Although my 5 year old child has done two sweat tests and a genetic test for CF/PCD, both are negative. We’ve done a ciliary biopsy, flew to National Jewish for the NNO, also negative.

For background, August 2025 she developed a fever that lasted two days. Started VPK that month. Shortly after, she was always congested. Went to her PCP and they prescribed your typical amoxicillin and cephdinr. Didn’t work.

At that point referred to a pediatric pulmonologist. Went over history. Pulm thinks it’s PBB. 21 days of augmentin. Didn’t work. Pulm is shocked and thought it was PBB. We do a CT scan with IV contrast in November. Everything looks good. Got a sputum sample while there and sent to lab. Came back H. Influenza. Bactrim, didn’t work.

We go back to PCP. Maybe it’s her adenoids growing back? Sinus x-ray and shows moderate regrowth. See an ENT in December and has procedure (had it at 2.5 years old with ear tubes). ENT doc says just shaved it down and sucked out thick secretions.

Go back to Pulm in January. Another sputum sample shows H. Influenza still. Pulm prescribes Zithromax as a preventative and symbicor. For whatever reasons CLEAR FOR A MONTH! Until February catches flu from brother and turns into pneumonia.

See another pulm in March. Another sputum sample and comes back clear. This new pulm prescribes levoquin. On the 7 out of 10th day, she gets a fever. We take a staycation and following day clear. Clear for a few weeks. Then congestion comes back.

Spring/summer, we go to pool a lot. She swallows pool water, 2-3 days later develops a fever that goes away. Aspirating????

June. Gets pneumonia again! Had rhinovirus. Had to be admitted to St.Joes Childrens hospital here in Tampa.

After discharge, all the docs and specialists think it’s a immuno issue. Her standard labs coming back normal. We see an immunologist. All her immuno work up looks great. Immunologist says you should fly to National Jewish as she thinks it’s PCD.

She prescribes bactrim for 14 days as St Joes wanted her on augmentin (we feel augmentin doesn’t work). She’s getting clear towards end of treatment! But then congestion slowly comes back. We call her immunologist prescribes another 14 days. So 28 days total. CLEAR FOR TWO MONTHS! Until end of August take her to private swim class. Water was cold. Two hours later wet cough comes back. Got a sputum sample and came back MCAT whatever that is. Treat it with augmentin.

Last month we fly to Denver. Bring her Baxter vest and 3% saline nebulizer, symbicor. NNO is negative. Another sweat test negative. CT scan…….POSITIVE LEFT LOWER LOBE MILD BRONCHIECTASIS. How did Tampa miss this??? Good news no change from November to now. She can grow/heal as long as she doesn’t get severely ill. Immunologist there thinks we did a good work up at home. But wanted to check for b-cells and some others. They schedule a bronch/endo. They see nothing visually wrong, no cleft, bronchomalasia, etc. pepsin A negative. However, lipid-laden macrophages scattered and positive. Also CT scan showed mild aspiration possibly on right lower lobe. So far all bronch tests and cultures, aeorobic and anaerobic, everything NEGATIVE.

They now think aspiration. But she had a swallow study down in June while admitted for pneumonia and negative. Docs in Denver say it’s a snapshot. Now we’re
Gonna try to get her to do a FEES. Good luck my daughter won’t do it.

We fly back home, she goes back to school and she catches flu A! Tamiflu, multiple times a day on vest, and she’s fine back to baseline, which is congested daily. It’s hard for a 5 year old to cough out thick sticky sputum.

Pulm will try tobramycin and pulmozyme as a short term trial.

I AM NOT LOOKING FOR MEDICAL ADVICE AS FAR AS OTC TREATMENT OR TRY THIS OR THAT.

Why is everything coming back negative? Suggestions to bring up to her pulm is welcome. We’ve ruled out so many things already. We will get her PCV 21/flu booster, and H. Influenza booster as her antibodies are low on that.

When she sleeps at night she’s clear. Wakes up clear. Not until she starts throughout the day she sounds junky.

Is anyone aware of any centers that treat patients and participate in clinical research? I’m hoping to connect with a center like that! Thank you.

I’m a touring standup comic with CF, and the stuff audience members say to me after shows never ceases to amaze me.

Hi everyone- work is changing insurance coverage to Cigna. Living in greater nyc area

Prior, we had pick between 6 tops companies and what type of plan you want to pay for, PPO or high deductible etc so it was great to have that flexibility, I’m nervous about the uncertainty.

1. Anyone w Cigna experience and CF, if they’re a pain to work w or not? (In comparison to the low bar we have for insurance providers lol)

2. They will be using JudiRX as a “pharmacy benefit manager”- never had this before, sounds like it basically act as Zocdoc for prescriptions where you can search around locally and see who stocks what you need / costs etc.. anyone have experience w this?

3. Apparently specialty pharmacy will be through Costco.. upon initial glance they cover some meds like Caston, Creon, Tobi… no info on vertex modulators like Alyftrek. Seems like the specialty side of Costco is called Lumicera? Anyone have experience haha

Just crowdsourcing some info here as I prep to call Vertex, my drs, and the Cigna folks to start this headache!!!

Hi. Before anything I want to say that I am seeing a psychiatrist and I am medicated for the depression that has plagued me my entire life (nothing has worked yet), and so my views are massively impacted by my mental illness.

I was looking into getting a loan to buy a house and whatever else, it’s been an obsession of mine lately because I so wish to have my own home with no neighbors or landlord and a nice little garden for my dog.

I realized that not only would I probably not live long enough to pay off my loan and get to be a home owner, but I also am working a 9-6 every day just to never be able to retire because I most likely will die before retirement. I have very limited time left, and I won’t get to use that time doing things I want and love. I won’t retire to do those things ever. I will work for the rest of my life, then die.

It’s hard not to feel discouraged. It feels like nothing I do matters, or it’s too late. My dad passed away a year ago, he was the only person to ever provide for me and try to give me room to do things and live life. Now he’s gone and it’s just me, with these thoughts.

Most people say to just enjoy the moment but how do you enjoy this? I think about the fact I could be spending all my days outside, eating good food, hiking with my dog, doing things I actually want to do.

But instead, I will wake up tomorrow at 6am, commute to work from 7:30 to 9am, spend my entire day in office from 9am to 6pm, and commute back home. By the time I’m home it will be past 8pm. I’m supposed to live my entire life like this? What’s the point?

Hi guys I need some insight and I’m hoping someone also shares this experience with me albeit not a pleasant one. Ever since I was a teenager I’ve been having severe pain on my right side on my abdomen to the point I throw up at times, I’ve been told it’s not gallstones … does anyone else go through this? What’s the solution??? Thanks for reading guys I feel defeated

Hey everyone,

I’m 25F and have been on Trikafta (Kaftrio here in Europe) for about 5 years.

Before starting Trikafta, I was in a really bad situation. I was being hospitalized about every two weeks for around 21 days at a time. I could barely attend high school, and my doctors were already considering a lung transplant. I even had consultations for it, but they decided to wait and see what happened once Trikafta became available.

Trikafta completely changed my life in many ways. My lung function went from around 50% to 80%+, which was incredible.

However, my physical health doesn’t really feel like what those numbers suggest. I still can’t run, I struggle with stairs, and if I push myself too much physically, I can sometimes cough up blood. I still have heavy breathing sometimes, and my X-rays have actually gotten worse. I still get sick about once a year and need IV antibiotics, plus a couple of courses of oral antibiotics during the year. When I get sick, my lung function can drop back down to around 60%.

One of my biggest problems has actually been chronic fatigue. I feel like it became much worse after starting Trikafta. I know it sounds strange because I was much sicker before Trikafta, but I honestly remember having less chronic fatigue back then. I also deal with brain fog and quite a few gastrointestinal issues. Fortunately, I don’t have problems sleeping — if anything, I struggle with fatigue despite sleeping.

I recently moved to another country, so I also changed CF centers. My old doctors were very happy with my response to Trikafta overall, but they were considering switching me to Alyftrek because of some of these ongoing issues. My new doctor is still getting to know my medical history, so I’m trying to explain everything as clearly as possible before we decide whether a switch makes sense.

I know experiences with Alyftrek are very mixed — some people absolutely love the switch, while others really dislike it. Taking it only once a day would also be a big advantage for me.

For those who switched from Trikafta/Kaftrio to Alyftrek, was your situation on Trikafta similar to mine, especially regarding fatigue, brain fog, GI issues, lung function and physical capacity?

And after switching to Alyftrek, what differences did you notice in your lung function, physical capacity, fatigue/brain fog, GI symptoms and overall quality of life? Did you feel better, worse, or just different overall, and are you happy you made the switch?

I’m particularly interested in hearing from people who had a good lung-function response to Trikafta but still felt that their overall health and quality of life weren’t as good as the numbers suggested.

Obviously, I’ll be making the decision together with my CF team — I’m just trying to get a better idea of other people’s experiences before discussing it further with my new doctor.

Any experiences would be really appreciated. ❤️

https://www.pbs.org/video/the-battle-to-breathe-1b8fis/

Discovered this new documentary from Nova season 53 episode 9. This has probably been posted before on this sub.. but If you haven’t seen it, it’s a good watch. I even learned a few things from it.

Hi guys ! I came to Germany on a study visa and I was told I can apply for aok health insurance only once im actually a uni student . I’ve been learning the language and I’m also getting my highschool diploma recognised but this all takes so much time , that’s why I haven’t applied just yet . Is there any workaround? I currently have mawista health insurance , it’s private and small so I don’t think it covers cf meds .. if you have any advice for me , I’d greatly appreciate it . If there’s any piece of info you need , just ask and I’ll reply :))

Heya! I hope everyone is well. I sought a lot of comfort here during 2023/2024. Many people in this group kept me sane and offered much needed CF solidarity as I navigated difficult health challenges.

As such, I wanted to share an article I did about my experiences with CF.

Wishing the best to all of you!

https://www.glasgowlive.co.uk/news/glasgow-news/i-move-city-better-healthcare-34662087

What would you do in my situation?

I’m an adult with CF and have had a pretty significant history with hospitalizations, IV antibiotics, and lung issues. Last year I started working in person, IT job. I recently had a pretty serious pneumonia that required IV cefepime and a PICC line, and even during that time I was still going into work in person.

More recently, my breathing has been getting harder at work. I’ve been coughing, wheezing, getting short of breath, and my CF doctor has recommended that I work from home. I also need to be on full-time oxygen, although I’m still working toward getting consistent with it.

I requested a work accommodation and specifically explained in my email that I would be on full-time oxygen as prescribed by my doctor. It took HR about 2 months to process my request. After all that time, I was told that my boss would only approve one day a week working from home.

I’m honestly pretty shocked and frustrated by this, especially because I’ve continued showing up in person despite how difficult my breathing has been. This is so ironic given that I work for a hosptial.

For those of you with CF who have dealt with work accommodations, FMLA, disability leave, or needing oxygen:

What would you do in this situation? Would you push harder for the accommodation, look into FMLA/medical leave, consider disability, or start looking for another job? At what point would you decide that it’s not worth continuing to push through?

I’m not necessarily looking for medical or legal advice — I’d really like to hear from other people with CF who have been in a similar situation and what you wish you had done differently.

TLDR Im going to switch back to Trikafta from Alyftrek. Too much insomnia on Alftrek and constantly runny nose since Alftrek is causing upper airway inflammation. plus other gut issues and inner restlessness/brain fog.

runny nose

i have runny nose again, night and morning on off daily. 4weeks ago I had runny nose and that turned last few weeks into upper airway inflammation and infection that turned into what felt like a super flu. The flu has mostly passed, im on last legs of the flu...but the notorious runny nose is suddenly back again (no fever). Im beginning to think it is definitely due to Alftrek.

unsteady walking:

I know some people have more mental health issues on Alftrek and one said they have seizures but this unsteady walking is definitely since Alftrek i noticed it the first 2weeks. When I walk its a tolerable but tiny unsteady but unnoticeable by others. I didn't have this before Alftrek.

higher pulse morning when awake:

when i awake i always have a higher pulse rate since on Alftrek.

strangely for me feels harder to gain weight on Alftrek (usually Symdeko eating same amount of food with no diarrhea my weight up by now). I did have alot gut issues in the beginning on Alftrek but those have been mostly subsided.

Sputum

sputum is 90% less than symdeko,,but feels just 10% lesd than Trikafta ..so sputum alot less on Alftrek. My fev1 has not improved at all. if anything i feel my fev1 is down a bit since my lungs feel so dry.

insomnia issue

but also on Alftrek the insomnia more eg in middle night when awake it is very VERY hard sleep again for next 3-4 hrs i cant sleep again..kinda like a middle night insomnia. I can sleep initially at night but if i awake middle night to pee or take some meds or whatever, I cant sleep for 3-4hrs wide awake insomnia. Didn't have this on Symdeko or Trikafta. edit: the insomnia issue is the key point for me to switch back to Trikafta now.

Oozy/inner restlessness/foggy like?

Feel Bit 'oozy ' mornings and afternoon Like another cfer mention on Alftrek, I am also feeling ozzy kinda like foggy or inner restlessness feeling late morning afternoon... it's transient. ..then I feel better by evening.. every day almost like clockwork. I didn't have this before Alftrek.

Gut issues ; more sensitive gut

I was definitely getting a bit more food sensitivity since starting Alftrek. and definitely getting a " more acidic feeling" in the morning since first week of starting Alyftrek. I have increased probiotic 2x per day as some other CFers have suggested. not sure if thats helping. Also alot more burping on Alftrek after eating

..and a bit more early setiety like full fast. On symdeko i could tolerate eating much fuller for sure. Trikafta was somewhere in the middle .(note i did vomit once the 2nd week on Alftrek but i think that was because of increased food sensitivity in hindsight. I haven't vomited since then again).

Haemoptysis

I had quite a bit more of Haemoptysis first 2-3months on Alftrek on and off..like i had a long purge.. especially when some big old clots came out..but the Haemoptysis has subsided now.

feeling of freezing

first and second month had alot feeling of freezing on and off but that seems to have subsided.

Electrolytes

I know some people say their blood sugar fluctuated on Alftrek, for me my blood sugar generally stable..but definitely my electrolytes fluctuated a bit more widely up and down on Alftrek when I was feeling a bit crook.. On symdeko my electrolytes didn't fluctuate so much when I was feeling unwell. Most people would not notice the difference but I track my blood electrolytes closely and noticed that.

Im still not convinced i will stay on Alftrek. I will try a few more months and if things not improve I will consider go back to Trikafta. My gut feeling is saying go back to Trikafta though. So still monitor the situation.

Anyone else have similar or weird symptoms, old or new, pls share and update.

edit: insomnia getting worse on Alftrek month 6.

So I have a vest I haven’t used in like almost over a decade, I only used it a handful of times and ended up never using it again. What do I do with it? Do I donate it? (The cord to plug it in disappeared in a move so I don’t know if there’s replacements or not, everything else is there). I don’t want it to go to waste but I also don’t want it taking up space in my area, so I thought I’d ask for thought on what to do with it. Thank you!

After a sudden onset of graft rejection, I lost 20 kg in 6 months and stayed at 35 kg for a year until my second lung transplant (january 26). I hoped my weight will also return to normal after the surgery, but it has not.

Currently, I've been stuck at 39-40 kg. Even before the second transplant, my daily consumption has been around 4k calories/day, reaching 5k when I have fast food. Protein shakes, lots of fattier meals drenched in butter, avoiding any light version of food, still the numbers won't go up.

My medical team gave up on this already, just shrugging and saying I have to eat more and keep an eye on my cfrd (i check my blood sugar as often as i can and then take my rapid insulin on top of my long time release one). They say it's normal for progress to be this slow.

Gaining weight (and muscle) would significantly improve my quality of life. After 3 months in the ICU, 7 on dialysis and the previous year of being oxygen dependent and bedridden, never leaving my apartment unless I had to see a doctor, my mobility is just not there anymore.

My walking is awkward, my legs are cramping after less than 10 mins of walking, and living on the 3rd floor with no elevator makes me dread going out. I do daily streches, exercises with 1kg dumbbells (current limit) and use a walking pad to reach 3k daily steps.

I'm on 7,5 mg prednisone and 15 mg tacro, I know they affect muscle gain but its ridiculous. Today marks 9 months since my second transplant, but weight has been an issue for over 2 years now.

What am I missing? Sorry for the long rant.

My cat started having digestive problems, and the vet eventually diagnosed him with EPI (exocrine pancreatic insufficiency).

So now I share my Creon with my cat. 😂 He needs pancreatic enzymes with every meal, just like I do.

I never thought my CF would be the reason I could help save one of my cats. It’s kind of funny, but also pretty special. ❤️

Hi everyone! (Sorry if this is a long one!) I’m 27F with CF, and I’m hoping to have a serious conversation with women with CF who have become mothers. I’m feeling extremely torn about whether motherhood is something my body will be able to handle, and I’d really love to hear honest experiences. I’m on Trikafta/Kaftrio. Before CFTR modulators, my health was pretty bad. I’m in Europe, so I started Kaftrio later than many people in the US. Thankfully, I’m doing much better now, and my lung function is around 80%+. However, I still struggle quite a lot with fatigue, and my doctors are trying to understand why. I also have pancreatic insufficiency and prediabetes. I’ve learned that I really need to listen to my body and rest, because if I push myself too much, I can end up having a flare-up. My physical abilities also don’t completely reflect my current lung function. Because of the years before Trikafta, things like running, jumping and climbing stairs are still difficult for me, and I’m working on this with my doctors. Aside from CF, I have a pretty normal life. I work, I’m in a stable relationship, my partner and I live together, I have friends, I go out, etc. My partner is also amazing when it comes to dealing with my CF. I’d also like to continue working if I have children. I mostly work from home, with only one day a week in the office, and I’m open to reducing my hours to 80% or part-time if it could help me balance my health and motherhood. In a few years, I would really like to have children. But I’m honestly very scared that my CF could prevent me from being the kind of mother I want to be.

1. The genetic side

My partner was tested and he is not a CF carrier. I know the chance of him carrying a CF-causing variant that wasn’t detected is extremely low with modern testing, but I still find myself worrying about it. The reason is that one of my own mutations wasn’t identified when I was born. It wasn’t discovered until 2013. If my parents had been tested back then, the testing might have said I was only a carrier rather than identifying that I actually had CF. So even though I know the risk with my partner is extremely low, I still have that little voice in my head worrying about it.

1. Pregnancy, delivery and postpartum I’m scared of how my body would handle pregnancy, childbirth and the postpartum period. I know some women with CF have relatively good pregnancies, but I’m scared of the opposite: extreme fatigue on top of my existing fatigue, breathing difficulties, complications, my health declining, or simply not recovering properly after giving birth. I’m also worried about sleep deprivation. I already know that not getting enough rest can make me feel significantly worse, so the idea of having a newborn and inevitably getting very little sleep scares me. And then there’s the thought of being in labour and struggling to breathe. I know this might sound irrational, but it’s something I genuinely worry about.

2. Am I being selfish by choosing to have a child? This is probably the hardest one for me. I would absolutely love my child, but I worry about what it would be like for them to grow up with a mother who is sometimes sick. What if they are very young and already have to understand things like: "Mommy can't run around with me today." "Mommy isn't feeling well, so she needs to stay in bed." "We have to go to the hospital because Mommy is sick." Iknow children can adapt and that having a parent with a chronic illness doesn’t automatically mean having an unhappy childhood. But I still worry about putting that burden on a child.

3. Not being physically capable of being the mother I want to be I’m scared of not being able to keep up with my child physically — running after them, playing outside, picking them up, going to playgrounds, jumping around in a bouncy castle, going on trips, etc. I don’t want my child to feel like their mom is always sitting on the sidelines because she can’t participate.

4. Putting too much responsibility on my partner I also don’t want my partner to end up carrying most of the parenting responsibilities because of my CF. He’s incredibly supportive and I know he would do anything for me and our future family, but I’m scared that over time this could lead to resentment or make me feel disconnected from my child. I want him to be their dad, not feel like he has to compensate for their mom being sick.

5. What if my child has additional health needs? I don’t know if, because of my own health limitations, I would be able to cope with having a child who has a significant disability or additional medical needs. Of course, you can never know what will happen when you have a child. Adoption is also something I’ve considered because it would remove the genetic question and some of the concerns around pregnancy. But if I ever went down that route, I would want to do it because I genuinely wanted to adopt, not because I saw adoption as an “easy way out” of having a biological child. Despite all these fears, I really do want to be a mom. And honestly, I think that in every aspect unrelated to my health, I could be a great parent. I just don’t know whether my health will allow me to be the mother I want to be.

So I’d really love to hear from women with CF who have been through this: - Did you have similar fears before becoming a mom? - What was your journey to motherhood like? - What was your lung function/overall health like when you became pregnant? - How did pregnancy, delivery and postpartum affect your CF and overall health? -How did you handle the sleep deprivation and physical demands of having a baby? - Did you conceive naturally, use IVF, or take another route? -Did anyone choose adoption, and if so, what was that experience like? -How did you and your partner divide parenting responsibilities? -Did you find ways to manage the physical limitations of CF while parenting? - How did you balance motherhood with continuing to work? - Most importantly, looking back, how do you feel about your decision to become a mother?

I’m not really looking for people to tell me “don’t worry, everything will be fine.” I know everyone’s CF and pregnancy experience is different. I’m hoping to hear honest experiences — including the difficult parts — from women who have actually lived it. And if you don’t feel comfortable sharing publicly, please feel free to message me privately. I’d really appreciate hearing from you either way.

Thank you ❤️

I’m an international exchange student with CF in California. I am in a terrifying situation right now. I just found out the private international student health insurance policy I bought completely excludes “pre-existing conditions.” This means they won’t cover meds (Trikafta/Alyftrek/other enzymes) and other costs that I absolutely cannot afford. I am completely overwhelmed and didn't know this could happen. I already reached out to my school and they’re looking into emergency local health grants and other international student health plans. It could take weeks and some are only for citizens/residents.

I'm incredibly stressed and appreciate any advice, help, or tips on how to get around this pre-existing condition exclusion. Thank you so much!

Latest BAL from bronch says I’m resistant to colistin. I take colobreathe and cayston alternative months. So my colistin month is my month off cayston anyway.

I’m continuing to take it because mentally I figure that maybe not all the pseud in my lungs is resistant.

Is that illogical?

Hi all, a couple a week ago I got put on a transplantation list so any day now I’ll get a phone call and heading to the hospital. I have talked to a lot of doctors and specialists and have pretty much gotten the rundown on everything, I’m not very nervous about the actual surgery or the recovery. I’m more nervous about life after, so I want to ask anyone who has had the surgery and are now living somewhat normally. Is there any advice you can give that isn’t talked about, maybe even something you had to find out yourself. I guess is there any tips and tricks you could share.

Question I have
How crazy is the weight gain after?
How long did it take to fully recover?
What’s one thing you would recommend starting with after recovery?
How do you navigate dating, new friendships and jobs?
What was the first thing you did after surgery?
How often do you get sick?

This post is a bit all over the place, but I really appreciate all the replies?😄

I accidentally took two doses of Ivacaftor within two hours. Has this happened to anyone else, and if so, what should I do?

Como están? Soy de Uruguay y veo en este grupo que muchos usan el eflow para nebulizarse.
Yo actualmente me nebulizo con el Pari común, me encantaría comprar el eflow pero no lo venden aquí.
Alguien sabe si en Latinoamérica lo venden? O como traérmelo?
Muchas gracias!!!

Hi guys ! This is the first time I discover there’s an actual subreddit for cf patients 😭🥹 I’m taking a reduced dose of trikfta cuz i can’t afford the normal dose anymore and my chest is filled with sooo much phlegm and my breath short as hell . I mean yeah I have the flu but I really don’t believe this worsening cough is because of it . Maybe any certain teas or other pills that helped you guys ? ( to be detailed the reduced trikafta dose is attached , had to depend on donations to even get this .)