Six years living with bronchiectasis

Summary

In this heartfelt video, Pramana shares their six-year journey with bronchiectasis, detailing the progression from early symptoms such as frequent ear infections and chronic cough to a life-changing diagnosis. They describe the rollercoaster of hospitalizations, the struggle with misdiagnoses, and the eventual confirmation of TB. Despite setbacks, including respiratory failure and a worsening condition, Pramana remains hopeful, sharing their experience with resilience. This inspiring video aims to raise awareness about bronchiectasis while offering personal insight into managing the condition over time.

Takeaways

• 😀 Pramana has been living with bronchiectasis for six years, since being diagnosed in 2014.
• 🩺 He first experienced symptoms like constant ear infections during childhood, which eventually resolved during high school.
• 🤧 Initially, his symptoms included daily coughing up of sputum, without any signs of weight loss or shortness of breath.
• 💉 A visit to an internist led to the initial belief that it was an allergy, but the cough lasted for a year and later subsided after a dengue fever diagnosis.
• 💔 In 2014, Pramana started coughing up blood, leading to frequent hospitalizations and a confirmed diagnosis of bronchiectasis through a chest X-ray and CT scan.
• 🔬 He underwent bronchoscopy in Jakarta, which initially suggested TB, but further tests ruled it out as a cause of his condition.
• 💊 After a trial of TB medications without improvement, Pramana continued to struggle with recurring lung infections and hemoptysis every few months.
• 😷 By the end of 2015, he developed pleural effusion and required a chest tube for drainage, but tests came back negative for TB.
• 💪 In 2016, Pramana tested positive for TB, which led to a longer course of TB medication (Category II) that helped improve his condition.
• 💨 From 2017 to 2018, Pramana experienced relative stability in his health, resuming normal university activities. However, in 2019, his condition worsened, and he experienced type 1 respiratory failure.
• 🩸 By 2020, Pramana experienced worsening shortness of breath even without physical exertion, which marked a significant decline in his health over time.

Q & A

What is bronchiectasis, and how was it diagnosed for the speaker?

Bronchiectasis is a condition where the airways in the lungs become damaged and widened. The speaker was diagnosed in 2014 after experiencing chronic coughing and blood-streaked sputum. A chest X-ray and CT scan confirmed the diagnosis.

What symptoms did the speaker experience before being diagnosed with bronchiectasis?

Before the diagnosis, the speaker had a persistent cough and frequently coughed up sputum. Other symptoms like weight loss, chills, and shortness of breath were not present at that time.

What complications did the speaker face during their journey with bronchiectasis?

The speaker faced complications such as recurring lung infections, hemoptysis (coughing up blood), shortness of breath, pleural effusion, and respiratory failure. These complications required frequent hospitalizations and medical treatments.

How did the speaker's condition change over time?

Initially, the speaker did not experience significant shortness of breath. However, over the years, the condition worsened, leading to difficulty with physical activity, respiratory failure, and the need for supplemental oxygen.

What treatments did the speaker receive for tuberculosis (TB), and were they effective?

The speaker was initially treated for TB with Category I medication (six months) and later with Category II medication (nine months) after a positive TB test in 2016. The treatments were effective in improving their condition, though they did not resolve the underlying bronchiectasis.

What caused the speaker to experience a type 1 respiratory failure?

In 2019, the speaker's symptoms worsened, with darker sputum and decreased oxygen saturation. They later developed type 1 respiratory failure, likely due to lung infections and exacerbations of bronchiectasis, which required hospitalization and supplemental oxygen.

How did the speaker manage their shortness of breath throughout the years?

The speaker noticed increasing shortness of breath, particularly with physical exertion. By 2020, they began experiencing shortness of breath even without strenuous activity. They had to control their breathing and adapt to the changes in their body.

What diagnostic tests did the speaker undergo during their journey?

The speaker underwent several diagnostic tests, including chest X-rays, CT scans, sputum tests, bronchoscopy, and GenXpert TB testing, to monitor their condition and confirm the diagnosis of bronchiectasis and later TB infections.

What impact did bronchiectasis have on the speaker's daily life?

Bronchiectasis significantly affected the speaker's daily life, particularly with physical activity. The speaker was unable to run or climb stairs without feeling short of breath, and their quality of life decreased over time as their condition worsened.

What advice or information does the speaker want to share with others living with bronchiectasis?

The speaker hopes their story can help others better understand bronchiectasis, its symptoms, and the challenges it presents. They emphasize the importance of proper medical treatment and managing breathing to live with the condition.