And continue to give back to the community. Vijay Bhende, 38 and his wife who got married on World Aids Day 10 years ago, have completed their TB treatment and have now adopted 10 HIV+ girls. Vijay talks of his near death experience, his feelings of isolation and ostracisation and turning the corner to a healthy life.
Please tell us a bit about your condition
I am a TB patient who has also been diagnosed with HIV.
When were you diagnosed? What were the early symptoms? Please describe your experience.
In 2001, when I was just 16 years old, I started getting fever that would rise up to 102o F. The fever would start in the evenings after 4pm and would be accompanied by cough during the daytime. When I went to see the local doctor, he gave me medicines to get rid of my symptoms. After a month of no relief, I went to see another doctor who suggested a Chest X-ray. The results showed I had Tuberculosis in my lungs. One tablet was started in the mornings but my fever never subsided. So after another 10 days, I was admitted to Vidharbha government hospital, where all my tablets were stopped and I was started on the conventional treatment drugs for TB.
The next day, they did a blood test which showed I was HIV positive. The doctor called me into his room and informed me about the blood results. I had heard of AIDs but didn’t know much more about it. The doctor told me I had a month or so to live unless I gained some weight and then maybe few months more. I was in shock and utter despair. My cot was moved away from the rest and placed near the bathroom. I felt ostracized, other patients would not come near; hospital staff would wear gloves before approaching me. When I was discharged, I went home and into isolation for the next two months. I had confined myself to my room and went into a self-stigma mode. With my limited knowledge, I feared others would get my infection so I would do all my chores on my own such as washing my clothes, cleaning my dishes etc. After about 2 months, I had gained some weight and was feeling physically better; I realized I would live.
What was your course of treatment? Did you have to travel outside your city for your medical treatment or consult?
For my TB, I was put on the 6 month course, which I could do from home. Every 15 days, I would go to the hospital to collect my medicines. A DOTS worker would check in on me daily to make sure I had taken my tablets. After my TB infection subsided, I went to a private clinic to get started on my antivirals for HIV.
When I was prescribed with the 1st line of treatment for HIV, I had no idea when and how I was supposed to take my drugs. No instructions were provided and because of that, the treatment failed. I was then prescribed the 2nd line of treatment, which at the time was available only in big metro cities. For that, one had to travel all the way to JJ hospital in Mumbai after your name came up on the waiting list.
Were there any side-effects of the medicines? If yes, how do you manage them?
I used to be on an antiretroviral drug called Stavidine that caused loss of sensation in my legs and sucked in cheeks due to loss of body fat. I had informed my doctor about it but he dismissed it saying, all drugs cause side-effects. That drug has been discontinued now.
Have you had any related complications from your primary condition?
I have had two bouts of herpes infections since my HIV diagnosis.
Do you have a family history of your condition?
My father did get TB of the lungs about 13 years after my infection. My wife before we got married was diagnosed with TB as well. When I first met her, I recognized the symptoms and told her to get it checked out right away. She was then diagnosed with TB in the stomach, and underwent treatment before we got married.
Have you learnt anything in managing in your condition that you wish you knew before?
I wish I knew the symptoms to watch out for TB. I would have saved those 25 days that were wasted and could have been started on treatment for TB right away.
What changes have you made to your lifestyle because of your condition?
I have had to make some compromises in life due to my condition:
- I wanted to go to a nice college and become a Police Officer when I was young. I was physically unfit and hence could not pursue that, so my line of work changed completely.
- I was unable to marry the girl of my family’s choice because of my HIV status.
- I cannot drive a 4-wheel vehicle anymore because of certain side-effects that my drugs have such as dizziness etc.
Have you tried complementary medicine or therapies?
No, I did not want to take that risk of trying untried therapies.
Did you see a counselor at any point? Were you offered counseling at the hospital?
When I was in Vidharbha hospital, some NGO workers had approached me to join weekly support meetings. I really enjoyed meeting other people who spoke about their experiences and similar issues. It gave me the sense that I was not alone in this. The NGO was called VIHAAN. Once I got better, I started working with them to become a counselor for patients.
How has your family supported you? Who has been your biggest support/companion?
My eldest brother has been my biggest supporter through it all. I have two brothers and they were the only ones who knew about my HIV infection. My older brother would tell me that nothing in life was certain and encouraged me to pursue my life goals, get married etc. He assured me that he would deal with facing the society, and I need not worry about it. We never told our parents because of fear of their reaction and to avoid any despair on their part. My parents were simply aware of my TB.
When I wanted to get married, I realized it would not be fair to marry a HIV negative girl and pass on my infection to her. So, the decision was made, that I would seek a HIV positive girl. Regarding the date of marriage, I felt it was the right time to come out and declare it to the world while generating awareness for the same. What could be more apt than on 1st of December which is World Aids Day! The wedding was highly covered by local and national media. My parents were shocked when they found out the next day but were accepting and understanding of my step. My father held a reception for me later and told me that he would have never been angry and always been there for me if I had disclosed my illness to him earlier.
How did your friends treat you? Were you isolated? Did you share your experience with them soon after diagnosis?
I never told anyone except my brothers about my HIV infection. My friends knew I had got TB. When they found out (after it was published in the newspaper), they were very supportive.
What were some of the challenges you faced?
The biggest challenge I faced was while waiting for the 2nd line of TB treatment, which was to take place in Mumbai. I was already weak with a low CD4 count of 14, and waiting for two long months was really difficult. A friend of mine who was also on the waiting list went ahead and got treatment from a private clinic, or else he would have died. I too felt that I may not survive till my turn comes.
What keeps you awake at night?
I wish there was some way to reduce the daily pill burden such that I only have to take medicines once a month. It is especially tedious when travelling because pills have to be taken at specific times during the day.
What is your present condition?
I’m completely cured of my TB. I’m currently on an antiretroviral drug for HIV, with a stable CD4 count of 548 and viral load of 0. I have a daily routine of exercising every morning at 6am. I have a small gym at home itself. I have never been on any diet at all. I’m happily married and love my career. I work as a Project officer for VIHAAN for the state of Maharashtra. Our NGO provides aid for HIV patients via counseling, registration at ART centers, compliance with treatment, testing for family members etc. In addition, we have like a big brother support system for every patient.
What is your advice to other patients?
My advice to others would be to be aware of TB symptoms because prompt treatment is best. Accept it well and remain positive. Your life is in your own hands, so live as you wish. Just be careful not to pass on the infection to anyone else.
