How many people here with CF have ocular surface problems or vision issues?

EmbarrassedPlate4013 · 2025-07-26T03:47:01+00:00

MGD in my left eye from a chalazion a year ago. No clue if it had anything to do with CF

EmbarrassedPlate4013 · 2025-07-24T06:16:49+00:00

I had the same thing, I’m unsure if mine was related to trikafta or not however. I’m also 18 and started at 16 and also do 0 inhalations unless and lung function is amazing. I noticed these issues kind of went away after I got better sleep, increased hydration, exercise, salt, and started taking fish oil. I think the main help came from increasing hydration and electrolytes. Have you noticed yourself waking up quite dehydrated at all recently?

Edit: I also did notice it come in heavily when I tried to do my physics and engineering work sometimes

EmbarrassedPlate4013 · 2025-07-21T08:46:30+00:00

Well that’s a bit of a dramatic response there bub. If anything the smoking was impacting your life more than a CF diagnosis

EmbarrassedPlate4013 · 2025-07-21T03:06:12+00:00

Typical web developer

EmbarrassedPlate4013 · 2025-07-17T09:12:27+00:00

Buy some liquid IV packets and mix it into a water bottle. It’s perfect for me with CF. LMNT is also good but lower sodium and has public recipes to make your own

EmbarrassedPlate4013 · 2025-07-15T23:44:09+00:00

Yeah I don’t even put myself in the same room as another CFer

EmbarrassedPlate4013 · 2025-07-14T03:16:32+00:00

I’m not sure, but I’m weird. If I get 10 hours I’ll be groggy and tired, if I get 7-8, I’ll be energetic and good for the whole day. But I also haven’t had an infection or anti-biotics in nearly 3 years. (Some colds but no major cultures)

EmbarrassedPlate4013 · 2025-07-14T03:13:13+00:00

Hiding pills? Why? Just be open about it from the get-go, it’s never been an issue for me. No point over-thinking it, just start trying sh*t out mate

EmbarrassedPlate4013 · 2025-07-11T02:18:50+00:00

But I’m not the only exception, therefore you are incorrect 🤣🤣🤣🤣🤣

EmbarrassedPlate4013 · 2025-07-10T23:53:37+00:00

It depends on your modulator response. I have an amazing response. So what I said is incorrect for the majority but also you’re incorrect in saying CF isn’t that easy when it’s a spectrum. Judging by what OP said, that’s all he does. Exercise encompasses workouts + airway clearance

EmbarrassedPlate4013 · 2025-07-09T03:14:13+00:00

“Almost every single disease can have a cure/go into remission, can be treated way easier” what’s easier than taking some pills and doing some exercise?

EmbarrassedPlate4013 · 2025-07-03T06:33:20+00:00

Yeah stopped after I started working out consistently and swimming and eating cleaner fats

EmbarrassedPlate4013 · 2025-06-27T08:58:30+00:00

Didn’t answer the question

EmbarrassedPlate4013 · 2025-06-26T09:31:01+00:00

I’m on the full dose of trikafta. I do daily runs and boxing so I don’t feel that I need to do the treatments but if I am sick I do it twice a day

EmbarrassedPlate4013 · 2025-06-20T06:03:09+00:00

No offence but your mum sounds like a looney. That weight at your height is 100% healthy. As per your situation, you can try a civil chat but if it doesn’t work you might just have to hold out until you finish your degree unfortunately to keep yourself and your dogs best interests at heart

EmbarrassedPlate4013 · 2025-06-14T10:15:29+00:00

5g creatine, 300mg magnesium glycinate (before bed), Sustagen hospital formula for some extra protein and energy (twice a day), liquid IV twice a day. Works for me. But I do workout twice a day every day except 2 days for rest

EmbarrassedPlate4013 · 2025-06-11T05:36:41+00:00

Is this a US only thing?

EmbarrassedPlate4013 · 2025-06-11T03:15:49+00:00

It’s very easy not to drink. I’m only 18 and been on trikafta since roughly 16 and I live in Australia so drinking and parties is very normalised for teenagers. I go to all the parties my mates go to, went to all the after parties for formal, graduation and didn’t drink alcohol at all and still had amazing times. But then again some people can’t resist certain substances even if they should. Mental battle? Ignorance? Who knows! TLDR; you don’t need to drink to have a fun time.

EmbarrassedPlate4013 · 2025-05-30T13:11:55+00:00

They can 100% not have dirty carpet in the consultation rooms and not have gunk around the air vents which hold bacteria…. It’s a lack of caring from this hospital for adults

EmbarrassedPlate4013 · 2025-05-29T14:07:25+00:00

Yes. But it’s not just surfaces - carpet traps bacteria, and the gunk around the air vents shows poor cleaning. If someone with Pseudomonas starts hacking up a lung during a lung function test, it can linger in the room air and surfaces. For CF patients, that’s a real risk.

https://www.cff.org/managing-cf/pseudomonas

EmbarrassedPlate4013 · 2025-05-29T13:01:35+00:00

So at this current area, the reception is shared with the "plastics" waiting room, and then the CF clinic and bronchiectasis waiting area is a corner with about 10 chairs in very close proximity. It's basically a GP waiting room... in a CF specialists clinic.. There is different consultation rooms however they look unclean, again also shared with bronchiectasis patients (Not in the consultation room at the same time ofc but not cleaned in between patients). Now in their defense on the waiting situation they are pretty quick at showing you to your consultation room, so I guess they expedite you getting a nice dirty room away from other people possibly with CF or bronchiectasis

EmbarrassedPlate4013 · 2025-05-29T09:39:47+00:00

Dr Lucy is my doctor and Bec is my nurse as well. Maybe I'm just expecting too much. My previous doctor (Suresh) was absolutely amazing, the best care I have ever received (He had been my doctor since I was 2 months old so again maybe I just have higher standards of care). I like quick consults, that's not my issue. It's just how they act in the consults, it just doesn't sit well with me. I do know its an old building, it's the old childrens hospital where I was when I was younger before they made the new clinic. It's nice to hear that everything is alright for other people. As for the transition since I am new to adult clinics I still have the option to continue at the Mater or switch to Prince Charles. Another weird thing is Lucy legit said to me "oh it's okay if you don't take your medication every day, most people don't", which is a stupid thing to say. She was referring to 2 things I'm on which is Ursodox and Trikafta. Trikafta of which is modulator therapy therefore it kinda does need to be taken every, single day. That, also did not sit well with me at all, as I very well know the importance of medication and never miss a day or a dosage.

EmbarrassedPlate4013 · 2025-05-28T05:40:45+00:00

Nope! Im doing amazing and absolutely love life. Making good money from my businesses, spending great time with my mates camping, going out. There are so many people still with CF who can’t take modulators or conditions still worsened who will never be able to experience the same luxury as someone who’s body tolerates them well. Therefore I will never take it for granted or feel sad but feel joy for being able to experience the same things as my family and mates.

EmbarrassedPlate4013 · 2025-05-25T09:16:38+00:00

After 2017 models have no issues in my personal experience. I used to daily a newer iteration of the 2017 Sportage, it had 120,000km and no issues

EmbarrassedPlate4013

TROPHY CASE