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Submitted by Dr S. Patel on 27 September 2018
Mona Balani, a young Indian woman wearing a bright red kurta and a colourful dupatta set against a colourful market background

Mona Balani, 43 from Delhi has had multiple rounds of TB and HIV. Motivated by her own experience of limited support and lack of knowledge, she now advises other patients and works actively with a support group of TB patients 

Please tell us a bit about your condition

I am a former Tuberculosis patient. After getting HIV in 1999, I had TB twice, once in 2000 which was TB in my lungs and second time in 2006 I had TB in my abdomen (extra-pulmonary). Abdominal TB can affect the lining of the abdominal cavity, the gut, lymph nodes and in rare cases the organs such as liver, spleen and pancreas.

When were you diagnosed?

I diagnosed twice with tuberculosis, once in 2000 and second time in 2006.

What were the early symptoms? What made you go see a doctor?

The first time in 2000, I had continuous cough for about 3 to 4 months. Initially, when I saw a doctor, I was prescribed cough medications and sent home. An X-ray of the chest was also done but it was clear at the time. I kept changing doctors till my GP suggested I get sputum and chest X-ray done again. I was referred to the governmental TB hospital and started on DOT treatment.
In 2005, I started experiencing stomach problems like pain, vomiting, and chronic diarrhea. Again there were no answers. I finally consulted a senior Chest Physician (who works for a Govt. hospital) privately who did an ultrasound of the abdomen and found TB. Diagnosis had taken an entire year and a half.

Please describe your experience of managing your condition.

It was challenging for me because I had to face many difficulties during the second time due to constant abdominal problems, no relief of symptoms and late diagnosis. I was focused on adherence to my medications and that was very helpful.

What is your present condition?

At present I am fine, and get a sputum and chest X-ray done every six months. I also get a CD4 count done twice a year and a viral load test once a year.

Do you have a family history of your condition?

My mom had TB when she was young, but is doing well since. My husband suffered from TB of the lungs long time ago and then TB of the brain and spine which eventually took his life in 2005. My younger son died when he was only a toddler at the age of 2.5 years due to delayed diagnosis of TB in his kidney. We went through dozens of pediatricians at the time; he barely got through one month of treatment. I have an older son who is fit and well, he is now 22 years old. My father and husband’s side of the family have no history of TB.

Have you had any related complications from your primary condition?

My CD4 count did drop dramatically during my second bout of TB to 30. I also lost a lot of weight and was down to 33 kilos. Both these things were very concerning and so my doctor then started me on HIV treatment.

What was your course of treatment?

I had DOTS which was category 1 for 6 months. The second time I was on AKT-2 (rifamycin group of antibiotics), which also included injectable treatment for around two months in the beginning. The entire course lasted for 11 months.

Were there any side-effects of the medicines? If yes, how do you manage them?

Yes, in the initial first month there was dizziness, vomiting and low esteem. I managed it by hiring home based care as advised by my doctor. For my vomiting, I would take lemon tea. For dizziness, I was advised proper sleep because my HIV treatment was also started along with TB treatment. The antibiotic injections were the most painful; my leg would hurt for days after each one.
For the first 2 and half months, I was restricted to a liquid diet which I had to take every 2 hours. In addition, my mother suggested I go on a high protein diet, which was turned out to be extremely helpful for my recovery. My doctor also recommended eating 2-4 boiled eggs daily along with lentils and dal.

What kind of specialists do you consult and how often?

I consulted with the doctors from the TB hospital and also in private practice.

What changes have you made to your lifestyle because of your condition?

I learnt preventive measures for TB and also what kind of precautions one needs to take while taking care of other persons infected with TB.

Have you tried complementary medicine or therapies, like homeopathy or yoga? If yes, did it help?

Yes, I include yoga in my daily routine; it has helped a lot to make my lungs strong and to be healthy.

How did you mentally/emotionally cope with your condition?

I had faced a lot of stigma due to TB while having lots of challenges with my health. My family and I faced stigma due to HIV as well, and were disowned by my in-laws. I coped with a strong will to live and have always maintained a positive attitude towards my family situation. It gave me a lot of learning about to how to identify real support amongst your family members and friends.

Did you see a counselor for support? Talk about the support from family and friends. 

I did not find any specific counselor, I got counseling from my Chest Physician itself the second time around, who truly guided me through it all.

My parents were and continue to be my biggest supporters through it all.

It was not so easy to tell my friends, only two of my friends knew about my TB infection.

What is your advice to TB patients and caregivers?

I advise people who are at higher risk such as people who live in crowded areas or slums, people who commute daily by local trains/buses, factory/mill workers etc. to get routine TB screening! Also one must see a doctor immediately for TB testing, if they have any one out of the following four symptoms of weight loss, night fever, night sweats or low appetite. Financial support becomes essential because the patient needs proper nutrition and care. Don’t let your self-esteem go down; keep up the positive attitude towards your own health and life.

What keeps you awake at night?

There is huge requirement for proper assistance and support for all those people who are losing their family and friends due to TB. I realized this more so last year when I attended a regional workshop conducted by USAID and REACH. I met numerous survivors there and recognized the need to form a coalition for community support and guidance. In April, 2017 a few of us founded the “Touch by TB” group, which is a national coalition of TB survivors pan India. We have started regular trainings on treatment literacy, preventive methods, care etc. for TB patients and their care providers. We provide educational information and awareness via lectures etc. We have noticed that TB is growing concern in the urban cities which are crowded and vulnerable, while the rural populations continue to have their own challenges due to lack of awareness and compliance with treatment. I hope to do all that I can so less people can suffer from this dreaded disease.