The informed patient3 min read . Updated: 29 Nov 2010, 08:53 PM IST
The informed patient
The informed patient
Being HIV-positive is only one of my problems and I have to deal with it," says Varun*, 22, who discovered his status seven years ago.
Varun’s tryst with medicines and hospitals began when he was just three days old; he was diagnosed as haemophilic (a medical condition in which the ability of the blood to clot is reduced, causing severe bleeding even from a slight injury). “From then on we have spent six months in the hospital and the other six at home," says his mother Janaki*, sitting in their home in Bangalore.
The family suspects that Varun got infected during one of the blood transfusions he received in 2003. At the time, he was just 15. “The news of the infection did not devastate me really. I was already living in and out of hospitals. Besides, I studied about AIDS and HIV in school. Because I was aware about the problem, I did not panic," he recalls.
Varun had to quit science and opt for arts at the pre-university level. “My doctor said that I wouldn’t be able to stand in the lab for hours so I made the switch early," he says. But through all of this Varun has kept a positive outlook. “I know I am physically weak, but there is nothing that stops me from using my brains to the fullest." After finishing his bachelors in computer applications in 2009, Varun has been working as a faculty member at a computer education institute in Bangalore.
Varun is wary of letting friends and relatives know about his condition. “Sure I want to create awareness about HIV/AIDS; I do talk to my friends about the disease, but only by referring to other infected people I know. Maybe I am testing the waters, but at the moment I don’t want people to know about my status," he says, “It is sad that society hasn’t been able to accept this disease the way it has accepted other diseases. The problem really isn’t the virus, it’s the stigma."
When he tested positive for HIV, he was referred by his doctor to Asha (Action Service Hope for AIDS) Foundation, a Bangalore-based NGO. The NGO works with people who are HIV-positive or have AIDS and offers counselling sessions and medicines at subsidized rates.
“When Varun first came in 2003, he had a CD4 (cluster of differentiation 4) count of 165 which was worrying and categorized him as a person with AIDS, but over time he has become stable and has a count above 200 which is the cut-off for the AIDS classification. He is now just HIV-positive," says Glory Alexander, founder of Asha Foundation, adding that as per World Health Organisation (WHO) guidelines, a person with a CD4 count less than 350 is put on anti-retroviral therapy (ART) drugs. The CD4 count in a normal person is between 500 and 1,500 cells per cubic mm of blood. A person who has just contracted HIV might be in the normal CDU range for a while.
For the past year, Varun has been on the second line of ART drugs, after his body developed resistance to the first line of ART.
“After 2003, I have been very careful with my diet. I eat at home only and hardly ever eat junk food. However, now that I feel better, I sometimes eat burgers and Chinese food." He also practises yoga, though he is not very regular. “What I always do regularly is write in my diary. That keeps my thoughts clear," he says.
Varun says people get depressed because they feel sorry for themselves when they learn that they are infected. “Stick to the medication course. There is no reason as to why life cannot be normal for HIV-positive patients," he says. On the suggestion of his doctor who treats him for haemophilia, Varun also talks about his life experiences with second-year medical students once in two months. “It helps to know that my inputs can be valuable and also these talks give me a chance to reflect on my own life," says Varun.
* Names have been changed to protect identity.