Hi, I joined this forum last year but until now I don't think I have posted anything about myself. I have talked to a few people here but it's been months.
*About me*
I'm a 21 yr old living in India, a sophomore in med school. I was diagnosed at birth but due to the lack of awareness of CF in India the only treatment I received was enzymes & dietary advice as well as precautions to keep for my lungs. I spent 13 years of my life without requiring any treatments like nebulization, postural drainage, inhalers or any such thing, without any infections, hospitalisations (after being in the NICU when I was born). I was an active kid simply unaware of the fact that I had CF. However life took a turn for me when I went undiagnosed with diabetes for almost 6 months as none of my treating doctors and my parents had any idea that CFRD existed. I was diagnosed by AIIMS (in April 2016), Delhi's CF clinic (first time we heard about a CF clinic in India). I was also diagnosed with ABPA, something I picked up while I was on a trek (surrounded by dry soil during winters and had low immunity thanks to uncontrolled DM). Thereafter a month later I suffered from an intestinal obstruction for which I spent 4 days in the ICU. Thankfully I recovered soon enough and was ready to start the new academic year, on a fresh and healthy note, back to feeling myself again! Life had been smooth and went on as if nothing happened, as if I didn't have CF until 2019 when I suffered from pneumonia and took antibiotics for a week, I had started neglecting my health thanks to preparing for medical entrance exam (NEET-UG).
In 2020, amidst the lockdown I suffered from another chest infection, this time - MRSA (sneaked up on me without me realising it). I was treated but turns out MRSA has colonised my lungs. Since then my condition has gradually deteriorated over time. Since 2022 I started Orkambi but had a string of viral infections, and my FEV1 of 45% went down to 30% and that modulator no longer suited me, since I started suffering from breathlessness progressing to the point that I could no longer walk as months passed. My CF doctor realised that Orkambi was the culprit (either that or I was told do a 2D ECHO). I was switched to Symkevi in Sept 2023 AND it worked!! My FEV1 went up to 35% in 6 months and I felt this was IT. I could go about enjoying outings with my college friends and had the strength to do med school, all until I caught some viral infection from a classmate (one of the most horrible ones I've ever had). I had extreme mucus production that would make my chest hurt every time I coughed with acute bronchitis setting in. Life hasn't been the same since then (March 2024) as I've been suffering from viral flus on and off. It looks like I have chronic Bronchitis and sinusitis that becomes acute every time I get a viral infection. Four times in just one year is definitely a record for me - 1st time ever suffering from such new symptoms that doesn't seem to end. I have become thoroughly reliant on bronchodilator solutions in nebulization form requiring administration 4-5x daily. It seems like Symkevi doesn't seem to help during acute bronchitis when I'm wheezing like hell and can't move a step without gasping for breath. I am unable to grapple with the changes and scared if I'll be able to complete college! Let alone have outings with friends. Going about my daily routine which includes attending classes daily has become daunting for me since a few months now and I hate it. Everything has to be planned according to my limitations now and I wish I had the body my younger self had. I'd really love to connect to someone over here🥹