organs donated after brain death. Comparatively speaking, it is less. This service should also be available in large government hospitals like Teaching and Bir,’ he said, ‘The responsibility of all the related processes has been given to the transplant center. That is why other large government, private hospitals and health institutions seem to be inactive.’
He says that the government should make organ transplantation after brain death effective. He says, ‘The responsibility of organ distribution cannot be given to any one hospital alone.’ That is especially true for those who transplant themselves,’ he said, ‘It is necessary to move forward independently, without any influence from any hospital, patient or doctor.’ Only then can it run fairly and effectively. It is not often the case in other countries that any one hospital takes responsibility.’
Dr. Bhandari says that an independent body should be formed under the Ministry of Health to make organ transplantation after brain death effective. He says, ‘If there is an independent body under the Ministry of Health, it should be responsible for maintaining all its data and running the system,’ he adds, ‘A list of patients needing organs for kidney transplantation should be requested from hospitals across the country and a central registry should be created.’
He says that no matter which hospital in Nepal is being treated, the patient should be treated at the same hospital and the form should be filled out.
He says, ‘There is a patient in any hospital. But does that patient have to go to the transplant center to fill out the form? Shouldn’t he be able to work in the hospital where he is being treated? This means that the transplant center is for the patients and their only patients,' he said, 'the government has to say that only the same hospital will perform transplants, otherwise it cannot be done.' Dr. Bhandari says that transplants have not been easy because many people are not aware of organ transplantation.
Nephrologist Dr. Rishi Kumar Kafle says that the transplant program has not progressed as expected because the government has not made an effective law on organ donation after brain death. 'The organs obtained after brain death are owned by the government.' The big issue of who will give ownership to what is owned, who will receive it, has been given to a hospital,' he said, 'The transplant center has done a good job, it is in its place.' The government forgot about the big government hospitals that performed organ transplants before that.'
Like Dr. Bhandari, he also says that he has not been able to spread public awareness about brain death. ‘The general public does not even understand what brain death is. Until they understand what brain death is, organs will not be obtained,’ he said, ‘We have a list of who will be given the organs if they are obtained.’ But in the 8 years since the act was enacted, 13 people have received kidney transplants and 5 people have received liver transplants. This is low.
He says that if the government fixes the fee for any organ transplant, it will be suitable for all hospitals. Dr. Kafle says that private hospitals have also backed down because they have not encouraged organ transplants.
Dr. Pukar Chandra Shrestha, former executive director of the Shahid Dharmabhakta National Transplant Center, says that the work was done as per the standards. He says, "Since there is no activity in the country, there is no focal center, the government of Nepal has decided to keep the transplant center in Bhaktapur as the coordinating unit for the time being in the act," he said, "If there is a coordinating unit in a government organization and it has done good work, then it should not be done badly.''
8 people can be saved life
According to the Shahid Dharmabhakta National Transplant Center, up to 8 people can be given a new life by donating organs that are wasted after brain death. According to the center, 2 kidneys, 1 heart, 1 small intestine, 2 lungs, 1 liver and 1 pancreas can be transplanted from a brain-dead person.
