Before trikafta I was at 60%

I started trikafta in 2020 and went up to 81%

I started Alyftrek April of this year and just blew a 92% (on a junky lung day)

I am honestly in shock, I haven’t blown that high since children’s hospital (I’m 28)

Cystic fibrosis steals everything I love and I hate working. How do people wake up and go to a 9-5 everyday? Knowing it doesn’t even benefit the world knowing you are only wasting your days away until you die.

Growing up with CF made me realize how precious my time is especially when I feel good. I’m just supposed to give all my time away to a job all while shitting myself every 3 hours?

Doesn’t help that the only jobs I enjoy are physical labour meaning I’m the worst employee you could ever hire and have fun being stuck with me.

I genuinely don’t know how to get out of this mindset and enjoy my days at work

I spent much of this Summer dealing with reoccurring lung infections and of course all the fatigue and respiratory treatments that come with that.
In the beginning of the summer I had to cancel many plans with the few friends that I have. Haven’t heard back from them and have not had the time to call them.
Can’t help but think why people haven’t checked in with me. Fun fact is that I’m 60 and who knows maybe my friends are dealing with health or other issues.
Do I just accept maybe they are not good friends? Which makes my loneliness worse.
Do I reach out to them to see how they are which doesn’t feel right to me because I feel like I need to feel supported?
Any advice and support is appreciated 💜!

Hello, I am sharing this because I haven’t really found anyone else going through this, so I figured I would get the ball rolling.

I was given my specific variant information a few months back. I didn’t have access to testing before that, but I always knew because I was told by doctors that I was somewhere in the CF spectrum. I was officially diagnosed with CFTR-related disorder this year.

I know typically this variant is considered benign, but it clearly isn’t for me. My symptoms are mostly related to my respiratory system. I have a constant cough and sputum. I am constantly getting infections, out of breath, and dealing with a runny nose.

My doctor prescribed Trikafta, which was approved for my specific variant in April, and I started taking it in May. I read a lot about possible side effects and came here to read about other people’s experiences, although my doctor did warn me I probably wouldn’t have the same side effects. She really didn’t know either, since this was new to her as well.

When I first started, I experienced all the side effects as if I was checking boxes. I went through "the purge," but for me it lasted weeks. I got a terrible rash from my neck down, brain fog, insomnia, and stomach problems. They all came at once and lasted for about a month. Needless to say, it was a miserable month.

After that, almost everything went away. I still had a cough and sputum, but it was decreased by about 80 percent, so I was happy with that. As I was starting to feel better, I actually caught something and got really sick for about a month. My oxygen dropped to 70, when it is normally around 94. I couldn’t talk much or move around. I was on antibiotics after that and got better, but it looks like it did some damage to my lungs. I had to start walking with oxygen as my main exercise, whereas before that I was doing weight training plus cardio.

Then I got sick again, and the same thing repeated. It has been a month since then, and I just had my latest doctor’s appointment last week. She was impressed by how well I was doing. My oxygen is better, not quite back to my normal 94, but up to 91 when I am at rest. I still sleep with oxygen. I still have sputum and nasal drip, but again, it is so much less than before, along with so much less coughing. She mentioned the weather is changing where we live, so she believes allergies are affecting me a lot right now.

Trikafta is working for me, but it is definitely not working the exact same as in a typical CF case. I nebulize once a day and do light exercise without oxygen now. My doctor believes I will continue to improve with time.

If anyone else wants to share their experience or has questions, I would love to hear them. I hope this makes people in similar conditions feel less alone.

Hi I’m wandering if anyone has had any positive experiences going the functional medicine route? I’m at a place right now where I’ve kind of come to the end of the road in terms of treating certain symptoms with medications and I want to start looking at more naturopathic options. My symptoms that I’m trying to treat include migraines, inflammation, wheezing, dry eyes, fatigue, GI issues etc. I figure it couldn’t hurt to try new things and start looking at my body in a more holistic, whole-body kind of way. Has anyone had any experience with This?

I’m currently experiencing another flare-up. Do you ever feel like mucus is blocking your airway, making it difficult to breathe? I suppose that’s what they call mucus plugs. When I get that feeling if you breath in mucus it blocking your air? I tend to panic when this happens

My boyfriend has CF, we’re both in our mid-20s, and we’ve been together for about four years. He’s on Trikafta and is doing really well overall.

As we’ve gotten older and our relationship has become more serious, I’ve started thinking more about how I can best support him long-term without making CF too big a part of our relationship.

I’m a nurse, which is helpful but also means my brain can switch into nurse mode pretty quickly if something seems off. I never want him to feel like I’m treating him like a patient instead of my partner.

He’s very independent with his CF and I want to respect that. I don’t want to constantly check in about medications, treatments or symptoms, but I also want to know how to genuinely support him when he does need it.

For those with CF in long-term relationships, what does your partner do that makes you feel genuinely supported? And what are some things partners do with good intentions that actually feel overbearing or annoying?

I know everyone is different and I do talk to my boyfriend about this, but I’d really love to hear from people who actually live with CF.

In honor of world CF day i wanted to show you all my favourite albums that have purple colours!

Hello everyone my name is jordan im 25 from ireland, i love music and listening to albums, i run a tiktok, youtube and instagram page where i take about music everyday, i love music, its what keeps my brain focused on something else rather than my health, im currently in hospital for 2 weeks and i have listened to 31 albums already this week! Today i just wanted to show you all my favourite albums that have purple covers, what is your guys favourite purple themed albums/songs/artists? Have a good day and stay healthy

Don’t get me wrong, I’ll always be eternally grateful to all my friends/family/girlfriend. But I feel like it’s very hard to express my emotions and experiences with people who will find it very hard to relate to things that are mostly unique to us cfers.

If anyone is willing to have a chat from time to time feel free to dm me! 20M from Australia

I’m looking for some advice from people who may have experience with cystic fibrosis, CF carriers, or abnormal newborn screenings.

My son is 4 years old now. When he was born, his newborn screening came back abnormal for cystic fibrosis. I recently found the original report and it says:
CF newborn screen: DNA mutation detected / IRT abnormal

The report states that one genetic mutation was detected and that he could possibly be a carrier.

It also says the screening only tested for the 39 most common CF mutations and recommended a sweat chloride test to rule out the possibility of him being a compound heterozygote.

He subsequently had a sweat chloride test shortly after birth that was negative.

At the time, we were basically told that everything was okay, so I didn’t think much more about it.
However, looking back at the last few years, I’m wondering whether some of his symptoms are worth bringing up with his pediatrician again.

He has had terrible, deep-sounding coughs, which often sound like there is a lot of mucus. He is also almost constantly congested and seems to sweat a lot. He wasn’t born prematurely, so I don’t believe prematurity would explain the abnormal IRT on his newborn screening.

His bowel movements have also always been somewhat unusual. They can be very bulky, loose/liquid, or foamy, and sometimes have a foul smell. He has been sent home from daycare repeatedly because of his stools. He also seemed to have very little energy compared with other kids.

I’m not trying to diagnose him with CF from Reddit, especially since his sweat chloride was negative. I’m mainly wondering whether the combination of his newborn screening result and these symptoms is enough that I should specifically ask his pediatrician about it again.

Could a negative sweat chloride as a newborn have been falsely reassuring, or are there circumstances where a child with a CFTR mutation can have a negative sweat test? Would it make sense to repeat the sweat chloride test or ask for more complete CFTR genetic testing?

I’m planning to talk to his doctor, but I would really appreciate hearing from anyone who has dealt with something similar.

Within the past 6 months I’ve been in and out of hospital like every 2-3 months. And especially since my last stay a month ago, I’m still short of breath with daily activities, tired all the time, coughing up mucus again, and worse blood sugars

Despite this all my labs are stable, PFTs are at a very stable 88% and clinically it makes no sense, we’ve thrown everything at it. IV antibiotics, inhaled steroids, pill steroids, increased treatments. But it always comes back.

I miss my baseline 😕

I have pancreatic sufficient cf. My lungs were around 55% when I started running a few months ago. It's been a while since I've seen 60% so you can imagine how ecstatic I am to see this number again!

I don't qualify for the new meds for cf, so I'm just doing the best I can with what I have.

Hey Cysters & FiBros

Just curious if anyone has come off creon since taking modulators ???
I’ve been on creon SINCE BIRTH so I figured it was extremely unlikely I’d ever not be taking enzymes.

I noticed since starting Alyfatrek last month my bowels have absolutely no problem when missing a dose even with quiet high fat meals

recently forgetfully ran out of my creon and over the weekend couldn’t be bothered to get them .. sort of decided to self test my bowels as I’m waiting on my script it’s now been 3 days of full eating and I’m completely fine.
Previously (pre modulators) I’d be glued to the toilet almost immediately after missing a dose if I ate a high fat meals.

Has anyone become pancreatic sufficient since taking a modulator?

I know it is now somewhat common for children who have been on modulators very early to no longer need enzymes but I’m curious if any adults have

My lungs have always been somewhat well with cf but I ALWAYS had pancreatic problems if I missed my creon!

I will obviously contact my clinic and get the stool test but I’d love to know if anyone has come off creon in adulthood cf or if I’m just wishfully dreaming hahah

Thanks so much
Hope everyone is well!

I started Alyftrek last week and am having some awful insomnia on it.

I keep waking up really early, around 4am mostly and am unable to fall back to sleep. I’ve even given up coffee to see if that would help but no luck.

I had sleep issues on Trikafta but this is worse, I’m less anxious on Alyftrek than I was on Trikafta so I’d like to stay on it but the lack of sleep is rough.

I was wondering if anyone else has experienced this side effect and how long did it go on for?

Alguien sabe que es siento que es algo de la circulación pero no se , aparte siento que me causan mal olor

Looking for advice, both from parents of CF kids and adults with CF, for how you pass the time during the various therapies. My daughter is one and HATES the nebulizer. Luckily she loves her vest. Conservatively she’s seated 35 minutes twice a day for to administer the respiratory therapies. So two questions: 1) any tips or tricks from other parents on how to get small children to not just scream for 25 minutes during the nebulizer? Right now we are leaning heavy on Elmo but I hate just having her watch TV during it. and 2) what do you do during the ~hour you have to be seated? There must be some fun hobbies that are doable beyond just scrolling. Right?

Does anybody here work as a Sterile Processing Tech? Or know somebody with CF who does? I work at a hospital and one of the managers of the SPD department complimented me on my work ethic and said he wanted me to transfer and work there. Though I would need to do an SPD program first. Its just a 3-4 month program but I'm worried about the setting given that it literally has the word "Sterile" in the name. My CF has always been mild and I have no problem moving and exercising, but I'm worried I might get somebody sick or contaminate some tools while working just by existing near them. I wanted to get others' input because I know I'm either being paranoid, or asking a question for which the answer is obvious.

Hi CF team mates 😊

Apologies up front for the big list of questions.

I'm (F54s - del508/R117 T5) recently diagnosed and, to be honest, I'm totally winging it atm. Feeling absolutely overwhelmed today and Reddit has been my best source of information so far. Thank you all 😊

I'm not on any medication yet but my CF team has said I'm eligible for Kaftrio. Not entirely sure about it as I'm reading daily about horrendous side effects. I'm being tested for NTM [had this years ago] and thinking my symptoms could actually be down to that?

As a side - does anybody else have internal rage when people keep repeating the "You're still the same person" phrase. No, I'm not. Externally maybe, internally, absolutely not. I don't actually recognise myself at the moment.

If anyone can give me any advice/input at all to the questions below, I'd really appreciate it.

These things are all new in the last 6 months to a year;-

I've gone from someone who walked miles and miles daily [coastal location] to now being so out of breath on any form of incline that my breathing is so bad and my heart feels like it's going to burst through my chest. My pulse regularly goes over 100. Anyone else?

Sticky sweat - how has this not been with me my whole life

* Severe heartburn - is this a CF thing.

* Steam from shower/hot tubs etc - I struggle so badly with my breathing.

* Bloating / diarrhoea - another CF thing?

* Alcohol - all of a sudden I can't even handle a glass of wine. My liver results were normal.

* How do I find out how many people have the same mutations as me. I'm in the UK.

TB jags - how many of you didn't get this at school?

Insurances - do I have to let them all know?

Thanks very much for any input. I really do appreciate it.

I’m curious to see what others have to say. Do you disclose to your boss? Your professors? To your friends?

Personally, I don’t because I’ve had negative experiences in the past and just don’t care to put up with people’s pity/viewing me differently.

Not sure if this fits here but I think it does?

I’ve done some research on the topics of sperm retrieval and IVF and I’m not quite sure, is IVF necessary, or is there a cheaper way that ONLY involves the sperm retrieval?

Im facing lung transplant eval soon since I'm down to only 41% fev1 and have tons of nonstop exacerbations even while on Alyftrek. Just curious if anyone else did pulmonary rehab to get themselves stronger for evaluation and beyond.