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.
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