Post-tuberculosis lung disease: A patient's story

Durga was devastated last year when she learned that she had developed a tuberculosis (TB) infection for the third time.

Now, almost four months after completing another course of anti-TB treatment, the 28-year-old was still short of breath when we spoke.

"The doctors say I am cured, but I don't feel like I am the same person anymore," said Durga, who requested we protect her identity by not using her full name.

Beating a tuberculosis infection is only the first milestone in a long journey of recovery for many patients.

Emerging data shows that TB survivors often go on to develop long-term breathing difficulties — a result of lasting damage that the respiratory disease does to the lungs.

Even household tasks leave Durga breathless: "When I lie down, my breathing gets wheezy. I am unable to feel hunger and haven't regained the weight I lost during the infection."

How common is tuberculosis globally?

Every year, more than 10 million people get tuberculosis — that makes it the second most common cause of death in the world. TB infection rates rose to a 30-year high at the end of 2023.  

A majority of TB cases are reported in India, China and Indonesia. India alone accounts for more than a quarter of the global TB health burden.

A large number of TB patients continue to feel its effects long after their treatment is completed.

The effects can range from minor breathing difficulties to a patient developing Chronic Obstructive Pulmonary Disorder, a persistent lung condition, also known as emphysema or chronic bronchitis.

How does TB affect the lungs?

A TB infection is caused by a bacteria, Mycobacterium tuberculosis.

"The bacteria first infects the airway. If the infection is severe, it moves into the lungs," said Vijil Rahulan, a pulmonologist based in India. 

Shortly after the initial infection, the human immune system attacks the bacteria, which causes inflammation.

Sometimes the reaction is so severe that it damages parts of the lungs, leaving cavities which can fill with fluids or dead cells.

The inflammation can also trigger a thickening of the walls of some lung cells, which is what causes poor breathing.

"Medically, the end point of the treatment is when the patient's sputum tests negative for tuberculosis bacteria. It is not defined by the disappearance of symptoms. This seems to be the gap in the system," said Ramya Ananthakrishnan, director of REACH, a non-profit organization in India that aims to eliminate tuberculosis in local communities.

Post-TB lung damage can leave patients with lasting chest pain, coughs, shortness of breath, and a reduced capacity to do sport and other exercise, or even basic, everyday activities and errands.

Poor lung function can deprive the body of vital oxygen, leading to fatigue in other organs and poor health overall.

The rise of drug-resistant TB is affecting treatment

As tuberculosis is caused by a bacteria, it can be treated with antibiotics. But antibiotics are losing their potency against many bacterial infections, and as Durga's case shows, it is important that patients complete the course of tablets they are prescribed. 

Durga first developed TB when she was 22 years old. "I was asked to take four tablets each day. I took the prescribed tablets for two months and felt better. So I discontinued the treatment without finishing the full course," she said.

Two years later, she fell ill with TB again. 

"I was diagnosed with drug-resistant TB. The doctors were baffled by how rapidly it was damaging my lungs. This time I had to take nine tablets a day," Durga said. 

Ananthakrishnan said Durga's case was common among TB patients.

"But I'm having difficulty understanding how badly new drug-resistant strains of TB are affected the lungs," said Ananthakrishnan. "The way different strains of tuberculosis affect the lungs has to be studied to mitigate the long-term impact."

Having recently lost a family member to TB, Durga said she would now like to see government-run health programs that provide long-term support and monitoring of symptoms for patients.

Edited by: Zulfikar Abbany

Sources

The WHO Global Tuberculosis Report 2023 (World Health Organization, 2023): https://www.who.int/teams/global-tuberculosis-programme/tb-reports/global-tuberculosis-report-2023

Tuberculosis and lung damage: from epidemiology to pathophysiology, published in European Respiratory Review by Shruthi Ravimohan, Hardy Kornfeld, Drew Weissman, Gregory P. Bisson (2018): https://err.ersjournals.com/content/27/147/170077