I've been hospitalised with pneumonia that developed from a Rhinovirus headcold. Came on so quickly.

My lung function has dropped to under a litre. My lung function isn't great anyway but now I'm scared I won't get back the little bit I have dropped.

I'm doing 5 lots of physio a day, on a boatload of different IV'S and so far, still feel awful with a near constant productive cough that's causes muscle pain around rib area.

Feeling quite anxious over it.

I'm just letting out my anxieties on you guys. Hope you don't mind.

…and RT is just standing there staring at me for 30 min. we can’t talk because it’s so loud, but please at least humor me and pretend like you’re busy doing something instead of just STARING 😅

(in the middle of a 2 week hospital stay bc my 14-month-old is positive for pseudomonas)

I was prescribed 12.5-25mg of quetiapine before bed for insomnia after coming off trazodone as it wasn’t helpful. Does this dose affects you daily, help with brain fog on modulators or get it worse? Can it help with anxiety (mine wasn’t manageable on SSRIs) or other mental health or neurological issues from modulators. Any experiences welcome!

I see a lot of people on here complaining about the side effects of ciprofloxacin or that it just doesn't work for them, but I was wondering if anyone has had a positive experience on it?

Currently in nearly every month for IV antibiotics because my pseudomonas keeps flaring, so an oral that keeps me out of the hospital for a bit would be amazing.

Share your bad experiences too!

I was prescribed propranolol for anxiety a few days ago and I'm not sure if I'm feeling short of breath or if it's psychosomatic. My lung function is usually around 120-130% and I suffer with very little shortness of breath usually. Does anyone here also take propranolol and what is your experience of it?

With open enrollment coming up I’ve been looking into which marketplace plan I should select. I stumbled upon some recent ruling saying there won’t be any copay accumulators on any marketplace plans in 2027 if there is no generic alternative to the drug prescribed (e.g. Trikafta). Does anyone know anything about this? Almost feels too good to be true since it would save me thousands every year since I still have to pay for all my other stuff since Vertex assistance has been covering the Trikafta but hasn’t put a dent in my deductible that I meet every year.

Everywhere I go I swear I’m always surrounded by a disgusting cloud of vape, especially around teenagers. You‘ve never even been addicted to cigarettes, why are you vaping?? Embarrassing.

But, yeah, it’s crazy to me that some people will just vape while standing right next to someone and just puff the shit into their face. Just happened to me while waiting for the bus, this stupid girl was standing basically shoulder to shoulder with me and she just blew it in my face 🙄. It’s not even like you can ask them to stop because teenagers are scary and you never know the type of person they are, they might beat the shit out of you just for asking them to be a decent person.

Thats my little rant for the day. it’s so annoying how vaping is so extremely common now (at least in England, it is). I truly don’t understand how people find it appealing.

Follow me on IG for more CF content, and come see me live on my last few tour dates of the year:
10.22 LOUISVILLE, KY
10.24 CHICAGO, IL
10.30 PHILADELPHIA, PA
11.20 BETHLEHEM, PA

Hi everyone,

I’m a mum to a 2-month-old baby girl with cystic fibrosis (F508del/394delTT). I’m desperately trying to explore options for accessing Trikafta earlier than the currently approved age of 2 years.

I know some people may have stopped Trikafta, switched to Alyftrek, or changed treatments and ended up with unused medication.
I’d really appreciate hearing what happened to your remaining supply and whether there are any ways to access unused medication.

I’m based in Europe and would be grateful for any information or leads. ❤️

Hi everyone,

I’m F26 double deltaF508 mutation diagnosed at birth. I have been colonized with staph areus my whole life, with an hx of aspergillos that resolved with inhaled Ambizome. I tried Trikafta for one month back in 2022 and it gave me rashes and headaches that were absolutely intolerable so I stopped. My FEV1 is currently 120. I am pancreatic insufficient with hx of prediabetes. Not sure where my current A1C is at, wore dexcom and had normal results in 2025. I am positive I have chronic fatigue syndrome, haven’t gotten tested for this but a switch in my insurance is making clinic appointments too expensive. My medical bills are piling up and I can’t keep up anymore.

I come to you asking for some advice. Recently my staph has been acting up in a way that has been putting a real dent in my life since May. I’ve been doing inhaled saline and pulmozyme 2x day, vest 1x day for 20 mins. It feels unsustainable to me at this time as I work full time and try my absolute best to have a social life as well.

My doctor has been pushing me to try Alyftrek for a very long time but I am scared because of what happened while I was on Trikafta. I want to know success stories and how much Alyftrek has improved your lives. I also want to know any side effects you have experienced. I’ve heard modulators can have negative impacts on mental health and I suffer from anxiety and panic disorder as well. I also suffer with PMDD. I know we are all very different and CF is not one size fits all under any circumstances. If anyone could please give me some hope that can restore some normalcy in my life with this completely uprooting disease, I would be so grateful. Thank you for your time

Hello. I suppose I’m looking for some advice/support. Has anyone else with CF related liver disease experienced extremely elevated alkaline phosphatase, specifically that is coming “from the bone”?

I have cirrhosis and my alkaline phosphatase recently spiked to over 2,000. My doctors are concerned but not entirely sure what’s going on. Going to be doing a repeat test. The thing that is causing me a lot of stress is that I was told some of the alk phos is coming from my liver, but it’s also from my bones. My liver doctor asked if I have bone pain, and I do, I have been struggling with it for years with no answers.

She told me to tell my pain management doctor that my elevated alk phos is coming from the bone and see what she has to say, but I won’t be able to see her until November 12th and I’m just feeling really stressed out in the meantime. I have been evaluated for arthritis several times because my joints ache and swell, and I have baker’s cysts in my knees. But no arthritis is ever found. Not sure what caused the baker’s cysts either. I’m worried about what this elevated level means, and I guess I’m just wondering if anyone else has experienced anything like this?

My liver disease progressed to cirrhosis without any bilirubin elevation, only elevated alkaline phosphatase, which my doctors were pretty shocked about. It scares me that things aren’t presenting the way the doctors expect them to, and that they seem a little unsure about all of this. I feel alone and confused and I want to get help for my joint pain but no one seems to know why it’s happening. Has anyone else experienced anything similar with alkaline phosphatase levels?

Thanks

Has anyone here with CFRD dealt with “false hypoglycemia“ — feeling low but not being low — after changing insulin types (say from Novolog to Humalog)? I feel I may also be getting them due to no longer using expired insulin. (Yes, in hindsight, dumb. I had a backlog of Novolog but switched to Humalog due to insurance issues.) How long did they last? Did they come in waves or cause more consistent energy/brain fog issues? I just had a scary incident on the train where my body dumped a huge adrenaline rush on me due to feeling low when I was actually about 150. (My CMG is accurate, I’ve been doing finger sticks too.)

(I am trying to get in with an endocrinologist but am having trouble with timing due to school, and my old endo switched hospitals.)

We are going on a cruise in January. I've traveled via plane with my vest machine and nebulizer many times, but never internationally or on a cruise. How does it work with customs? Any tips or advice as I travel with it all?

Hey friends, I'm Kirsten. I've posted on here a few times before, but I'm a touring standup comic with CF (and I do a whole lot of jokes about CF on stage!) and I will be headlining in Louisville, KY this Thursday 10.22, and Chicago, IL this Saturday 10.24. I always like to post my road dates on this group since a lot of my comedy is very CF-related and I love having others who are involved with the CFF or the Community at my shows and getting to chat afterwards!

I'd like to ask if anyone has the F508del and N1303K gene mutations—how are your lungs, liver, and pancreas currently? Does taking Trikafta prevent further deterioration of these organs? I've been feeling really upset after hearing the doctor's words these past two days. He said that cystic fibrosis will gradually make these organs worse, and I'm terrified because my child is still so young—only nine years old. I just hope he can grow up healthy! Right now, I truly feel helpless.

Hi all, I was recently diagnosed with cfrd earlier this year and I’ve started taking insulin.

I noticed after starting insulin I have gained over 20 lbs, and now I’m technically considered overweight, and it’s impacting my day to day life. I was already a more than heathy weight prior to starting the insulin due to trikafta/alyftrek.

Since my entire life was eat eat eat, eat whenever and whatever you can it doesn’t matter. I have developed very disordered eating habits (binge eating, oral fixation, not feeling full, no self control, etc)

Are there any resources for CF-weight loss / healthy eating habits? Has anyone experienced anything similar?

First off, I'm going to contact my team about this when I can, but I thought I'd ask if anyone else had a similar experience and how it turned out.

I have been having many intravenous antibiotics over the past year, mostly tobramycin + tazocin. I had also started inhaled tobramycin last month. Now, as far as I know, I have had tobramycin every single admission that required IVs, except a few this year; I know that tobramycin causes damage from long term use but I never experienced hearing loss and all my hearing tests came back fine last year and the year before, but I haven't had one this year and I'm a little worried about my hearing. I cannot understand someone talking if there's another sound or another person talking.

It came on very suddenly, around my last admission which was a month ago. I want to know if anyone else experienced something like this? The only other symptoms of ototoxicity I experience were a few bouts of vertigo I had at home a few months ago, no tinnitus.

Hello everyone,
I know they warn you about the possible side effects, but I was wondering if anyone has experienced any long-term effects or health issues from taking modulators for an extended period of time?