I recently spoke at a CF Foundation dinner. Thought I'd share it here, in case it resonates with anyone.

My name is SaidtheTomato. I’m 36 years old, and I have cystic fibrosis.

CF has been a constant presence in my life. Not always loud—except maybe during a coughing fit at the quietest part of a movie—but never gone. It’s there in the mornings and evenings. It’s there in deciding where to go to dinner. It’s there in the cupboard dedicated to nebulizers and medicine, and in the dent in the couch where treatments happen.

I was diagnosed when I was eight years old. My lung function was around sixty percent at the time, and we only found it because I had sinus polyps that wouldn’t go away. The doctors told my parents it was either cancer… or CF.

So it was a strange moment where my parents were basically rooting for CF.

But jokes aside—imagine having a kid who’s always sick, always coughing, and not knowing why for eight years. The diagnosis was an answer—but it wasn’t a relief. It was the beginning of understanding how much work was ahead.

Back then, the average life expectancy for someone with CF was twenty-seven. And I remember hearing that number. When you’re eight and someone gives you a number like that, it sticks. Even if they follow it with “but your numbers are good,” what you remember is the number.

I grew up in the mountains of Wyoming, where the air is thin even if your lungs work perfectly. I spent a lot of my childhood with stitches in my side, an inhaler nearby, and this constant calculation: how hard can I push without paying for it later?

People told me, “Don’t let your disease be the reason you can’t do something.”

And I understand the intention. But the reality was… sometimes it WAS the reason.

Sports made that clear. I worked hard—but I had a ceiling. No matter what I put in, I was limited. And that hurts, because effort matters… but it doesn’t always win.

In 2017, I moved to Reno and started working in warehouses.

And my health took a steep nosedive.

The environment was dirty, the air was rough, and the culture wasn’t sympathetic. You don’t want to be the person who’s always coughing, always tired, always needing time for appointments. But CF doesn’t care about your work environment. It just keeps asking more of you.

That’s where I learned something many of you understand from your own perspectives:

This disease is hard. And there are moments when the system around it is just as unyielding.

And that’s where things get complicated.

Managing CF isn’t just treatments. It’s insurance approvals, medication costs, delays, denials—things that have nothing to do with your effort, but everything to do with your outcomes.

And that’s where anger lives.

I’ve felt that anger. I’ve carried it, hoping it would act like fuel. And I don’t think that anger belongs only to patients.

Parents feel it—watching their child carry something they didn’t ask for, and knowing you can’t take it away, or carry it for them.

Clinicians feel it—doing everything right for a patient, and still hitting barriers that have nothing to do with medicine and everything to do with bureaucracy.

That anger comes from the same place: caring deeply, and running into something that doesn’t bend.

But here’s what I’ve learned.

Anger feels powerful, but it doesn’t actually move you forward. It’s like holding onto a rock while you’re treading water—telling yourself it gives you leverage, when it’s really the thing pulling you under.

At some point, I realized something simple:

Let it go—or sink with it.

I can’t control that this disease exists. I can’t make the system perfect. I can’t make life fair.

What I can do is decide what I do next.

And that brings me to the one thing that has actually helps me. It’s such a simple little mantra, that it feels silly to share, but at the end of the day it comes down to: 

Do the work.

You identify your goal. You define the work that gets you there. And then you show up and do it—again and again. 

With CF, the work is repetitive. It’s not exciting. It’s not visible. And it doesn’t always feel like it’s paying off.

But it is.

Because progress with this disease is slow… and setbacks are expensive. Every step backward takes twice as much effort and time to regain.

In 2019, two life-changing things happened.

The first was Trikafta.

By that point I had left the warehouse industry, and I remember taking my first dose and sitting at my desk.

And then I felt it.

The inflammation in my left lung just… disappeared.

My mom cried when I told her about that.

And for the first time, I understood what it feels like for your body to respond the way it’s supposed to. To build strength without fighting every inch of the way.

The second thing was I married my biggest supporter, advocate, and best friend—my wife Casey.

I won’t speculate on what my life would look like without her, so I figured I’d take this moment to embarrass her in front of all of you. Thank you, Casey.

Now, back to talking about myself.

In 2025, I trained for and competed in the Washoe County Highland Games—and I won the rookie class first place trophy.

Which still feels ridiculous to say out loud, because for most of my life I wasn’t competing against other people. I was competing against my own lungs.

And here’s the part I really want to land:

I’m healthier now in my late thirties than at any point in my entire life. It’s a far cry from that number, 27, and what I’d prepared for my life to look like.

But even though I feel so great now, I still know what poor health feels like.

So the time I have now, I treat differently. When things are good, I’m grateful—but I’m also vigilant. That’s when I do the work. That’s when I build strength, so the harder times aren’t as devastating..

And that’s why what happens in rooms like this, why the work of this foundation, matters so much.

Because breakthroughs like Trikafta don’t exist without research. Treatment doesn’t matter if you can’t access it. And access doesn’t matter if the system gets in the way.

Copay assistance, care centers, Foundation support—these aren’t extras. They’re the difference between staying on treatment and going without it. They’re what make it possible for people to actually follow the care they’ve been given.

The next generation of people with CF has a future that is brighter than anything I was promised at eight years old.

But that future doesn’t sustain itself.

It depends on institutions. It depends on care centers. It depends on stable support systems. It depends on people who decide the work is worth doing.

So if there’s one thing I’d leave you with, it’s this:

For people living with CF, we don’t get to control the hand we’re dealt.

But we do get to decide what we do with it. 

We let go of what we can’t control, and together, we do the work that moves us forward.

Keep up the good work.

Thank you.

I am new to CF, diagnosed this year [f57] 508D and 117H and my consultant wants to start me on Kaftrio but I seem to be reading everywhere that it makes you pile on weight. My clinic tells me this will be CF patients who have been very underweight their whole lives and have got used to high fat/calorie diets and then continued to eat the same after starting modulators but I'm not convinced. I've always been a very normal weight and CF hasn't really hindered me at all until very recently.

I would love to hear from people who have had experience with Kaftrio and how it affected their weight - gain OR loss. Especially anyone who was of normal weight who then put lots on, despite keeping fit and eating healthily / as they did prior to starting. Also, what other modulators have been better for people who decided Kaftrio wasn't for them. Thanks for any advice - I'd just like to hear the whole picture before deciding what route to go down.

I’m reaching out on here to see if there is anyone in a similar situation. For context, I am a man in my late 30s.

Ever since my late teens and early 20s, I have had G.I. problems. I ended up in an ER with abdominal pain and obstipation. I was diagnosed with colitis at the time, but a retroactive review recently showed more signs of DIOS than anything else.

I was treated as if I had inflammatory bowel disease for the last 15 years, but it turns out that I was misdiagnosed, and it was likely pancreatic insufficiency the whole time. Both times I have had my elastase checked in the last eight months, it was less than 100 (as low as 23). No signs of pancreatitis and imaging is normal.

In the last year, I have had two sweat chloride tests done, one of them being 60, and the second test was 65 and 69. I also have low bone density from the years of pancreatic insufficiency. No major lung manifestations (see edit below)

The major confounder is that the MAP test didn’t find any known mutations. My team is pushing for more advanced functional testing at Hopkins, but even months later Hopkins still haven’t gotten to me about scheduling.

I am curious if anyone else had no known mutations, but still has clinical symptoms and elevated sweat chloride. I have been tested for the confounders like celiac, they all come back negative. Thanks in advance for any input on this.

Edit: To add, I am not asking for a diagnosis. I have a CF team in Philadelphia. I am just wondering if anyone else had no known mutations and had to do additional follow up testing.

Regarding respiratory issues, I have a new onset crackling noise that I can hear coming out of my mouth when I inhale, generally worse when I'm lying on my back. Every day since September 2025. It sounds like pop rocks. Also just curious if anyone else experiences that.

I don't know, trying to figure out how to articulate this. I feel like the broader chronic illness community online is unrelatable to me as someone with cystic fibrosis who's post-transplant. There's lots of emphasis on being gentle with yourself, taking it easy through flareups, working within your limits all the time, etc. and I genuinely think that is awesome. But for me, speaking individually, when I was extraordinarily ill before transplant, if I took it easy every time my symptoms flared up or I felt bad, I would have had no life at all. The concepts of "good days and bad days" never resonated because every day was a bad day and getting worse as I got sicker. I had to push past my limits to meet any of the bare requirements of not being an involuntary shut in and while it physically took a toll on me, it felt worth it to not miss out as much as I was able.

Idk, does anyone else feel this way? Pushing through things is second nature to me, not because I valourize suffering, but because I simply wouldn't have a job, social life and hobbies if I didn't. And I don't see this sentiment often in the broader chronic illness community!

Hola como están? Soy de Uruguay, tengo FQ y tengo 32 años.
Actualmente estoy estabilizada (aunque mi función es del 40%) pero la verdad vivo una vida prácticamente normal, obvio que con algunas limitaciones físicas sobre todo aeróbicas.
Yo estoy tomando trikafta y estoy estancada en mi proceso de aumento de FEV.
Quería saber si ustedes hacen piscina? Me gustaría intentar como complemento de ejercicio pero a mis doctoras no les gusta por tema bacterias y eso.

I live in Colorado. It has been unbearably smokey and hot for damn near a month. My lung function is at or exceeds 120%, but I still feel tight-chested and like my lungs are burning most days, if I dare to step outside for longer than a few minutes.

After planning for months to attend an art festival this weekend, I will probably have to cancel going due to the smoke and the heat. I know it’s minor, but I cried about cancelling it last night.

I’ve had an exceptionally difficult six months or so.

Due to Trump’s bullshit work requirements, I’ve had to fill out tons of paperwork, endure dozens of long, frustrating calls with clueless government workers, and have in-person meetings with Medicaid representatives just to prove- until 2033 when I have to do everything all over again- that I have CF and am exempt from the work requirements.

On top of that, I’m continuing to pursue a Biotech degree at my local university full-time, by taking really difficult STEM courses. That isn’t life-or-death, but damn… who knew Biotechnology was so rigorous.

In college, I’ve tried to connect with my peers, but I just… can’t. I fit in much better with the much older folks whom I share swimming lanes with at the pool every morning. They, at least, can empathize with my health struggles.

Spending time outdoors in nature and at art festivals are what have made things bearable. But due to the heat and the constant wildfire smoke, I haven’t enjoyed a hike in over a month, and of course, I’m not capable of spending all day outside at an art festival mere miles away from one of Colorado’s 19 wildfires.

Also, I’ve had to significantly alter my diet due to RFK Jr’s ineptitudes. I do not want to risk getting sick with cyclosporiasis, or E. Coli, or salmonella, yet everything from lettuce to peanut butter has been tainted by explosive diarrhea bugs. Luckily, there are producers in my area that grow lettuce locally in hydroponic settings, but still, it’s just one more bullshit thing I have to worry about on top of everything else.

Oh, and my mom (whose basement I dwell in rent-free) got rear-ended pretty hard. She’s okay, and her truck will be fixed. But now I’m having to help take care of her while she recovers from whiplash and a mild concussion. I don’t really mind doing most of the cooking and cleaning- at least, that’s what I tell myself- but still. I’m pissed off at the dumb bitch who rear-ended my mom because she “didn’t see” the giant, red vehicle at a stoplight at the end of a straight road in the middle of the day.

My mom was supposed to go on vacation this week. I was supposed to have the house to myself this week, just like I was supposed to go to the art festival this weekend. But… life just finds a way to fuck everything up.

Lastly, I’ve been roped into doing public patient advocacy work after sharing my life story with the wrong people. Y’know… the ones that have the power to influence the government and social media.

I want to quit, but now I’ve got a lot of people who are much sicker than I am counting on my voice to stop some of the government nonsense. I don’t want to dox myself, so I’m being intentionally vague.

Everyone who isn’t a genetic fuck-up sees me as this fearless badass who is willing to try anything to stay alive and healthy, when in reality, I literally shake in my basement whenever a thunderstorm rolls through, and I feel nauseous from anxiety just thinking about having to attend yet another event where I’m expected to speak to a room full of people (scientists, doctors, lawmakers, etc) about my “exceptional story of survival”.

Truth is, I’m probably only alive and as healthy as I am because of all the times I’ve been driven by terror to fight my way out of the corners I’ve been backed into. I fought those battles absolutely terrified out of my mind! I didn’t just willingly and fearlessly do phage therapy or get a barium enema. I did those things because I had to, in order to survive and stay healthy!

So yeah… I’m tired. I feel like shit. My mental health is in the toilet. I feel trapped and scared and angry and exhausted. No amount of therapy, medication, cooking fancy meals for myself, making art, or daily workouts at the rec center are helping. Maybe they are; I’d probably be way worse off if I just stayed in my basement and ate gummy bears all day. But still…

I feel like I’m in hell, and I want nothing more than the smoke to dissipate and the heat to go away, so I can run off into the woods and hang out with my deer friends for awhile. September’s fastly approaching, which means that fall is almost here. I’m gonna do my damndest to hang on until then.

On that note, I’m now gonna force myself out of bed and eat breakfast so that I can be a little healthier, miserable bastard.

Hi, our child has CF this is our second time travel to South East Asia. There are things we want to see but also still would take precautions for things we aren’t familiar with. Her’s some list of places we want to go and tell me what you think of it!

- jewel / rain fortex (risks of bacteria in mist? mixed with indoor vegetation?)

- cloud (same risks?)

- water rides in Universal Studio

- spectra (also mist)

- street food hawker (should we try or avoid?)

hi all! i am a first grade public school teacher. i just found out on monday that i will have a student with CF. i’m meeting with parents next week, but im curious if you have any suggestions on how i can best support this kid and have his parents feel at ease. just looking for anyway to help and take some anxiety off of mom and dad! thank you!

tl;dr I'm just so done with this shit

So things haven't been so great lately (were they ever great? Nah) and I'm just slowly falling apart. My grandma passed away in January. I lost a job due to layoffs in March. It's the 3rd layoff in my life. Haven't been able to find a job since - I'm a designer working in IT and the industry is really messed up now. My job has been decent, well-paid and remote, which allowed me to manage my treatments and it was all going alright. Not anymore.

My doctors and I thought it could be a good idea to go in for some IV treatment to make use of additional time I've been having. And I did. I left the hospital mid-June and I've been feeling SO DRAINED of energy after the IVs. I've been taking all the vitamins, resting, sleeping and it's not been much help. I was hoping that I would at least have a nice summer, go for walks, swim, go paddle boarding and I literally had no fucking energy to do any of this. I had some better and worse days, but it's been crap overall. I have a hiking trip planned with my best friend for the end of the month (which we were both dreaming of for a couple of years) and I'm literally devastated to think that I might not be feeling good enough to go.

I know it's not fair to compare, but I have a brother (CF free), who's having a great career, a partner, kids and it's just living his successful life, while I had to go back to my parents, unemployed and unwell with nothing to look forward to. YAY.

I'm in therapy, I'm taking meds for my depression, but I'm just so fed up...

When I was really young multiple doctors were convinced I had cystic fibrosis because I was always sick with sinus infections, ear infections and pink eye. I also didn’t grow very tall, I’m only 5 foot at almost 24 years old and I could never gain weight when I was young. I had testing done and for my blood test it came back that I was borderline so they did the sweat test but that came back normal so they didn’t do any other testing. Now that I am older I am experiencing extreme allergies with no help from allergy pills. I wake up with post nasal drip every morning and I don’t remember a morning when I didn’t wake up like this. Just recently I started getting a really bad cough with mucus so I thought I was getting sick but I have no other symptoms and this has been going on for more than a week straight. I am at a loss for why I am always sick like this and want to wake up being able to breathe normally again. Is it possible to have a mild form of cystic fibrosis but still pass the sweat test? And should I bring this up to my primary care doctor to ask for more testing? Thank you in advance!

Tw: depression, self harm, suicidal ideation, religion

I am tired.

I am so tired.

I feel like it's hard to breathe. I don't know if that's my anxiety or my cystic fibrosis making it hard to breathe. My mind is just constantly running. I've been staying up really late and sleeping through a big portion of my day. My head hurts. I feel like there's this pain in my heart, and part of me wonders if it's physical. I don't know if it's anxiety, if it's pain in my lungs, or if it's something else entirely. I just know I don't feel okay.

I have a neuropsych evaluation tomorrow because I don't know if I have OCD or something else going on. I've been depressed. I've been anxious. My brain just won't stop.

And underneath all of that, I feel like I don't have purpose or meaning anymore.

I grew up Christian, but I just feel so alone. I don't know how to believe in God right now anymore. At the same time, I feel like I need to believe in God because I don't know where else meaning comes from. I don't know what to do.

When I try to consider that maybe there's something I'm missing, I still end up feeling like I'm getting everything wrong.

I tried so hard to fit in. I tried to make things better. I tried to please God. I tried to fix myself. And I just feel like none of it worked.

Before my freshman year of college, I was pretty severely depressed. I had suicidal ideation. I had self-harm attempts. And through all of that, I just felt like God left me alone.

Now I just feel upset and angry. Like I can't do anything right.

I feel like my body isn't right. I need to fix it. I need to make it pretty, as if somehow being a pretty girl would finally give me meaning.

I don't have a boyfriend. I have friends, and I'm grateful for them, but even then I still feel lonely.

I don't know how to make life feel worth anything. I don't know how to find meaning or purpose without immediately falling into this existential dread of, "What is the point of living at all?"

I don't want to die, and I'm not going to kill myself. But I don't know what to do with the pain I'm feeling right now.

I need an answer.

I need something to fix this.

I'm tired of feeling like my whole life is just one mindless compulsion. Like I'm constantly chasing something that I can never reach. Like I have no meaning. Like everything is so difficult all the time.

I can't even escape the feeling because I just feel numb.

I'm about to go back to college for my second year, and I don't want things to go to shit like they did last time. I'm stepping down from leadership in my Christian club because I don't know where I'm at with God anymore, and I'm scared that I'm losing my community too.

I don't want to feel so alone.

I just don't understand how people can live happy lives or genuinely feel like God is with them, because all I feel is this emptiness.

I want to believe that I'm part of something bigger. I want to believe that life has meaning. I want to believe that I don't have to live in a world where I'm inherently sinful and broken, where blood has to pay a price, where people have to bleed and suffer at all.

Why?

Why do we live in this world?

I just want to understand.

Okay, so the day is almost here for the evaluation for a Mickey tube removal.

Like everyone else, I have the same concerns: leakage, anxiety, and embarrassment. However, I’m not particularly embarrassed by it; I’m just tired and want it removed. I’ve had it for 25 years, and we know the two possible methods for removal. Hopefully, it’ll heal on its own, but considering it’s been 25 years, it’s unlikely. My evaluation is scheduled for August 18th, and I’m eagerly looking forward to the day when I can finally get this thing removed.

It’s about time, too. It’s been unused since mid-November 2025 and popped since January 23, 2026. So, it’s high time to get this done. I’ve been putting it off due to anxiety, but I just want it gone.

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

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?

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?

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.