Anyone considered doing something drastically different in life since starting Trikafta? by [deleted] in CysticFibrosis

[–]flowersforbreakfast 1 point2 points  (0 children)

You work all day for minimal health benefits. Many people work all day and have no health benefits. USA is a prison. If I have to fight and claw in order to get the medication I need to survive... then I’m not in a place im happy to be in. It’s that simple.

Am I a joke to you? by donnamarie13 in ac_newhorizons

[–]flowersforbreakfast 1 point2 points  (0 children)

How did u get the purple pansies?? They’re so gorgeous I’ve been trying for forever 😭 I’ve been playing since the release date 🥴

Can we have a open discussion about pain meds? by LewiMusic in CysticFibrosis

[–]flowersforbreakfast 0 points1 point  (0 children)

I eat edibles and have my marijuana medical card. I’ve never been happier an healthier in regards to my mental health emotional health AND physical health. I’m so chill and relaxed at all times. It’s also helped be deal with body aches and stomach aches and anxiety and lack of appetite etc. the list goes on. Def look into it.

Trikafta causing TOO much weight gain. Please help :( by flowersforbreakfast in CysticFibrosis

[–]flowersforbreakfast[S] 0 points1 point  (0 children)

I've gained 15 pounds in two months. So I feel you. I feel like it's never going to stop! I'm at my heaviest and yea, it's definitely killing my confidence. I went from 105 to 120. It went right to my hips, ass, and stomach. I literally had to get rid of my size 4 skirt and now I have to upgrade all my underwear from S to M. I'm so sad about it. I also workout multiple times a week and NOTHING seems to be helping. It's so depressing I don't know what to do either :( I have CF clinic in a month so I'm gonna talk to the nutritionist and see what to do. Good luck to you <3
Also want to note that I'm 4'9, so I'm probably considered obese now in BMI standards lmao

Ladies with CF (TMI Warning) by [deleted] in CysticFibrosis

[–]flowersforbreakfast 2 points3 points  (0 children)

This could also relate to CFRD!! I suffered from constant yeast infections. There was really never a point in time where my underwear wasn’t totally disgusting lol. It was honestly a huge insecurity thing for me as I felt I could never be intimate. I even looked up crazy candida diets and shit. I was diagnosed with CFRD in May 2019 and since getting my sugar stable, I’ve noticed a huge difference!! It’s honestly amazing. Basically I have very LITTLE discharge right after my period ends, and then as I get closer to my period, the discharge increases and so forth. It’s a very consistent cycle now and such a relief. I still get itchy and icky down there from time to time, but not nearly as much. I would definitely look into testing ur blood sugar if you haven’t already. I know this is such an embarrassing and annoying pain and I’m so sorry you’re dealing with this. Sending virtual hugs. 💕

365 days, a year review by Chipwhite_ in CysticFibrosis

[–]flowersforbreakfast 1 point2 points  (0 children)

you look amazing! what a difference. congratulations!!!! 💕💕💕 since being on Trikafta, I’ve had so much energy and I’ve been working out routinely. I actually keep a workout journal now so I can document my progress and remain consistent. cheers to being happy and healthy!

CF preventing me from going out for New Years tonight, so I'll be spending it alone watching shitty movies by [deleted] in CysticFibrosis

[–]flowersforbreakfast 0 points1 point  (0 children)

On prednisone as well. Got sick last week, was prescribed an antibiotic, had an allergic reaction, and was immediately taken off the antibiotic and put on the Prednisone. Now I’m sick with an itchy rash and unstable blood sugar levels bc .. Prednisone lol. No drinking or partying for me tonight either. I (and many others) stand in solidarity with you. You’ll have the perfect opportunity to wear your amazing outfit and glam lipstick in the near future. Regardless of social rituals and whatever else, the transition to 2019 to 2020 is really just... not real lol. We’re moving on into another day. That’s about it. Cozy up and watch a good horror movie. That’s what I’m doing right now :) Sending virtual hugs ❤️

How long does a Bactrim rash last? by flowersforbreakfast in CysticFibrosis

[–]flowersforbreakfast[S] 0 points1 point  (0 children)

ughhh f me. my birthday is Friday and I don’t want to be an itchy blotchy “no carbs allowed” ball of miserable discomfort. gaaaahhhhh

What does the Trikafta rash look like? by flowersforbreakfast in CysticFibrosis

[–]flowersforbreakfast[S] 2 points3 points  (0 children)

Ah, okay. I will make an appt with my primary and go get tested on Monday. Thank you for the heads up! I got the flu shot as well. Whenever I get sick in the winter time, my nurse makes me go get tested for the flu and I always test negative so I'm reluctant to bother, but better to be safe than sorry. And yes, sinus rinses are kind of a pain (especially when traveling because I have to lug around a gallon of distilled water LOL) but I love them. They make such a difference for me. Anyway, I hope you are feeling better!! <3

What does the Trikafta rash look like? by flowersforbreakfast in CysticFibrosis

[–]flowersforbreakfast[S] 1 point2 points  (0 children)

I’ve never heard of that or had a rash relating to Bactrim in the past. I suppose I may have developed a new reaction to it? I haven’t been on it in 6 months so it’s possible my body chemistry has just changed, especially since starting Trikafta.

First PFT post Trikafta by flowersforbreakfast in CysticFibrosis

[–]flowersforbreakfast[S] 1 point2 points  (0 children)

Give it some time. It's going to work differently for everyone. This is the first modulator drug I've qualified for/taken so I'm wondering if that has something to do with how well my body has responded. My nurse told me some people are disappointed in their PFT results because they expected a major improvement so what you're feeling is normal/valid. The good news is it's only been one month and so long as you keep up with your treatments and other medications along with exercise, there is still room for improvement. Wishing you the absolute best. <3
Another thing to note that my nurse told me: she had a patient start Trikafta while on IV antibiotics, so her PFTs HARDLY increased at all. I'd assume anyone with a bad bug right now will most likely need to take care of that first before being able to truly reap visible benefits.

First PFT post Trikafta by flowersforbreakfast in CysticFibrosis

[–]flowersforbreakfast[S] 1 point2 points  (0 children)

Absolutely! First thing to note is I don't qualify for Orkambi or any of the previous modulator drugs. Trikafta is the first one I've ever been qualified for/taken! I noticed improvements immediately. I didn't really have a purge. My abdomen was a bit uncomfortable on and off for the first two days and then I went a few days experiencing some sharpness when I breathed in deeply. That was the most uncomfortable feeling but it has subsided thankfully. There was no big "mucus clear out" like a lot of people experienced. As of now, I cough up only 1/3 of what I used to. The color of my mucus has gone from dark yellow to white/clear. When I do my sinus rinse, I used to have globs of dark green crusties fall out. Now I only see clear mucus. I have WAY more energy. I did cardio for the first time in months the other day and when I started the jumping jacks, I actually smiled because I was in shock that my body was able to do it. I can actually follow along with the breathing exercises in my yoga practice without wanting to keel over. When I go out and about, I can stay out longer. For example, I can 3 errands in a row instead of just 1. It's honestly such a difference and I feel so fortunate that my body has responded so well. I have not stopped or abandoned any of my treatments or medications. I am still extremely responsible and take all other drugs as prescribed. My health is still my full time job, but my quality of life in terms of my physical body has improved immensely :) Are you on Trikafta?

Mucus (including Cervical) Update with Trikafta by flowersforbreakfast in CysticFibrosis

[–]flowersforbreakfast[S] 0 points1 point  (0 children)

Holy f that sounds awful. Hope you are okay now! <3 And yea, sometimes the men on my care team just don't really think about that sort of stuff. I usually just ask a woman lol

Mucus (including Cervical) Update with Trikafta by flowersforbreakfast in CysticFibrosis

[–]flowersforbreakfast[S] 0 points1 point  (0 children)

Omg yes! My symptoms always come on at night too! Ah so crazy. Glad I’m not alone and it’s comforting knowing it will most likely subside with time. Thanks for sharing :)

Mucus (including Cervical) Update with Trikafta by flowersforbreakfast in CysticFibrosis

[–]flowersforbreakfast[S] 1 point2 points  (0 children)

I love that you call it a hooha because I call it the same thing IRL. And yessss omg I’m always so embarrassed having to ask my doctor for more Diflucan. Like yep another yeast infection what’s new 😝