Born-Again Man - Story of a Bone Marrow Transplantation

In the summer of 1998, My wife and I accompanied by our daughters aged 20 and 17 travelled to Kerala , my ancestral home, and to Banagalore where my in-laws are settled. This was our annual vacation from Dubai where I worked as a Senior Manager in an Arab Group. One week in to the holidays I felt a few ulcers developing on my tongue which then slowly became excruciatingly painful. The two doctors whom I consulted said they were harmless ‘Aphthous’ ulcers that come and go. I was told most people get them at some time or the other including them Doctors. Thus they dismissed me with a pat on my back hinting I was making a mountain out of a mole hill. However my ulcers kept re-appearing and then onwards I was not rid of them till recently after 13 Doctors and trial and error of 27 different medicines including Prednisolone as well as Dexamethasone internally. These steroids did give some relief in high doses for short periods; but since long term use was considered dangerous for bones, heart , kidney and so on I was wary of them. No Doctor thought anything more serious could be causing the ulcers. Each doctor kept repeating like parrots the same story of aphthous ulcers being a common condition and a minor irritant at worst. However I suffered immensely in the meanwhile as crops and crops of them appeared , sometimes at one time as many as 9 at various locations of the tongue and soft palate as well as mucus membranes of the inside of cheeks or on the epiglottis.

Should this have rung alarm bells in the minds of Doctors about doing a Blood Film and in depth study of my blood cells as they are emerging from the Bone Marrow ? Yes, but it didn't. I continued suffering for years. All sorts of investigations including ECG, Hepatitis , Colonoscopy and endoscopy , presence of Heliobacter Pylori ( the main cause for gastric ulcers) and so on were conducted by various doctors. Some great doctors suggested it must be stress that was the cause.

Let me Fast Forward now from 1998 to 2000 and 2001, back to Dubai, during which period, I developed peculiar stomach upsets. One such episode in 2000 April consisted of loose motions and stomach cramps, but no infection was detected. It continued for a week and subsided eventually. In another incident I developed hiccups one night which wouldn't stop. Two Doctors prescribed different drugs including Omeprazole etc but the hiccups increased its frequency and length of time between breaths and I felt chocked and panic ridden often. The condition abated slowly stopped after one full week during which I couldn't go for work. Both the Doctors involved in this episode did palpate my enlarging SPLEEN and advised me to stop drinking alcohol, if I drank often. Tunnel vision I should say. Anything to do with Spleen or Liver is attributed to alcohol, while gargantuan culprits of diseases go un-noticed. I had always thought that a reasonable "medical mind" would mentally scan all possibilities, however remote and take steps accordingly.

In year 2001 February I came down with heavy throat infection and was admitted to a good Dubai based Hospital. hospital. Due to low immunity, very low haemoglobin, or whatever, I developed pneumonia and was saved by simultaneous intra-venous injections of four powerful antibiotics. Regretfully again, no red alert was declared by any of the doctors, ( ENT Surgeon and a Chest Physician/ Pulmonologist) which to me now in hindsight seem highly unprofessional on the part of the various doctors and most unfortunate on my part.

In October 2004, my my friendly general practioner DR. Abraham Titus in Abu Dhabi was consulted by me for a stomach upset and on routine physical examination he detected my highly enlarged spleen and sent me rushing for an ultra Sound scan of abdomen and a blood analysis including a Smear test. The results were revealing and shocking for me--- I had what was then diagnosed by Dr. Titus as CML ( Chronic Myloid Leukaemia ). I asked the good doctor about the prognosis and he said 15 to 20 years if treated, but there was always a possibility of the disease transforming to the Acute variety ( AML = Acute Myeloid Leukaemia). I broke the news to my wife Molly and she was equally devastated.

I visited Christian Medical College vellore, Tamil Nadu ( India) for their reputed competence, dedication as well as for their reasonable charges. My condition was confirmed as CML with Myelofibrosis, by Dr. Mammen Chandy the Haematology Professor and Head of Department there. Since I showed hesitation in going in immediately for Bone Marrow Transplant, Dr. Mammen put me on daily dose of Hydroxy Urea, with the hope of achieving a remission or arresting the progress of the disease. It worked for almost a year by holding down my WBC total count around 6000 from a peak of 23000, as well as other parameters like haemoglobin, RBC and platelets etc.

In January 2005 I made another trip to CMC vellore and Dr. Mammen and his super team extracted my bone marrow ( drilling the hip bone and aspirating a small amount of marrow) for further study and concluded that the disease had indeed transformed to AML with large quantity of " Blast Cells". He said the news was very bad indeed. The only alternative was BMT(= Bone Marrow Transplant) and I was asked to contact my siblings for HLA matching for stem cell donation from the one whose antigens matched. A perfect match would be of 6 antigens though less number of match ( say3) could also be considered if there be no other alternative. Siblings being the only possibility, I contacted my brother and two sisters. Dr. Mammen preferred a male donor and so my brother, then a Colonel in the Army and posted in New Delhi was the best choice as a donor. Will his antigens match ? If not what would I do ? If my sisters' stem cells did not match, what would happen ? These questions remained.

In the meanwhile it was a great relief to me and others including the donor, my bother that lately the Stemm Cell harvest was very "donor-friendly" unlike in the past when the bone marrow itself had to be extracted from the bones of the donor under general anaesthesia. Now the stem cells are filtered out of the flowing blood by an equipment. The blood would then be pumped back to circulation of the donor. This was a oasis of pleasant thought in an otherwise bleak scenario.

I am now a "born-again" they say. The doctors gave me just about 30% chance of survival even with fully HLA matched Bone Marrow ( stem cells) from my younger brother. The Chemo-conditioning for 6 days was an un-mitigating nightmare. On many occasions during the chemo conditioning I thought to myself : " the desease was better than the treatment" and said so , to Nurse Philomina, who just smiled as she would have heard this truism several hundred times or more. In those six days I had diabetes, hypertension, prostate enlargement, jaundice, nausea & vomiting, urinary hesitancy & pain, hallucinations and insomnia. In my hallucinations I 'saw' my daughters visiting me, my pet dog Negra hiding behind the medicine trolley, away from the sharp eyes of the nurses and kept looking at my face with unflinching eyes, willing me to get well !! Seven different tubes pumped antibiotics, diuretics, pain-killers and other medicines and marrow-destroying chemicals via a major vein through Hickman's catheter in my chest , in addition to various tablets and capsules by mouth. My fast shrinking body was a battleground between cancerous cells in the marrow and the medical profession. I tried all my meditation methods and mantram repeating to disengage my mind from the pain and misery of treatment, which turned out to be intolerable while the disease itself was painless apart from dizzy spells due to drastic fall in haemoglobin levels. Even though I ate no food, I passed motion consisting of my own mucus membranes which started sloughing off from mouth down to rectum in acondition called 'mucocytosis'. Extra care had to be taken to not initiate bleeding as the platelets count was too low. With each 'crisis' the doctors huddled to confer to decide the best course of action. At one stage when passing urine was excruciatingly painful, the Urologists were called who considered inserting a catheter into the bladder but ruled it out as uncontrollable bleeding was a distinct possibility, and that could lead to death. So they relieved the pain with powerful analgesics and got the urinary sphincter to relax, by appropriate medicines. Urine could then be passed with accompanying groans and grunts.

My wife Molly and relatives took turn to be by my bedside to tend to me with my incontinence, vomiting and moaning and groaning. Nurses at CMC Vellore refused to clean up after me as they considered that not part of duty. Senior and junior doctors checked all parameters at frequent intervals till midnight and nurses kept vigil 24 hours monitoring BP, temperature and body weight. I drank double boiled and pressure cooked ( 20 minutes under pressure after the cooker whistle) and cooled water and even fruit juice. Every visitor wore sterilized slippers into the HEPA-filtered and ‘positive-pressured’ Transplant Room, and rinsed their palms in sterilizing spirit before touching me. On the 8th day after clean sweeping my existing bone marrow they kept me alive with blood transfusions since my body did not by then have any bone marrow to produce blood. Alongwith cancerous marrow cells, non-cancerous ones also got wiped out !

My Brother Cherish arrived four days before transplatation and tyook injections of ‘growth fator’ to increase the stem cells in his blood, which gave him slight fever as aside effect which he ignored.Then they extracted stem cells from his blood using a new fangled machine and pumped 180 ml each of the same on two consecutive days, and told me that the rest was with God. Doctors said the stem cells would circulate in my blood stream and in a few days find their home in various bones in my body and hopefully produce normal blood cells of various types. This aspect of how the stem cells behaved after the transplant was entirely in the hands of Nature or God. The first 100 days from the ‘D-day’ of stem cells transplantation would be critical with regard to possible Graft Versus Host Disease = GVHD ( tissue rejection ). On 19th May 2011, I completed the 6 years from D-day. I am still alive . They call me a born again Christian. Yes, they are right; I am a Christian by birth and I survived Acute Myeloid Leukaemia, thanks to the Doctors and nurses and technicians of Christian Medical College Hospital Vellore, Tamil Nadu and to the Almighty God who created Man Medicines and Medicine-men. They call me a " BORN AGAIN" man.

Book Review: Mani Shankar Aiyar's "Cofessions of a Secular Fundamentalist"

I have just finished readinhg the book , “ CONFESSIONS OF A SECULAR FUNDAMENTALIST” by Mr. Mani Shankar Aiyar ( Peguin Books). The following is intended as an appreciation of the book from my point of view as a member of the minority Christian community in India. There are reasons why i think all Indians both resident and non-resident must read it. The book is well written with a refreshing balance on opinions. For me what is really heart warming are his ability to give credit to members of minority religions, wherever they have contributed to Indian development in all fields, including education, literature and general enlightenment, among others.

As a Syrian Christian of Keralam, i feel proud and happy when Mr Aiyar ( a member of the ‘majority’ community ) writes the truth about the contributions to education and other social aspects by Chritians as a whole and Syrian Christians of Keralam in particular. He has said so many positive and true things about Muslims, Sikhs,Parsis, Jews and others too.

Some of his observations are worth reading and remembering:

“From partition and independence in 1947 to the first general election in 1952 the nature of our nationhood was the dominant political issue but with Jawarlal Nehru vanquishing the soft-Hindu school within the Congressby 1951 and going on to overwhelmingly win the general election in 1952 on a hard secular platform, the secular basis of our nationhood remained unchallenged for the next 34 years....”

On the topic of Coversions and the Constitution, his arguments are such that adherents of all religions must read and try understand our constitution sincerely: “ The constitution grants every citizen the fundamental right to propagate one’s faith. It does not confer the right to convert. However it also gives every citizen to be converted “.

To some of the the zealots in India he says: “ The Ramakrishna Mission is probably the most widespread, the most influential, and most effective of the missions operating in the country – certainly more widespread and more effective than the evangelical mission of Graham Stains who was brutally murdered by the zealots of the saffron brigade”.

When i was in college in Gauhati, Assam, i had both Hindu and Muslim friends. While i could not see or find any difference in either group, there were students who said things like: “ Pradip is a Bengali but Hamid is a Muslim. The surprising thing for me was the fact that both were from Calcutta, West Bengal, and both were nice gentlemen. I, as a Malayalee from central Travencore ( central Keralam) never could appreciate, such an attitude because in my green Keralam all were Keraleeans whatever his/her religious faith.

Whenever i have a chat with some of my Hindu friends they have a standard comment about population growth, and that is: “ Muslim population is growing at lightening speed and their population will overtake that of all others shortly” . Mr. Mani Shankar Aiyer’s statisical analysis clears the air so effectively thus : “ The 1991 census showed that Muslim population of India grew from 61 million to 75 million between 1971 & 1981.This amounts to 23 % over a decade giving an annual rate of increase of 2.2%. The Hindus’ number rose from 453 million to 549 million over the same decade giving an annual rate of over 2%”.

So, Mr Aiyer states : “ Muslim population is growing at just about the same rate as Hindu population. Will then the sons of Babur overtake the sons of Ram ?“

In the same manner the writer discusses Ayodhya, Hindutwa, and related topics and makes the reader conclude that partition’s responsibility was equally that of Hindus as was of Muslims’. I liked this part very much indeed.

As member of a minority religion in India, i.e. Christian ( that too a Syrian Christian with a history in India beginning with AD 52, a time when Islam was not yet born and an era when the Europeans were pagans or worse) , I find Mr Aiyer’s observations redeeming. I remember, as a young Area Sales Manager of a Multi National Company in Gorakhpur, a panwaala could not place Keralam as a state and advised me to call myself a “Madrassi”; and then asked me what ‘Jaath’ i belonged to. When i answered Christian, he shook his head side to side and quickly gave me the meedha paan and got busy with other things in a hurry. Poor bloke hadn’t heard of Keralam and how will he understand Christianity, which he associates with poor and hungry people who got converted after the arrival of Portugese, and British missionaries for the sake roti kapda and freedom from harrassment by their own upper caste brotherhood .

The early Christian origin in South India is reflected if one reads matrimonial columns in any English daily of the South where in brides and grooms from the Syro Christian Denominations announce that they belong to “ancient christian family”. Indeed that is true about South Indian Christians as they were Christians before Europe ever heard of Christianity. Surely the Europeans took up the religion and spread it far and wide with the help of their colonial clout. But that is a later story.

The author’s further analysis of ‘secularism and Indian religious minorities’ thows much light on points that are not widely known or discussed, much less understood.

Regarding Muslims in India Mr. Aiyar submits that: “ the root cause of Muslim backwardness in India is Pakistan. The partition in’47 robbed the Muslims of India of leadership – not political leadership but leadership at the grassroots. At local community level, schools and Universities,villages and in bazaars. The Muslim middle class of pre-partition India virtually vanished, as the ‘Muhajir’ took off for a new home ( Pakistan). True ,the fate the ‘muhajir’ met in their Dar-ul-Islam ( house of Islam) is infinitely worse than they left behind in the Dar-ulHarb ( house of war)”. This fact was driven home to me by a Tamil friend of mine who migrated in ’47 and happened to be my colleague in Dubai during the 1987 to 2004 period. He said to me : “ Laddoo milega sochkey gaya tha leikin kuch nahi mila” !

About Christians in India the writer narrates many interesting but less known facts. He writes : “ What has rendered complex contemporary India’s relationship with its Christian community is 2000 year long association with christianity through the Syrian Christian Church of Kerala and 500 years of symbiotic interaction with Jesuits.

Mr. Aiyar also explains the role played by Sikhs, Parsis, Jews etc in making India a true mosaic. He writes: “ Without its mosaic of minorities and majorities, India would not be the India we know. About Jews the author gives a very cute little piece of history : “In India the local Rajas of Malabar Coast ( that is north west coast of Keralam) ceded them territory to establish an independent enclave , free of all outside ineterference so that the only Jewish state in recorded history from the kingdom of David to the state of Israel was established in India”.

I will conclude this note with what the book says about the difference between India and the western civilization: “ It is the essence of Eastern civilization – specifically of Indian civilization – to synthesize and harmonize. It is the essence of western civilization to slice and divide. The western mind finds only one solution to problems of coflict : separate and compartmentalise ( dressed up as self determination). The western mind finds only one answer to ethnicity : domination of the minority by the majority ( dressed up as Democracy). The western mind finds only one response to diversity: elimination ( Hitler’s final solution), or unity through uniformity ( known in America as the melting pot, the dissolution of all diversity in to a single identity, the American mould). What the west finds totally incapable of comprehending, is unity in diversity”.

A book well worth reading.

IN SICKNESS AND IN HEALTH, A TRUE FRIEND

A pet owner recalls his enduring relationship with his dog.

My wife and two daughters and i were residents of Jumeirah, in Dubai back in 1990s. Having been brought up in rural South India, i was used to many cats, dogs – even cows and goats in and around my ancestral home. Hence my yearning for a pet dog was always strong.

In December 1994 – the week before Christmas - my young school-going daughters asked me whether we could adopt a pup. I immediately responded by calling K9 friends ! I was informed that several puppies were ready for adoptionat the villa of a woman living nearby.

The pet owner showed us four pups. We were all in favour of the beautiful female puppy, which had a black coat sprinkled with white fur patches. Her name was Negra and she always had one wet eye, as if from crying.

My wife said that after the initial enthusiasm, the rest of us would slowly stop caring for the dog and it would fall on her shoulders to feed and bathe Negra. The prophesy came true to some degree.

Years passed and Negra grew up to be a mild mannered , medium sized beauty. She gave three litters of six pups each.

Negra could recognise the sound of my car from about 300 meters and three road bends away. In the summer, she loved being in the staff quarters with the air-conditioner on, while during the winter she was happiest outdoors. Chicken bones were her favourite food. Negra was a much loved member of our family for 11 years.

Then in 2005 i had get admitted to a hospital in India for bone marrow transplant. Under the influence of various medicines i dreamt of Negra and had hallucinations of her being next to me. The nurses at the hospital laughed when they heard this from me, explaining that hospitals do not allow dogs in sterile rooms.

The week before Christmas, 2005, my daughters who were alone at home, saw some boys calling out to Negra. Our dog gingerly walked away with them. That was the last we saw of our dear Negra.

Four months passed and i returned home healthy. I hoped Negra would return or that we would know her fate. But we still do not know what happened to her. Negra came to us in a Christmas week and went away in a Christmas week. When Christmas 2008 approached, we hoped we would see her again. But that was not to be.

I am sure Negra put in aprayer for me when i was ill. Otherwise i would not have made it.

TITO MATHSON

(This article appeared in Gulf News, Dubai, UAEi, in 2007)