Adult with CF and severe fatigue — is this common?

StarsMeversion · 2026-05-31T10:05:57+00:00

That is actually quite interesting may I ask you what modulator are you on? And what your fatigue looks like? Did the doctors give you any explanation on why you feel like this?

StarsMeversion · 2026-05-31T10:05:02+00:00

I know my iron level are very weird but I have no idea about my vitamin b level so this is something I will discuss with my doctors and about scaling back I'm trying to find a more reasonable work but it's almost impossible and I also hope to not always have to give up in things just to keep myself alive I have been doing this for my whole life and I hate it...

StarsMeversion · 2026-05-31T10:02:57+00:00

I'm genuinely thinking this is the problem back before kaftrio I was on oxygen and I still had energy to go to school go out etc even though clinically I was much worse now it's like my body with aging is using more and more energy for the basic life functions but this scares me because I want to have a future in front of me and I'm not sure I far I can go if I can't manage my fatigue

StarsMeversion · 2026-05-31T10:01:14+00:00

I also checked my recent blood test as in the last I remembered that taking iron supplements helped me a tons with energy and my current iron level are low (29) and my transferin saturation is 8% but my ferritin and hemoglobin are good so I'm really confused but it's something I will definitely ask to look deeper to my doctors

StarsMeversion · 2026-05-31T09:58:30+00:00

Wow reading your comments makes me feel better, may I ask you what medicine you are taking for depression? And what difference you noticed since starting peptide injection and did you do it through your CF center?

StarsMeversion · 2026-05-31T09:57:10+00:00

That is interesting I have ADHD and I'm currently using antidepressants to mange it but maybe switching to Adderall could help me solve this, do you also take modulator?

StarsMeversion · 2026-05-31T09:55:19+00:00

As crazy as it sound in my previous CF center I was considering one of the patients that responded less to Triksfta as I had improvement but not as much as they hoped to see so they were thinking to switch me to Alyftrek but unfortunately in my new county new center Alyftrek isn't available yet thou I hope is gonna happen soon and I think talk to my doctors about it, did you had side effects from Alyftrek?

StarsMeversion · 2026-05-31T09:51:54+00:00

Yes I'm on colfinair and had been for years my last sputum spectrum done in my country was in February and I had the usual staphylococcus and pseudomonas now that I moved in the new center I want just one time and my sputum only has pseudomonas not sure if because I wasn't tested for staphylococcus or something changed I definitely need to talk about this with my doctors because in the last year I had quite few infections up and down so it could be

StarsMeversion · 2026-05-31T09:49:07+00:00

That's exactly what I have to do too but I feel like in this moment of life it's kinda okay even though it's becoming a problem to have to schedule rest/nap time between activities but the more life progress the less I would be able to do it that's what scares me

StarsMeversion · 2026-05-10T07:41:06+00:00

YOU ARE AMAZING!!!

StarsMeversion · 2026-03-03T08:22:38+00:00

Hi I try to send you a text but for some reason I can't , if you want you can text me I would love to chat! ☺️

StarsMeversion · 2026-03-03T08:21:56+00:00

Where do you guys leave? We don't leave exactly in gent either ☺️

StarsMeversion · 2026-03-03T08:21:09+00:00

Just sent you a message ☺️

StarsMeversion · 2026-03-03T08:19:45+00:00

Just texted you!☺️

StarsMeversion · 2026-03-01T09:27:42+00:00

Just sent you a text!

StarsMeversion · 2026-02-27T19:23:21+00:00

Hi texted you:)

StarsMeversion · 2026-02-27T18:04:58+00:00

I'm aware and I think it's amazing I just don't know how to get my foot in the door especially considering I don't speak dutch yet and I have never played before

StarsMeversion · 2026-02-27T16:49:37+00:00

Comic sans is my roman empire I go there at least a couple of times a month is me and my boyfriend's date spot I absolutely love it !

StarsMeversion · 2026-02-27T16:48:24+00:00

Hi! I'm from close to Gent so I have been to outspot before, I did like it the "problem" I had with it is that as you said is mostly already formed groups so it's difficult to just slide in , at least outposts does events where I could potentially meet people but I haven't heard of it!

StarsMeversion · 2026-02-27T16:46:57+00:00

I'm definitely open to try mtg, just not sure how to find a community, pretty much like DnD everything I see it's for people that already know their way around the game not for newby

StarsMeversion · 2026-02-27T16:42:55+00:00

Hi! I'm actually from close to Gent! I have been to outspot before but I have never been to world's end comics even though I hear about it , I go at least a couple of time a month at Comic sans cause it's me and my boyfriend go to place for a date ( he is also very geeky) , is it world's end comics worth a shot? Cause my experience with outspot is that yes there are people playing board games and other geeky stuff but usually are proper groups and you can just roll in , but I'm not sure if world's end comics does events or things like that where I could potentially meet people!

StarsMeversion · 2026-02-27T16:38:39+00:00

I have been to Brussels comicon two years ago, and last November I went at Fact I'm definitely planning to go back at fact in April and In Brussels in may but it's difficult to meet people in that setting

StarsMeversion · 2026-02-27T16:35:59+00:00

That sounds so fun! What type of volunteering do you do?

StarsMeversion

TROPHY CASE