It was 8 in the morning on August 16, 2018. All of us, that is me, my mother, younger brother, and my dad were laughing about something when the doctor entered and said that it was time to take my mother into the operation theatre.
My fit and fine mother Anu, (a.k.a. Anita), 47 years old, full of energy, life and laughter, quickly got up, hugged Arjun (my younger brother), Amar (my father) and just held onto me, before smilingly waving bye as she was wheeled out of the room (though she had wanted to walk, full of energy, remember?). In just 20 mins I, her 28-year old son, would join her in the adjoining Operation Theatre, where her left kidney would be transplanted in me, giving me another life.
Flashback to six years earlier, in January 2012. One of our doctor friends was home, and on a lark we all got our blood pressure checked. I was 22 years old, 6’4” tall, fighting fit with my days filled with physical activities (running, swimming, biking). My blood pressure that day was 180/110. Our friend laughingly said that there was something wrong with the machine and took my BP again. Same result. The month that followed was a whirlwind of blood tests, scans, visits to different specialists and hospitals – with one result in the end. I had high blood pressure due to Chronic Kidney Disease. Which was a result of a fluke case of ‘glomerulonephritis’ brought on by some unknown infection.
The next 4-5 years I tried to live a normal life, working in Assam as an Assistant Manager in Goodricke Tea Estates, with regular prescribed medications, check-ups and a life filled with sports like tennis, and golf, and motorcycle rides around winding roads with tea gardens on either side.
But nature and destiny take its own way and the disease progressed faster than expected due to Assam’s water conditions. Things came to a head in May 2017, when I collapsed at midnight due to high BP and was rushed to the hospital. Within the next month I had to leave the job I loved and relocate to Jaipur.
The circus of medical treatments started.
The next year was the most challenging year of my life. The entire year alternated between visits to the hospital, blood tests, scans and one specialist after another across India. Arjun and my mother were constantly by my side during each test. I had to leave all physical activity (no sports, no rides, no lifting weights) and everything that I liked to eat and drink (milk, curd/chaach, pulses, non veg – you name it) as my creatinine and blood pressure kept on rising regardless of how diligent I was with, yoga, food, meditation and precautions. Every day was a struggle. I was constantly exhausted and would sleep for hours. I was depressed and unable to understand what to do.
At times, I felt suicidal.
With all this, I was also working on realizing my dream of opening a café, so the entire medical ‘hullabaloo’ alternated with negotiations with the Franchisor, construction, décor, staff interviews and finances. On my café’s opening day, amid accepting the bouquets and congratulations, 22nd July 2018, I realized my feet had swollen up to thrice their size. I had suffered renal failure.
We went in for tests and realized that my creatinine had jumped from 4.2 to 11 – indicating kidney failure. I had only two options: dialysis for life or a kidney transplant.
My parents are involved, in the cause of organ donation in Rajasthan and both have been trained as Transplant Coordinators by MFJCF, the NGO they are associated with, the Jaipur chapter of MOHAN Foundation. So unlike many patients and their families who feel lost when they face this devastating diagnosis, we were well aware of the choices facing us. My mother it seemed, had been doing her homework, and had already, quietly and firmly, made up her mind to give her kidney to me.
The very next day, my mother insisted we go get our blood test to assess the match for donation. She went enthusiastically, I went reluctantly.
I was dragging my feet. Did I really need to put my mother through all that? Did I have to take a part of her body? I felt depressed and pressurized, I did not want to put her through the pain of a major surgery and allow her to make this sacrifice for me. I insisted on starting dialysis and taking a ‘wait and watch’ approach for future and a transplant. But my mother would have none of it, she had read and discussed the benefits of a pre-emptive transplant (a pre-emptive kidney transplant is when you receive a kidney transplant before your kidney function completely deteriorates, and you start dialysis) and wanted me to take this path.
Ultimately, she was the one who counselled me, and our mutual bond of meditation and faith guided me over this hurdle to accept her donation. One day she said, with tears pouring down her face:
“If your mind and heart won’t accept my kidney then your body will definitely reject it. What will be the point? Ashish, you must open your heart, mind, body, and soul to accept this kidney. This is our bond and our learning for this lifetime. Why shy away from it? Acceptance is the key to life – we both know it. Send a positive message to the universe please.”
Something shifted inside me. My father and brother supported us unilaterally. From that day the four of us became one cohesive positive loving unit. What helped in this entire procedure was positivity and faith. I would not have done it without my family, my Nana-Nani, Dad, Ma and Arjun and my friends, Karan and Pulkit.
My mother drove the entire process: choosing the best of doctors and hospitals, under the guidance of Dr. Sunil Shroff, Founder, MOHAN foundation. We opted for Max Super Specialty hospital at Saket, New Delhi under Dr. Anant Kumar rather than having the surgery at Jaipur, as my parents wanted robotic surgery for me to ensure minimum pain and scarring and quicker recovery. And the battery of tests began for mom and me. My body should be able to accept the kidney, and of course, the donor’s body must be able to survive the surgery and subsequent journey with a missing organ. We found out that my Mom had kidney stones. The usual attitude against kidney stones is “Never mind, you have two”. But she would have one. Another round of tests to ensure that she could get through her life. With my BP high and creatinine creeping higher, each day was a torture for us. I had lost around 20 kgs, my skin had turned darker and I used to itch all over- all symptoms of kidney failure.
Finally, we were given the date of August 16, 2018 for the operation. The hospitals’ support staff was incredible. Prema, secretary to Dr. Anant and our transplant coordinator, Rangeel, who said that he had never seen a family like ours who was actually keen for the transplant! And we were, for my family it was the step towards reclaiming “their Ashish” who had been lost this past year.
Professionally, I could not go back to my studies owing to many responsibilities. Doctors at ILBS hospital in Delhi gave an offer to join the team and help them in coordinating these transplants along with creating awareness around living or deceased organ donation in families. After going through all the pain and anxieties, I thought this could be the best possible way that I can help others to fight similar battles. I jumped at the chance to be a part of the transplant team at ILBS hospital and started my journey as a transplant coordinator in the liver transplant unit.
A mixed bag of feelings tore through me. I had no idea what the future will bring. I was still worried about my Mom and was not sure if I would even live, or whether my body would accept the new kidney. I may be making my mother go through all this pain for nothing. I felt helpless and wanted to stop the whole process immediately. Again, it was my family’s support which brought me back from the brink.
We were both admitted to the hospital on August 15 and were sharing a room. I had my first and only dialysis (hopefully) on that night as prep for the surgery. The surgery started at 8 am and mother came out of the OT at 2:30 pm and I came out at 4 pm. I gained consciousness and was told that my surgery had been done successfully and both I and Mom were okay. Next time, it was searing pain in my abdomen which woke me up and I was too scared to look down and see. In fact, it took me four days before I gathered the courage to check the state of my surgery scars on my abdomen. Since, I had robotic surgery I have a small scar right at my belly button from where the kidney was slipped in.
The next day, around 11 am when I was still groggy from anesthesia, I saw my Ma, supported by two attendants walk towards my bed where I lay. The sight filled me with joy and love for her as she smiled and asked how I was. In that moment we both put aside our physical pain and reinforced our commitment to faith and positivity.
The challenges to recovery seemed innumerable. I had a strong reaction to pain killers and lived in physical pain. I learnt to walk again with baby steps and a strong determination that I would overcome this. We took a financial hit as insurance did not cover our surgeries. I had to take a new insurance after I came back from Assam (and there is a stipulated 2-year period for kidney disease). The 8 days alone in the ICU with brief twice a day visits from my Dad held me together. He would come unfailingly, motivate me. The daily tests were a big boost as my creatinine dropped daily as did my BP.
Once discharged we spent one month in isolation as the immune system is extremely weak at that time for both patients. Soon, the month was over, and it was time to head home. We were grateful to God that both me and Mom were almost perfectly fine.
We left Jaipur on August 14, 2018 and returned on September 13, 2018. I am probably the only transplant patient who himself drove 250 kilometers for his surgery and then drove the same distance back after one month!
In the next few months, we all learnt to live a new lifestyle with a ‘Kidney Recipient’. There were a hundred daily precautions to be taken to prevent infections. Additionally, the medication led to stress, confusion, irritation, and feelings of depression. Meditation and exercise became my saviors. The challenges are manifold. I am fortunate that I have a family which understands and does not add to my stress. My parents are constantly asked by ‘concerned’ relatives and friends about my marriage and how will I live etc. They brush off these shallow enquires and support me at all times.
The days in hospital, I had made a commitment to myself that I would be super diligent in following a proper medication and health schedule. Accordingly, from day one, I followed up for all hospital check-ups, medication, and diet. I am still just as careful with my medicine and other precautions as I was on day one. I am keenly aware that this is a second gift of life and treat it as the precious gem it is. Transplant patients must be very responsible considering the regime and medication schedule and I adhere to it strictly.
Now, I have taken the challenge to devote my life to spreading the message that there is ‘Life after Transplant’. As a Kidney Warrior I live a fit life doing physical activity which includes running, cycling, and training in the gym, for at least 20 hours a week. I guide and counsel CKD patients and other recipients who are still struggling to make meaning of what has happened. If I can help even a single person to cope better, it will be enough.
As part of my “life after transplant” mantra, I cycled 1250 kilometers across Rajasthan with the message of ‘Organ Donation’ in March 2020. My effort has been appreciated and will be recognized by India Book of Records and Limca Book of Records soon.
The CoViD-19 pandemic has upset my schedule. I am taking extra precautions; with my low immunity I am at constant risk, but I cannot allow fear to cripple me and my life. I stay masked and take all precautions and have started cycling to stay fit. I and my brother have set up a ‘home gym’ on the rooftop and staying fit is our constant mantra.
I carry a week’s worth of medication, sunscreen, and water bottles everywhere with me. Using public restrooms is a constant risk which I minimize by using sanitizing products and avoiding them as much as possible.
Living with uncertainty is another factor which one must learn to adjust to. I have adapted to being at peace with my life – day by day. I don’t pay heed to most suggestions and remarks, forgiving people as I know they don’t understand. I keep myself up to date with research in transplant field and as more and more people connect to me via social media, seeking guidance and counsel, I in my role as a mentor and counsellor find satisfaction in helping others. It gives meaning to my life.
I look forward to reaching out to more and more people, as I plan to start giving awareness talks and holding face to face sessions once the pandemic is over.
I live each day with the reality of an uncertain future. But then whose future is certain? Be positive, live life with happiness and faith, and value your family and friends… this is the only way ahead.
