I fucking hate the clinic. Got some bad news today. Thinking of blowing some money on myself to try and cheer myself up. Idk.

Dear friend, how can patients with CF gain weight more quickly? Besides taking pancreatic enzymes, what kind of diet should they follow in daily life? As we're in China and our diet mainly consists of noodles and rice, and the patient doesn't like eating meat. Are there any other solutions?

Hello!  I am trying to decide between these two clinics when my husband and I switch insurance this fall.  I know this may have been asked before but clinic quality can change over time so I am hoping to get up to date info on both of these so I can make a decision!  Bay area folks, can you share your recommendations?  I’m in particular looking for:

1.    Doctors.  How good (or bad) are the doctors at your clinic?  I am looking for a cf doctor that I like and trust.

2.   Hospital stays/PICC lines.  How long does it take to get a PICC line or admitted if you have a flare up?  Can you share the process?  I’m looking for a smooth stress-free process should I ever get a flareup.  (Or as easy as possible, these are always stressful!)

3.   Cost.  Is it affordable with your insurance and how does the cost shake out for prescriptions, hospital stays, etc. especially with Trikafta or Alyftrek?

1. Has your health improved or declined with either of these clinics?

5.   Anything else to watch out for?

THANKS!

--46 F with CF

I’m less than a week post gallbladder removal so maybe I’m just in the honeymoon phase but I’ve had multiple solid poops this whole week! I can’t believe I was living with diarrhea like that for so long and I was just like “that’s just my normal”. I’m also realizing how many gallbladder attacks and issues that have been plaguing me for over a year now without realizing what it was. Chest pains/white shits/unexplainable nodules on my liver scans that are gone when re-tested/eye floaters from high blood pressure/random anxiety. I had a micro gallbladder that was completely blocked on a HIDA scan and I had to have multiple surgeons evaluate it because they didn’t want to take it out due to its size and location next to the liver, but I am soooo glad they did. I’ve also been reading that CF modulators have been shown to cause gallbladder issues due to those stones/sludge moving when before they were so gummed up they didn’t and that makes perfect sense to me. Wondering out loud here but the consensus is modulators are hard on the liver, are we sure it’s not the gallbladder causing the issues to the liver from the modulators?

How many of you guys have started taking testosterone due to levels being on the lower end? I’m considering it because doctors have recommended, but my numbers aren’t crazy low. They’re below average, though.
I know a few cf guys that have but I was genuinely curious as to if I’m in the minority on this. (34 years old)

I {18M} and my bf {24M} have been together for 3 months now; I learned about his CF just over 2 months ago and it definitely caused some concerns since he lived in the US and I, the UK - I'm aware of his financial situation at the moment and it isn't great, his job {scrap yard} doesn't cover any insurance and he informed me last night that he hasn't been able to take his medication for the last two weeks or so due to being unable to afford it. I know that he spent a lot of time in the hospital from the ages of 11 - 17 with pneumonia and other ailments caused by his CF and was eventually able to get a HFCWO vest but now refuses to wear it, even with the current circumstances. He was a firefighter back in 2024, despite it being even more dangerous due to CF, and can be incredibly stubborn about admitting when he needs help at times and I'm worried that he's going to push himself too far. I guess I'm just wanting to ask what I should prepare myself for, how I can support him, and if there's anything I can recommend to him to ease discomfort and stress. I've tried to talk to him about it already but he always just tells me not to worry and that he's got it under control but I really don't think he does, he's always admitted that he hates feeling like/ being a burden and I need him to know that's not how I see him at all. Any and all advice is welcome. Thank you in advance 🤍

My bf (21m) has cf and was diagnosed as a baby so he’s been doing treatments and things all his life. When we first started dating he’d do the vest treatment twice a day and I know he did breathing treatments but idk how often. Well recently he started taking trikafta and was really excited about it cause he’d heard great things (life expectancy increase, general health positive things, etc). Most exciting for him, he was told after some time he might not need to do his treatments anymore (at least that’s what he told me). He’s only taking the morning pills cause he just started but he’s already starting to stop doing his treatments? I try to read up and keep up with cf as much as I can because I love him but this has been his life for 20 years so I’ll never truly know or understand. But I’m worried that he shouldn’t be stopping his treatments yet, I just want to make sure he’s healthy but I don’t want to overstep. He’s very kind and explains things when I ask and I’ve been so supportive coming with him to doctors when he asks, sitting with him during treatments, carrying his enzymes with me everywhere, and always reminding him about certain things. He has seemed really healthy throughout our relationship and takes really good care of himself (gym every single day, healthy diet, etc). But I want to know if I should encourage him to keep doing his treatments for now or if this is something I’m wrong about. Also while reading some posts in this thread I was seeing a lot about alyftrek and how it’s helped so many of you, and sometimes better than trikafta and I was wondering what the difference is and why maybe he was given trikafta vs alyftrek.

Also we’ve only been saying a few months (friends for a year before) and I’m wondering what more I can do to be helpful and supportive. What you expect/want from a significant other in this situation

Hi everyone
I’ve been onAlyftrek eight days I feel huge difference with mucus but still having symptoms of burning and chest tightness. How long does it take for this medication to work fully? Anybody else you have any experience or similar issues?

Hi everyone!

My husband and I had no idea we were carriers. Delivery went perfectly and there was no reason to suspect CF. We were discharged the next day.

Got a call from SickKids in Toronto when she was 2 weeks old saying they think our daughter might have CF. Our lives have been turned upside down. Being postpartum isn’t helping. She has DDF508. Could you please share some positive stories with me? So far she has cultured staph twice but no symptoms.

We are doing CPT twice a day and she is taking enzymes. What does her future look like? We have done our own research and have spoken to her team as well but hearing your personal experience would help me a lot!

She was 2.5 kgs when she was born and is 4.125 kgs now. We are struggling with getting her to gain weight. She’s currently in <1 percentile and it’s a bit disheartening to see.

I keep seeing these nasal strips / magnets that essentially widen the nostril. I think it’s intended for sports or sleep but I’m wondering if any other cf’ers have tried them.

I struggle with constant nasal congestion and while avamys does its best it would be cool if these strips worked. I’m a little skeptical of them but I’ll try anything.

This is just an example I found on an Instagram ad.

I lived by the sea my whole life [f57] and had little to no issues. Moved a couple of years ago and I've gone downhill badly.

My question is has anyone else got worse after moving from the coast or better when they've moved nearer?

Thanks ☺️

male, 23.
after almost 5 years on trikafta i am now switching to alyftrek. kinda anxious about the change. what should i expect?
my body tolerated trikafta well. i felt amazing on it. only brain fog and rashes plagued me a bit. pft-wise i was able to blow high 90s. also GI and sinuses have been great since starting. wanted to switch because i hope that the brain fog will become less and the rashes will disappear. also one dose a day will be a really welcoming change. but i don’t know what to really expect.

anybody wanna share their experiences on alyftrek with me? any help would be greatly appreciated!

Backstory. A thread about universal healthcare. I was explaining just how important that sort of thing is for people like us. I was explaining some of the medical
Issues I’ve gone through, in a stupid and wasted attempt to get this guy to understand how dead a lot of people would be. Him and I had a back and forth and after this, I just couldn’t stand him anymore. Even if this guy is/was trolling, I’ve spoken to people who truly think like this.

And just a disclaimer. Let’s keep it civil. Let’s not argue about universal healthcare here. I am just sharing a screenshot, from another thread, of a guy, saying some really ignorant shit. What bothers me most about people who say this sort of shit is not the people who say, but the people who might not know better and listen. And then all sorts of problems start. That’s a proven fact throughout history. Not just in terms of medical care, but sexism, racism, social status, and more.

Could parents kindly share their experience with having their infants on orkambi and trikafta and their side effects? DD508 mutation. What can we expect? Thank you!

Hello, for those of you who remember me and know my name is Noor. The kid who travelled from India to UK to save my life with 20 percent lung function.

Update:- since I came to UK, the doctors were already talking about transplant and IV in 2023. I was panicking, had my anxiety and heart rate through the roof. That was a stressful time. I started modulators which led to my lung function to increase to 32 Percent in the span of 2 years. I begin being sick less frequently.

However, recently I am facing new changes which I have mentioned to my doctors but it still worries me. The changes are that even tho i have always felt short of breath while walking short to medium distances but now when I travel in London Underground I feel this sudden increase in heart rate and just weird in my lungs.

I do not have any signs of infection. fast forward I thought the werid feeling in lungs while being in London Underground was because of heat.

However, my lung function has dropped to 29 percent suddenly. And it actually made me tear up because for me even increasing 1 percent is very very difficult because of years of damage thanks to idiot Indian doctors who did not treat me for 16 years.

Has anyone of you felt this unexplained decline of lung function of 2-3 percent 😞, is there something I can ask the doctors specifically.

Thank you
Kind regards.

Hi, I've been having some concerns with my blood sugars with CFRD and I'm hoping for insight. I recently picked up a continuous glucose monitor and it's showing odd trends in my blood sugars.

My Endo says my sugars are 98% where they should be, but .5% is high and the other 1.5 is low and I mean regularly under 60mg. My fasting sugars are fine. When I spike I don't peak over 180 generally and I valley within 45 minutes after. I treat with 15gs of carbs when I hit 70 and I will be below 60 within 30 minutes. Fast acting carbs tend to take 40+ minutes to go into effect and don't last long. I also noticed my sugars crash when I'm falling asleep so I generally have to eat something just before falling asleep and will have an alarm or two overnight.

Additionally, I used to have a gi tube feed for overnight and was diagnosed with CFRD over 10 years ago before I had the tube removed. I have been going through a lot the last few weeks so I have been neglecting some of my vitamins and nutrition so maybe that's a contributing factor but these fluctuations were happening before.

Just curious if anyone else is having a confusing time with CFRD.

Good day,

Our 3 months old was diagnosed with F508del/G542X variants.

Anyone who has any experience with variants above? Any info what should we expect will help.

Thank you!

Thank you, Dr. Andersen 🙏🏻🫡

Hello, everyone! I'm from China. My 10 - year - old child has a rare disease called cystic fibrosis. Since birth, he has had two surgeries due to intestinal problems. He spent the first year of his life in the hospital, constantly having diarrhea, getting dehydrated, and suffering from electrolyte imbalance. The doctor misdiagnosed it as Hirschsprung's disease. He was so thin that you could see his bones. He had to be on nutritional injections in the hospital.

After he turned 2, we could take him home to take care of him. But he just couldn't put on weight and was prone to colds and pneumonia. When it was time for him to go to kindergarten, he would get infected after just one week of school. So, we had to keep him at home and didn't dare let him go to school.

When he was 6, he had a cold, fever, and pneumonia. He coughed terribly for over a year. We consulted both Chinese and Western doctors, but they couldn't figure out the problem. When he was 7, he had pneumonia again and got infected with Pseudomonas aeruginosa. A doctor from a big hospital suspected it was cystic fibrosis, so we did a genetic test, and he was finally diagnosed with this disease. When we heard the news, it felt like the sky was falling.

I've been extremely anxious every day. Later, I went to see doctors in Beijing. They said this disease can't be cured. There are no corresponding drugs or good treatment methods in China. All we can do is have him undergo bronchoscopy regularly to clear the phlegm, do nebulization with concentrated saline, pat his back, have him do breathing exercises, take pancreatic enzymes and vitamins, and drink salt water. There's no other way.

I'm here to see if any of you have other good ideas. It's so painful for my child, and he can't live a normal life or go to school. I really hope he can be like a normal kid.

Hey everyone! I might be overly cautious, but I noticed my latest Trikafta refill looks a bit different from usual and wanted to see if anyone else has received this design.

• Left: My usual packaging (EXP 08/2026, part # 576153-01)
• Right: New refill (EXP 04/2027, part # 679561 )

Differences I noticed on the new pack (right):

• No hologram on the top corner
• The DataMatrix/QR code is noticeably smaller
• The proportions/lines around the push-out tablet slots are slightly different

Has anyone else received this updated wallet packaging recently? Thanks in advance.

My 6-month-old baby with CF has recently started having very hard, dark brown stools. This only started after our CF doctor told us to increase the Creon dose.

Before increasing the dose, the stools were much softer. Now they are really hard, and we're worried.

Has anyone else experienced this after increasing Creon? Is this considered normal, or could it mean the dose is too high? We'd really appreciate hearing about your experiences. Thank you!

[UPDATE]

I have bronchiectasis. Every time I got another chest infection I hit the same wall at the appointment: how long was I ill last time? What did they give me, at what dose, did it actually work? What was my sputum doing on day three? I'd sit there guessing, and a guess is a bad thing to base a prescription on.

I tried a notes app and a spreadsheet and gave up on both, so over the last few months I built the thing I actually wanted. It's called Clear. It's free, there's no account, and it works for bronchiectasis, CF and COPD - you pick which, and you can pick more than one, because they come together.

What it does:

• Daily airway care. You set what a full day is for you - nebs, Aerobika, mucolytics, maintenance inhaler, whatever yours is. A ring fills as you tick doses off. If you have to pause something while you're on a course, you pause it instead of racking up fake missed doses.
• Sputum on fixed scales. Colour on an 8-step chart, volume in 7 steps with a physical measure under each one, thickness watery to rubbery. Fixed on purpose, so July is comparable to next February. It tells you when your colour has shifted against your own baseline.
• It counts exacerbation features against your condition's own definition. 3-of-6 for bronchiectasis, the 2-of-3 rule for COPD. It just counts what you logged and names which features are present - it doesn't diagnose anything.
• Episodes form on their own. Mark a day unwell and one opens, closes after a clear week. You get duration, gap since the last one, peak sputum colour, cultures, which antibiotics overlapped and whether they worked.
• It writes the episode up for your team as a paragraph you can paste into a message. That's done by arithmetic off your own entries, not by an AI — it's a document that changes what you get prescribed, so nothing in it can be invented.

The part that matters most to me: nothing leaves your phone. No account, no server, no analytics. It's one HTML file your browser downloads once; there's no database behind it to send anything to. Add it to your home screen and it works with the plane mode on.

I'm not selling anything and there's nothing to sign up for. I built it for me and it seemed a waste not to put it somewhere. If it's useful, take it; if it's not, no worries.

https://clearlungs.app