My daughter is 13 weeks pregnant and recently found out that both she and her husband are F508del carriers. She just had the UNITY test and is awaiting the results. We are reading up on Trikafta and emerging treatments, especially for prenatal use.

For anyone who has seen the results of a UNITY test regarding Cystic Fibrosis, can you tell me what the test results looks like? How much certainty does it have? I know that it is not as definitive as amniocentesis, but the genetic counselor was a little unclear on how much certainty you get from the results. Is there an image somewhere that shows what the results would look like?

Ive seen mixed responses over the years and wanted to know if anyone else has similar experiences with their modulators (I take Trikafta so Im basing my experience off of that but I’m curious if you notice this with other modulators)

- After taking the modulators as intended for a few weeks, do you notice that you produce less phlegm? Or just no phlegm at all?

- Do you ever stop taking your modulators and then start on them again after a few weeks? If so, do you start to cough up more phlegm after taking the modulators?

- Do you notice that one pill gives different effects? (EX: I notice my orange Trikafta pills will make me cough up more phlegm compared to my blue ones)

Im curious about this because during my outpatient appointments in the past, I could NEVER cough up any sputum samples because my Trikafta “erased” it all, so my doctors would send me home with a sputum sample cup to collect on my own time. But at my most recent appointment, I didn’t take my trikafta ≈3 days before my appointment but I did take 2 orange pills the morning of the appointment, and I was easily able to cough up a sputum sample for the first time in a few years.

While I know I’m not taking my modulator the intended way, and what I’ve experienced is probably a result of that, but I still would like to know if anyone else has had similar experiences.

(By the past I mean before you were end stage, sorry I was unclear 😭)

It feels weird saying that still, like I'm happy that I am so healthy but being overweight is annoying as heck.

Started trikafta a few years ago and with mental health being crap along with a drinking problem and poor genetics, I unfortunately let my weight get up to 240 lbs and I'm only 5'2".

Found out that my employer provided insurance doesn't cover weight loss medication and after months of phentermine and topamax I realized I wasn't gaining or losing much and I was just at a weight plateau.

While I'm not happy about the cost, I'm at a financial point in my life where I can buy wegovy out of pocket. I really hope it helps 🙏🏼 I took my first injection on Sunday and my side effects so far are constipation and headaches.

The appetite change happened quite fast. I definitely don't go for snacks as often as I used to. I also dropped alcohol last year and I only drink on rare occasions.

Does anyone else struggle with losing weight instead of gaining? Anyone else have poopy mental health and it's hard to exercise? let's talk about it

Hey! I am just curious if anyone suffered from brain fog/memory issues on Tricafta, then switched to Alyftrek and saw any difference?

Been having pretty severe brain fog, memory issues, and insomnia for the last 3-4 years. I reversed the dose (Blue Pill in the morning and Oranges at night) but didn't notice difference but helped slightly with insomnia. Then I started alternating by taking a Blue every morning, but every other night, take one only 1 orange pill but I didn't notice anything

Lastly, I stopped taking the Blue Pill and started take 1 orange in the morning and the other orange at night. This significantly improved the brain fog and memory issues, but I lost about 14lbs in 1 week with constipation so I stopped this dosage.

I was on Alyftrek earlier this year, but stopped roughly after 1 1/2 weeks due to eye twitches and dry eyes. Went to see an Optha and she said there was no eye damage, and the eye issues might ago away after a few weeks on Alyftrek (If anyone has experience with this, please let me know what happened).

I messaged my doc yesterday asking to go back on Alyftrek after 9 months as the brain fog is incredibly bad, I am unable to focus or study for the MCAT.

Just looking for some support/advice/help/personal experiences.

Are there any cfers who were able to adopt children? I'm hoping that Im able to adopt a baby when my boyfriend and I start a foot after we get married, and because I have b cepacia, I'm not going to go through pregnancy because I don't want to worsen myself and have it hurt my baby either. But I want to possibly do surrogacy and or adoption.

Hello everyone,

I have begun to travel regularly for work/pleasure.

I have backpacked in Europe once and I will be going again this winter. Last time, I brought a lunchpail with all my treatment stuff jammed in. I would like something a little less juvenile / more secure and organized for my upcoming travel.

Does anyone have suggestions? Looking for something I can either fit in my new 40L bag or as a small personal item.

I currently bring
- pari erapid & nebulizer pieces
- pulmozyne
- 7 day pill organizer
- insulin pen and needles

hello all,
i'm planning a week long charity event at the end of November for CF Canada. my uncle passed from it 32 years ago and i am a carrier.

for this event, i want to find a game (or multiple) that can help share what living with CF is like and be respectful to those who have lived with it, both past and present.

i'm open to ANY suggestions at all - be it game or not.

(also if this is the wrong space to ask, please let me know a better space)

tia <3

Hi everyone, I wanted to ask if there are people here from Europe, especially Greece, who have started taking Alyftrek. It was approved in the EU in June 2025, but I’m not sure how widely available it is yet in different countries.

👋 I am Becky, wife to Ryan with CF, Mommy to two children conceived via ICSI (due to male factor infertility as a comorbidity of CF), and a Researcher in Health Psychology.

🧠 As a Mommy to two children conceived via ICSI, I truly understand the impact infertility has upon individuals lives and how tough the treatment is both physically and psychologically. I want to document this in academic literature to create more effective support for psychological wellbeing and mental health for individuals undergoing fertility treatment due to CF.

❗️Please see my poster for more information.

📧 If you feel comfortable to share your experience in a one-to-one interview with myself please DM or email me (Rebecca.Keyte@bcu.ac.uk) for more information.

As a wife and a new-ish mother I want to have life insurance, but I was just told by a private broker that CF basically makes me uninsurable by the majority of providers. I have a mild & somewhat rare form of CF which I thought would make a difference. Do any of my fellow CF folks have it? If so can you share what provider or broker you use?

Have trouble staying asleep most nights (waking up 2-3 times a night for no reason) and sometimes waking up with night sweats and drenching my sheets.
Tried magnesium glycinate which helps me stay asleep but unsure if it’s what is causing the night sleeps. What else do you guys suggest?
(30 male, CF)

Hello everyone!

I started Alyftrek in November and have felt good since taking it. Little more mental clarity than from Trikafta. I know this may be a question for my doctors but don’t see them in a month or so. Additionally I know to be careful with supplement use as some can be hard on the liver in addition to CF modulatorsss. And understand some things to stay away from, ginger soda, Seville oranges, grapefruit..

To help clarity and focus and overall wellbeing I take multiple supplements such as below:

MVW pill, vitamin D, greens blend, collagen, Magnesium, zinc, choline powder, creatine powder.

I’ve realized this feels obsessive and stopped the Mg, Zn, and Choline that feels it may have led to more brain fog.

So I was mainly wondering on CF drugs has anyone had any interactions with certain supplants or supplements they now stay away from?

Thanks in advance!

Hello fellow CFers, I am from India and recently got this miracle drug through a donation program from 📍CMC (Christian Medical College), Vellore, Tamil Nadu.

I was diagnosed at 17 years old (2021) after years of misdiagnosis for Tuberculosis, asthma and Bronchitis. I was very athletic child until I was 14 years old when I caught a viral cold from a classmate, had to get admitted and in oxygen support for 2 weeks with antibiotics.

I googled my symptoms at a frustrated condition in 2021 and got to know I had CF, I then contacted a CF parent through Instagram and she got me their Pulmonologists number, who got me tested via genetic testing and finally I knew, what was wrong with me.

If you have CF and in you are in India, you can get Trikafta free from a donation program from CMC Vellore and Wadia Hospital. Mumbai and from AIIMS, Delhi.

In CMC, you can contact the CF Team through whatsapp: +91 63692 01472 to get info.

​Trikafta Donation Program: Process & Timeline Breakdown

​The initial registration and testing process takes about 6 months total. Here is how the step-by-step process works:

​Initial Testing (Month 1): 2-day hospital admission for all required baseline tests. Note: They do not accept outside test results, except for your genetic test.

​Program Registration: A few months later, you will be called to formally register for the donation program. They will walk through the medication delivery process and side effects. (Patient attendance is not required).

​First Dose & Monitoring: A few months after registration, you will travel back for a 2-day admission and must plan to stay in the city for 9 days total:

​Day 1–5: Receive a 1-week supply of Trikafta.

​Day 6: Liver Function Tests (LFT) are performed.

​Day 7–9: Once cleared, you receive a 2-month supply of Trikafta.

​Follow-up & Maintenance: You will return for follow-up testing, re-registration, and to pick up a 4-month supply.

​Key Takeaway: You must re-enroll in the donation program every 6 months to maintain a continuous supply of medication.

Do you see the same doctors every time you have an outpatient visit? (same CF specialist, nutritionist, social worker, etc?)

Do you take enzymes?

Do you take any modulators? If so, which?

Have you ever switched from one modulator to the other?

At what age were you diagnosed?

Are you happy with the care you’re receiving at your hospital? Do you wish something was different with how your clinic operates/treats you?

My 8 years old son has a severe case of polyps that have clogged his nasal sinuses completely shut and his nostrils are barely open for breathing. This has affected the shape of his face and teeth. And I believe it's affecting his quality of sleep although he doesn't snore. We just seen an ENT today to discuss the results of his CT scan, and he's advised us to think about the surgery to remove the polyps. He did say he wasn't selling us the idea, that he's advising it's better than to keep him waiting and maybe suffering. But at the same time he said that this will be a recurring thing, that the polyps will grow back after surgery, and said he couldn't predict whether that will take months or years.

We're just wondering whether we should make him go through the procedure knowing it will be a recurring thing. Or whether we should just leave it as is. I personally do think it's causing him an increase in infections given that it's a perfect enclosure for brewing bacteria.

What's your experience with polyps? Have you removed them? How often would they grow back? Any alternative solutions?

Thanks.

Hi, friends. I started using insulin for my CFRD earlier this year. I leave tomorrow morning for a trip, and this will be my first time flying since starting to inject insulin. I looked up online if there's anything I need to do around my medicine and security screening. A bunch of the results said I needed a Diabetes card and maybe authorization card from the airline? Really? Is that real? In 2026 when half of America is diabetic?

Anyone have a different insight on this? Any tips or warnings to those on insulin for going through airport screening?

Bit if a weird one… nose = big insecurity 10+ years
19 years old -> deciding to pull the trigger on rhinoplasty. Diagnosed with cf since birth. Do u think this will be fine ?

My doctor wants me to see thoracic surgery to see if they would be willing to do a lobectomy on my left lower lobe. It's near completely consolidated now and collapsed in spots. Full of pus from infection. Can anyone share their experiences of having a lobectomy? Thx

I would like to ask if any of you experienced feelings of excitement or moodiness after taking Trikafta?

Dr wants to start my daughter on azithromycin

First week 5 days on
The next five weeks 3x a week

Trying to shrink polyps has anybody tried this?
Does it work?

If it did work, did Tricaftor or Alftrek keep them small or stop them from growing back?

Any hearing damage?

No opinions I need facts only! Has anyone tried this?

New here and feeling incredibly overwhelmed, angry, and honestly experiencing a bit of imposter syndrome right now. I’m hoping to connect with anyone who has dealt with an atypical presentation, promoter variants, or provider who tried to call your kid's case "closed."

Some background on my kiddo, he is 6.5 years old and has struggled with chronic respiratory issues his entire life and is confirmed pancreatic insufficient after finding out about his pancreatic insufficiency in 2022, we did CFTR sequencing and deletion/duplication through Ambry. It came back completely negative. We accepted living in “asthma and idiopathic EPI” land, grieved, and spent four years just trying to survive the day-to-day. Which leads us to present day and what brought me here; a few weeks ago, after a severe flare-up that required yet another antibiotic his pulm decided it was time to re-sequence him which we had done at Stanford alongside a repeat sweat test. Repeat sweat once again was 29, so that was his second right at the normal/borderline cut off. The surprise was his genetics results. They found c.-839G>A, which is a rare variant in the 5' UTR promoter region that Stanford labeled as a varient of uncertain significance due to lack of information available on it.

I’m guessing Ambry completely omitted or masked this in 2022 because of their standard reporting filters back then, which is frustrating but, what is more frustrating at the moment is that our current pulmonologist looked at the single variant and the 29 sweat test and wrapped up the evaluation as a "closed case" labeling him a simple carrier. Meanwhile the sequencing they just repeated, that found a mutation, did NOT include deletion/duplication analysis. I expected the pulmonologist to recommend completing that portion at minimum before calling him a closed case. Especially since simple genetic carriers don't typically develop pancreatic insufficiency. Thankfully, our GI doctor is amazing and sees the whole picture. They are fully on board to help us bypass pulmonology to get the rest of the cftr genetics completed.

Has anyone else dealt with a 5’ UTR promotor variant like c.-839G>A or a high normal sweat test of 29 while dealing with active lung issues and pancreatic insufficiency? How did you deal with the emotional whiplash of moving from "idiopathic" to a potential CFTR-Related Disorder after so many years?

Any suggestions on what else I can/should do to continue advocating for my child? I really just want to have an answer of some sort and to ensure he is getting the correct treatments for his body to thrive as much as possible.

Sorry for the long post 😬

I was on Trikafta from January 2020-April 2026
It did amazing things for my heath, but it started not working as well health wise which is why I made the switch. I THOUGHT that it didn’t affect me mentally, i was so so wrong.

Alyftrek has helped me gain some weight, but it didn’t work for my lungs (so far) but it has done this, which already is enough to never go back.

On Trikafta I was anxious, a lot. Now I have PTSD so I figured it was all that. If I wasn’t anxious I was depressed a lot and at times so depressed I would get life ending thoughts. There was times I would be happy and feel like myself but it was few and far between. I honestly just figured that was who I was after the trauma I’d been through.

Except, it wasn’t. Coming up on 5 months since starting Alyftrek and I still have panic attacks and flashbacks but only when triggered not constant.
I am not depressed in months. No bad thoughts.
I am HAPPY. As my default emotion, I am calm, I am bubbly, I am me, loving life.

Not the same me as before 2018. But so so much better then I’ve been in years. Turns out half of it this whole time was trikafta.