DiM Light – My Journey Through A Liver Transplant

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.

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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.

Wing Commander Dileep Puranik

My name is Wing Commander Dileep Puranik, of age 66. I served in the Air Force for 27 years. I hold a PhD in Atmospheric Physics, I live in Pune. Until I became very ill, I was busy teaching in the University of Pune and was happy with my research, my academic colleagues and students. I was diagnosed with cirrhosis of liver in September 2009. It was cryptogenic (pointing to primary biliary cirrhosis and autoimmune illness). I was evaluated for liver transplant in early 2010. Then my condition improved and I remained quite well until end of 2012. In 2013 my ascites was declared refractory. My illness worsened and I had a shunt put in the liver. Finally, in July 2014 I was given a new liver.

8 Comments

  1. Deep · September 23, 2016 Reply

    Mr. Puranik. You are a fighter. A brave fighter. I salute you for your endurance and I must say your wife is also very brave and supportive. The fact that how she smiled in front of you in spite of being so worried from inside shows that it must not have been an easy journey for her either. I am going through a very tough phase in my life, as my 8 yr old daughter is going through serious emotional issues. We are working on it and I am aware that it is not going to be an easy battle. But your story has inspired me a lot and taught me that tough phases do pass, just we need to have faith and courage and of course hope plays an important part. Thanks for sharing your story and inspiring many for whom life is not an easy battle. Hats off !!

  2. Dr Vishnu Gupta · September 24, 2016 Reply

    Fantastic story of a brave man and a woman which stand with him all the time….great wishes for him to 2nd life of god.

  3. Ajiut Tyagi · September 27, 2016 Reply

    News that Dileep, a man of simple life style, has been diagnosed with cirrhosis of liver came as a rude shock to all Air Force Course-mates, who had known Dileep in and out since early 1972. After VRS from Air Force, Dillep was enjoying his research and teaching at Pune University and Anita was doing very well in IT. It had been always pleasure to meet Dileep and Anita whenever I visited Pune. Any disease take its toll on psyche of individual and family and it was no ordinary disease. What was admirable that Dillep and Anita took it stoically. I watched them during pre-operation period and their visit to Delhi and was moved by their positive frame of mind in those difficult days, While Dileep faced the ordeal like a true soldier, it was Anita who stood rock solid during turbulent times, managed consultations in Mumbai, Delhi (RR and other hospitals), Pune, Hyderabad, and Chennai and made liver transplant happen. While no doubt credit goes to excellent team of Doctors at Command Hospital Pune and Apollo Hyderabad in managing the disease and successful liver transplant, it is will power and ‘ Tapasya’ of Dileep and support of Anita, which played the most positive role getting over very difficult period. Thanks for sharing your experience which I am sure will help many to take things in proper perspective.

    Success stories of organ transplant and awareness about organ donation will certainly help many who are waiting for organ transplant.

  4. Jyotsna Kher · September 28, 2016 Reply

    As close friends, we’ve seen Dileep and Anita go through this ordeal heroically. Hats off! Your story not only provides hope to so many others waiting for transplant, it will inspire people to pledge organ donation.

  5. Nitin Puranik · September 29, 2016 Reply

    Dear Dilip,
    Happy that you have put down your pain, agony, hopes and happiness so wonderfully. Although we were aware of major happenings, the article showed many more details were not aware. It will give courage to many people fighting same or similar medical problems.
    And all kudos for Anita for being by your side all the time. It was one courageous journey by both of you.
    Wishing you all the best and yes keep writing.

  6. madhav krishnaji puranik · October 6, 2016 Reply

    To Dilip n Anita -An ode to Triumph of Human Will
    Love n Hope

    the fighting spirit,
    strikes the courageous chord,
    the panic shivering body,
    struggles on its own accord
    nearby n on distant horizon,
    stands the Lady with the Lamp
    with the Flame of Eternal Love,
    guiding seenely the Companion Dove.
    as Ups n Downs test them,
    Darkness of Despair will not haunt them.
    Ocean of Fear will not swallow them,
    Wheel of Time will not deter them.
    as Lady stands like Rock of Gibralter,
    like the Cape of Good Hope,
    he rides confidently the Life’s Tide,
    conquering Death with Heroic Stride.
    Long live their Synchronized Effort,
    Long live their Mutual Support,
    Let their path Inspire Forever,
    To every grief-stricken Soul Ever n Ever.
    Never say ‘No’ again,
    Love n Hope Always Remain.
    –Madhav Puranik.Pune 6.10.2016
    M– 9623442221

  7. Satish · October 7, 2016 Reply

    Dilip, Anita:

    This story is not of sickness and rest but of vitality and zest; not of struggle but of mettle!

    Salute you both!

  8. Amol Patil · December 22, 2016 Reply

    Hello sir.. It was very emotional to read this blog. I lost my mother to liver cirrhosis in 2012 and it still haunts me to this date. She had jaundice, followed by portal hypertension, ordeal of bandligation, ascites and finally oedema. She fought with her condition for 17 years before she gave up. We had registered her for liver transplant at ZTCC but with portal and mesenteric vein thrombosis it was very complicated for doctors to consider her for the transplant. Moreover this was in 2011 when there was very less awareness for cadaveric donations. Even while writing this reply, I am pouring my heart out with her memory.. But I am very happy for you and your family for this successful journey. Hats off to your wife and family for supporting you throughout the journey.

    It takes a strong family and God’s grace to come out of this. I am really happy for you.. but I would be lying if I say that I am not missing my mum now. Wish she was still with us!

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