r/CysticFibrosis

I'm a bit late with my update. Thanks to a shortage on the type of Botox i.get for migraines I've been having a rough time. 🥴

Ozempic is still going well. I'm down to 158 pounds from 175 (I'm 5'2"l. My BMI has gone from 32 to 28. I've started taking in the waists of pants and shorts. Some of my larger tops are looking like huge sacks and have gone to the alteration pile or reserved for swim suit covers.

Side effects aren't too bad. I've worked my way up to .75 mg a week. I'm increasing slower than a lot of people do so I don't get super nauseous and constipated. I tend to be pretty sensitive to medications and require low doses. I still take miralax for the 2 days after my dose.

Around December 2025 I got extremely ill and had to go to the ICU. I went from around 70% fev1 to the low 20s and now I struggle to get to the 40s.

When my initial decline happened I assumed it was because I neglected my treatments. I always had chronic psuedomonas that would usually flare up every 3 months or sometimes not for an entire year. Ever since I got ill in December I just can't seem to knock it down for longer than a month.

I follow my treatments now, but every month I find myself back in the hospital with low sats and a bad fev1, I don't know what to do. I recover fast with IV antibiotics and I'm usually back to 40% by the end of my admission but then I usually find myself breathless after a few weeks. Nothing just seems to stick.

Has anyone else been through this? Has anyone been able to solve this or is this gonna be my new normal?

CF tends to have quite a few comorbidities, so I feel like I can’t be alone in this

Does anyone know if there’s anything that can temporarily stop or reduce coughing I struggle so much mentally every time I go out in public because as soon as I start coughing people stare at me or move away like they’re disgusted or afraid of me and honestly that’s one of the hardest parts of living with cystic fibrosis I’ve started avoiding public places and spend most of my time alone at home because it’s affected my mental health so much Is anyone else dealing with this and if so how do you cope with it

Hey friends Kyle here 👋 Hope everyone is doing well in this heat. It's a hot one.

My question for today is..

What is your favorite way to beat the heat? Lmk!!

Mine? Swimming in a pool and anything to do with water.

I just need to vent today and wanted to talk about something other than what’s eating at me, but bothers me all the same.

I was gonna do the CF walk this year cause I did it as a kid years ago and thought it might be helpful to do something nice for somebody other than myself, but I couldn’t do it because In Ontario they only host the event at a zoo. I find zoos and what they do deplorable. keeping an animal prisoner until it dies for the crime of being beautiful or interesting is beyond fucked. I’ve been somebody’s lab rat and animal before and I know what it robs you of. It’s not a thing you can take back or pretend didn’t happen, once it steals your sense of self and existence. Sorry for randomly ranting I just needed to know somebody heard it.

Anybody who’s been judged or rejected for having cf, how did it sit with you and affect how you navigated future relationships?

Just wondering whether or not there might be a link between CF and earlier onset of perimenopause. I appear to be well into 6 months of it at 37, and I feel like a lot of other CF women are the same.

But my friendship group are 45+ with very few symptoms. And the genetic link is also not there in my family for early menopause.

Im kind of wondering whether it’s a stress or drug thing?

I think I honestly just need someone to hear me out here.

I constantly feel like even though medicine has advanced this far and people with cf are doing better and living longer, it's not going to be the same with me. I've been on alfytrek for a while, it's definitely helping me out, I mean I don't even need to do my nebulizers anymore. I'm just constantly worried that I'm not going to be healthy for much longer, and my plans in life are going to be cut short. I guess I just can't feel that what I'm doing is worth it anymore.

My CF doctor kind of made me feel like the problems I do have are just in my head, it's such a pain to get referrals to the doctors I urgently need. When it comes to psych stuff, my doctor and I can't figure out what's wrong with me. I've been on 3 different mood medications in the last year and a half, and not a single one has helped at all. Im located in a state that supposedly has some of the best care for people with CF and yet I feel so neglected sometimes. Therapy doesn't work for me, it doesn't make me feel better, I've tried it.

I'm frequently paranoid that anything good going on in my life is fully temporary and is going to away soon.

I don't know what to do anymore. I don't know if maybe I just need a community to talk to or something but I clearly need something if that makes sense.

I'm sorry that this is formatted terribly, I'm incredibly tired and I just needed to write this all down so I wouldn't have another panic attack. ❤️

My unborn child more than likely has CF. Both his father and I were carriers of the 508del gene and didn’t know. The baby is already showing signs of bowel issues in utero including meconium ileas.

Neither I or his father have any familial history or CF. I don’t even know what I’m looking for here. I’m just scared, not for myself but for the baby.

I am looking to get onto trikafta myself for the remainder of the pregnancy. I just wish we knew about it sooner and could’ve intervened sooner or done something to save our baby from having to go through this. I don’t mean to seem insensitive if that seems offensive. I’m just at a loss. I just want my baby to be okay.

I’m 26M and i am about to start on medication for bone fragility, I’m still in talks with the doctor on what to start with pill or IV. The pill is supposed to be taken once a week and the IV is supposed to be taken once a year.

Anyone with experience for both pill and IV, what worked best, what are the up and down sides. And if there is any other advice and information you can give I would really appreciate it🙂

19M Anyone know how to get treatments done it's really hard and a pain in my as# I have tried with lots of note apps to-do lists and videos with how to get tasks done but then I grow out of it and look for new stuff to try ..

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 have a background in biology and have the opportunity to go onto doing research and development (but ive taken a step back from biology). Idk how eager it'd be for me to want to 'cure' cystic fibrosis, I think i sound slightly delusional. But i think about it a lot, research in this field has been very fruitful and im motivated to try. However ive never even come across CF in my degree, I actually dont know much about it and im only now learning. Has anyone here contributed to CF research?

Has someone else has had two mutations from newborn screening and their sweat test was in the normal levels? My newborn tested positive for two mutations one common one and one super rare . We did the sweat test and came back 16 and 19 for him . Waiting for his next appointment with the cf clinic to see where we go from here but i was wondering if someone else has had the same experience TIA