Seeking Urgent Help and Guidance for My Brother

My younger brother, Nikunj, who is 18 years old, has been battling cystic fibrosis (CF) since he was diagnosed at the age of 9. His genetic mutation is R560S. Over the years, his treatment regimen has evolved significantly. Currently, it includes:

Chest physiotherapy with the help of Hillrom CF Vest (1-2 times daily), involving nebulization with 3% saline solution, Formoterol and Budesonide, Dornase Alfa, and Glycopyrrolate.

Digestive support: Pancreatin and multivitamins for food digestion, absorption, and supplementation.

On-and-off medications: Acetylcysteine, Prednisolone, Ambroxol, and Acebrophylline.

Unfortunately, the past two years have been incredibly challenging as his health has been deteriorating rapidly. He frequently suffers from severe lung infections, such as Pseudomonas and Staphylococcal pneumonia, treated with Meropenem and Teicoplanin antibiotics.

In November 2024, he was hospitalized due to low oxygen levels despite no signs of lung infection in sputum cultures or other test reports. His pulmonary function test revealed an alarming spirometry score of just 17%. Last week, he was hospitalized again for CO2 retention in his lungs. He is now on constant oxygen support at 3-4 L/min and requires BiPAP support during sleep.

Nikunj is experiencing significant breathlessness, headaches, backaches, fatigue, loss of appetite, and struggles with even basic activities like eating and walking a few steps. His physical activity is almost nonexistent.

We are now seriously considering a lung transplant and are trying to understand the risks, success rates, procedure details, and potential complications.

Living in Delhi, India, with its severely poor air quality, could be the underlying reason that is worsening his condition. We want to ensure he receives the best possible treatment and care, even if that means relocating to a different city or country. We are currently researching options for better treatment facilities and the legal procedures required for relocation, if feasible.

I’m reaching out to this forum for help. Any advice, guidance, or information on treatment options, lung transplant procedures, or relocation possibilities would mean the world to Nikunj and our family. Thank you for your support.