Living through another
Our body is precious and can be the source of a new life for someone else, provided we pledge to donate our organs before leaving this world, says Jamuna Rangachari
Many of us wonder how we can help others. If we realise that the greatest gift we have been given is our body and if we can help others revive theirs when we move to the next world in our spiritual journey, we certainly can give them the greatest gift of all.
During the time my husband was in the Indian Navy, I remember a young army soldier lying in bed, surrounded by his parents who were full of joy because their son had got a liver transplant through the Organ Donation Scheme of the Defence. Even today, this scheme is well implemented and managed by the army (R&R Hospital) extremely efficiently, as this requires discipline, which the Indian Army possesses in good measure.
This system is still not well known in India; many talk about it vaguely. A huge gap exists between patients in need of organ transplants and potential donors. It’s not that there cannot be enough organs to transplant. Nearly every person who dies naturally or has a brain death is a potential donor. Even so, innumerable patients cannot find a donor. Acute shortage of organs is a universal problem, more so in developing Asian countries like India. According to the Union Health Ministry statistics for 2011, only 4000 kidney transplants were carried out, as against a requirement of 1,50,000. Similarly, 500 livers were transplanted, leaving some 20,000 in waiting.
The deceased organ donation rate in India is estimated to be a minuscule 0.8 per million people (although India has amongst the world’s highest number of deaths from road accidents). Spain had the highest number of donors for many years with a donation rate of 47 donors per million people, but more recently, a small country like Croatia has taken the lead with a donation rate of 33 donors per million people. Australia is at 21, while the United States is at 32.
To make transplants possible in India and thus alleviate the suffering of many patients, the government of India, in 1994, passed an act called the Transplantation of Human Organs Act. The new act broadens the concept of organ donation to include other organs besides eyes. The universal donor card is the first step in this regard; it expresses one’s desire to donate any or all organs. Let us understand this.
What is organ donation?
Organ donation is the pledge we take during our lifetime that after our death, healthy organs from our body will be given to patients who need those organs and are under severe discomfort or battling for life due to organ failure.
Wouldn’t it make us happy to know that we can give a new lease of life to other people after our lifetime? A single yes can save up to nine lives. People who are waiting to receive a transplant undergo very exhausting, painful, and expensive procedures to just live. For most of them, the quality of life is pathetic, with death looming large, and a long, lonely wait to get a transplant. Many die waiting for organs. This noble act of donation gives us a chance to continue living through the lives of these people previously unknown to us.
In 2005, Tribhawan and Jasmine from Florida did not know much about organ donation. But when their 21-year-old son, Anand, suffered fatal head injuries in a car accident, the attending nurse gently encouraged them to consider a donation. They agreed. Their son’s heart, liver, kidneys, and pancreas helped to save the lives of six people.
Now Anand’s family takes every opportunity to tell others about organ donation. Tribhawan is a volunteer for TransLife in Florida, the National Donor Family Council, and the National Kidney Foundation. He frequently shares his family’s story. “Anand was this terrific guy, this loving guy,” he recalls. “What a waste it would have been if we hadn’t donated his organs. We are very happy that we made the best decision.” Anand’s family members have contacted four of the recipients of their son’s organs and are comforted to know that their son’s donation has helped them. “This is a blessing that we were able to make a difference in their lives,” says Tribhawan. “Some of them have children, while others have grandchildren.”
Tribhawan urges others to register to become organ donors. “No one knows when you may die, but when you go, you can leave a legacy. Should anything happen to you, you will be a blessing to somebody’s family. As long as the sun shines, you will be remembered.”
Tribhawan recently found the nurse who attended to his son. He told her how her words had changed him and had benefited so many others. “We can make a difference in people’s lives. It’s all about sharing and caring.”
Another experience is that of Haley from Indiana. Haley had always been healthy and was even training for a half-marathon. She was 24 years old and never had any serious illnesses. So, why was her hair falling out? Doctors were baffled. Weight was melting off Haley’s trim frame, and her nails were coming off. Abdominal pain and swelling plagued her constantly, and she struggled to keep food down. But the doctors couldn’t pinpoint a cause.
The answer came in September 2014, when Haley’s pain became unbearable. A dash to the hospital and emergency surgery revealed that a genetic condition caused a blood clot to form in her liver. The clot cut off circulation to her intestine, almost destroying her liver. Her body’s immune reaction, in turn, damaged several other organs.
Haley’s doctor recommended a five-organ transplant surgery, but she was worried about the quality of life she would have after the procedure. She decided then: “I won’t have a transplant. I will learn to adapt.” She stuck to an ultra-limited diet and contacted doctors all over the country to find an alternative.
Haley went from working full-time to living off disability benefits. She couldn’t drive or gain weight. The constant pain was so intense that she could barely walk or stand up straight. Over the months, toxins caused by organ damage lodged in her brain; she couldn’t focus or think clearly. This pain was more than physical —it was hurting her mind.
By June 2015, Haley had exhausted her options. Her doctor told her the only fix was a multi-organ transplant, and she needed it now. With her blood type, body size, and condition, he expected a short wait: hopefully thirty days or less. He wasn’t sure she’d last much longer. After two false alarms, she got the call. She had a match.
The transplant, which included a new stomach, pancreas, liver, and small and large bowels, was a success. But the recovery was long. Haley was in and out of the hospital for a year, and the pain was still a constant companion.
With time, she reached a moment she’ll never forget: one that was pain-free. She remembers visiting a lake with her family and thinking, I can’t believe I’m here. I don’t have a line in me, I’m three hours from the hospital, and I don’t feel like I’m going to die. It’s just incredible!
Five years post her transplant, Haley is feeling like a normal, healthy person and is enjoying her new freedom. She’s gotten to know her donor’s daughter and wants to “make sure she knows her mom saved my life.” Haley also visits patients awaiting multi-organ transplants to hear their stories, share hers, and offer encouragement.
She doesn’t know what the future holds, but the present is full of possibilities. And with each pain-free moment, she thanks her donor for the gift of life.
Donation from a living person to another.
One of my friends donated a kidney to her niece who was going through hell due to kidney failure. Even today, her sister and niece cannot thank her enough for restoring their life to normal.
Working for NGOs for the last thirty years, Ms Pallavi Kumar from Gurgaon has fought for HIV orphans, comforted the specially abled, and enthused the underprivileged. She currently heads the Delhi-NCR office of MOHAN Foundation, an NGO committed to promoting deceased organ donation in the country. She shares her experience in this area:
“I had only recently joined MOHAN foundation and was in Chennai for a week to attend a training course. MOHAN Foundation is a unique organisation that has been doing pioneering work in the field of Deceased (brain death) Organ Donation in Tamil Nadu and Andhra Pradesh, and I had just been given charge to start their north chapter. I was in Chennai to learn about the intricacies of my work as I took it forward. For those of you who are completely unfamiliar with this concept, let me quickly try to explain it in simple words. Brain death results from a severe, irreversible injury to the brain, or haemorrhage, which causes all the brain activity to stop. All areas of the brain are damaged and no longer function due to which a person cannot sustain their own life, but vital body functions may be maintained by an artificial support system. This maintains circulation to vital organs long enough to facilitate organ donation. The Transplant of Human Organ Act 1994 recognises this as a form of death and allows retrieval of vital organs if the immediate family gives consent.
“That afternoon, as I was trying to comprehend a complicated lecture on paediatric brain death, I was called by one of the MOHAN Foundation staff. I was told that at the Chennai General Hospital (the biggest government hospital in Chennai), the doctors had just declared a young 17-year-old boy from Bihar brain dead. The father had arrived a while ago, and since the family only spoke Hindi, the counsellor was having a tough time communicating with them. I was asked if I could assist as I knew Hindi. I obviously agreed, though with a lot of trepidation and fear as this was going to be my very first time counselling a family so recently hit by extreme tragedy and trauma.
“What transpired at the hospital is something that would remain etched in my mind for as long as I live. I spoke to the father—a frail, old, uneducated, poor man, who had just lost a son whom he had had after three daughters. And even before he had proper time to grieve, here was a bunch of strangers, in an alien city, asking for his son’s organs to save the lives of people whom he had never met and never would meet.
“Obviously, he refused! He said he would like the body back and to return home once his son was cremated. Keeping with the norms of organ donation, I told him that we respected his decision but asked if he could just take 10 more minutes to think about it and then give a final answer. We reiterated that his loss was irreversible and that no one could feel his pain for him, but that he should once again consider giving this gift of life that could change seven to eight lives.
“Fifteen minutes later, the father displayed such strength of character and wisdom, that I was moved to tears. He said that he had thought about it and was willing to donate his child’s organs provided they went to other poor people like him. Where did he find in himself the strength to take this courageous decision? Where did he find the power to trust a bunch of complete strangers? Where did he find in himself the large-heartedness to give so greatly when destiny had been so cruel to snatch away from him something as precious as his child?”
Pallavi continues her lesson through this experience, saying, “It reaffirms my faith in everything good, selfless, altruistic, and humane. It reaffirms my faith in my work. It reaffirms my faith in this world!”
Making it possible for people to see
One area most of us can take part in is donating eyes.
There are 3.8 million people in India suffering from corneal blindness, of whom 60 per cent are children. Corneal blindness has several causes, but malnutrition and poor hygiene are chief among them, thus disproportionately affecting the poor. Working at an eye bank for years, Percy Ghaswala closely witnessed the financial barriers between the abandoned poor and life-changing eye restorative surgeries.
was working in Mumbai as the chief of Asia’s largest eye bank. He recounts, “One evening, a cornea was available. So, as per the usual procedure, I made a call to a 72-year-old lady from the waiting list. The phone kept on ringing and no one picked up. I called three times and at the end of the third call, a frail voice answered “What is it?” I said, “Maaji, an eye is available for you. You can go to the doctor tomorrow and get the surgery done.” After a long pause, she said, “I have no money left. This wretched surgeon is asking for another Rs 20,000.” And she started crying. I tried to ask her if someone can help her because getting a chance at restoring vision is rare. She told me that she has no one and she has sold her jewellery and furniture, so she has nothing. Then she said, “I am old and I will die as a blind woman. Give it to someone else.”
He could not help her get back her vision. However, this experience greatly impacted him. This and many other instances made him realise that there is an abandoned section of the poor who have no money or support. This resulted in many sleepless nights for him. After a lot of struggle, Ghaswala Vision Foundation was started the next year. He is extremely happy that he is able to restore the vision of people who cannot afford the expense of surgery.
Which organs can be donated?
Different organs, such as the heart, liver, and kidneys, and tissues, such as corneas and bone marrow, can now be successfully transplanted into patients who are expected to survive for years or even decades. The organs that can be transplanted depend on the type of organ transplant, i.e., whether the donor is alive or deceased.
Living donors, however, can donate a limited number of organs and biological tissue. This list usually consists of one kidney (because one kidney is capable of performing bodily functions), a part of the pancreas (because half of the pancreas is adequate to sustain pancreatic functions) and a part of the liver (because the few segments that can be donated will regenerate after some time).
On the other hand, transplants from deceased donors (who are brain dead) can be of the heart, lungs, kidneys, liver, pancreas, as well as tissues like the cornea and bone marrow.
Eye donation means donating the eyes of a person after death for transplantation with family consent. When donating the eyes of the deceased, remember to
• Dial the nearest eye bank (or 1919) within six hours of death
• Switch off the fans and keep the air conditioner or cooler on
• Raise the head of the deceased person with a pillow
• Place wet cotton swabs on closed eyes
Eye donation can take place in the donor’s home itself. The total procedure takes 15–20 minutes. There is no disfigurement of the face of the donor.
What is brain death?
In case of natural death, only the eyes and a few other tissues can be donated. All other vital organs can be donated only in the case of ‘brain death.’
A brain death results from a severe, irreversible injury to the brain, or haemorrhage, which causes all the brain activity to stop. All areas of the brain are damaged and no longer function due to which a person cannot sustain their own life, but vital body functions may be maintained by an artificial support system. This maintains circulation to vital organs long enough to facilitate organ donation.
Common causes of brain death are
• Road traffic accidents (RTA)
• Brain haemorrhage
• Brain tumour
About 60 per cent of deaths in RTA are brain deaths. The Transplantation of Human Organs Act, 1994, recognises this as a form of death and allows retrieval of vital organs if the immediate family gives consent. Organs cannot be bought or sold anywhere in India or the rest of the world.
Who can be an organ donor?
People of all ages and backgrounds can be organ donors. If you are under 18, your parent or guardian must give you permission to become a donor. If you are 18 or older, you can show you want to be a donor by signing a donor card. You should also let your family know your wishes.
What does the law say about organ donation?
In July 1994, the government of India passed legislation resulting in the Transplantation of Human Organs Act, 1994. The purpose of this act was essentially threefold:
1. To stop commercial dealing in organs, especially kidneys.
2. Accepting brain death as a definition of death.
3. Define who could donate organs whether in live related, live unrelated, or cadaver donation.
Let us briefly examine what has been achieved in the last 15 years in India.
• The 1500 odd cadaver organ transplants have shown that we in India are capable of organising the chain of events that lead to cadaver transplants.
• Brain death certification is now widely accepted by clinicians, and the protocol to certify it has been uniformly accepted as laid down by the government.
• Some hospitals are now regularly doing such transplants, and in this respect, Tamil Nadu, Andhra Pradesh, Gujarat, and Maharashtra have made some commendable efforts.
• It is now possible to not only do kidney transplants but complex transplants of the liver, heart, lungs, and pancreas as well by skilled doctors.
How can you be an organ donor?
You can be an organ donor by signing a donor card from any hospital or an NGO. A donor card is not a legal document; it is only an expression of your willingness. If a person has a donor card, it means that they are willing to donate organs at the time of death. Remember that in our country, even if you have signed the donor card, it is important that your family consents to your wish, as their decision will be considered final.
To help the cause of organ donation, an NGO called MOHAN (Multi Organ Harvesting Aid Network) Foundation was formed in 1997. The focus of the foundation is aimed at working as a support group for patients, physicians, and the public. It distributes organ donor cards and also facilitates the process of donation between various hospitals to ensure that the organs, when available, are not wasted.
Choose life with MOHAN Foundation. Organ donation is all about giving life— life that only you can choose to give to help the thousands of patients waiting for an organ or tissue transplant.
What can you do?
• Pledge your organs to be donated after your death.
• Carry a donor card with you at all times.
• Discuss your decision with your family members so that it will be easier for them to carry out your wishes.
You can access the following link to download MOHAN Foundation’s organ donor card http://www.mohanfoundation.org/download_donorcard.asp and your pledge with us will be handed over to NOTTO (National Organ and Tissue Transplant Organisation), which is a national registry.
Feel free to call the MOHAN Foundation 24 X 7 toll-free helpline—1800 103 1700— if you have any queries about organ donation and transplantation.
There are many areas in which one has serious limitations, but in the area of making choices, we have complete freedom. We know that we will die and move on to the next world. If this physical body of ours can help others in some way, it can be our wonderful parting gift to humanity. Surely, our Creator would be happy to observe that the organs were not thrown away but recycled.
Giving with humility: Teaching Story
Though this is a story of giving with humility, I found it very relevant to organ donation as giving our organs is giving the gift of life to others.
Tulsidas came to know about a unique behaviour of Rahim. While giving alms to the poor, Rahim gave with extreme humility. While giving, he kept his gaze downwards towards the earth. He never looked at the person he was giving alms to.
Tulsidas promptly wrote the following couplet and sent it to Rahim.
“O great person, where have you learnt this amazing way of giving?
As your hands rise (to give), your eyes look down.”
Completing the couplet which Tulsidas wrote, Rahim replied with extreme humility. His reply shows what an evolved soul he was.
“The Giver is someone else (God Almighty), giving day and night.
The world has a misconception that I am the giver. So, I lower my eyes in embarrassment.”
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