r/CysticFibrosis

Hello fellow parents,

My son was diagnosed with a rare mutation at age two. He began a regimen of trikafta and zenpep not long after. Fast forward to age five and his fecal elastase test shows his pancreatic enzymes are normal and he no longer needs to take zenpep! His pulmonologist has only had one other patient with this type of result. However, as we just discussed with the nurse on his care team, there is no regular fecal elastase test in the protocol. There is only so much research out there since the access to Trikafta increased with younger kids beginning to take it. If your child has been on cf modulators for some time it can’t hurt to ask the doctor if you can literally scoop some poop and send it to a lab! Sending you my best wishes.

I'm 16, want to go to uni in 2027 or 2028 and im just curious how UK unis handle students with cystic fibrosis

TLDR; While I'm waiting for the results of CF genetic testing, how likely is it that a low 80's sweat test is a false positive? The Adult CF doctor provided an answer, but I'm curious what the folks of reddit think.

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Hi y'all - I'm around 50 and have experienced various CF related issues my whole life (lungs, sinuses, constant sometimes inexplicable diarrhea, dios, ability to eat insane amounts of food without gaining weight, etc). It wasn't until about 10 years ago when my very young child had junky lungs resulting in multiple overnight hospitals - along with my Mom's health history - that made me consider atypical CF. I had brought it up then with doctors but was soundly dismissed.

Since I seemed fairly healthy, it was a struggle just to get the sweat test since the medical professionals probably thought I was nuts (I'm Asian but 1/8th European). I had dawdled on pushing for the testing, but I wanted to get the splinter out of my mind (combined with my kid's constant coughing all these years), especially after reading the WashPost Medical Mysteries article "All his life his health was poor" in 2019 where the protagonist had a normal sweat test and a single ∆f508 mutation. At that time, Covid hit, and quarantine was the best thing for our health, so I ended up sitting on it. It wasn't until I was learning Italian last year preparing to watch the Olympics in Milan when I picked a random Netflix movie, Out of my League, and I had to look up in English what weird disease this poor girl had. That finally got me to just get it out of the way.

I was ready to pay the almost $700 I was quoted out of pocket just to eliminate that as a suspect for good. I was fully expecting my results to be normal but was in shock when I first heard the numbers for both arms. I went through this strange mourning for alternate universe me where my parents decided to stay in the US before I was born, and I ended up getting sweat tested and told that I wouldn't live past my teens.

After that, we had my still junky lung kid tested, and thankfully, it was in the mid teens. I understand he may still have it, but we'll cross that bridge depending on the results of the supposedly very comprehensive genetic testing.

Thanks y'all!

Newly diagnosed with CF (sinus disease, nasal polyps, mild biapical scarring, Minimal bronchial wall thickening and minimal bronchiectasis in the anterior segments of the upper lobes, malabsorption or something I keep losing weight, scoliosis and osteoporosis all over). I’m 37(f), also diagnosed with Ehlers Danlos Syndrome, POTS, fibromyalgia, Psoriatic arthritis.

Newest weird symptom is my left foot middle three toes they Charlie horse all at once, give me numbness tingling and throbbing pain. Does anyone experience this? I’m getting into a gastro and think I need a bone density test. I’m starting my journey.

Thank you. Hoping my insurance covers the medications.

hey everyone!! so i'm a seventeen year old girl, and i've been sick since i was about ten, when i suffered severe salmonella and celiac disease that left me malnourished and weak. i got most of my strength back and seemed mostly well recovered until i was about thirteen, when i started suffering from severe, frequent migraines and chronic fatigue. recently my symptoms have ramped up again. i've had several lung infections throughout high school, most recently a severe strep-like virus my doctors couldn't diagnose two months ago, and since then i've been having coughing fits and bringing up yellow mucus every day. i'm always exhausted, and i have terrible stomach pains and other symptoms that fit with pancreatic insufficiency. i've worked with many doctors over my lifetime, yet none have been able to come up with anything concrete- they attribute everything to my celiac or my having anorexia, though i've been in recovery from my most recent episode for a year and these symptoms really don't fit with ones i experienced due to malnutrition. does this sound familiar to anyone? and does anyone have tips about asking doctors for a CF test? i'm really scared of not being taken seriously because i know i'll likely come off as someone who just googled their symptoms and is overly anxious, but i really do think this could be a possibility for me. my parents kind of dismissed it because we don't have a family history of CF and my doctor has never brought it up. any advice is appreciated!! thank you for reading :)

disclaimer before i start: this is disgusting and of a sexual nature and i don’t know really how to brace you for this so i’m gonna just come out and say it (pun intended)

have any of you fellas noticed an increase in ejaculate volume on alyftrek? i used to shoot a lil half rope pre-kaftrio and on kaftrio it went up to 2-3 ropes. its only been a few days on alyftrek but i’ve already noticed an increase again

Hello, I’m 18m, born 2007. I have a double protein mutation, so I don’t have access to ivacaftor. And many other advanced modulators. My parents and doctors from a young age have told me that that I will live to see 60. Now that I’m older, and doing more research on my disease. Most sites are saying mid 30s. I don’t talk to my family about mental headspace and my fears of a short life as my parents (whenever I tell them about my sudden drop of lung function. And my worry’s about the future) tell me to stop whining, and worrying for my future like a bitch. My dad has been a plumber for well over 30 years now. And had a really tough childhood. My parents do everything health wise when it comes for getting me treatments. But don’t like talking about my personal worry’s. I don’t like to vent, but I guess here’s my little piss bottle of a whine.

So, I recently had an ultrasound to see if my liver is in good enough shape for Alyftrek, and it looks like that won't be happening as the test showed Heterogenous echogenic appearance of the liver parenchyma, consistent with chronic liver disease.

I'm making an appointment with a GI specialist so we can get a better perspective of what we're looking at... but I'm definitely pretty deflated. I'm cutting alcohol, which is fine. I'm not very reliant on it, but my health has been so good since getting on Trikafta. It feels like a step backward, and just another way in which I need to deal with this disease that never stops coming at you.

Wondering if anyone has experience dealing with liver disease from CF, and if there's any advice you have.

my husband and I just found out we are both carriers for CF. I’m currently 8 weeks 5 days pregnant and will be having a CVS test at 12 weeks 1 day.

if you’ve had a cvs test - how long did results take? specifically, how long did CF results take? I understand this might be longer then the typical chromosone check!

bonus points if your cvs test was done at mount Sinai in Toronto!

Hi! Lately i've been super hungry all the time. I know i'm not actually hungry because sometimes it'll be right after I had just eaten that I feel hungry again.

I've been meditating on this sensation and trying to understand it and I think it's because I haven't been taking my pancreatic enzyme for over a month. At first I thought it was due to my prefrontal cortex being overwhelmed and so my lizard brain was taking control. But then I started to realize my body probably thinks i'm malnurished and my diet probably isn't clearing the hunger signals completely. I know.... i'm crazy stupid....

But - I'm curious if anyone else notices the same thing?

I'm going to start taking them again and see if I notice a change.

Hello fellow CF'ers. I am 30M, roughly 25-22% lung function, 2xΔF508 here. Albuterol, Pulmozyme, Hypertonic Saline, the list goes on... you know better than anyone.

I apologize in advance if this is a very vent-y jumble as I am on a bit of an emotional rollercoaster right now. Wondering if anyone has had a similar experience or any advice to give.

A couple of hours ago I woke up for the day, and my airways are usually in their worst state after a long night's sleep (and a long night's buildup of mucus.) I put in my 110% effort to clear that gunk out as usual, but I just don't have the lung capacity nor the weight/muscle that I used to. It takes a lot out of me.

My heartrate goes up too high, I'm coughing with every fiber of my being, and I'm definitely going a little too hard. My family has told me to take it easier when doing this, and I know I need to. It just feels...well, you guys know how it feels. To FEEL that gunk in there, and feel like you should/could get that stuff out. But it just refuses to budge, and you gotta give that "elbow grease" so to speak.

Long story short, this is usually a manageable process. However, this time I could tell I had gone too far. I couldn't catch my breath, and I needed to stop and take a breather. Which I did. Problem is, heartrate was too high and I could tell I wasn't getting the air I needed.

I did everything in my power to take deep, slow breaths, slow my heartrate, sit down and relax, and catch my breath. I just physically could NOT catch my breath, and it was bad. Bad bad. No way to describe it other than I could tell I would not be getting to catch my breath in time, and I would die.

I panicked. Full-blown, i'm-in-the-middle-of-not-being-able-to-breathe-to-survive-and-now-it's-worse-because-i'm-panicking mode. If you've ever felt this...I'm sorry. Nobody should have to. I thought I was dead. No if's, and's or but's. I don't even know how I made it...I just kept trying to slow my breathing and catch up. Every step of the way my body was telling me "you're not gonna catch up, you're dead" and I could feel the light-headedness big-time. But somehow, I'm still here. Reeling from it, unsure how to process.

I guess I just needed to get this off my chest and share it with someone...I'm tired of dealing with this alone. Just been sitting here for a couple of hours, still clearing out mucus, albeit much more carefully. If you made it this far, thank you so much for reading and caring. Thank you.

About a week ago I made the switch to Alyftrek. While it’s definitely been harder on me physically, I was breathing better and had more energy on trikafta. I noticed something else

I always thought I had no mood issues on Trikafta (Orkambi was horrible) but after being on the Alyftrek one week I’m noticing I’m calmer, no more constant panic attacks (I still have anxiety always have.) I’m happier more, no depression. I think more positive and have a clearer head. I’m falling asleep faster (I used to fall asleep in tears)

It’s crazy to me that these issues were from Trikafta and I just never knew!

I am struggling with controlling my CFRD.

I do everything the docs tell me - carb counting, regular exercise, constant monitoring and yet my diabetes seems to have a mind of its own!

I even spent 2 weeks eating the exact same thing for breakfast, lunch and dinner, did the same amount of exercise everyday, and still my sugars reacted differently to the insulin everytime.

I know that everyone is different, and that internet strangers won't be able to fix me, but does anyone have any sort of tips or tricks or something that might help me get on top of it?

It's getting to the point where it is seriously affecting my mental health, and so I am reaching out for any and all advice!

Thank you!

Hey everyone,
I’m 19 I’m on Trikafta, and recently started my first professional career. Up until now, I’ve always felt pretty invincible. I play goalie, I hit the gym 3-4x a week, and I’ve always took pride in being able to push through anything.

But lately, that feeling of being untouchable is starting to fray. I’ve recently dropped a few pounds (136 down to 132) due to the stress and mental load of the new role. Seeing my ribs become more visible again has hit me harder than I expected, it’s a physical reminder that I’m not as bulletproof as I thought.

Adding to that, a family friend with CF passed away in his early 30s a few years ago. It’s been a massive reality check that has me spiraling a bit. I have a girlfriend who is a nursing student—she’s my world and I want to grow old with her. But lately, I’m nauseous just thinking about the future, and I’m finding it hard to balance the drive to succeed with the reality of this condition. I don’t want to just "get by"; I want to be there for the long haul with her.

I’m looking for some reassurance or advice on:

1. How do you deal with the anxiety of seeing a "worst-case scenario" play out in the community?

2. Does the fear of the "30s" ever quiet down once you find your rhythm again?

3. How do you stop the mental load from turning into a physical downward spiral when you’re feeling weak?

I’m bringing my girlfriend to my clinic appointment next week because I’m tired of carrying this fear alone. Any words of wisdom from those who have navigated these "existential" dips would mean a lot

I’ve been on Alyftrek 2 weeks now and some days I wake up feeling horrible (coughing (once with blood), body aches, headache, exhaustion, blood sugar swinging)

But some days I wake up breathing better then I did on Trikafta, no cough, stable blood sugar, full of energy.

I sure hope it swings more toward the latter soon!

I know everyone is different but how did yall feel after two weeks?

Urgently requesting guidance / assistance for my 14-year-old daughter, who has been diagnosed with cystic fibrosis since the age of 6. We live in Jamaica, where there is currently no specialized cystic fibrosis care available.

There is very little care for her condition as it's not a popular condition. Because if this there are no medications for CF available in Jamaica, although the doctors try their best, they are just not equipped. It has been a challenge to even get her digestive enzymes. I'm so confused and feel so alone. I have no source of information outside of this group for first-hand knowledge on how to tackle the different issues she has.

At this time, my daughter is hospitalized with a severe chest infection and low oxygen levels. Her condition has significantly worsened, and she has also developed scoliosis as a complication of her illness. In addition, she has experienced significant weight loss, which is very concerning.

Her current treatment is extremely limited and includes Ventolin (salbutamol), albuterol inhalers, and Bromhexine. She is currently on antibiotics and oxygen therapy.

She does not have consistent access to a nebulizer or specialized therapies commonly used in cystic fibrosis care. Follow-up care is also very limited, with clinic visits only every six months.

I am deeply concerned that without access to proper cystic fibrosis management—including appropriate medications, airway clearance support, nutritional guidance, and specialist oversight—her condition will continue to deteriorate.

I am reaching out to respectfully request any assistance, including:

Guidance on accessing appropriate cystic fibrosis care

Support in obtaining essential medications or equipment (such as a nebulizer)

Connection to specialists (including telemedicine options)

Information on any programs available for patients in countries with limited CF resources

I am willing to provide any additional medical records or documentation required.

Before I begin I will start with saying that I will talk to my dietitian about this but I was wondering if any of you CFers have tried an anti inflammatory diet? I also have PCOS on top of my cf so my poor belly got me looking pregnant 😅😂. Nothing wrong with being pregnant (in fact I want to be a mom one day), but the bloating is a lot and I’m tired of people asking me.

Anyways! Anyone had success with this? Noticing a difference?

Any CF girls had a partial hysterectomy? I’m strongly considering and would like some insight

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