DiM Light 1: The Dawning
My name is Dileep Madhav Puranik. Friends and course-mates fondly call me DiM, hence the name of my blog. I am writing it to say I have had a liver transplant. I have come out of it well. I had my liver transplant on 3rd, July 2014. This means I have survived longer than two years. Available evidence says I shall carry on for a while. That is a good statistic and powerful motivator. If you, the reader, are facing the prospect of an organ transplant, I hereby certify: You will be better off afterward.
My aim here is to show a DiM light on (record) my journey. Will start with my symptoms. They make for a typical collection. Each stand-alone symptom is innocuous, most often implying little. Put together, the collection meant a potent illness. The lesson: Keep an eye on yourself but do NOT become a hypochondriac. That is foolish.
It was 2006, the world was shining. The Air Force was munificent and the spouse was in IT; thank you. My life-long issue of dozing off at boring things was making waves. I was dozing off while driving. Once I drove on the Mumbai-Pune expressway without seeing the road for some time. In another case I drove nearly two kilometres on a crowded highway and I still have no memory at all how I came to be stopped at a traffic light. And I chose to ignore it.
Pune is quite dry other than in monsoon months. Dry air, dry skin, it itches. But I had it bad. Okay, I drive at midday. I face the sun. The darkness on my forehead, on my cheekbones, on my neck would not go away. Reaction: ignore it.
Fast forward to March 2009. I was at a five star hotel. Nursing my only one beer (per year) but then I eat a few prawns. Next morning I wake up with severe stomach pain that took two days to subside. Then early morning, cramps in my calves. Grade one: the Real thing. Self, wife, we meet family doctor again. Dr Satpute is always thorough. Jab, jab the whole abdomen. On the right side, just below the rib cage, it hurts badly.
Next morning the Lab takes blood, does a sonography. Afterwards, the sonologist asks me to step out while he confers with wife. He chides her for letting me be the local drunk. Wife, bless her, protests this man is a teetotaller may be a small whiskey on our wedding anniversary and maybe a glass of beer on Holi. Not even that since we left the Air Force. The sonologist commends my soul to God. In the evening Dr Satpute pronounces the sentence. Liver function tests are terrible, liver is shot. Hepatomegaly was the word he used.
Next, lots of medication, and we do an endoscopy. Grade III varices (inflamed veins in the food pipe, oesophagus) present. So baby you do have liver cirrhosis (end-stage liver decease).
So that was how it dawned on me that I was going to need a liver transplant.
DiM Light 2: Grimaces and Grins
The next part of the blog is to say how I could grimace and yet grin and carry on for four years of illness.
Grin after a grimace is made possible if you know the principle: Any pain, any disappointment can be sorted out by yakking about it for fifteen minutes (no more) of your ‘tea’ time.
To the cribs now: begin with muscle loss. Subtly but surely you shed weight, mostly muscle. I had difficulty climbing stairs. A visit to the doctor exhausted me. Old clothes would fit me again.
Feeling cold was the second crib. Feeling cold crept on me. First came the loose sweater at night. Then the sweater was there all the day. Anita would plead with me it was not cold at all and I would be a pig and insist it was cold. What to do.
The third crib was the pain. It would start early (2 o’clock?), somewhere beneath the ribcage and extend all over the upper right of the abdomen. I would be cold and paining and I would get cramps: long hurtful cramps. In the morning you force yourself to grin, there is no effect on my voice. Birds sing, leaves are still green.
Liver is a funny thing, it tricked me and my doctors. Monthly visits to the Command Hospital and path labs for checking my LFTs and the frequent endoscopy sessions were part of my life. Under the watchful care from some of most talented and kind hearted GE specialists starting with Col V K Gupta at Command Hospital my cirrhotic liver remained well compensated for almost 4 years.
DiM Light 3: Hospital time
Hospitals suck. But people that work in the hospitals are some of the nicest and competent people you would ever meet. Truly, they are ministering angels.
This brings me to January 2013. My muscles are non-existent. Without notice my left shoulder begins to hurt, badly. Muscle pull, minor issue? No Sir! It was a muscle tear and bones near my sternum were wonkily protruding out and I was hurting. No paracetamol, no ibuprofen, nothing was allowed. It was bad, like my abdominal pain days. It lasted two months. Am I trying to scare you? No. Then came a bloating tummy.
In July I had ascites as well as oedema in feet. I had not worn shoes for two months. I had nightmares, ammonia (produced by my bad liver) affecting the brain, thank you. Brigadier Puri alarmed at my state, got me admitted at the Command Hospital, Southern Command, Pune (CH). I was to reduce salt intake, have the maximum permitted Fusemide (Lasix) dose and so on. An MRI scan showed the cause of the deterioration in my health. I had portal vein thrombosis (obstruction). Things did not appear quite optimistic. Ugh!
The procedure to siphon the fluid out was started. First it was seven litres of fluid out and a litre of Albumin in. My feet and hands were ice cold. This went on again and again. I was maybe 12-13 litres lighter and 2 Celsius colder. All the people would keep on looking out if I had copped it. After all this, the overall kidney function did improve but the liver continued to worsen.
Brig Pankaj Puri and Col Sharad Shrivastava who had treated me for last four years and Gp. Capt. Mujeeb who had just been posted to CH, conferred with Anita and told her that I needed a shunt to bypass my bad liver. A TIPSS (Transjugular Intrahepatic Porto-Systemic Shunt) was put in at the Cardio Thoracic Centre (CTC) of the CH, a hospital by itself. Brig Pathak needed eight hours to complete it! My wife tells me TIPSS and Brig Pathak saved my life then.
For the next few months life was OK. However, this was but a reprieve. In September, I was assessed again at RR New Delhi for liver transplantation. I was once again put on priority list. Anita was told to register me for a cadaver transplant at other transplant centres as well. So we travelled to hospitals a, b, c… physically, on the Internet and so on.
My wife discovered Dr. Manish Varma from Apollo Hyderabad who holds clinics in Pune. She met Dr Varma. He assured Anita that he would not only replace my liver but get me back hale soon and hearty in a few months. Monthly meetings with Manish were now a big part of our life. Talking to him helped me get over the fear of the surgery. We met other patients who had recovered from a liver transplant.
In December, we were called to Apollo Hospital at Hyderabad. The old admonition to keep our bags packed came handy. We reached Apollo Hyderabad at 0130 in the morning and did not get a liver. The next six months it was a roller coaster ride. A call from several of the hospitals I was listed at, to be ready for a quick travel would throw us in a tizzy. There would be a scramble for air tickets and for making arrangements to leave quickly, only to be informed that the donor family had not given consent or the organ had to be given to someone very ill. So it went on a few times.
But lady Luck did not abandon DiM. On the night of 2nd July 2014 the coordinator from Apollo called at late night us saying this time the organ donation in the hospital was through and it was THE chance for me. A friend drop drops us at the airport an ungodly hour of 3 in the morning, We catch the flight from Pune and land in Hyderabad Thus at 0600 on 03 July 2014, self and Anita reached Apollo Hyderabad.
DiM Light 4: Happily thereafter
I write like it is something big. Yes, it is very big. On that day, the Apollo doctors (Thank You Drs Anand Khakhhar, Manish Varma, Rajshekhar, Prashant Rao, Dinesh Kumar and Saurabh Kamat) gave me a new healthy liver and I am hale and hearty two years since then. This liver was donated by a generous and courageous family.
We were greeted by transplant coordinator Girish and Sandeep. They set the process in motion. There were clinical examination and tests to confirm that I was indeed fit to undergo the liver transplant. By the time I was wheeled in to a waiting area outside the operation theatre it was maybe 1130. Anita was by my side telling me that I would pull out of this. Many months later she told me she was quacking inside and trying to show a smiling face to the world. This was the moment of truth. Maybe if I were an infantryman and seen bullets firing I might have been cool(er), but then…
I am blank about events after about 12:00 that day. Manish assures me, Anita assures me and all my friends assure me that they indeed put a new liver in my body. My liver function and other tests confirm that I have a healthy liver.
Thus, I woke up in a dim-lit bed, my wrists and legs tied to the bed (in a special ICU), Dr. Rajshekhar shouting that they had ‘done’ me and I was doing well. There were no time and date, my tongue was parched and there were nurse after nurse telling me that I was a good boy, but their appreciation did not extend to giving me any water.
Some 24/36 hours later there was a video chat with Anita and my bro-in-law. They also said how was I feeling and I was a good boy and they did not have any opinion on water. Monsieurs et madames, it gets on your nerves, this thirst. But these things come to pass. Three days and I am very much my usual self in another room, a new medicines regimen.
A liver-transplanted patient is under the hospital’s care for 15-18 days. A number of good and bad things happen and the continuous care is very assuring. The day began with lab techs for blood samples. Then came transplant surgeons, specialist physician, infectious decease specialist, endocrinologist, dieticians, physiotherapists. Nurses are 24 by 7. They all wanted me to sleep in the night and be awake in the day. I am sorry my psyche is very crooked. At night my back ached badly and the various tubes and cannulas in my arm hurt. By two or three in the morning I would be awake. My feet went cold and there was oedema in my legs, ankles and feet. But then Manish one day, after patiently listening to me, told me that for six months I had to do ‘tapasya’ (follow a strict regimen) if I wanted to get well. My physio, Sardarni Jaspreet Kaur made me stretch my physical limits every day.
Me and Anita on the day of discharge at Apollo Hyderabad, finally ready to go home.
The post-transplant protocol includes a one month review at the hospital. Therefore we stayed in Hyderabad with Mrs. Phadke, a remote acquaintance then and a dear friend now. The ambiance of her Jubilee Hills bungalow reminded me of home. On August 2 we returned to Pune. My ‘tapasya’ began.
I Pune I had the luxury of many doctors looking after me. My bedroom prison was not so limiting this time because the graph this time was on an upward trend. The weight reduced day by day and at one time it lowered below 70 kg! Alas! Such nice trends do not continue for long and record after record shows that transplanted people regain their mass. One good part of the regimen is the exercise. A daily walk does wonders. I felt good. You walk and sit down to regain your breath. Look at the sky or the trees and you see, actually see birds and butterflies and cats and happy dogs going about on their way.
Cliched as it may sound, this was a journey that I and Anita would not have been able to negotiate without our friends and family. They willingly took detours from their lives to be with us and to stand by us.
More than two years after July 3, 2014 I count my gains: I can walk without tiring out for one hour, I do read hugely and I have learned new science. Life does not suck anymore.