u/Zealousideal_Bad6829

I’m 23y/o USA Cf’er with what people would consider atypical CF (was diagnosed at age 10 because my birth state didn’t start screening for CF until the year AFTER I was born) and I am still fascinated by the fact that the Vest treatment is mostly, it not fully, an American thing. For years, I thought everyone did the vest because that’s just what you do, right? Wrong! It’s not a thing outside of the USA!

Growing up, and still to this day I’m told to do my vest treatments because it’s the “best” form of airway clearance, yet I never felt that the vest ever did anything for me. When I was younger, I had the Hill-Rom vest and when I was a teenager, I had the Monarch. I rarely, if ever, used the Monarch (or the Hill-Rom if we’re being honest) because it felt like the most useless, EXPENSIVE, piece of crap ever.

Come to find out years later on Reddit of all places that the Vest is an American thing and that no other CF’er outside of the country uses one! This finding surprised me but also didn’t at all because the vest always felt a bit gimmicky to me (this is just my personal experience)

Instead of the vest, I do Autogenic Drainage as a form of ACT and it is 1 million times more effective (again, in my opinion) than the vest has ever been.

With alllll that being said…
Are you a CF patient in the US who uses the vest? If not, what do you do for ACT?
Are you a CF patient outside of the US? If so, what do you use for ACT?

EDIT: typos

Two of my coworkers are sick with a cold. One of the two joked that “someone got them sick” and looked directly at me when they said it. I said “l can confidently assure you that I was not the one who got you sick.” They then say “welllllllll someone did…”

Like it’s so funny when people say these things because yeah my cough, albeit, nasty crunchy cough transmitted my CFTR genes to you, therefore infecting you with CF. Sure, Jan. 🤣

I don’t blame them that much, because I haven’t disclosed my CF, but again it’s so funny because why would you even say that to someone 🤣

When people say this I want to pull the terminal illness card and make them feel realllyyyyy awkward and bad about themselves but choose not to. One day I will, and when that day comes Ohhh boy will it be fun

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.

Ive seen mixed responses over the years and wanted to know if anyone else has similar experiences with their modulators (I take Trikafta so Im basing my experience off of that but I’m curious if you notice this with other modulators)

- After taking the modulators as intended for a few weeks, do you notice that you produce less phlegm? Or just no phlegm at all?

- Do you ever stop taking your modulators and then start on them again after a few weeks? If so, do you start to cough up more phlegm after taking the modulators?

- Do you notice that one pill gives different effects? (EX: I notice my orange Trikafta pills will make me cough up more phlegm compared to my blue ones)

Im curious about this because during my outpatient appointments in the past, I could NEVER cough up any sputum samples because my Trikafta “erased” it all, so my doctors would send me home with a sputum sample cup to collect on my own time. But at my most recent appointment, I didn’t take my trikafta ≈3 days before my appointment but I did take 2 orange pills the morning of the appointment, and I was easily able to cough up a sputum sample for the first time in a few years.

While I know I’m not taking my modulator the intended way, and what I’ve experienced is probably a result of that, but I still would like to know if anyone else has had similar experiences.

Do you see the same doctors every time you have an outpatient visit? (same CF specialist, nutritionist, social worker, etc?)

Do you take enzymes?

Do you take any modulators? If so, which?

Have you ever switched from one modulator to the other?

At what age were you diagnosed?

Are you happy with the care you’re receiving at your hospital? Do you wish something was different with how your clinic operates/treats you?