Hi Reddit!

My niece has CF, and I'm working on a project about it. I was hoping to get some more info from other experiences besides hers about average different accommodations and routines for a day. My niece gets her nebulizer and physio most days if she's having trouble with a cough, and she needs to take enzymes before eating otherwise her digestion gets messed up. But I'm wondering what other hurdles kids could experience that aren't massive events? Just average little changes or accomodations to daily life and what challenges may present themselves.

Before Trikafta, my lung health was quite stable. My PFTs were steady, and I required IV antibiotics once a year at most. I was on a reduced dose of Trikafta for almost four years. Although my lung function didn't improve much, I didn't require IV antibiotics the entire time I was on Trikafta. I discontinued Trikafta in April 2025 due to worsening side effects, and my health has been a bit of a mess ever since. First came shortness of breath and a nagging dry cough. Then came drops in oxygen levels and extreme fatigue. I'm on my third round of IV antibiotics in 9 months, and my PFTs have dropped 30 points after having been steady for 20 years. We've identified a hole in the heart, which we believe is causing the oxygenation issues. I'm curious if others have had severe health changes after stopping Trikafta. I told my doctor that it's almost like I have a whole different brand of CF now. He had warned me that it was typical to have an exacerbation after coming off Trikafta, but this just won't quit. I'm curious if anyone else has experienced this.

Can I do a practice at home, I'm aitistic and I want to prepare myself because I've never t had one before. I don't have CF but it's been mentioned as a possibility along side copd and asthma, idk where else to ask. Will I faint? I feel like I might. And they said they might give me some bronchie thing between the tests? I'm confused

Hey everybody,

I'm a 24-year-old woman with CF. I've been on Trikafta (Kaftrio for my fellow Europeans) since 2021. My current FEV1 is around 85% (it can drop to around 65% when I'm sick). Before Trikafta, it was around 50%. I'm pancreatic insufficient and prediabetic, but I don't have CF-related diabetes.

My question is about fatigue. Does anyone else experience severe chronic fatigue?

I've noticed that mine has been getting worse over the past few years. It's not really chronic pain or shortness of breath—I can usually catch my breath pretty quickly. It's more like my body is constantly fighting just to have enough energy to get through daily life.

I recently moved from one EU country to another and, for the first time in my life, I'm being followed by an adult CF center. Before that, I was always followed by pediatric teams because there wasn't an adult center available where I lived.

I also recently started my first full-time job. Between work and commuting, I'm out of the house for about 13 hours a day. It's made me realize how bad my fatigue has become. For example, if I spend 4–5 hours out with friends at a restaurant, I come home completely drained. Not just tired—fatigued. Like there's absolutely nothing left in the tank.

It's becoming really difficult, especially on the days I have to go into the office.

I don't think it's depression. I have ADHD, I'm followed by a psychiatrist, and I take medication. My mental health is actually in a pretty good place overall ( and according to my psychiatrist this fatigue is not connected to my ADHD)

What scares me is that I don't know what to do about this. I feel like I'll never be able to fully enjoy life because I'm always exhausted, and I'm worried my doctors will brush it off because my lung function looks relatively good.

Are any other adults with CF dealing with this? Has anything helped? And do you have any suggestions on how to bring this up with my CF team so they'll take it seriously?

I keep thinking about my future—finding a permanent job, getting married, having kids—but with this level of fatigue, I'm honestly not sure how sustainable any of that feels.

I'd really appreciate hearing other people's experiences.

Hello! I hope everyone is well I recently got treated for an aspergillosis infection via IV and in my recent CT scans we have been following a fungal ball I have.

I’m just wondering if anyone else here deals with this or has dealt with having one, it really makes me nervous about the future or what can become of this and I am unable to find much info about this online other than scary things.

Thanks in advance and stay well!

I want to preference this but acknowledging how lucky I have been to have access/ responded so well to trikafta and avoid any antibiotics in 3 years. My worries are very bottom of the tier for cfers

I have been so fortunate that 3 years ago when I started trikafta my mucus literally disappeared overnight. No more clearing my throat every sentence, hemoptysis and frequent antibiotics.
It was truly life changing

Since that day of my first pill I have had no antibiotics , hospital admissions or even a cough which is absolutely WILD to say considering I was going very downhill in my early 20s

Today I felt my chest felt unusual and suddenly all “filled back up” with mucus like I was pre trikafta.
I’ve gone from completely clear sputum yesterday back to green thick mucus but no cough.

I have gone through a pregnancy , Covid twice, the flu and preschool germs and still free of any mucus or Infection🤯

I think I got abit delusional and like I was cheating cf.. just hitting me very hard to be thrown back into it. I will be sending away a culture asap once the weekend is over and seeing what is lurking / growing. I know it’s absolutely inevitable to avoid infection but the first one back is really hitting hard.

I’ve heard some people comment that trikafta has become ineffective the longer your on it??? Is there anyone truth to this haha??? Or anyone that has experienced trikafta “wearing off” lol maybe I’m delusional

Anyway here’s to praying im only growing staph and oral antibiotics lol

Hello, we currently have a 7 year old son with cystic fibrosis. We recently found out I am expecting another baby. Me and dad are both carriers but did Nateras fetal focus which says the baby is low risk. I’m just trying to better understand these results and see if anyone here has gone through a similar experience. Thanks.

Hi everyone,

I'm a 24-year-old male from India living with cystic fibrosis. I'm trying to learn more about managing my condition effectively and would appreciate advice from people who have experience with CF.

I have a few questions:

How do you perform your daily chest physiotherapy? Are there any good techniques or videos you recommend?

How often should airway clearance exercises be done?

For those taking Ivacaftor (Kalydeco) or similar CFTR modulators, what has your experience been like?

How do you manage medications, nebulizers, and physiotherapy alongside work, studies, or daily responsibilities?

Are there any Indian CF patients here who can share their experience regarding access to medicines, doctors, and treatment costs?

What lifestyle changes have made the biggest difference for you (exercise, diet, sleep, etc.)?

A little about me:

Male, 24 years old

Height: 5'7" (170 cm)

Weight: 52 kg

Living in India

I'm looking for practical advice on building a sustainable routine and improving my quality of life. Any tips, resources, or personal experiences would be greatly appreciated.

Thank you.

Hey guys! I wrote a piece about CF and how I see it represented in Thane from the Mass Effect series. If even one person enjoys it, then the shame of putting yourself out there will have been worth it lol

I didn’t realize may was CF awareness month, thinking of you all as we fight this fight together, parents and patients 💜💜

Hello everyone,

My wife and I just welcomed our daughter Elena into the world 10 days ago, and honestly, we are still trying to process everything that has happened.

During a 34-week ultrasound, Elena’s measurements looked a little unusual. Her arms and legs were around the 50th percentile, while her head and belly were measuring around the 90th percentile. We asked questions at the time, but no one seemed overly concerned.

My wife ended up needing an emergency C-section because Elena wasn’t tolerating contractions well and labor wasn’t progressing. My wife was incredibly strong and brave through all of it.

Right after Elena was born, I could tell something was wrong from the expressions on the doctors’ faces. She needed emergency surgery shortly after birth for what I understand was jejunostomy or jejunal atresia??/meconium peritonitis related to a bowel obstruction. Thankfully, we were already at a hospital with a NICU and pediatric surgeons who could operate immediately. She’ll likely be in the NICU another 8–10 weeks while she recovers and eventually undergoes a second surgery.

We recently learned Elena carries two copies of the DF508 mutation, and the doctors are evaluating her for cystic fibrosis. I’ll admit I knew very little about CF before this happened, so I’ve been reading as much as I can and trying to learn quickly.

Right now she’s doing well in the NICU, and we’re incredibly grateful for that. But as a new dad, I’m also scared and overwhelmed about what the future could look like.

I wanted to ask this community:

• What do you wish you had known in the early days after diagnosis?
• What helped you or your child thrive physically and emotionally?
• What questions should we be asking our CF clinic right away?
• For parents of younger children with CF, what treatments or routines made the biggest difference early on?

I’ve also been reading about medications like Trikafta and some of the side effects people have experienced. I know treatments have changed CF outcomes dramatically over the years, but as someone who tends to be VERY cautious about vaccines/medications/etc in general, I’m trying to learn from real experiences and understand how families make these decisions.

I’m also interested in hearing if there are supportive lifestyle habits, nutrition approaches, therapies, or other things that helped alongside standard medical care.

Mostly, I just want to do everything possible to give Elena the healthiest and happiest life we can.

Thank you to anyone willing to share their experience or advice.

One of my oldest and dearest friends looks like she’s dying right in front of me and I don’t know what to do. We’ve been friends for over 30 years and I’ve seen her through multiple hospitalizations, a live donor bilateral lung transplant, DIOS and other issues.
We went to the er last Tuesday and she’s had multiple x-rays, ct scans and a lung biopsy. She’s on multiple antibiotics, steroids and lots of other meds. The problem is that she’s progressively getting worse instead of better. Because of the holiday weekend we don’t have results from the biopsy yet.
The problem is her oxygen. We started out on none, went to a nasal cannula then a cannula and a mask and now high flow oxygen. However whenever she talks/eats/moves her stats dump. And they’re evaluating her for ICU
I guess I’m wondering how many cf people have been here? How have they come out the other side?
I don’t know what to tell her to reassure her. I’m super scared myself.

Tomorrow afternoon, I’m going in to get a contrast enema in hopes of better understanding what (if anything) may be causing my gut problems. As far as I know, it is not a barium enema, because I am not having to do any preparations before it. I can eat and drink as normal.

However, I have been prescribed a single Valium pill to take on the way to the hospital, so that I’m more tranquilized for the procedure (and yes, I have a family member taking me to and from there. I can’t drive while under the influence of a sedative lmao).

I don’t know what to expect, and frankly, I’m pretty scared. I’ve heard that Barium enemas are quite painful, but the water-soluble contrast ones are not. But, I don’t trust that to be the case. I’m a catastrophizer. I love to torture myself with “what if this turns out to be the most painful thing ever?”

If anyone’s had one of these done, let me know how it went, good or bad! I will update this post myself after the experience. Hopefully it isn’t nearly as painful as I fear it may be.

Also, I hope that the blockage gets cleared out like my doctor said it would. She described this procedure like a “yearly plumbing cleanse”.

UPDATE:

Well… that wasn’t fun. Turns out, Valium does nothing to calm me down, and my body did not like the catheter or the Gastrographin being inserted into my butthole. I had them remove the catheter early because my entire abdomen cramped up and started to hurt badly.

That said, it wasn’t as bad as the cramping I experienced when I first started Trikafta and went through the dreadful purge. Nor was it as terrible as the time I ate fast food while on a road trip and held in all my farts because I didn’t want to hotbox the car with my SBD’s.

From this point forward, I’m just gonna cleanse my colon at home with Miralax and apple juice. But, at least it’s done, and a few rock-hard chunks have evacuated my bowels since enduring it.

Hi. Sorry, I was wondering if you guys know of any help I can get as a person with Cystic Fibrosis living in a hoarder home with exposure to mold & cigarette smoke since my parents refuse to stop smoking in the house for 23+ years. I'm a working adult, but i feel like if I want to get out of here anytime soon I need a bit of help. At this point in my life, I worry how the exposure to these things will impact my health in the long term.

And no, they refuse to stop. I have tried confronting them for nearly a decade. Not even my CF specialists could convince them to stop. Not only does this impact my health physically, but it takes a mental toll knowing my parents do not care.

This may be a silly question- but has being on like an abnormally bumpy bus ride ever made your lungs feel freer? I know a common treatment with significant buildup is a vibrating jacket type thing, and this sure feels a little similar.

Been on a purge of old items in general these days. This morning's task was going through old CF files late 1979-90s and scanning what isn't in DMRs. In doing so I found this gem of a price sheet for mail order CF meds circa 1995. Had to share with those of us OG CF'ers that could relate. Breathe easy when possible friends and enjoy the little things.

Edit: AI generation was to remove PII from the original doc.

Been playing around with it, and it managed to go really deep on which CF related genes I have! (I’m a carrier with CBAVD)

I started taking alyftrek in October 2025 and had no impacts on my period from the jump. Fast forward to February 2026 and my period has disappeared up until this point. I’ve always had pretty regular periods even though they have been heavy/painful. I’m wondering if alyftrek may be messing with my cycle and am curious if anyone else has a similar story?

Please use this thread to update everyone on how your health is going and discuss any concerns you may have during the week.

Please use this thread to post links to your blog, vlog, calls for charity, and requests for assistance with any research you are conducting.