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Just a Day in My Life Struggling Physically and Mentally

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🥹

  1. Thank you for joining us. I'm grateful you took the time to share more about yourself and your CF journey, which sounds far from easy. My heart goes out to you that you've had to experience all of this, and I'm sure it's so hard to think about things in the future, such as completing college. I am hoping other community members will chime in and be able to share experiences with you, but in the meantime, I am linking an article here (https://cystic-fibrosis.com/living/mind-and-body) that I encourage you to take some time to read. If you haven't considered it, it may be worth contacting a therapist or counselor that you could speak with and share your concerns and fears. I hope this person will be able to give you the tools and resources to support you best as you not only move through the health concerns you experience but also to help you as you look to the future, make a plan of action, and figure out what's next. I cannot stress this enough: please know our community is here for you and will help support you as much as possible. Don't hesitate to reach out. Please keep us posted. Sending you strength and support. -Beth (Team Member)

    1. Thank you so much for reaching out😊 I do have a therapist whom I seek counselling from when I am going through some major event. But sometimes I do feel that only a fellow human who is suffering from the same or at least similar things as me when it comes to health might understand the gravity of the situation so I'm grateful for the existence of this community. Outside the CF community I'm grateful I have a few close friends who treat me like I'm a normal person (I'd very much not want to be pitied) but look out for me whenever I'm struggling.

      1. I'm so glad to hear you have a close circle of friends who are always looking out for you—that's huge! I understand wanting to have others who experience the same things, making it feel a little less foreign and scary. What you live with day to day is unlike so many, so making a connection with someone who also lives it would definitely be comforting. What do you and your friends like to do in your free time? Sending positive thoughts and vibes your way! -Beth (Team Member)

    2. My friends and I just go for a walk around the neighborhood if I'm able to or just sit somewhere on a bench outside and talk about anything and everything under the sun since we have busy schedules, our meet ups are pretty impromptu. Occassionally we do plan some outing or activity whenever we are free. But quality time is everything for us, doesn't matter how we spend it

      1. I love this!! Impromptu friend dates are the best; they always fill my heart. You and your friends are fortunate to have each other. Again, thank you for taking the time to share this with me. I've enjoyed learning more about you and your journey with CF. I hope you continue to keep us posted and share with us. Sending you hugs and positive vibes! -Beth (Team Member)

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