The Story of My Maximised Life
Shrikrishna Shinde – Parbani, 2008
I, Shrikrishna Shinde would first of all wish to thank Viji who gave me this opportunity to write my story. In January 2000 I was 32 years old and married. I had two daughters, a five year old and a one year old. I had been working as a Regional Manager from the age of 19.Until then I had been successful in overcoming all the big and small hurdles in my life, due to which I had a lot of self confidence. In February2000 my self confidence got a big blow because I was diagnosed with CML.I had visited my doctor as I had fever and felt weak. When the doctor saw that I had an enlarged spleen, he got me to check the CBC count which confirmed that I had CML.
February 2000 to September 2001
I started my treatment at the Tata Memorial hospital under Dr Suresh Advani. He put me on Hydrea Tablets and also prepared me for BMT for which I began HLA typing. My five sisters were tested but it was my bad luck that none of them matched with mine so the option of BMT was ruled out. I was referred to Dr Tapan Saikia for starting Interferon injections. Before putting me on Interferon, Dr Saikia again advised an Auto BMT and explained the following aspects of Auto BMT—
1. Auto BMT is not a total cure for CML.It can be only 40-80% successful and can increase life expectancy.
2. I would have to stay in Mumbai for about 4 to 6 months.
3. The approximate cost would be 8 lakhs.
4. Since expenditure was more than the expected result, one had to consider not spending money on it but avail the benefits from the office or Trusts and then go in for an Auto BMT.
By God’s grace an MLA from Maharashtra pushed my case, due to which I was granted an ad hoc allowance of Rs 6.80 lakhs and the remaining amount was promised to be reimbursed to me. At this juncture, I decided to go ahead with Auto BMT.
Sept 2000 to May 2001
During this period I made Mumbai my place of residence and went ahead with Auto BMT. All the procedures were extremely painful. It was during this period that my family members stood by me with a lot of courage. The BMT staff of Tata Memorial Hospital showed a lot of co-operation, also Shrikant Patil and his students donated platelets from time to time and helped in getting new donors to do the same. Shri Mohan Rathod a Senior Inspector did his bit by helping out my family members. Due to everyone’s support and help I successfully overcame the difficult Auto BMT procedure and retuned to my hometown in Parbhani.
May 2001 to July 2002
During this period I met Dr Saikia every month for a follow up. In the second month itself, my WBC showed a rise which indicated that Auto BMT was not successful, so Dr Saikia put me on Interferon for five days every week. The injections cost me Rs 25000 every month. It was a huge expense for me and since I was not getting reimbursed for the same, I started feeling the financial burden. There were also side effects like itching and rashes which started bothering me. It was in July 2002 that Dr Saikia recommended Glivec Tablets to me. The daily cost was Rs 4000 and they had to be taken continuously. Due to financial constraints, I expressed my inability to purchase the same. At that juncture, the doctor gave me a recommendation letter to meet Viji Venkatesh of Max Foundation to see if I could obtain the medicine though the donation programme of Novartis. I met Viji Venkatesh, gave her the letter and requested her to enrol me in the GIPAP Programme. Viji interviewed me and said, “Shinde, I will have to see if you qualify for the donation programme because there are some guidelines I have to follow and some criteria that has to be fulfilled. The process will take some time.” I lost hope of getting Glivec free of cost.
Then, out of the blue, after a week I received some good news. Viji Venkatesh called me up and informed that I had been enrolled under GIPAP/MAX FOUNDATION and would get GLIVEC free of cost. I was put on GLIVEC 400mg daily .But within eight days, I started experiencing itching, muscle cramps and other side effects due to which I stopped taking GLIVEC and informed Dr Saikia about the same. After intimation from Dr Saikia I restarted Glivec on a lower dosage and gradually increased the dosage.
September 2002 to July 2008
Within six months, my dosage was increased to 600mg.From that time; all my counts are in order. I can manage all my jobs well. All my friends and family members take good care of me. Except at the moment I take medicine, I forget that I am a patient.
Facts of today
1. I have everyone’s co-operation, but I need to improvise on my self confidence. My aim is to be as confident as I was before my ailment.
2. When I am faced with lot of hurdles in my life, my main aim is to give priority to my health.
3. I would like to meet other patients and share my experiences with them.
4. I am aware that I am not completely cured but my ailment is under control with GLIVEC and I am very optimistic that I will benefit with any new age drug which will be given to me whenever it is introduced here.
One lyricist has written
This life is not a life if there is no story behind it.
Fortunately I can call my existence as LIFE, as there is a story behind it .CML and the turn of events has given a twist to the story. I am extremely grateful to Novartis, Max Foundation,, Dr Saikia , Viji Venkatesh and all my well wishers who backed me in my time of need.