u/Dakr_pheonix

I'm the 19F that keeps ranting here recently about my hospital stay. After procedure to avoid pneumothorax they put me on high flow oxygen, yesterday they tried to mobalise me since I was on complete bedrest, but they took of the oxygen for wat 1 minute too long and it fell to 29. After that when they put me back on oxygen I had to put full pressure on my own to breath despite high flow oxygen being on 60LPm I think. I knew I wasn't overthinking when I skipped that 1 day of trikafta after 1 month of using it, everything fell apart after that day. Suddenly needing my oxygen again after skipping 1 day. Then yesterday they put me on another type of oxygen that uses a mask idk wat it's called but I can't speak, eat or do anything while I'm at it, but u can sleep for a bit. Which was the problem that I couldn't sleep bcuz of me needing to put full pressure on my breathing. Idk wats gonna happen next maybe finally lung transplant but idk wat my Dr will decide, but it's painful mentally and physically. This isn't even the USA, eu or any other high place that I can get accommodations for CF.

Idk maybe I'm overthinking cuz I'm already not doing well mentally. But 1 month and 2 weeks ago I started trikafta, it is my last hope for becoming better bcuz how bad my health got and I started needing oxygen bcuz of how bad it got. After I started trikafta I got off oxygen. Which I did not think was possible bcuz I wasn't sure I would be able to get trikafta in the first place. I'm grateful for it.

However 1 month into trikafta and the nausea was bad bad. Like rlly bad. I could barely eat anything at all. So I decided to skip just 1 day of trikafta just 1 day and see if it helps (idk wat I was expecting). I continued normal after that, now it's been about a week since I skipped for 1 day. I think....I think the effect of trikafta decreased. I feel my breathing went back to how it was before. idk idk ok ik maybe I'm overthinking, it could very well be something else.

I will be talking to my Dr I have an appointment in a few weeks. 😭😭😭😭😭😭😭😭😭😭😭😭 Gng Ami cooked?

This is just a rant I'm not rlly complaining. I started trikafta more then a week ago and i knew there was gonna be a period of time where it feels worse but damn man. Before trikafta I was not well at all and infection was high and all and one thing in particular that annoyed out of everything was my nausea. Idk why but I felt constant nausea so I've eaten a lot less in the past month and when I try to eat a bit more force myself maybe, I end up throwing up. Now this is also bcuz I'm not the one who cooks in the house especially recently I haven't been cooking, it's my mother, and I love her but I don't like a lot of the food that's cooked mainly bcuz of texture of food. I don't wanna whine and complain too much to her she has a house to look after, 5 other children. However wats worse is after 2 days of taking trikafta I noticed my nausea got worse I could not even stand food I had previously loved. The smell, the taste and sometimes the texture just I cannot stand it. My mom did tell me that ever since I was a child I had a bad appetite, I even remember my dietitians from when I was younger being concerned and angry that I'm not eating well (I was just very picky). Food is something I genuinely enjoyed, it was as if no matter how bad things got if I had the food I loved I could go thru it, and now it breaks my heart so bad I can't even eat food idk wats wrong with me. Especially since with trikafta, my Dr said I should eat heavy meals. Im already underweight and with all this idek man. Sometimes I wish I could burst into tears and someone would comfort me, maybe spoil me.

I am grateful that I can access medicine and ik it's there to help me but I'm so tired :(

I will soon be starting trikafta but I have few concerns bcuz of the tough situation I am in. My CF Dr approved of me taking trikafta after checking my LFT. If trikafta doesn't work and you have to discontinue, how does s person know, my Dr explain to me wat I should be expecting when taking trikafta but I want to know from others experience if after starting trikafta, it doesn't work, wat do u experience.

I'm sorry it's just my body has been in such shi situation for a while everything is a challenge even tho these days I'm doing nothing, Im scared of dealing with more issues, pain and fatigue.

I'm 5' 1 F, really struggling to gain weight. I'm down to 37 kg and it's getting exhausting to try to gain weight. Before my issue was that I was vomiting a lot due to acid reflux for like the past 3 years so that made weight gain difficult. Started taking Omeprazole for that and it worked well, but my health has declined a lot in the past year and it's hard to cook a lot of food(have a lot siblings so they eat the food too so I can't cook in bulk and save it) and in general doing any physical activity is difficult. I was wondering if there's any ,at all, advice that can help.

Dream weight is like 47 kg 😭 and just fyi I'm not on any gene modulator and don't have access to it

I'm 19 and recently got on oxygen supply, in January this year I was doing fine walking around and doing house work was not too much but past few weeks suddenly it became worse, and it turns out my oxygen saturation was low even tho it had never been before. Idk how to prevent my situation from getting worse, Dr appointed me some oral antibiotics as of now. Are there specific exercises and supplements to prevent this from getting worse. I've been able to be independent as my friends and siblings my whole life uptil now despite my CF being on the bad side since birth. And I have no idea wat to do now. I also don't have access to CF modulator and dont qualify for one.