CML and I
Vir.K.Bhat – Jammu, October 2006
The Kashmir valley is my home. I was born on 9th Feb.1965. My birth place is a small village in the Shopion area of the valley. I graduated from the Kashmir University. I had a small house in the village but in 1990 due to militancy in the valley I was forced to leave my home and hearth there and flee to Jammu city, nearby.
I had been closely associated with the Swami Vivekananda Mission since my college days. I joined a sociopolitical group in 1990 and started to work for the relief and rehabilitation of my fellow refugees in Jammu and other parts of India. I enjoyed very good health which showed in my personality. I have never indulged in any bad habit like smoking, drinking etc, but I was a non-vegetarian from my child hood.
During my days of social work, many big events and a substantial body of work can be credited to me. I have toured the whole of India to educate people about the ill designs of the militants and terrorism. I have even been on a continuous hunger strike for 31 days in 1990.I have been the main organizer for many International social events. I have also addressed hundreds of meetings and press conferences in the last two decades.
In May 2002, I suddenly experienced mild fever and headache. I consulted the top most physician of our state Dr.K.L.Chowdhury who happens to be my fellow associate in social work and a prominent writer and a popular leader of the J&K state. First he just advised me to take some medicines for the fever and headache. But the medicines did not show any effect on me and I consulted him again after two days. Then he examined me and saw a swelling in my spleen and advised me to go in for an ultrasound and blood tests. The tests confirmed my illness and I was declared a patient of Chronic Myeloid Leukemia.
The news about my illness jolted me and shocked my whole family. (This consists of wife, child, my parents and sisters. I am their only son.)Within one day the news about my illness spread in town and my fellow social workers and friends gathered at my home. Everybody was worried and advised me to move to Delhi or Mumbai for treatment.
I was taken to the Rajiv Gandhi Hospital in Delhi, where the doctors started the process of diagnosis (tests etc.) and after 8 days CML was confirmed. I was put on Hydria. The tension and uncertainty was so high that my weight reduced by 16 kgs within 10 days. Doctors advised me to opt for the second line of treatment, that was, Bone marrow transplant. We went to AIMS for the HLA test. But I could not get a match with my sisters. This doubled my anxiety and I was now mentally prepared for impending death. Though my wife, parents and friends were giving me great reassurances, my mind was clearing my liabilities and I was trying to tell my wife to face the future with will and courage. In the mean time one of my fellow social workers Sh.Moti Koul, a businessman in Mumbai came to see me in Delhi. He took the photocopies of my medical files and consulted Dr.S.H.Advani at the TATA Memorial Hospital Mumbai. Dr.Advani gave him a ray of hope and he advised me to visit Mumbai immediately. So we had no option but to leave for Mumbai.
In TMC Mumbai Dr.Advani thoroughly explained the disease to me. He informed me that a new medicine called Glivec has come in the market which is costly but has shown encouraging results so for. He advised me to take this medicine for one year. We estimated and found that we would need at least 13 to 14 lakhs in hand for the treatment of one year. My friends and relatives assured me that they would help and we agreed to take the treatment. But when we went to the Novartis office to purchase the Glivec Medicine I was told that the same may not be advised for me, because I had not gone through the Interferon therapy. We again went to Dr.Advani, who in turn assured me that I did not need the Interferon at all and advised me to purchase the medicine.
We came to know that some organization known as Max foundation is administering a donation programme called (GIPAP) through which Novartis was helping CML patients by providing this medicine free of cost. I along with my riend and my wife went to the Max office, where I met Ms.Viji Venkatesh for the first time. We explained my whole case to her. She showed great sympathy but expressed her helplessness in providing the medicine as it was being supplied to Interferon failure patients only.However, Ms.Viji encouraged me and advised me to be in touch with her. In the mean time we purchased the medicine and within three months my PH+ came down from 98% to 18% and then after next three months it was just 4% and after taking Glivec for 9 months continuously the results were PH(-). It gave me a lot of confidence and hope. During those months I again regained my energy and weight and started to perform my regular work. Though I could not continue my social work as usual.
After one year when as usual I went to TMC for a checkup with the hope that the course of medicine was over, I was informed by my doctor, Dr.T.Saikia that I have to continue this medicine for an indefinite period. It was the most unfortunate day for me; it shocked me to such an extent that in depression I thought of putting an end to my life. I felt that my parents and friends and office had already contributed so much that I could not ask for any more help from any one. I was very desperate but my wife advised me to see Dr.Advani in Jaslok Hospital, so we went again to meet Dr.Advani in Jaslok. Dr.Advani again gave us a sympathetic hearing with a smile and assured us all possible help. He gave us a letter addressed to Ms.Viji Venkatesh. We went to Ms. Viji in the Max office and this time she informed us that Novartis is considering the supply of medicines to other patients as well. These words infused new life in me and filled me with new hope.
Initially I received one month's medicine on compassionate grounds from them. Back in Jammu the leaders of my social organization decided to start a small hospital (poly clinic) for the poor and needy people. Dr.Chowdhury was selected as its Chairman and I was given the responsibility of a General Secretary (ofTrust). The project was handed over to me. I accepted the same and thought that it is the will of God to handover a medical project to such a person who is himself battling with life. So within 6 months the hospital started working, under the name "Shirya Bhatt Mission Hospital". Many reputed doctors of the state associated themselves with it and are providing medical facilities free of cost. During the last 4 years the achievements of which are as under.
1. The hospital provided free medical care to more than 30 thousand patients during these years.
2.We are providing free medicines, some pathological tests and free consultations every day. During these five years we have distributed medicines (Samples) worth lakhs to the needy patients.
3. The eminent doctors of our state like Dr.K.L.Chowdhury (MD), Dr. Suresh Saraf(MS), Dr.S.L.Kachroo(MS), Dr.R.K.Khosa(MD), Dr.Indu Koul(MD),Dr.V.Koul (MS), Dr.V.K.Kachroo(MD), Dr.G.L.Pandita(BAMS), Dr.Sanjay Saroop(MS,FRCS) are giving their valuable time without any charge.
4.We are holding free medical camps for refugees in the hospital as well as in the refugee camps on different diseases. Till now we have held 43 such camps on diseases like asthma, diabetes, orthopedic, gynecology, dermatology, hypertension and other general diseases.
5.We are providing Hepatitis B vaccination free of cost to the camp inmates and till now have provided it to 500 people.
6.We are providing a vehicle/ambulance to the patients either free of cost or on very nominal charges.
7.We have done 4 population surveys on the refugees, covering different periods in the time span of the last 15 years.
One day in June 2003, when I was busy in my charity work at the hospital, my wife came there and informed me that Ms. Viji had called from Mumbai. I immediately rang Ms.Viji and she informed me that the request for the supply of medicines to me had been considered by the Max foundation and that Novartis would supply the medicine to me in future. This was actually the most fortunate day for me. I went to Mumbai and received the letter and the supply of medicines for the next three months. Viji advised me to be in touch with her on mail or phone and advised me to get the renewal of the medicine from my doctor after every three months. Since then I am receiving the medicines egularly from Novartis under GIPAP. I am also in touch with my friends of Max on email.
In 2005 Max organized a conference in Mumbai and I too participated in it; it was an eye opener and a very educative conference. Many doubts about the disease and medicines were cleared by the Max family as well as by the doctors. The most fortunate thing was that I had a darshan of that great lady Ms.Pat who is the founder of the Max Foundation and actually responsible for providing support and guidance to thousands of patients like me in the world. I had a chance to meet many of my fellow patients from different corners of India there. In fact the Max family including Ms.Viji, Dr.Pallavi, Ayeshah and many others has now become a part of my life.
I wish them great success in their mission.
Note: Though I have used the word "I", actually it is my Guru, my parents and my wife who have given me the real strength to fight this catastrophe.