I was in Bangalore Art of Living International Centre, doing services with various departments those days. It was around 2018, one fine evening, when my brother called up to say that “Chechi, my doctor has told me that I can ‘go’ anytime! Please come home if you really care about my happiness!”, and then began sobbing. I had never heard him get so delicate before. I instantly told him “Nothing will happen to you as long as I am alive!” And then put down the phone.
So many of our childhood memories started coming into my mind. The way we played, fought with each other and have been silly with each other. One of the most touching memories with my brother has been in those afternoons when he would be back from primary school, and I would be getting ready for secondary school. He would get my shoes polished, crawl under the dining table and wear me my socks and shoes as I had my lunch so that I don’t get later to school! Tears were rolling out of my eyes. My life would not mean anything if I could not do anything for my younger one’s life.
After Dialysis
My brother and I share the same date of birth 4 years apart! People always wished us together on our birthdays! What would my birthdays mean without him? I faintly remember my mother telling me when I was a child that every human had 2 kidneys and that a person can live even if he or she gave away one! Something was telling me that this knowledge had purpose. All I knew at that time was that the donor should have the same blood group as the done! And we both share the same blood group!
Ajish couldn’t believe what I told him on phone. He said that it was not time to think about a transplant! His problem, doctors said, was genetic and connected with the immune system due to which the kidneys were getting deposited with some substance and making it increasingly non-functional. Externally brother looked fine and had hardly any symptoms. After a bout of prolonged food poisoning, he was advised blood tests and we got to know that his creatinine levels are much higher than normal.
He was on strict Diet as prescribed by his doctor. Even water was to be taken in measured quantities!
Bro had tried various Treatment alternatives before finally surrendering to the idea of transplant. He had put out the news to all his close friends and relatives to look for an organ donor. It was so difficult for him to accept my donation. However, finding a match in such a short span of time seemed next to impossible. Time was ticking and his creatinine levels were blowing out of proportion. He would have to go for dialysis.
Looking at my brother’s weight, Doctor was already sceptical about prolonged Dialysis. I could not think of Ajish going for dialysis at this age. My parents were not convinced or confident about me donating the organ. My father was also getting ready ‘to face whatever’. And he was trying to get my mother ‘prepared’ as well. Transplant seemed like a Utopian dream. I could have lost my mother before anybody else if this prolonged.
As fate and luck both had it, I got in touch with Mamta Agarwal (through the Art of Living foundation), an organ donor who later became an ambassador for organ donation, promoting and educating people about organ donation. I requested her to join us on a con-call. Mamta most willingly and convincingly spoke to my parents telling them about her own experience and that getting an organ from an outsider is illegal. Mamta was very clear that looking for a cadaver donor would take at least 4-5 years!! After hearing her, my father was quite relieved and confident.
I made some quick enquiries through the ZTTC website about how a donor should approach a hospital. They told me that every hospital would have a Transplant coordinator and that he would be the best person to contact. We went straight to the Transplant Coordinator at Apollo Hospitals to let them know that Ajish has 3 donors ready. Myself, my father, and my mother! There were several tests to be done and anytime any of us could get rejected. So, we had to consider backups.
The transplant coordinators and our Nephrologist were fascinated that the entire family had come together to donate!!! Thanks to Mamta Ji’s convincing address. My sister-in-law who was still in Kerala with my brother was also willing, but we chose to keep her out considering the stress that she was already going through. Besides, she was the one to be with my brother after surgery.
Primary tests took about a week to complete. I was obviously the best donor identified so far. Dad’s kidneys had already developed some cysts. Mom was the other option. I firmly put down my proposal that only I would go ahead for further tests. Later, I was happier that Amma didn’t have to go through the long hours of standing, waiting, tests and hospital visits.
Secondary tests took another 5-6 weeks. In the meanwhile, we set right all legal formalities, Affidavits, and police verifications. Our surgery dates were fixed and going to happen as soon as my husband signed on papers. He was expected to travel from Senegal just for surgery and fly back the next week! Then we got the unexpected news from our transplant coordinator. DNA test reports weren’t as good as expected. Surgery would have to be postponed! We were almost devastated. Would we have to go looking for another donor? Nothing was clear.
Our Nephrologist was calm. He said There was 1 Antibody in bro’s blood that would stand against an antigen in my blood. This antibody had to be removed from his blood through a plasma treatment! It would take 4-5 plasma treatments. That would take another 2 weeks.
We realised that things were so unpredictable. There was panic in the air. Finally, we decided to go for plasma treatment after thinking once again about the repercussions of finding another donor.
All papers were set. We were finally called for ethics committee Approval. The directors along with docs tried all ways to scare me out of my decision. They finally understood that I was not scared of death as much as I was of not giving life a chance. Surgery dates were fixed after similar meetings with the other members of family.
We got admitted to hospital the day before surgery. I had called up and informed at least 4-5 of the Art of Living Volunteers in the vicinity to be available to my parents while both of us would be away and unreachable. We also did not have any difficulty finding people to donate blood, thanks to some of our friends and Volunteers, there was abundance.
One of the Art of Living Volunteers had arranged for few of us a WA video meeting with Sri Sri Ravishankar ji, Guruji for his blessings!! I was in the hospital wear when my Guru came online to bless us.
Later in the evening, Our Nephrologist and Surgeon also visited. Surgery will be early in the morning at 7:00am, “Jyoti, you are not going to run away, no? I hope to find you here tomorrow morning!” our Surgeon joked. I couldn’t help laughing. The Clinical Advocate had told me “You can withdraw from your decision anytime!!, But please don’t! But you can, and you must know that!”
That night after dinner, we underwent an NBM fast (Nil by mouth) till the surgery was over. Bro never liked the idea of having to adopt from me. And I was severely afraid of his rejection. Doctors had warned us that if his body rejects my organ, then, they would not be able to replace it in my body. The organ would have to be simply thrown out and brother would have to be put back on dialysis! Bro needed to feel comfortable about adopting my organ. I spent the rest of the night in his room before sleeping. I told him “Look, you are going to accommodate one of my organs, that too free of cost. Please welcome it and keep it with good care! I hope you won’t reject it! Please ask your Antibodies to calm down. I am your friend, not a Corona virus”. We shared a light laugh and then retired to sleep.
My son was allowed to meet me before surgery. Nobody else was allowed. Hospitals are still running very strict about social distancing. All that I remember in the OT was that the oxygen mask was being worn over my mouth. It felt like not more than a minute when I opened my eyes and then I was already in the ICU and the doctor very happily gave me the news of surgery being successful and that even my brother was fine! My consciousness had gone beyond time for almost 7 hours! I was more than mesmerised by the care with which the brothers in ICU handled us. As delicately as a flower.
My son with me before surgery
With my face and body, I was unable to express my gratitude, but I could feel my insides acknowledging. By that time my brother was brought into ICU. I tried raising my hands and voice to say hi to my brother but then realised that I’d have to wait. I couldn’t move or talk loudly.
ICUs, I found were scarier than the pain itself with the sounds of machinery all around! I was enjoined by 2 little kids who had undergone liver transplant on my either side. My pain felt like nothing at all! My heart went out to the little ones! I wanted to attend to those kids. They were in the ICU for more than 20 days. One of the kids left us forever.
It was like night duty in ICU. Lights were on 24X7. And there were as many machines running outside as there were over us and inside us!!! There were several cords running around my body. The nurses and brothers gently cleared the cords off my movement zones to help me out of bed on the next day. I could hardly walk 10 steps with both hands resting on 2 people.
I was shifted to room the next day and my brother after 2 more days. By now, the tubes and cords were reduced in number! The day when I was discharged, my brother came out with his drainage bags and saline in 1 hand and blood in the other as if he was carrying my luggage! I was totally moved by his gesture! Even the nurses and attendees could not stop him!
I could feel the pain with every inch of movement. Mine was a laparoscopic-Robotic surgery. So, my externals healed quite quickly. Scars were small, pain was less, bleeding was comparatively less. And no stitches to be removed!
My brother’s surgery was an open surgery due to various clinical reasons. Besides, he was on Immune suppressants to reverse the effects of his own body fighting the external organ. This meant that we had to take care of him like a new-born, rather, premature baby! Brother was discharged a week after me. We eventually started taking walks and taking care of our daily routines without human support. Our surgeon had told us that we would be able to run a Marathon in 6 months!
I thank all of those who have taken care of us after surgery. My family, my parents. My husband had made all arrangements before going back to his workplace. Sanitisers, new pillows, new bedsheets, a 24-hour maid, and a well sanitised home! We decided that we will not have guests for the next few months. Nobody inside the house would leave home and nobody outside would enter.
Gratitude goes Most of all to our kids who willingly stood by us. It was not easy for us to see them off to another house. Abhishek, my son was completely on his own during the most crucial year of his life. His books were all emptied from his study room and shifted to another house just few weeks before his 10th class board exams. All I could do was to pray and bless him for the strength to endure. My brother’s 6-year-old son, Yatharth, also lived with his grandparents in order let his father be treated.
It is a blessing and a great strength to see a dear one living a better life because God helped you help.
After the transplant, our Nephrologist had told my family that the donor can live a ‘normal’ life for the rest of his/her life. My family took this so seriously that they started considering themselves as abnormal for having 2 Kidneys! For a super active person like me, ‘Normal’ would mean, a wait of minimum 6 months to heal and regain complete strength. Doctor had told me that the Kidney would grow for a period of 3 months. My voice goes out loud to all people out there to support donors and stand by them in their cause and understand that while they can live a normal life eventually, they can also encounter any disease or discomfort that a normal human can!! So, If the donor is strong and healthy, it is because of the strength of their minds.
A donor does not need medication like a recipient except for few weeks. A donor does not need isolation except for the initial few weeks after surgery. My creatinine levels have increased slightly above normal after surgery, and I have not regained sensitivity in some parts of my body yet. I get into a slumber occasionally and must put up with a lot of fatigue. These are all very very normal and will take few months to recover. I am grateful to God for the time I could make available at my disposal. A donor does it without any expectation or reward and that takes a lot of courage, love, integrity, commitment, and faith!
I’m grateful to my brother for not losing hope, for not giving in, and for his weird sense of humour even at the peak of his illnesses. Even at Creatinine 14, he was on his 2 feet marching much ahead of us (a normal person would’ve dropped down at Creatinine 6 or 7) and I owe it entirely to his well-disciplined lifestyle and carefree attitude. I am grateful to him most of all for giving me a chance!
I am Truly grateful to Mamta Agarwal who encouraged me to register with ORGAN India and be a proud donor. I’m also extremely grateful to her for having invited me to present my story. This is truly encouraging/enterprising. I would urge every healthy person on planet to be an active organ donor. Recipients should also remember well that they have a body with other healthy organs. It becomes our prime duty to maintain our health to its best to show our gratitude to the Almighty who gifted us with this beautiful body and to be of best use to ourselves, our world and to others.
Last but not the least, I will love to mention here that the practices of Art of Living Foundation and the love of the AOL Family and its support and good will has been first and foremost in giving me the strength and courage to come forward and stay committed for this bold act till the end.
More and more people must become aware of what organ donation can do to save and bring light to lives.
