Dealing with the news
The initial shock of the news was reverberating, I was any other 32 years old back then who believed that "I am too young and too healthy to have anything on health to worry about", much less an organ failure and yet it happened. I was in Aurangabad (MH) on business, I quickly left for Mumbai saw Dr Raman Malik, at Hiranandani Powai. He conducted quick USG and blood test, which was followed up with a biopsy which confirmed the pathology. I checked myself out of the hospital, boarded the next aircraft to Patna; I needed to be with my family, especially my mother, at that point. The melancholy news was broken out and I consulted Dr Pankaj Hans, Ruban hospital at Patna. He is an absolute gentleman. He understood, that the emotional load of the disorder was weighing on me much more than the physiological effects. He sat me down, gave me stats and literature to read about and said that is going to make an attempt to revive, though it was hoping against hope. He also mentioned that even if we did not succeed in revival what is to follow in the line of treatment is a well-tested step and it has a very high possibility of succeeding so I had nothing to worry about.
Midcourse, 2nd and 3rd opinions and Changes!
Midcourse
We kept out little experiment going for about 5 months my condition did not improve but thanks to the medicine and regular check-up it did not deteriorate by much either. My creatinine levels in its worst days sprung to 8 but never did it go beyond that mark, every other parameter was more or less within specification - thanks to the timely advice that I received from dieticians and my principle doctor, Dr Pankaj Hans. I was on a low protein, low sodium, low potassium, nearly zero oil and zero sugar diet (Glucose levels were fine then and they are fine even now but my Docs thought that it is for the best for me to abstain from processed sugar and I did)
2nd and 3rd opinion
Till I fell victim to a serious health condition, I used to think that 2nd and 3rd opinions are a waste of time. I know it sounds foolish, but for the longest time, I maintained that one must put a lot of thought and care in making it 'First Time Right'. You can blame it on my corporate training for holding such a belief. Nevertheless, the faith was shaken and I did agree to put biases aside and seek reviews on my condition.
Within the city
Padma Bhushan, Dr Indu Bhushan Sinha, a respected medical professional who as the legends go was also Dr Pankaj Hans's teacher/mentor in his residency days. I am guilty of jumping the queue of the appointment here, but I was desperate so I gave myself a pass on the rule. We had a good conversation. He too understood that more than the discomfort of the failing organ the uncertainty of the future that was troubling me more. He gave me a plethora of statistics and a bag full of literature to read. He echoed the advice that Dr Hans had given to me. Though, he did underline that I should prepare myself for a transplant, find a donor etc.
A trip to the south!
Medical tourism is real. Christian Medical College, Vellore holds the reputation of being upright with its reputation of giving quality medical care to the society and also has the unique distinction of being moral. I choose to take the 3rd opinion for its medical prowess and not for the moral or theocratic identity that the institution has. I am guilty of jumping the queue here too, I took the 2nd and last exception to the rule that I had set for myself - I was desperate. I met the dean (Dr Peter), the head of nephrology (Dr Prasad). I shared with them the history, they prescribed a few tests, I got all of them done. Results came in 72 hours and I saw the docs with them, they unequivocally confirmed that 'Kidney Transplant' would have to be done, there is no other way to deal with the condition. I requested for a guided tour to the transplant facility, I was handed over to the head of nursing (surgery) Sister Martha and I took a trip of the ward that housed people who had undergone the transplant. I spoke with a few families understood their journeys. Booked a cab from the hospital for Chennai, checked out of the hotel that I was lodging in, and took to the road. Reached Chennai and I checked myself again in a comfortable place and then flew back to Patna Via Delhi.
Changes
Our sense of identity is inextricably tied to our physical appearance - our body weight, the texture of the skin, hair length and quality, facial geometry. We might say that these do not matter enough number of times but it does and you know it when they start fading away.
- I lost 20 Kgs of body weight in 6 months.
- My hair was falling like it was autumn for my scalp
- Lost appetite, food meant nausea.
- Muscles had lost most of its strength, I used to get tired sitting.
- Sleep became irregular.
- Blood pressure had become as predictable as London's rain.
- I was going in and coming out of hospital admission ward more regularly than a priest visits church.
- My cognitive abilities were intact but my body did not support prolonged reading, anything more than an hour meant like going to the gym on the 2nd day with cramps.
- The weirdest of all is to see your entire family suffer with you.
Eventual decision.
Fun fact, I returned from Vellore on my B'day, 24th of July! There was very little to celebrate, given how hopeless things looked from where I stood in 2016. I did deliver the news to my family and it was then that we decided to finally prepare ourselves for the transplant. Transplant mind you is not only a clinical procedure, but it is also a legal one, more about it later. My situation had worsened. I had got admitted for the 8th time in Ruban hospital, and the creatinine was just not willing to give up, it was growing as kids do in their adolescence, a few centimetres every week. I underwent minor surgery for creating a fistula, so that should things go south, I could be put on dialysis, without having to drill a hole in my neck. This is when Dr Pankaj Hans suggested that I visit, Medicity Medanta at Gurgaon and see Dr Shyam Bihari Bansal. He phoned him up and got me an appointment too.
Medanta Medicity : Gurgaon
We landed in Delhi, went straight to the hospital, met Dr Shayam Bihari Bansal - who came across to be a clam and balanced medical professional. He is a great listener. When we visited him the next day with results, he concurred what all the Docs that I had met before had confirmed. A transplant was now the last resort! Dr Bansal explained the entire process to us. Dr Bansal's approach to the whole things was reassuring. He made it sound, possible, easy, safe and intuitive, somehow. I do not know how but he made us believe that it could get done.
- Pre Transplant procedures - it takes nearly a month!
- Tests to ascertain suitability of the 'graft'
- Complete check-up of the recipient
- Post Transplant Care.
- Isolation
- Check-Up
- Road to recovery etc.
- Risks involved.
- Detailed literature giving stats on known risks are shared too.
- Absolute transparency is maintained.
We returned back. Collected our thoughts, made up our minds and decided to head to Gurgaon, this time as a family.
Surgery
My little sister, Jyoti decided to donate one of her kidneys to me. The thought of robbing one's sister of her organ was not an easy one. Several disturbing days and sleepless nights were spent in rationalising with that gruesomely selfish thought. Some decisions become easy when are taken with the help of family, I did get over it. Tests got concluded in favour of me receiving the organ and I was slated to go under the knife on the 2nd of Nov 2016. I decided to isolate myself for a week before the surgery to avoid catching any last-minute infection.
Day of admission
1st of Nov 2016, at 10 AM I got checked in, after completing all the formalities. I was moved to my room, my mother and my sisters were with me. We talked and joked about the whole situation but all of us were scared as hell, the fear was palpable. Time moved twice as fast that day, before I could blink twice, dinner was served and I was given laxatives, post that. I was also given a sleeping pill because I did not have to struggle that night, I guess.
The day of the surgery!
I was woken up way too early, 5 AM! (Robin Sharma's book 5 AM club, had not come then) preparation for the surgery started, body hair was removed I took a bath with disinfected water. In those 3 hours of the morning, I re-lived my entire life. I also wrote and scheduled emails to for all close friends and family thinking that if I did not make it, they would at least have an email from me. The moment came when I had to give my family a last look, teary eyes and forceful smiles filled the room and I got wheeled in with my sister who incidentally was very confident, a lot more than I was on that day, as if, she knew that it is all going to be alright. I had switched off all calculations of the future, on this day. All I wanted to do that morning was to breathe every moment, look at my mother listen to her and watch my sisters. That is all that mattered. In the month that I had spent at Medanta in the course of my testing, a lot of the staff had become friendly with us. Dr Ghoshe, the surgeon, the man responsible for repairing me to health was an affable man. He cared to not only explain to us the procedure but also took time to enquire about our emotional well being and readiness. Resident Psychologist also visited me but when I shared with her that I had studied the same subject, a lot more than she had, to put it mildly; she kindly wished me luck, exchanged numbers and left me to my thoughts.
I was tranquillised, operated upon for 8 hours, there was a complication in the surgery, I had to be re-opened and then stitched back to life. Anyhow, the ordeal was over and I regained senses and was wheeled from the operation theatre to the ICU with a million wires/pipes running from me to all kinds of monitors and gadgets to measure real-time heart rate, BP, pulse, oxygen among other things. That is where I spend the next 6 days, before getting moved to a regular room.
Recovery
Recovery started right after I was attached with the 'graft'; the very next day when the blood that was drawn out me, revealed that the creatinine had started sliding down, in 5 days it was below the normal mark. I was made to walk the next day, it was an assisted affair, I walked a few steps, sat on the chair in the ICU room. I was all stitched up and weak, with the pipe that was put down my throat, I could not even speak clearly but I was feeling better. For the first time, in 8 months I felt hungry and looked forward to having a meal. I was not in a position to eat on my own so the nurse fed for the first 3 days and then I picked up the responsibility. With every passing day, HB started rising and creatinine falling below the previous day mark. Strength started returning too.
Post Operation life - a life of moderations.
I got discharged the 9th day from the surgery, we came to a place we had rented close to the hospital, we wanted to be at a stone throw distance from the hospital; we did not know then that we would not need to make an emergency visit, anymore. The fact that worse was over was unknown. The word "immunosuppressant" became a reality of my life. This drug, if I may take the liberty of putting it this way is meant to trick the immune system into not attacking the 'graft' as a foreign element causing rejection - in other words, the defence system of the body is incapacitated, leaving it weak then it actually is. Here are a few things that changed, almost immediately for me.
- Transplant meds are required to be taken, twice a day and the patients are required to clock it by the minute; for me, 10:00 AM and 10:00 PM are those times, as a result, no matter what, I have to take those meds at those times.
- So I can no longer sleep beyond 10 and can't go to bed before 10 either. Routine needs to be adjusted.
- The meds in the first 12 to 16 weeks, make you extremely drowsy.
- Everything that you did effortlessly before will require an extra push, physically as well as emotionally.
- Steroids, swell you up, ever so slightly. You may look a little different. I lost a lot of hair too.
- Because I used to look excellent before (kidding), I look above average now (which is very good)
- Visits to the doc will be frequent in first 12 weeks, from twice in a week, to once in a fortnight to once every month to once in two months to every quarter - your doctor will suggest a follow-up routine that suits your need.
- Because your natural defence system has been forcefully muted, you will be more susceptible to catching bugs, so be on your guard all the time. Do not worry, it feels like a lot of work in the beginning but as time passes it will become your second nature.
- Avoid crowded places.
- Visit a hospital/clinic only when absolutely necessary.
- Stay away from those who have some known infection
- Fever
- Cold
- Cough
- Be mindful of what you eat
- Must be fresh and well cooked.
- Do not go overboard because you'll add weight faster than regular people.
- Remember, strength - physical and otherwise will get impacted, learn to live with it.
- You have to ensure that you do not get an injury or stress the abdominal area.
- Moderate exercise will become a must.
- Maintain superb personal hygiene.
Support system.
Family
My mother has been a solid rock of support. She has a unique Goddess like demeanour, she is very gentle and sweet but at the same time, she has the strength of the world. if it was not for her conviction, support and encouragement, I would not have made it through. My little one, Jyoti, gave me the 2nd lease of life - I owe this one to her. My other sisters too Minu and Prity stood by my side and helped me deal with a threat that could have ended my life. I do not take a breath without thanking them.
Friends - My school buddies, Rahul Sinha and Nitin Jaiswal were by my side, with all the best wishes and more, always, too.
Doctors and medical staff.
Hospitals
- Ruban Hospital, Pataliputra Patna (where I got my initial care.)
- Medanta Medicity, Gurgaon (Transplant and post-transplant care.)
Doctors and their entire staff.
- Dr Pankaj Hans, Ruban Hospital, Patliputra Patna
- Dr Shyam Bihari Basan, Medanta Medicity
- Dr Ghose, Medanta (Surgeon )
Nothing I can do to praise these God sent individuals to ever be enough. If you happen to know someone who needs attention. Recommend these good men with 100% certainty
What to avoid.
Advice from well-meaning people.
- Your friends and family love you and they hurt to see you in pain and in suffering. So in that desperation, they sometimes make suggestions which are not qualified and must NOT be pursued. Some of the advice that I had to fend off were.
- The herbalist who claim to cure the disease.
- Spiritual solutions.
- Tantrik solutions.
- It is ok, you are alright - eat 'this', do 'that'.
- Know your limits and do not fall for enticements. You have to behave responsibly.
- Do not indulge.
- We take this med for 'that' you can pop it too.
- After surgery all meds are not for you, ask your doc.
- Do not go by what others have to say.
- Do not participate in 'fads' - 'KETO', 'VEGAN' and other exotic disciplines are perhaps not for you.
- Check with your doc before you sign up for anything 'fancy'
It is not over till its over - live your life.
- I went under the knife on 2nd of Nov 2016 and I resumed work on 15th of Feb 2017.
- I have 4 career elevations in the last 3 years, I am a VP now - competing in the real world.
- I live a normal life, so much so, that I were to not reveal, no one would know, about the transplant.
If I can do it you can do it too.
Remember, life is what you make of it.
