r/CysticFibrosis

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

Has been on my mind lately and no one I've talked to in person seems to care all that much about the silly-ness of the situation.

My college has the sorority Delta Phi Epsilon on campus, and one of their philanthropies is Cystic Fibrosis. My best friend got into the sorority last year (and talked about me, her best friend with CF, to help give her a good reason to be in the organization.) I went through recruitment this semester and didn't get into the sorority at all. The person WITH Cystic Fibrosis is not welcome to join the Cystic Fibrosis sorority.

Right. This make sense.

In reality I understand why I was not invited into the org, because of a little bit of personal drama between me and one of the girls, but it's kind of a whole thing. It's just really frustrating to have the opportunity to be in a community full of people who at least slightly understand Cystic Fibrosis and not be allowed that community because of some petty drama. :-(

I'm the 19F that keeps ranting here recently about my hospital stay. After procedure to avoid pneumothorax they put me on high flow oxygen, yesterday they tried to mobalise me since I was on complete bedrest, but they took of the oxygen for wat 1 minute too long and it fell to 29. After that when they put me back on oxygen I had to put full pressure on my own to breath despite high flow oxygen being on 60LPm I think. I knew I wasn't overthinking when I skipped that 1 day of trikafta after 1 month of using it, everything fell apart after that day. Suddenly needing my oxygen again after skipping 1 day. Then yesterday they put me on another type of oxygen that uses a mask idk wat it's called but I can't speak, eat or do anything while I'm at it, but u can sleep for a bit. Which was the problem that I couldn't sleep bcuz of me needing to put full pressure on my breathing. Idk wats gonna happen next maybe finally lung transplant but idk wat my Dr will decide, but it's painful mentally and physically. This isn't even the USA, eu or any other high place that I can get accommodations for CF.

My cat started having digestive problems, and the vet eventually diagnosed him with EPI (exocrine pancreatic insufficiency).

So now I share my Creon with my cat. 😂 He needs pancreatic enzymes with every meal, just like I do.

I never thought my CF would be the reason I could help save one of my cats. It’s kind of funny, but also pretty special. ❤️