r/CysticFibrosis

She's almost a year. Most days are fine but today I'm feeling really sad again about her diagnosis.

She's modulator eligible and pancreatic sufficient, so two 'positive' traits. But honestly, I still worry about her future a lot.

We're just in the middle of our first winter (southern hemisphere) and its been rough. Older sibling in daycare has brought bugs home, we just had our first stint in hospital for IV antibiotics.

I'm really really banking on these modulators to work for her. In my mind they'll fix everything. In my mind research will go on and by the time she's a teen there will be even better treatments. But I know that might not be realistic and it's really difficult to cope with. I read posts of people on modulators who still struggle a lot (although they would have started modulators as adults, not toddlers).

I don't even know what I want from this. Solidarity?

Edit: Well that was anti-climactic. But at least I don't have it anymore, now it is just smooth selling of healing over the next three months now they say it's supposed to close up on its own, but they want to give it three months for it heal up on its own as my next CF appointment is in three months anyways so let's hope it actually does heal up by itself by then.

Original: Well if you remember my most recent post on here from two weeks ago you would've known that I highly anticipated this day but it's currently 6:22 AM and my appointment is 11 AM to finally get this thing removed after 25 years (give or take a couple years) obviously take away a couple years being 25 and all some more like take away a couple years to make it to 23 years but tomato tomato.

So here we are finally getting it removed. I'm not gonna lie I'm nervous, I mean when you go 23 to 25 years with it in basically your entire life it's like you're losing a part of you permanently but like I said the other post I haven't used it since November 2025 so on a technicality basis it's already gone, it's just needing to be permanently removed at this point, obviously they have it listed as a "evaluation" but then they go ahead and say the actual procedure might take 3 to 4 hours on the actual letter that I got including checking mychart for the actual appointment details which obviously tells me that it's more of a removal than just in an evaluation, probably to actually see how bad it is so they don't go in blind. so hopefully after this is set and done this part of the journey work be over for once, but like always it's just a small part of the journey on a bigger journey.

I’ve only been admitted once in my life and this is the second time now. I have some basic questions I need answered.

1. I am really struggling with IV antibiotics. It’s extremely uncomfortable and I can’t handle it. I am getting it in the spot where you would normally have blood taken, the crook of your arm. It’s just unbelievably sore. They tried it in each arm and had to remove it both times. They tried at the top middle of my arm which was even worse. I didn’t even attempt my hands. I’m considering a picc line like I had at my last admission but if I can avoid it that’d be good. Any ideas to cope?
2. None of the nurses or staff at this hospital wear masks in my room. Sometimes they don’t wear gloves or they aren’t like… visibly fresh gloves (like if they’re just popping in) and they never really put on their little aprons like they did at my first hospital stay. Is this acceptable or standard?
3. The hospital ward I’m in is not solely for CF patients. It has cancer patients, pneumonia patients, COPD, etc. It also has other CF patients. I’m in a room by myself though. Is this normal?

So I recently got divorced from my hs sweetheart. Knew all about my cf early on all the shit. Realized we got married cause I was dying and then when I didn’t things just kinda fell apart as we got older.. tragic I know but nonetheless. I’m starting to date again. How do you bring it up. With the first coughing fit? Before the first date? I sit around 75% and am pretty active but I do have a consistent cough. Also just like sex. Again only 1 partner. Idk this is weird. Also for those that have been divorced how do you tell your care team. I have an appointment next week and I’m embarrassed as shit to tell them. I know it doesn’t matter but like ugh why.

I’ve been doing one or two treatments a day for years now but I decided to stop 2 months ago and I got the highest pft score I’ve ever gotten (115) I’m kind of dumbfounded about this anybody have the same kind of result?

Has anyone came off creon or enzymes since being in TRIKAFTA? My daughters CF team just informed me 2 days ago to discontinue all use of digestive enzymes saying mt daughters stool test is coming back at a level of 302 which is normal. However I’m very concerned about stopping enzymes she’s been on them her whole life and she’s 5, and she’s non verbal so she can’t tell me how she’s feeling. Right now she’s severely comstioated, so I’m not sure if it could have been because of the enzymes. For the record she’s been on TRIKAFTA for 2.5 years.

Hello all.

I’m writing a novel with a character who has CF in honor of my best friend who passed away from it.

I need help understanding what COVID was like for those with CF — specifically, did you still go to the hospital for treatment during the peak of the virus? If you were hospitalized at that time, did they keep you there, or send you home?

Any insight is appreciated! Thank you for sharing your experiences.

My names Kevin and I've been dealing with massive food sensitives(10 foods), chronic headaches, chronic fatigue(barrly able to work), weird mental health issues and it's caused my MCAS.MCAS is absolutely life limiting and wanted to see if there's anyone else who has CF that also has histamine/MCAS issues. Low histmajne Diet, cromolyn sodium, anti-histamines and supplements help but my life is so limited and it's so depressing. Starting to explore peptides before I turn to biologics. It's hard enough to deal with CF and sometimes wonder if complications of my CF have caused this horrible condition.

I feel super defeated

Best

Hello all,

During my next CF appointment I will be discussing getting a G-Tube.

I'm looking specifically for experiences of those in which have had a G-Tube placed with local anesthesia (numbing) Only and an idea of how that process went, recovery etc?

Thanks!

I haven’t passed a solid stool in about six days. My CF doctor says it’s DIOS. I have been taking laxatives on laxatives on laxatives. Linzess? Check. Miralax? Check. Senna? Check. Thankfully, the nausea and indigestion that were present the first few days have largely dissipated, but I’m ready for this to be over. Can anyone else who has experienced this provide any suggestions or things that got them regular again?

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

Hello everyone! I’m Austin, and I’m 25 years old living with Cystic Fibrosis. I’m starting this fundraiser because the weight of my school loans and medical bills has finally caught up with me, and I’m struggling to keep up. Even though I have a good job, recent challenges have made it harder to stay on top of everything, and it has become overwhelming trying to manage these responsibilities on my own.

The support from this fundraiser will help me pay down my loans and cover day-to-day living expenses while I work through this difficult time. Asking for help is not easy for me, but I know I can’t do this alone right now. Any support, whether through a donation or by sharing my fundraiser, would mean so much to me and help take some of the pressure off as I try to regain stability.

Thank you to anyone who is willing to help me. Your kindness, support, and encouragement truly mean a lot, and I’m deeply grateful for anything you can give.

i feel kind of dumb for posting this (especially since i’m 26) but i need to rant, as i seriously have been having a rough time recently. i live with my family, and everybody smokes marijuana inside. but it’s gotten to the point it just absolutely pisses me the fuck off. i cant even escape the smoke outside because the entire house is coated in smoke. i live with a sibling who is an ex meth user but i suspect they are smoking again.

i’ve tried multiple times trying to address it but nobody listens. i’ve brought it up to my care team before but i dont know what can really be done as im not a kid anymore. but after leaving the hospital today and coming home to that im starting to realize i cant fucking take it anymore. i want to leave but i can’t fucking breathe. i can’t do what i need to do for myself because it’s all so exhausting. working full time hardly pays for anything these days and i never know when im going to have an exacerbation which could completely derail my financial situation.

any advice on what to do here would be appreciated. i’ve been a long time lurker here and i figured one of you guys might have some experience with this.

My 9 year old is on Trykafta right now. He's got a relatively mild case, Del508 and RH117 7T, never been hospitalized.

He qualifies for Alyftrek, but hates needles and so doesn't want to switch medications because that would involve blood tests (quarterly, I think) for a year.

People who have switched, how much better is it? Is it worth disappointing a kid? What would you suggest is best for his health?

I've been very underweight for most of my life, but the past year I literally haven't gained a kilo no matter how hard I try. I've tried meal plans and supplements but I still can't gain weight.

An NG tube has been talked about by my team (and another team) for 4ish years, I've usually always been able to gain some weight to teeter me over the edge and not need one.

I'm gonna be admitted soon and I think I want to ask about having an NG tube, but I'm pretty nervous. So I just wanted to ask a few questions for people who have had NG tubes in before.

Did it make you feel as full as a regular meal would? I struggle with feeling full so it makes it hard to finish a meal.

When it gets removed, were you able to maintain that weight or did you have to have another NG tube to maintain it?

If it did bring up your weight, did you feel better and less prone to infection?

Just to add I'm also not on any modulator

As the title suggests I want to lock in and gain weight. I’m a 103 pound girl, I eat terribly actually with only 1-2 Buldak ramens a day and maybe some chicken strips later, despite me eating terribly due to food not seeming appetizing to me I’m willing to lock in and eat more to gain weight I’ve always been below my bmi and I wanna try and change it. I don’t like avocado btw unless in sushi or hidden, I do
Like guacamole tho.. advice and meal plans welcome thanks.

I was genotyped in 1997 and was told that my mutations are DF508 and G542X. So when I was looking back through some visit notes I was surprised to see B542X listed as one of my mutations. So I emailed my team to have them fix it.

Well....one of the docs called me. He remembered hunting through my charts and records 7 years ago when I started going to my current clinic because he saw B542X in there. He looked at everything he could get from my 2 previous adult CF centers and they had something similar to B542X in my records. One clinic had B5442X, the other had B524X.

He could see the date that my genotyping was done and that it was at my last children's clinic, but he couldn't get the results of the original test because it's almost 30 years old now. And it turns out that B542X actually IS a mutation but he can only find a single article about it from 1992 in Russia.

Now, the chances of me having B542X are astronomical. G542X is the second most common mutation and prevelent in Ashkanazi Jews, and I have have Ashkanazi ancestors. But without retesting me or getting the results of that original test there's just isn't any way to know 100%.

So even though we know that it it is 99.9999% likely that I have G542X we both really want to know for sure! They're going to see if they can get the test results from 1997. I'm going to see if there is a way to get my brother's results but that could be tricky because he died in 2018 so he obviously can't sign a release. If none of that works I'll try to get retested but it could be too expensive. 🥴

Hey everyone, I’m from Australia, more specifically Melbourne. In January i’ll be going up to Cairns for about 3 weeks to see family. Normally we would only ever go up during the dry season however next year will be different. Was wondering for anyone else who lives in a tropical environment, how do you go coping with the very humidity?

Hi all, I’m going back to hospital for two weeks but this time I’m bringing a ps5. Problem is I don’t know what I should play, very annoyed because I recently finished Skyrim and fallout 4. I have looked in to the new mortal shell 2 but not sure if I want to play a souls like I’m kinda 50/50 on those games, so any suggestions would be appreciated

Thank you all😊

I have such a hard time making myself do my vest. I’ll literally just sit there and stare at it. I know I need to do it and I know how important it is, but for some reason actually starting feels impossible.

It feels like it’s gotten harder as I’ve gotten older too. I’ll think “I need to do my vest” over and over and still just not do it.

I’ve heard the advice about watching a show or YouTube, coloring, or doing something to distract yourself while you do it, but even that can feel like too much sometimes. I can’t even get myself to put the vest on.

My lungs are actually hurting right now and I’ve been wheezing more than usual, so I know I really need to be doing my treatments. I just feel kind of numb to it at this point, even though I know my lungs need it.

I’ve also been dealing with depression lately, which has made taking care of myself in general harder.

For people who have dealt with this, how did you get past that mental block? I’m not looking for someone to tell me that I need to do my treatments. I know. I just want to know what actually helped you get yourself to start when you knew you needed to but couldn’t.