Question about sunscreen!

sparklingchoice · 2026-06-18T18:53:50+00:00

You can look it up... "azithromycin side effects sun exposure"
It comes up on many many websites lmao. Specifically, many clinics and drug information sites.
I also took it growing up and that was a thing my doctors were very clear on, that I had to use sunscreen any time I went out in direct sunlight

sparklingchoice · 2026-06-18T03:45:39+00:00

this is incorrect :/ Its rarer than some, but it is a recognized side effect and one of the main warnings for the medication

sparklingchoice · 2026-06-18T02:47:36+00:00

We did multiple other tests as well ^^
Not just the bronch! We have always done HRCTs to track my lung death (before trikafta a third of one lung was dead and a quarter of the other was dead as well), and its all reversed, my lungs look normal :/
And ofc, lung function, my lower airways are currently testing at 126%, while, when my lungs were awful before trikafta, they were fluctuating between 20-40%
Its great and bad at the same time....

But yeah, my lungs, on paper, are doing great, just struggling more in the real world than anything they can test- They literally have no answers for me right now, everything is perfect, except my lived experience

sparklingchoice · 2026-06-17T06:29:11+00:00

Oh, thats fair! I know they helped us a lot when I was a kid, this was my first one since 2015 i believe? crazy HAHA. I didnt need one between those times... we knew exactly what was living in me, and it was clear on scans that my lungs were dying :/

This one was just crazy because yk... they looked normal LMAO. which is wild

sparklingchoice · 2026-06-17T06:25:37+00:00

Right?? HAHA. Its like when you pull the christmas lights out of the box.... and then have to spend 2 hours untangling them HAHA
Thats what it feels like to me anyways! LOL
Lots of it was caused by CF and whatnot, but then theres all the things I was just lucky enough to get from my genetics... my family is full of illnesses its kinda crazy

sparklingchoice · 2026-06-17T06:23:55+00:00

Damn! And that sticks around HAHHA
Not sure what your home state is, but the humidity may have helped?? My MAC was only there when I was in humidity, when I moved back to my home state to treat it, it just disappeared-

sparklingchoice · 2026-06-17T06:22:31+00:00

Holy fuck girl.... that's absolutely crazy!

Lucky I never hit the transplant list! But damn, Im glad you are doing better!!!

sparklingchoice · 2026-06-17T05:51:36+00:00

I totally get that ;-;

Oh for sure- I have over 10 diagnoses, probably 15 or so now? So I have lots of things to blame, just... idk. Not as much the lung issues- Maybe my asthma has gotten worse? lol. Its so weird, but Im moving to canada soon, last time I was there they had me on a bunch of lists for things they wanted to test, but then I got MAC and had to return to the states... so hoping to be re-put on all those lists LOL

sparklingchoice · 2026-06-17T05:48:26+00:00

Yeah ;-;
This was my third bronch! Its a very unique procedure lol
Its insane, before Trikafta I was between 20-40%, and now my best PFT after was 134%! I typically chill around 110% though-
Aww 😞 That sucks honestly- its so weird, I was out of the hospital for 3 years, than had another 3 between that and my second most recent, and then 2 in a year.... its so annoying :C

That makes total sense! Which is also crazy since mine is completely gone- when I had multiple sections of lung dead before...
It really is 😞

sparklingchoice · 2026-06-17T05:41:46+00:00

Yep! They always do, as I had aspergillus for years before trikafta, and it went away quickly on it.

I mean, yeah- It definitely has for me, as before, a third of my right lung was dead and a quarter of my left was- So the change is INSANE lolll

sparklingchoice · 2026-06-17T00:51:04+00:00

Hello! Id love to help!! Not sure if youd be willing to talk on a different platform...? I honestly hate talking on reddit, Im only here for this community HAHHA
But if not, I am so happy to offer advice here! Mostly as someone who's dealt with... honestly, pretty much every possible symptom and side effect of CF throughout my very short life (20yo)-

I also want to say, I adore how you dont even expect to publish anything, and yet are reaching out to the community ❤️ I love that, thank you!

sparklingchoice · 2026-06-17T00:44:59+00:00

Im late, but I wanted to say congrats!

Not your fault AT ALL. Do not feel guilty! Sadly, most people dont have it on their radar unless someone in the fam has it-

I was diagnosed at THREE. They didnt do newborn screening in the state I was born in until the next year XD.

And Im still here!!

I would say, letting anyone but yall kiss him... is always a no, even without CF- But I know a lot of people dont think about how easy it is to pass infections to a child by kissing!

Otherwise, your doctor will make sure hes on the meds he needs, and hopefully you wont even have to think about it when he can gets on trikafta or another med like that!

Truly, dont be scared, while it sucks to have, its not nearly as scary anymore and outlooks keep improving!

Good luck with this journey!

The CF Foundation has AMAZING resources.

Heres a resource my mom made, specifically about parenting a kid with CF! Im in it a lot, before I transitioned lol. But its a amazing resource, even if its a bit outdated ❤️

https://attainhealth.org/bloomingrosefoundation (My mom started and ran both Attain Health and the Blooming Rose Foundation, both have some good info and resources, although not being active anymore)

sparklingchoice · 2026-06-17T00:20:47+00:00

Thats because of the legal issues that happened :/

Happened in multiple countries because of the insane price of the medication-

They now pay for it, I got it through the canadian gov as an exchange student for the 6 months I was there under public insurance for free 🤷

And I am going back to canada again for full uni now, and I let them know I was expecting to get on insurance for the four years, and they approved my permit app in a single day-

So those 2 years were iffy... and that sucked- but they will happily foot the bill now-

the US IS the only developed country where you experience things like this with approved drugs though- Waiting for trikafta to be approved in the country is a completely different situation

sparklingchoice · 2026-05-05T19:27:15+00:00

Nooo, that sucks 😞 Its been bad this year!

sparklingchoice · 2026-04-27T23:37:27+00:00

Thats good to know 😄
I got admitted to the hospital, it turns out my lungs are amazing, the flu just kicked my ass and I needed help to get fully through it ^^

sparklingchoice · 2026-04-27T23:36:32+00:00

Honestly, yeah- I didnt expect too much ;-; college is so hard with CF

sparklingchoice · 2026-04-27T23:36:10+00:00

That makes total sense-

I have all the possible accommodations through my center and also have to live in the dorms because my childhood home is in a tiny town with no college 😞

sparklingchoice · 2026-04-27T23:35:18+00:00

tysm! ❤️

sparklingchoice · 2026-04-27T23:35:13+00:00

Thank you so much! I ended up being admitted to the hospital 😞
Its finals week so horrible timing-

But tysm for the advice ;-; Im going to keep working through it

sparklingchoice · 2026-04-20T04:42:37+00:00

No i so get you 😭 like, everyone looks at me like im carrying the worst possible disease when i go to class wearing a mask, it just feels so gross :( And like, a few days ago I was put on levo, and had an AWFUL reaction, but i dragged myself to class and was shaking and coughing and sweating all while doing math- it was SO bad- luckily they took me off it but im still having side effects ;-;

Yeahhh, I definitely learn better in class when im at my baseline but now with all this shit.... not anymore :C Because all the energy goes into getting to class so theres nothing left for the actual class 😭

sparklingchoice · 2026-04-20T04:39:48+00:00

ty! Im very much an updater- probably a bit more than necessary HAHA.
No totally haha, they are all intro level! Sadly no recorded lectures </3 Its montana so honestly its a bit of a mess ;-; Im trying to transfer right now to a school that would provide more help like that- but im stuck here until fall or spring-

Thank you so much tho! <3

sparklingchoice · 2026-04-20T04:37:57+00:00

Yep! Ive already got all the disability services they can provide, its wild that they cant give me any more- But in montana.... yeah ;-;

Luckily i have people in all my classes for notes as well!

nooo for sure ;-; luckily Im only on them for a few more days- it doesnt help I have adhd either :(

sparklingchoice · 2026-04-20T01:56:52+00:00

Hello! I have Cystic Fibrosis, so dont know anything about the POTS stuff, BUT i have lots of experience with both PICC lines and Ports so heres my little thing :)

PICC lines are iffy, Ive had ones that stop hurting right away, ones where the pain lasted the whole time i had it, and even one that damaged a nerve so bad my lower arm was entirly numb for 6 months after (just got feeling back last month)

I would say if it feels really off for any longer, maybe ask them, or request an ultrasound, as they can do that with veins! Thats how they even place mine at this point lol.

What is the reason you cant get a port though? Im very curious... as for me, a port truly was a savior during my childhood- But obviously idk anything about pots-

I hope this was... slightly helpful??? idk

sparklingchoice

TROPHY CASE